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- deleted user (Visitor)
- 2007-10-10 @ 19:11:46
As one who went to nursing school, I thought I knew something about this but we barely scratched the surface. This is most informative and I think it's great that you're posting it. Someone is bound to see themselves and go to the doctor. I think the docs are more than happy to prescribe antidepressants and would have the whole world on those and ritalin if they could. They are a good thing sometimes but it helps if you know what is causing the sitation.
[ Situation - lazy typing, perhaps over-tired when typing]- jackfrost
- 2007-10-10 @ 19:26:05
Thank you for your support if only one person gets some help from this then it was worth it.
When he starts it a guy called mark is going to tell his story with regards to his thyroid, from time to time could you drop in and say hi
http://www.blog.co.uk/user/ericgreenfingers68- Tracy (Visitor)
- 2007-11-30 @ 19:49:35
Your story is sooo familiar, I am a Fire Fighter and it took me a long time and five stone later to eventually discover the cause and have now just become stable but still with many syntpoms. However have just started a test on Armour (off the net)
[Either a phonic spelling - many people spell how they think it sounds. English doesn't work that way, or the n key is next to the m, so finger slippage]
and what a difference it's still early stages and i'm sure you have heard about it, but at so far its fantastic eating so much less and loads more energy plus hair and skin are good i really do recommend that you try it.
Keep well
Tracy- jackfrost
- 2007-12-01 @ 16:35:22
Yep I will consider Armour if this treatment does not work...i have spoken to the doc and surprise surprise he just gives a funny smile and tells me that the synthetic medication is better...I asked him how much did the companies that produce it earn in a year ...he didn’t know...i suggested he found out and then he would realise why no one has found a cure....it wont happen unless an independent body researches it...but that is a whole other story..
- Elissa Grunwald (Visitor)
- 2007-11-30 @ 20:10:34
Het there Jack Frost,
I have been suffering form Hashimoto's for a few years now. People try to send me to a shrink at first. I am a shrink and my emotions were wild. The pain I felt was proir to the diagnosis Depression and no one would listen to my symptoms. Freezing, swa;;owing disorders and such. Cramping and joint difficulty and weight gain and inflammation. I discovered that after a car accident my throat immediately sweled and my tounge didnt fit in my mouth. Now try to tell that to a GP they really think you are insane. Your website is valuable and I got your Blog through the Mary Shomron Thyroid about info and I reallt appreciated your sharing your story... My family sees me as a strong and powerful woman I do to but I am too tired to be strong. I go to work for 20 hours a week and suffer dearly but keep going. I am looking to discover what helps. I take 137 MCGs of Levothroid but the pharmacy is always giving me different generic meds that are not consistent. Thanks for your story Good Luck! Elissa- Kim Lock (Visitor)
- 2012-02-25 @ 21:03:04
Hi jack, Well I've just been diagnosed with hypothriodism and yes I indeed related to most of what you are saying. I believe I've had it awhile now. Thanks theres
[ There's needs an apostrophe - There is someone on my side. The ' replaces the letter i. ]
someone on my side. Kim :-)
- deleted user (Visitor)
- 2007-10-10 @ 19:56:03
Hi Jack. Well done you for making this blog so complete and informative. The scary thing is that so many of the symptoms are akin to other illnesses, particularly (for me) the link between the thyroid and the adrenal gland and stress. And if I can take issue with you on one thing - I am absolutely certain that your kids have always thought you were a great dad, but haven't always found it easy to show it when you were feeling at your worst. And I will call in to say hi to Mark. Best wishes, Ellie
PS It might be useful if you could put a date against each landmark of your illness/treatment to give a timescale, as I suppose merging them means that the dates of the original blog have been lost.- jackfrost
- 2007-10-10 @ 20:15:11
thanks for that you are right hypothyroidism is known as the great pretender as the symptoms can present in so many other conditions.
also thank you for your kind words regarding my kids..alas i may have blown it with my second eldest but thats another story.
and yep stupid old me i did put in the time lines but i re pasted it and missed them out so i will go and fix that now thanks- Ashe (Visitor)
- http://whatishypothyroidism.com.au
- 2014-03-29 @ 00:52:08
Ellie, I cannot agree enough.I have just found out I have Hashimoto's Disease and am looking for as much information as possible. This blog is terrific because it shows the journey and gives me an idea of what i may have ahead of me.- Peter (Visitor)
- http://theearthdiet.blogspot.com.au/2011/04/thyroid-natural-cures.html
- 2014-04-04 @ 02:55:07
Thanks for the brilliant and very comprehensive information
- deleted user (Visitor)
- 2007-10-10 @ 20:04:48
i've been following your story from the start, jack, and i will continue to do so.
i, and many other people, are rooting for you.
and , like ellie, i'll be sure to catch up with mark.
all the best to you and your family
kevin- jackfrost
- 2007-10-10 @ 20:24:45
thank you kev it means alot
- deleted user (Visitor)
- http://www.jenniferhunter.co.uk
- 2007-10-10 @ 22:47:42
It's a fascinating set of posts, Jack...especially because my hubby is you and your wife, Karen, is me, or was me, in a lot of respects...as I said to you before, I'm really sorry to hear that her ops didn't work out for her while mine appear to have done so...well, for now...how long this run will last is anybody's guess, but it's okay so far...the doctor who diagnosed my hubby didn't give him any tests other than blood tests...I don't think his cholesterol level has ever been tested...he was put straight on levothyroxine and it changed his life over a relatively short period from a man in a similar state to you prior to treatment to a completely new man...well, not completely...there were some side effects, which didn't go, but mostly it was just wonderful to see him so fit and well after seven or more years of just awful illness after illness and all the other unpleasant things that go with an undiagnosed under-active thyroid gland....I looked after him then, but he also looked after me while suffering from it when I was at my worst...what grieves me is that he could or should have been diagnosed far earlier like you...I just do not understand why the medical profession seems to miss symptoms that hit you in the face once you recognize them as a lay person, but a trained doctor can ignore them completely for years...same goes for me...if I hadn't been a 'difficult' patient, I'd be dead now of ovarian cancer...trouble is, if you start getting stroppy with doctors now, they just throw you off their list and leave you without a doctor at all...that's what mine did to me when I had cancer...actually, she did me a favour, if she hadn't and I hadn't been taken on by another doctor in the same practice, I would be dead by now...funny old life...and if we hadn't moved here where the local doctor recognized my hubby's problem almost immediately, he would probably also be dead by now, or his brain too severely damaged to ever recover...
Big hugs to you and Karen and I hope that your health continues to improve, and that Karen finds a way of dealing with her pain...- jackfrost
- 2007-10-10 @ 23:16:13
thank you for your kind words...I have argued with the doc about "Tests" they only tent to do the TSH and when it is normal thats it "You must be fine" so many people are treated and yes they feel better and ok there are some minor symptoms left but hey we should be grateful ....C p i want to be 100% i should not have to settle for feeling alot better.
Things they dont tell you like " Make sure that you always get the same brand of thyroxin as to change brands can cause you problems" dont take vitimins at the same time ..can cause problems...and so it goes on supporting your adrenals is another thing...people often just keep quite as we feel that we are just moaning...your hubby will tend to accept that some things are not ok but hey i feel better than i did.. No he deserves to feel and be 100%.... sorry this was a rant ...
thank you again...- deleted user (Visitor)
- http://www.jenniferhunter.co.uk
- 2007-10-10 @ 23:38:02
Why shouldn't you take vitamins with levothyroxine? Nobody told my hubby he shouldn't take them, which he does...and he's really so much better than he was...he has been told he can take some other medication to cure the side effects of the UAT, but doesn't want to do that in case it messes him up again. At sixty, you expect the body to be less than perfect...so I'm not sure 100% fitness is possible as you get older even if you didn't have any disease present- jackfrost
- 2007-10-11 @ 07:21:55
Sorry i should have been more specific...you can take them but you take them in the evening. you should take your levothyroxine at as near as you can at the same time of day usaually in the morning some vitimins, vitimin C forinstance will reduce the absorbsion of the levothyroxine also you should ensure that the brand is allways the same, sometimes they give you it from a different maker and again it can have an effect. when you take the tablets they should be taken with water and then have no food for at least an hour...simple stuff like this which can just give us the edge. your right about getting older and the things that effect us ...when i say we should be 100% in mean in regards to the thyroid effects and of course it is hard to know which is which. Oh also some cholesteral drugs clash with the medication.- deleted user (Visitor)
- http://www.jenniferhunter.co.uk
- 2007-10-11 @ 12:25:58
I've shown hubby what you've written about and I found on the Net as well and he's going to change his time for taking his medication because he does take vits usually within a relatively short time of taking his levothyroxine...will be interesting to see if there's any change to his health...or his brain, which I tease him about as deteriorating rapidly...
- tylluanpenry
- 2007-10-11 @ 09:14:08
A wonderful - and I'm sure, helpful - set of posts. It's really good to have information like this out there in the public domain, you really never know when you're going to need it.
Whenever I get ill I seem to have something really weird and that's when stuff like this on the internet really comes into its own.
Thanks for posting!- catzycradle
- 2007-10-16 @ 16:26:25
I was totally absorbed by your posts. You would think that doctors would take certain symtoms and piece it together. Most of the time I come out of my doctor's surgery thinking I have just wasted their time. Some of those symptoms you listed seem familiar to me, but overlap with symptoms of other conditions. I have currently complained to my GP that something I have been suffering with for about 18 months now,namely thrush, has to be looked into further as they have given up on medications which don't work and make it worse. They just smile and say I have to learn to live with it. I have been on the internet to seek knowledge on the condition and have tried changing my diet and taking herbal remedies and exercise etc. Luckily my hubby is very understanding, but it has affected our newly wed life together. It started when the docs prescribed the Progesterone only contraceptive pill and even though I took myself off it recently, I still get symptoms two weeks out of every month. Now look who's ranting! Anyway- I thought it was a very informative blog and I'm sure plenty of people can learn from your experiences. Love to you and your family. And keep us updated. Catzy x- jackfrost
- 2007-10-16 @ 16:54:59
trouble is that Hypothyroidism and hypertyroidism are known as the great prtender as the symptoms can present as something else. Also our diets dont tend to support our glands so much these days..E,g we tend not to eat offel anymore and grans don't make us eat it like they used to...but it stands to reason that whats in liver is what our liver wants...same goes for kidney's etc. as long as you know what supports your glands then if you dont get it from one place you look to another .E.g selinium. you can get that from Brazil nuts instead of liver..sorry if off again there is so much about the thyroid and other glands we take for granted
im loathe to give to much advice as i am not an expert however i am keen to make people aware.
anyhow thanks for your words and i will add things to the blog as i experience it, off to the doc tommorow to have a fight about medication so watch this space.
- avrilo
- 2007-10-17 @ 01:07:30
Thanks for posting that, but as you say, it helped you and hopefully will help others.
I haven't got that problem, but a friend has, so it's useful information.
As you say, knowledge is power. When I was told by the surgery receptionist that my blood results were ok, I asked to look at them. She gave me a strange look, as if to say 'who do you think you are, wanting to check your results?' As a midwife, I do know a lot of blood values, and the ranges that they have can be misleading, but some doctors don't question it, even if there are symptoms. So good call on that one.
Keep well!
avril- jackfrost
- 2007-12-01 @ 16:37:44
i missed your post...sorry ...thanks for your support.
-
Hi Jack, good for you that you have the courage to write about it and in fact help someone somewhere who might have these symptoms and go and get help -glad to hear it is slowly improving obviously the long haul but the only way is up
- Ciara (Visitor)
- http://life-w-hashi.blogspot.com
- 2007-11-30 @ 10:02:27
believe me, i know exactly what you're going through. i was diagnosed back in 2003 w hashimoto's. and for 4 yrs, or possibly even longer, i went undiagnosed/misdiagnosed. it was frustrating for sure to not understand why i felt like i was 'here' but 'not here', that at any moment i probably could've fell asleep at the wheel, the massive hair loss, the mood swings b/t depression and irritability, and the rapid weight gain was happening. i love how docs first said it was prob stress, and because my levels were in the 'normal' range i was fine. i was on the upper end of that scale. i also think my disease had a little to do w my x husband leaving me. he couldn't deal w the mood swings, me being tired all the time, and he basically accused me of being a hypochondriac. i'm sure it's not the whole reason, but it did its part.
i also blog about my daily struggles w the disease on http://life-w-hashi.blogspot.com.i haven't posted in awhile, but i do try to update now and again. i also blog onhttp://ciarasramblingsandwhatnot.blogspot.com- jackfrost
- 2007-12-01 @ 16:54:10
Hi its jack frost thanks for your comments on my blog and your support...i read from this that you are having trouble with back pain...I had the same i thought it was a bone thing....it was my adrenal gland it was fatigued and needed support….i ate stuff with things like selenium…you know fish Brazil nuts and stuff…there are lots of things you can do but I know that like me you will find out …knowledge is power…it was just a thought pop by every now and then and let me know how you are doing ditto likewise for me…oh and have you seen this site you may be able to give some advise to those on it…check it out. thanks again for the suppot
http://experience.patient.co.uk/discussion_list.php?d=118
Jack frost
- Nick Whetstone (Visitor)
- 2007-11-30 @ 11:21:11
Hi Jack,
I'm another 1 in 1000 male with a thyroid problem. I went undiagnosed for at least 10 years, probably a lot longer than that! I am also diagnosed with the dreaded ME although I am still not sure if the two are connected.
Good luck with the endo appointment but if you don't think you have made any progress after seeing he/she, drop me a line and I may be able to help. I've managed to educate my endo and help both myself, and other hypo sufferers around here too! It took a lot of doing but I didn't get any real improvement until I did this and got the 'real' treatment (they would rather we didn't know about)! ;-)
Cheers,
Nick.- jackfrost
- 2007-12-01 @ 16:30:31
Im sure that i will fall out with the endo as i am going to tell him what I want him to do for me and not just what he wants to do...I will listen and have an open mind...we will see>
- Anna~Anna (Visitor)
- http://360.yahoo.com/anna_loves_life
- 2007-11-30 @ 12:17:06
Dear Jack...
I am not male, however I DO wonder if I was male, how long it would have taken me to be diagnosed as hypo.
As it was, I had just given birth 6 weeks prior and had gone in for a routine check. My thyroid levels were included in that blood test. (My youngest will be 21 in January, so that gives you an idea of how long I have knowingly been battling this).
Up the dosage, down, up, down, up, up, up, down...
And so it has gone for these past 20+ years...
As I type, my fingers are almost frozen, my feet too. And never mind about the hair. (Oh wait, that could all be because I live in Green Bay, Wisconsin, USA too).
I am currently on Armour Thyroid, and have had the absolute BEST luck with taking this med. (It also supplys T3; and I believe it is the only 'natural' thyroid supplement on the market at this time).
My blog url is attached, but I have not blogged too much about this thyroid issue.
And, as luck would have it, Yahoo's tag clouds are not working at the moment so it won't help to even click on hypothyroid link.
My levels at one point were about 39, and this was after I had decided to chuck the whole medication thing. I was actually off the thyroid meds for over 2 years.
Prior to stopping the meds, I had been on Synthroid levothyroxine, and it was truly making me feel worse... (as if I ever thought I could have felt worse to begin with).
After my own research online, I asked the Dr. to allow me to try Armour, (test results be damned).
He agreed to this, (knowing full well that I would have found someone else to do this for me if he wouldn't have). hehehe
I still have godawful migraines. And with the coming winter, I know the arthritis in my back will only worsen, (especially with the coming snowfalls that need shoveling)...
But does it all go back to my hypothyroid?
I am thinking that somehow it does.
This blog has been a God~send for me this morning.
While I am sorry that you are ill, I am happy that a man will take the time to blog about this all and to clue in the rest of the world.
...Not to mention the frustrated spouses out there. (I do not have a spouse, so that is a moot point for me).
Now go do your police work, with that compassionate head of yours, and be safe out there always.
XOXO
Anne- jackfrost
- 2007-12-01 @ 16:23:15
I hope you are getting better but keep researching i have found out so much. I am a bit reluctant to write about some of it as i am not an expert and I would hate to give the wrong advice...however I am strongly convinced that there is allot to be said for the right foods as |I have been supplementing my diet with stuff that supports ALL my glands and i feel better for it also Physio is great and getting my Dr to give me some anti inflammatory drugs helped with the joint pain...which in turn allowed me to exercise which in turn helped stop the inflammation ...things like that...your migraines could be as a result of missing certain minerals...one of my symptoms was head ache...I cured it by stopping alcohol for 2 months...headaches stopped...don’t ask me why...anyhow please use anything you want...between us all if we can help anyone recognise the symptoms early it can only be a good thing...if we can make people realise that they are not alone that is also good...have you checked out
http://experience.patient.co.uk/discussion_list.php?d=118
that would be a good link for you. Take care and please every now and then drop by and say hello
- Anna~Anna (Visitor)
- http://360.yahoo.com/anna_loves_life
- 2007-11-30 @ 12:20:15
Oh and I hope you will not mind that I would like to link to this blog in one of my upcoming blogs?
Please let me know if you do not care to have me do so.
I thank you again.
XOXO
Anne- Patricia Lewis (Visitor)
- http://sympatico.ca
- 2007-11-30 @ 14:13:03
I ahve just found your blog.Very interesting.I ahd my thyroid removed when I was 21 yrs old,that was56yrs ago.That was backin the days when they put ones head in a box and gave you oxygen(I think)to measure your thyroid.My first child was 5 mths old at the time.I then gave birth to two more children in the coming years,and I was on NO supplement.I should have been dead,and almost was.People made fun of me and called me mollasses,I would lie out in 90degree farenheit sun to try and get warm,no one understood what I was going through,not even me.Finally I told my doctor that I was gaining weight and was constantly cold.He said "And what supplement are you taking for your lack of thyroid?"."Supplement? Am I supposed to be taking something?".His answer was "You must be taking something,or you would be dead after 15yrs,without a thyroid.He immediately had a blood test done,In those days 1966 to be exact.it was 1/4 litre of blood almost and I had to lie down for an half hour afterward.I was then put on a supplement,and started to feel much better,but now at 77 yrs old I have had it cut down several times,and REALLY feel terrible,but Drs wont listen to my cries for help.So I must try to deal with this on my own.If there is anybody out there who can give me some advice on what to do to improve my life,I would sincerely appreciate.Thank you for letting me have my say.Keep up the good work Jack.Keep the faith.Patricia
P,S. I was raised in England during the WW11,in Kent.
Close Window- jackfrost
- 2007-12-01 @ 16:11:50
i bet the dr said something like well at your age you have to expect that things are slowing down etc etc.....rubbish I would love to know what your diet is like and see if you are supporting your other glads in the struggle...we tend to concentrate on just the thyroid but the others can have problems which we dont treat. find out all you can knowledge is power
- Claudia Finseth (Visitor)
- http://dragonflypond
- 2007-11-30 @ 18:14:12
Hi Jack,
I could relate to everything you said. For, while I've had Hashimoto's Thyroiditis for 30 years, my endocrinologist had to retire and my GP took over my thyroid care about 2 1/2 years ago. The first thing he did was drop my levothyroxine, which he had always felt my endocrinologist kept too high. Then he dropped it again six months later, and again three months later. I was now taking 1/3 less thyroxine dose than I had taken for 27 years, through pregnancies and everything else.
The result was a hypothyroid incident and the development of fibromyalgia. It's been like pulling teeth to get my GPO to listen to my symptoms and not the bloody blood tests. Finally, he began to creep up my levothyroxine again when I hit bottom and came in depressed and unable to think. Cretinism, that's called. Before replacement hormone was available, it used to happen to hypothyroid people eventually and they eventually landed in asylums, where they died.
Recently I went into my doctor feeling the best I have since he took over my thyroid care. My GP proceeded to talk about decreasing my levothyroxine dose again because "the blood tests are a bit high." I was outraged. As my GP only tests TSH, I finally asked my gynecologal nurse practitioner (someone who does listen to symptoms) to check my T3, T4, T7, and all show mid-range normal.
My son developed Hashimotos when he was a senior in high school. It is obviously genetically linked. I'm going to send him your website to read.
Thanks. Your blog is a laugh and a cry all in one. Mostly, it is something other Hashimotos patients can really relate to. All best to you. Keep being your own best advocate. Afterall, it's YOUR body.- jackfrost
- 2007-12-01 @ 16:08:06
It is so frustrating when Dr stick to "test Results" you were quite right to get the other tests done...and i hope you took a copy of the results for your own research....the only way we can help ourselves is to have the knowledge and that is the beuty of the internet...each of us needs to make our Dr's help us and make them understand that we know more than they do on our own illness...Hope it works out and don't forget to support your adrenel glands as well.- Claudia (Visitor)
- 2007-12-10 @ 00:42:31
Tell me more about how to support the adrenal glands.- jackfrost
- 2007-12-10 @ 07:37:18
The adrenal glands are your body's workhorses when it comes to dealing with stress. These tiny glands, each about the size of a walnut and shaped like a tiny pyramid, sit atop each kidney. The adrenals produce important hormones such as cortisol, an energy releaser, and pregnenolone, the precursor from which almost all your body's steroid hormones are made, including DHEA, progesterone, testosterone, and estrogens. Pregnenolone is an extremely important memory enhancer, and not only does it make you smarter, it also brings about feelings of well-being and enhances your ability to deal with stress. Weak adrenal function can have a variety of symptoms, including depression, insomnia, and lowered immune system function.
There can be many contributing factors to adrenal fatigue, though these can almost all be lumped into the category of 'too much stress'! Overwork, sleep deprivation, poor eating habits – particularly too much sugar, injury and illness, and over-use of stimulants are a few common causes. Addressing these issues are of primary importance for long-term regeneration of the adrenals and their hormonal output. However, natural adrenal supporting essential oils used in aromatherapy can be very useful in bringing balance and assisting in restoring adrenal function to normal, healthy levels, in mild-to-moderate cases of adrenal fatigue.
check out this link, I eat brazil and walnuts to help get the selenium that is so good for your adrenals, a lot of the hypo symptoms can be mirrored by adrenal fatigue and are easily ignored, a lot of Doctors will dismiss adrenal fatigue as a myth, but it seems logical to me, find out what you can and it makes sense to support all your glands....Oh and cut out excess salt that will also help.
http://www.naturalways.com/adrenal.htm
let me know what you find out, remember it is about how you feel and how you help yourself..knowledge is power.
- Ed Arnold (Visitor)
- 2007-12-01 @ 04:59:16
Jack - a lengthy but still interesting story, at least to another old "git" who has had a very long history with hypo.
I noticed you mentioned that you had antibodies. Have you considered this could be caused by a food allergy? Gluten (from wheat, barley, rye) is the most common culprit when hypo is due to food allergy.
You might want to read the story of my illness to get some additional ideas. You'll find the text at:
ftp://ftp.ucar.edu/era/mi/MysteryIllness.htm- Colin Crombie (Visitor)
- 2007-12-01 @ 17:44:42
Hi Jack
Just found your blog from a link from Mary Shomon's blog.
Fascinating - have you seen the endocrinologist yet? I'm up in Scotland, and wonder how long it can take to see these specialists on the NHS. If you've had that appointment, any news?
I've suspected I've had hypo for years. I'm a 51 yr old man. Lived abroad for a long time, and many years in the tropics, in Belize. Came back about 10 years ago, and at first I thought my always extremely cold hands and fatigue, among other things, were just adjusting back to the UK climate.
I say suspected because I've not been diagnosed. Your story gives me more confidence now to approach the doc about this next time I see him. I've been reluctant to see my NHS doc about it because the few times I have seen him, it's always a cavalier attitude to anything, and the typical NHS in and out in five minutes treatment. Plus, when I initially read up about this, I came across info about a top UK endocrinologist in Edinburgh who is/was very influential on UK treatment, and is very much of the old school of thought - and very anti-natural treatment too. I didn't even realise the natural stuff is available in the UK - is it available on the NHS?
Over the years I've made my own attempts at self-treatment - no drugs, but just attention to diet and supplements, a bit like yourself. I'd be more careful about recommending iodine or a lot of seaweed - this can cause a very adverse reaction - rocketing blood pressure for example. It's not the right thing for everyone. Basically it's like you say - pay attention to what your body is telling you.
You'll doubtless have a lot of US readers now with the link from Mary Shomon, who won't realise how utterly frustrating and depressing it can be dealing with the NHS - you do mention some of this - and there's always such a wait (months, years....) to see any kind of specialist like an endocrinologist - it's very different from the treatment you can get in private practice. I didn't think I could feasibly 'shop around' for another doctor on the NHS - I thought I was pretty much tied to the choice at the clinic I'm registered with. I'd like to have confidence in the NHS, full stop, but I don't, and I don't really have any confidence in my local doctors, and the attitude I've met when I go armed with information about other matters - though I've yet to really confront them about hypo - or rather, work with them.
Thanks again for sharing your story.
Colin- jackfrost
- 2007-12-01 @ 17:55:50
if you pop back to read this colin thanks for your words and i have very fond memories of my time on St georges caye....and I'm glad you are checked out even if it is not thyroid ..if you keep checking what it isn't then you will end up with what it is..- colin crombie (Visitor)
- 2007-12-01 @ 22:34:36
So, you were one of those lobster-red limeys protecting the cayes from the Guats? I was there 8 years, teaching up in San Ignacio. Thought that tropic sun had scorched my old bones so I was going to be forever cold up here in the Arctic circle, near as damn enough.
Anyway, read my comment again man, I've not been tested yet due to my distrust and total lack of confidence in the NHS GPs, their attitudes eg to knowledge about hypo or its treatment, the time to see endos - and then their NHS-institutional reflex as well, etc etc.
I suspect I've got hypo, due to all my collected and continuing symptoms... getting by, but I know it could be better.
btw - what's Nick Whetstone on about - the 'real' treatment?
Good luck, and I'll follow your story to see how things work out. And just how long do you have to wait for your endo appointment?- jackfrost
- 2007-12-02 @ 09:05:06
Yep that’s me I had the terrible job of being a diving instructor on the Caye for 8 months ...still someone had to do it...i understand your mistrust. but you at least need to get your readings. your tsh,T4,T3, ..but of course you know this...as for the endo well it was arranged in 5 weeks...but I am a bit like you… my definition of an expert is
Ex = has Been
Spurt = drip under pressure
But to be fair our complaint to them is quite minor in the scheme of things....we need to be in a position that they have to listen to us because we have learnt so much about it...
Look at the site stop the thyroid madness this may be what nick is on about
http://www.stopthethyroidmadness.com/natural-thyroid-101/
this may be what he is on about...i have thought about natural remedies like armour but i will only go down that route if this one doesn’t work....which touch wood it is.
There are a lot of conspiracy theories such as why would they want a cure for thyroid when the pharmaceutical companies make Billions of pounds from the treatment...but hey that’s another subject.
Colin get yourself treated but steer them in the right direction and help the doc to help you...
Speak to you soon. I look forward to hearing how things go...
Jack
- Alan Keith Mitchell (Visitor)
- 2007-12-02 @ 03:45:48
Came across your blog for which many thanks. I have only recently been diagnosed with hypothyroidism and, to be honest, it looks as though I have caught it in its` early stages as it does not, in any way, seem as involved as yours. My next appointment is on 19th December and I do seem to be better armed (thanks to you) than I was before. Would it be asking too much for you to put in a nutshell how you started, progressed and now are almost successfully cured. Sort of in date order, if you know what I mean, so that I can compare my progression with yours. I notice you make no mention of how food and drink taste. I inadvertantly took some food back to a supermarket as I thought it was "off". Does everything have a sort of metallic taste, both food and drink?
Meantime, Jack, I will continually keep in touch and will let you know my progress.
Needless to say I am eternally grateful for all you have written, even if my paltry brain got confused at times with all the T3 readings etc.
Take care, and I hope you are soon fully recovered.
Kind regards,
KEITH- jackfrost
- 2007-12-02 @ 08:46:12
Oh yes the metallic taste....yuk...i have had that right the way through...glad you caught yours early...mind you in saying that i found that this complaint seems to be bespoke. In that everyone has a different experience some mild some harsh....i have come across some who have had such a bad time...
i am convinced the way forward is through the right food and to support your other glands...my theme really is one of self knowledge and for people to go out and learn all they can about the complaint and to help their Dr to help them ...it is easy for someone like me to say ..."do this ...do that but it may not be correct for others...also the other main element is letting people know they are not alone with this and not being a wimp....shout it out that’s what i say. I will write some more as i have one or two more thoughts but ...please keep in touch and let me know what you have found out and how you have helped yourself...thank you for your support and i look forward to hearing about your journey
Jack- Alan Keith Mitchell (Visitor)
- 2007-12-02 @ 10:24:40
Thanks for letting me know about your taste buds - a little comfort to know they were the same as mine - very metallic
My next appointment with specialist is on 19th December so will tell you what happens then.
Thank you for your quick response. I am very breathless this morning and no medication for it. Is there such a thing? lt definitely stopped me having a good night`s sleep last night.
Regards and thanks again,
KEITH- jackfrost
- 2007-12-02 @ 10:59:22
The test you want to get are TSH, T4,T3 you should also get your thyroid peroxidise antibody reading ( this will tell you if you have Hashimoto's Thyroiditis ...also i suspect your cholesterol level will be high mine was 10.6...it is now 5.2...Oh and when the doc saw my level was so high he tried to put me on medication for it i refused as it would have been for life...i adjusted my diet to take in more of the good stuff....where was i oh yes. also ask them to check your cortisol levels...this will help see if you have problems with your adrenal glands...but again you should eat food that supports them...oh another check would be to check your B12 and to check for Rumatoid Arthritis, this will help you fight any joint pain...what i mean by that is if the test shows you have no arthritis then you can work off the joint pain mentally knowing that it is just another symptom of the condition and not a physical barrier.
You may find that all they want to do is your TSH and T4 try and persuade them to do all the ones I mentioned…look up for yourself these test and learn all about it…then when the doc asks you why you think you need all these tests …he/she will be taken aback when you hit them with all the facts…they will then take what you say more seriously and wont be patronising…last thing. when you get the results make sure you get a copy and again research the results…
Hang on in there Keith things will get better but you have to do a lot for yourself…don’t listen to any crap about “ There are people worse than you” or “ I know people who have more severe symptoms”…it is about you and how you feel…this is your journey so sod the rest….look after yourself and remember Knowledge is the power.
Take care
- JKclara (Visitor)
- 2007-12-03 @ 13:41:02
Thanks for putting up all this info.
I have just been diagnosed as being hypoT, that is after about 5 years of feeling crap and putting all down to depression and getting older (i am 47)
overall i found your experience a positive thing for me - i have only just started medication and to be honest when the doc told me i was overjoyed - they called me in after they had done some blood tests. I was convinced they were going to tell me it was going to be the big C (i had constipation and stuff) so when i heard it was a treatable 1 tablet a day condition and that my head wasn not fried, i was pretty darn happy.
I am now on day 5 of taking T for the rest of my life and although it is prob psychosomatic i do feel a bit better already and have now made a pact with myself not to beat myself up for feeling lousy and crap and unable to do anything that requires any significant effort.
Thanks again
John- jackfrost
- 2007-12-04 @ 17:13:32
good luck with your journey...i was a bit impatient and I just thought that ...hey ...few pills...and I would be back to normal ...in days....I think it will be up to a year...thats if i respond fully to the meds...like me find all you can about it...so that if your doc trys to fob you off...you can enligten him/her to what you have found out, and then you will be able to help them to help you...keep a record of your levels dont just take the docs word...check them out on the web...good luck and please drop by every now and then ..and if you find out any info...share it about....knowledge is power
- Suzanne (Visitor)
- 2007-12-03 @ 14:56:24
Thanks for this blog. Great to hear someone elses story. It makes this fight a less lonely one. Your story is nearly a mirror of mine with exception that I am a female in my thirties. I have just lost 4 and a half stone and am feeling really good. I suffered for 3 years with all the typical symptoms and was unable to drop a lb even though I stuck rigidly to weight watchers. Until last May that is, when I changed my endocrinologist for the third time and had my medication changed with a T3 supplement and life began again.
In your blog you mentioned that you have a theory on quitting smoking and the under active thyroid. I would love to hear it as I quit smoking in the June and was fairly much sleeping 18 hours a day 6 months later and diagnosed a month after that.
Again thanks and best of luck with your next appointment.
S.- jackfrost
- 2007-12-04 @ 17:08:26
i think you are right about the T3, i insist that the doc checks it and If i dont get to where i want to be i think i will go down your route.
as for the smoking well no great shakes there
the suspicion has been that there
could be a link between giving up and having thyroid problems..well I found this interesting, as I know that I was Hypothyroid for some time before I was diagnosed and I clearly remember my thoughts when I gave up the deadly
weed..I had in the past tried to give up smoking many times I had started when I was 15 and continued till that brilliant day I quit..
At the time people asked me how I could just stop and go cold turkey and my explanation was that this time I must want to give up as I had no cravings and that I was confident that I would succeed as I just did not like smoking anymore.
I also thought at the time that the reason I felt under the whether was probably because I was getting rid of the bad toxins that now had a chance to leave my body.
little did I know that it was the hypo that was
making me so bad.
Sorry I am going on a bit here I will get to my point..
I suspect it was BECAUSE I was Hypo that I gave up. Something in the process stopped my craving I don't know Maybe the excess TSH or perhaps the high
Anti body level or the high cholesterol.something like that...still it is just my theory...
- catzycradle
- 2007-12-07 @ 17:05:44
Good luck with the Endocrinologist this month. Hope you have some good news before Xmas. Catzy xx- jackfrost
- 2007-12-07 @ 17:12:33
Nice of you to post such a comment you MUST be a good person.
- Alan Keith Mitchell (Visitor)
- 2007-12-08 @ 12:33:01
Carbimazole - what do you think? too strong? New medication given me Friday - out-of-hours doctor took me off them today!- jackfrost
- 2007-12-08 @ 13:20:27
Alan i am quite alarmed... you said that you were HYPOthyroid
carbimazole is useful in the treatment of conditions where excessive amounts of thyroid hormones are being produced by the thyroid gland (hyperthyroidism). you need to find out if you are Hypothyroid (under active thyroid... or hyperthyroid ( over active thyroid) Carbimazole would be soooo bad for you if you are Hypothyroid...let me know asap which is it and we can go from there.....Who gave you the medicine and what has the doc said about your condition......
- parisma (Visitor)
- 2007-12-09 @ 12:12:29
I hope your journey continues to give you good health and the love and support from your family. It was so good to read the thyroid story from the male perspective - it is so often perceived as a womans disease and little understood by male partners (I have sent your blog to hubbie).It took me 10 years after diagnosis to be treated properly and to get my life back -T4 medication "only" doesn't get rid of all symptoms. I was fortunate that my Dr. let me try Tertroxin and in less than 24hours it changed my life.
I hope your blog reaches the many who still need to be diagnosed and or treated properly.- jackfrost
- 2007-12-09 @ 12:29:32
Thank you for your king words...touch wood i am very much better..I will go for the T4 T3 mix should I not get back to 100%.....sadly your right about men understanding after all it's just hormones..can't be that bad eh!!! hope hubby takes on board what i said and gives you all the TLC you deserve..
- Rob (Visitor)
- 2007-12-13 @ 22:40:34
Hi Jack
I also suffer with thyroid disease. I just discovered another approch at Wilsons Temperature Syndrome. Don't know how good it is and why it is not better known. I am going to give it a try in the new year. If you have heard or know something about the approch ( t3 therapy) that I should be aware of, please let me and others know. Thanks for the blog. Its great to see a male perspective as most of the sites apply a great deal for women and not so much for men.
Rob- Jackie Oliver (Visitor)
- 2007-12-13 @ 23:02:44
Hi Jack
Your blog rang so many bells, ding dong!
I'd just like to comment about possible links between high levels of thyroid antibodies and food allergies. A long story but bear with me.
I was diagnosed hypo in April last year and it has taken that long to get my levo dose vaguely therapeutic because of thyroxine intolerance.
I saw a consultant endo who tested for and ruled out adrenal insufficiency. So I was told to increase the thyro dose slowly which I did and it took a LOOONNG time to get on a therapeutic dose. Still no answer as to why the problem. And then as the dose increased I started to develop other problems which the docs thought had been masked by the hypothyroidism.
As my system speeded up autoimmune conditions started kicking in affecting my eyes, joints, digestive system and the dreaded fatigue. I saw many consultants and the general consensus was you're autoimmune system is on the blink but we can only give you a vague diagnosis as the only antibodies you are showing are thyroid (at 600, very high - sound familiar?)
Coeliac disease is often linked with hypothyroidism and could have accounted for many of the symptoms but I had tested negative for the antibody. I noticed I felt a bit better when I was taking antihystos for hayfever so I looked at the next most common allergen: cows milk and bingo - house!
Within 24 hours the digestive problems had stopped and the fatigue lifted 3 days later. Other problems I was told were caused by hypothyroidism either disappeared or dramatically and measurably improved.
So I would recommend that when you have blood tests you keep an eye on the thyroid antibody levels because your body is producing them for a reason - and it could be an allergy. There is a blood test you can have to check for the general (delayed) allergy response (one of the IG ones) I tested high for this but only got the results after I'd worked it out for myself.
The NHS is so disjointed on autoimmune conditions: if you have an underactive thyroid most people in the UK only see their GP. Then if you push you may eventually see an endocrinologist, but they will only deal with the hormone problem which is actually (usually) an autoimmune condition, so then you may (one day) see a rheumatologist. Who may well say what mine did: 'we see a lot of hypothyroid patients who still feel awful even when their blood tests show they are OK: we don't know why and there's nothing we can do for it.'
I've also discovered that the allergy could also explain the thyroxine intolerance, as my body was simply not digesting enough vitamins to convert levo into useable thyroid. I think allergies could explain why some people don't get on with levothyroxine and others have no problem.
Anyway, forgive the tirade but I wish I knew all this in the first few months of diagnosis!- jackfrost
- 2007-12-14 @ 07:36:53
Thanks, another angle to have a look at, it is great to hear other people and their journeys...i have thought about what you have said and i will look into it more...one thing i did notice when reading up on thyroxine and all the different meds was that if people are lactose intolerant they should be aware that some meds can affect them...this could be another reason that people dont get on with the tablets they are taking even when their levels show normal...thanks for your post.
- Anna~Anna (Visitor)
- http://360.yahoo.com/anna_loves_life
- 2008-02-16 @ 11:37:58
Just dropping by again to read some more of your comments.
I have been back to the doctor in the past few days, and just to give you an idea of what this condition has done to me, I feel so stupid sometimes.
I also have these godawful fookin' anxiety attacks, and take paroxetine daily for them. I supplement with xanax if/when I need to go someplace.
ANYWAY, I have been feeling SO down lately, and finally called the clinic earlier in the week. Got an appt on Thursday.
My doctor took my temp. 97.5
Blood pressue was 104/59 (Pretty darned good for a smoker who will be 50 this year).
I tell him that I cannot seem to shake this danged depression.
He says "first we check your thyroid"
To have been diagnosed a full 21 years ago, WHY DID THIS NEVER EVEN CROSS MY MIND???
So yes, my thyroid was once again sub par. My meds have been increased. And shortly I will be feeling much better.
What a stupid move on my part.
I thank you again for your upbeat honesty.
XOXO
Anne- jackfrost
- 2008-02-16 @ 11:44:07
regarding blood pressure beetroot juice does it for me....google it and have a look...also i am nearly sorted now just working on the achong joints...(have a plan0 and i reckon i will be back to normal...alot has had to do with what i have been eating and supporting my other glands ...but hey knowledge is power and we can help ourselves...take care
- deleted user (Visitor)
- 2008-03-08 @ 12:56:23
When I was a 7-year-old girl I had hyperthyroidism. My mom took me to the doctor because I went to a carnival party and kept sit down, which was very strange to a nonstop girl...
My eyes were very big and I was very thin and tired for a kid who loved play all the time!
so, I did the treatment and got healed.
big hug- jackfrost
- 2008-03-08 @ 13:46:46
we dont realize what a delicate balance our bodies have to maintain...thanks for taking time to have a look- deleted user (Visitor)
- 2008-03-10 @ 19:08:53
I love medical articles very much! I's my pleasure! Great site!
- deleted user (Visitor)
- 2008-04-03 @ 17:21:06
The doc took blood from me on mon and he is going to get my thyroid checked as well as other things(iron etc)All i did was mention that i was trying to get to 8 stone to give blood but can't get past 7 stone 8,i have always been thin and he tested me before in 2004 but it was ok,he gave me build up drinks but dont know if i will take them they aren't very nice, i'm easily scunnered by things if i don't like the smell etc. My doc is quite thorough so he will sort me out if something is wrong, i also had glandular fever last year which was unusual cause its usually teenagers who get that, horrible thing one minuite i'd be fine next i felt as if someone had jumped on my back and i couldn't move(shudder!)To go back in 3 weeks to get results and see if i have put any weight on.- jackfrost
- 2008-04-03 @ 19:44:39
i hope it all checks out ok!1 the one thing i have learnt is that we dont eat enough variety of food so that we get all the vitimins and minerals that we need i have reverted to some traditional grandma theories and i have to say it has done wonders i have taken to eating "Super foods" and foiund out the stuff that stops depression and supports all my glads..i have done the same with the kids ...it is so easy to give them the same old food over and over again ...i have changed and introduced a wide variety of stuff ...things like beetroot and liver things that support your insides to make it all work better
hope it is all good news ..if you feel run down find out the things that make you tick...X
- Colours
- 2008-05-06 @ 00:06:55
Oh I can relate to it all and understand it all very easily I had, Graves Disease, Goiter, and Thyrotoxicosis I had the operation about 11 years ago and now I take 150 micr of thyroxine per day
I thought after the operation there would be no more medication oh boy was I wrong :-(- jackfrost
- 2008-05-06 @ 22:48:13
well i am glad to say i am just about ok now and i learnt alot thats for sure..i hope you are doing well
- Jenniebaby
- 2008-06-20 @ 15:23:42
Quick question - you seem to know everything about this stuff
Did you get calf pain with the hypothyroidism (or is it something that happens)?
I get it on and off (quite severely - sometimes is v hard to walk) since being diagnosed with diabetes and thought that it was probably to do with that. It's been suggested to me before that it might be a mineral imbalance of some kind, and I usually try to make it go away with potassium rich foods like bananas, orange juice and lo-salt salt...
However, someone recently suggested tht it might be a thyroid issue and it strikes me that my high potassium foods are also pretty heavy in iodine...
Thyroid problems are pretty common in conjunction with diabetes and my endo doctor often says that my thyroid tests are a abnormal, but he doesn't seem to want to treat it, so I guess they're probably not that weird yet...
This is a bit rambling - sorry - really just wondering if you knew anything about the calf pain- jackfrost
- 2008-06-20 @ 20:39:47
your not rambeling, sorry you feel so crap
I had lower leg pain. But you would have a host of other symptoms. Like putting on or losing weight for no reason. sore throat swollen tongue, depression forgetfulness cold hands Carpel tunnel syndrome. These are also symptoms of diabetes. The best thing is to go to the doc and get your levels checked very easy and it will show if your thyroid is dodgy.
People with diabetes experience thyroid disorders more frequently than the general population. Both diabetes and thyroid disease involve the endocrine system, a group of glands that helps to regulate the body's metabolism.
Almost one-third of people with type 1 diabetes have thyroid disease. This is because type 1 diabetes is one type of autoimmune disease, in which the immune system attacks a gland or organ of the body. Patients with one kind of autoimmune disease are at risk of developing another type.
Thyroid disorders are more common in females, and up to 30% of women with type 1 diabetes have thyroid disease. What's more, the rate of inflammation of the thyroid gland in women with diabetes who have given birth is three times higher than women who do not have diabetes. There also appears to be a higher than normal occurrence of thyroid disorders in people with type 2 diabetes, with hypothyroidism being the most common- Jenniebaby
- 2008-06-20 @ 21:28:09
Thankyou for that...
I definitely have the weight thing - though that could just be fat laziness - the coldness and am quite prone to the sore throat/swollen glands thing - am not too worried at the moment - just sort of looking for explanations for stuff.
Will definitely persuade endo dr to do more tests next time - I think I get them as part of my six monthly diabetes clinic anyway probably...
- Jeanette (Visitor)
- 2008-08-13 @ 17:05:54
Hi Just wanted to wish you well with your thyroid journey.
I was diagnosed in 2004 after a long period of illness, my TSH was a staggering 255.0 and i had to demand they run tests!! The DR I saw with my classic hypo symptoms told me i needed antidepressents.
It took me a long time, but since going on Armour thyroid in 2006 my life has changed for the better.
For anyone suffering with the hell that is hypothyroidsm. Don't give up. You will get there in the end.- jackfrost
- 2008-08-23 @ 18:22:47
Thanks. it has been an interesting journey but i am now fine just a bit of tweaking here and there.
- deleted user (Visitor)
- 2008-08-25 @ 20:26:05
Thanks for all the info Jack. Allthough it has been 3 years since my heart attack I have for sometime been having many of the above symptoms so I have just had blood samples taken to test for a thyroid problem. If I do, I now have a lot more information thanks to you. My symptoms, if they are, are far less pronounced than you describe but nevertheless made my doctor test for it. Like you I thought I was just getting old especially after the heart attack, noe I can see that there may be other reasons. Once again thanks, keep well, we old coppers must stick together. ED- jackfrost
- 2008-08-25 @ 20:49:01
I hope it is fine but if the doc says the results are fine ask for a print out so you can check the result yourself
if it is not that I truly believe that it is just as important to find out what it isn't as much as finding out what it is..
remind me when and where did you serve
- Lou (Visitor)
- 2008-08-28 @ 12:03:15
Hi Jack
Just wanted to let you know what an inspiration you have been to me! I followed your story on patient uk.
I was diagnosed as being quite severely hypothyroid last February. Took them a long time to diagnose me as I was not overweight according to their charts, although I kept on telling them I'd gained 10kg! However, like you, I was on my knees and convinced myself that I was dying of some horrible disease!
Anyway I now have a super specialist who listens to me.I live in Tunisia which uses a private healthcare system so don't have problems getting blood tests etc.. I just pay for them, all, what's more important than your health!!
I'm feeling loads better but still have shoulder pain which wakes me at night. It feels like a muscular/tendon type pain rather than arthritis and moves around the shoulder a bit. During the day it's fine. I wondered if you have any experience of this or any ideas?
I try and follow your advice about diet too. Luckily I love liver and beetroot!!
I wish you all the best as you continue on your thyroid journey . You don't know how much you helped me get through the difficult times.
Lou- jackfrost
- 2008-08-29 @ 08:50:43
i am gl;ad to have been of some help. joint pain is quite common but could be other things, careful not to assume it is all your thyroid if it is just your shoulder it could be something like a torn or worn rotator cuff
http://hcd2.bupa.co.uk/fact_sheets/html/rotator_cuff_injury.html
also google devils claw. that might help.
take care and as always knowledge is power.- Lou (Visitor)
- 2008-08-30 @ 10:28:29
Thanks for your advice! I clicked on the link you gave and it definitely sounds like my problem, so I googled it some more and have found a set of exercices that I hope will help (The Stretching Institute). I'll let you know!
I also googled devils claw and it sounds good. It lowers cholesterol as well apparantly, which has got to be good for us hypothyroids!!
Thanks once again for your advice.
Take care
Lou
- Sandy (Visitor)
- 2009-01-18 @ 22:44:13
Jack, I've just been diagnosed with severe hypo- TSH70. My body all of a sudden let me down with nasty aches, cramps, headaches, tingling hands and feet, fatigue and shortness of breath. My mind went somewhere else and I'm just beginning to get it back thank god. A few weeks ago I'd be in the middle of a sentence and totally forget what I was saying! I also though I was dying.
I gained 12kg within a few months and at first I attributed it to giving up smoking 4 months earlier. However when I put on 7kg in 4 weeks, this combined with the symptoms got me straight to the doctor to get some bloods done. When I quit I also went cold turkey after a pack a day for 30 years. I simply lost the desire to smoke.
Your story resonates with me in so many ways and I know it's going to be quite a battle, but I will win. This is a horrible condition when it's this severe and I wouldn't wish it on my worst enemy. Thank you so much for taking the time to record your journey for us to gain a better understanding.
Sandy (Australia)- jackfrost
- 2009-01-19 @ 20:01:29
If it is any help I am now back to normal and I have got rid of all the symptoms, some of them through what I ate and some by getting the doc to try some things I had read...As i have said your best weapon is knowledge...don't take what people tell you find out whats good for you...I believe although the condition has a generic form it is also bespoke to the individual...so take your meds and help yourself through what you eat and it will get better...I was very bad and now I am fine and getting on with my life...take care if you have ant questions please don't hesitate to write...even if it is just for support..
- Jo (Visitor)
- 2009-02-07 @ 21:20:36
Hi Jack, thanks so much for sharing your thyroid journey. I just thought I would share mine. I was diagnosed hypothyroid in 2005 and have been on levothyroxine since then with no problems, until summer 2008. Unfortunately I became very ill with horrendous headaches, vomiting and diarrhoea, and I lost lots of weight. I suffered like this for 8 weeks until a new GP decided to check my TSH and T4. My TSH was < 0.01 and my T4 was 36, both of these showed that I was very hyperthyroid. Well, since then I have been told to decrease thyroxine to zero, which I did before christmas 2008. Of course I then ended up going hypo with a TSH of 10. I am now back on thyroxine, but the worst symptom that I have had since October 2008 is the most awful pins and needles/tingling/numbness in both arms and legs, hands and feet, and even in my mouth, lips and scalp.
Its that bad I can only describe it as having far too much adrenaline so that you feel shaky, combined with hypoglycaemia !!! I dont know how much longer I can cope with this. I am waiting for blood test results for thyroid antibodies, I should get them next week. Do you think it could be caused by an attack of antibodies? Apparently they can come and go a bit and cause thyroiditis, which is what must have happened in the summer. Your thoughts are very welcome as I am ready to chuck myself out of my bedroom window. My hubby is a police officer with Lancs constabulary. He was in the Army before that, in the RCT, which is no more of course. My eldest son is 19 and is in REME. Please help. Take care, Jo- jackfrost
- 2009-02-07 @ 21:59:26
There are so many things it could be ...It is just as important to find out what it isn't as it is to find out what it is, Your doc should be asking why after so long should your levels go wrong...and should have done a battery of checks.for other auto immune diseases...with what you have said i would ask him to check out my parathyroid glands
these are small endocrine glands in the neck that produce parathyroid hormone. Humans have four parathyroid glands, which are usually located behind the thyroid gland, and, in rare cases, within the thyroid gland or in the chest. Parathyroid glands control the amount of calcium in the blood and within the bones.
The following are the most common symptoms of hyperparathyroidism.
Tingling lips, hands, and feet
Muscle cramps
Pain in the face, legs, and feet
Abdominal pain
Dry hair
Brittle nails
Dry, scaly skin
its a long shot ..your doc just needs to check yopur calcium levels....
soory that I am not more help...the thyroid condition is always bespoked to the person and everyone has different problems...but as i said Knowledge is Power...go on google and find out all you can...hope you get it sorted and dont give up...let your old man read my blog so he knows what your going through.
My father and elder brother werte in the RCT..amy other brother was an Army cook and I was a royal engineer.
My eldest is a copper in hampshire.
Let me know how you get on
jack
- Jo (Visitor)
- 2009-02-07 @ 22:18:03
Hi Jack, I have had calcium levels checked in December and they were normal. Also had parathyroids checked, I have heard nothing from the doctor. I keep hoping that I will feel better each day, but now into 5th month of constant pins and needles etc. and I am weary of it all. I wonder if its because my TSH and T4 levels have been swinging from very high to very low and if they can level out then maybe I will start to feel ok ?!? I have very weird headaches at the back of my head too, and I feel like I am going to faint when I am at work. I have never felt so ill. Thanks for replying so fast. I will try to get hubby to read your blog. He isnt much help unfortunately, as he doesnt 'do' being ill. I wish I didnt !!! I cant stand being like this. I want to be well again. I used to run half marathons !!! Take care, love Jo- jackfrost
- 2009-02-08 @ 09:32:15
The other thing to check is Fibromyalgia ..but i think it is on of the glads the fact that your levels changed means something has occurred...again you have to go after the answers yourself...as hard as it may seem ...NEVER give up and make hubby read about the thyroid he has to help you as you have to help him he also suffers from this complaint through you...I know as I am a carer for my wife and it is hard to understand others complaint...but hey you know all that..
here are some ideas..Have you got Hashimoto's ...This could be the reason for the change..if at first your thyroid was just underactive then the thyroid weas chugging along but it may have given up ythe ghost..this will show when you get your anti bodies result back ..if they are way high then it will be hasie's ....i had the tindling and just about all the synmptoms ...i got rid of them slowly...also are you lactose intolerant...do you take other meds?..when do you take the meds?...have you changed your brand of thyroxine?
There are a number of reasons why your TSH might be fluctuating. Changes in potency from batch to batch of your thyroid pills. I always insist on the same brand Synthroid brand has been notorious for this, other brands have tended to have more stringent quality controls in place.
• Possibly your blood samples have been tested at different labs, or some other lab mix up
• Have you changed the timing of when you take your thyroid pill? This can affect the way it's absorbed, whether with or without food. Thyroid is best taken first thing in the morning, on an empty stomach.
• Increased fiber in the diet. Or if you're taking fiber supplements such as psyllium. These need to be taken at least 2 hrs away from the thyroid pill, as fiber can inhibit absorption of the drug.
• Calcium and/or iron supplements .. these also can inhibit absorption of thyroid medication if taken at the same time of day.
• Are you eating a lot of soy foods, protein powders or low-carb bars, baking mixes etc with soy in them? Soy has been shown to worsen hypothyroid in some people .. you should avoid or sharply limit your intake of soy foods.
• Other foods besides soy may possibly affect the thyroid. Vegetables from the brassica family such as broccoli, cabbage, kale, brussels sprouts .. and others. The "goitrogenic property" is destroyed by cooking, so avoid or limit consumption of these foods in their raw state.
• Other prescription medications you may be taking .. hormones such as estrogen or birth control pills, antidepressants, cholesterol-lowering drugs, some herbal supplements.
• Stress and Illness can affect thyroid levels .. including chronic lack of sleep.
These factors and more are all explained at Mary Shomon's Thyroid Information site (http://www.thyroid-info.com/articles/tsh-fluctuating.htm).___##0##___
Keep fighting and keep in touch..i wish I had the exact answer for you...but it is out there...oh last thing what does your diet consist of?
Jack
- Jo (Visitor)
- 2009-02-08 @ 11:39:20
Hi Jack, thanks for your reply. I used to take an antidepressant called sertraline which is an SSRi. I actually stopped this is July 2008 which is when all these problems started. My GP said that this has nothing to do with it though. I used to take warfarin but stopped this in December 2008 to try to rule this out too. ( I had a DVT and a PE after a fall at work in April 2005 ) So at the moment I only take Levothyroxine. I do try to stick to the same generic brand of this but its not always possible especially with supply problems of the 25mcg tablet. I always take levothyroxine early in the morning with no food for at least an hour afterwards.
I dont have extra fibre, I dont eat any soya products. If I eat any brocolli,cabbage etc it is always well cooked.
My diet includes fruit and vegetables. I usually have chicken or fish daily. The only thing that has changed in the last year or so is that I have stopped eating breakfast. I used to have a bowl of cereal each morning but now I dont feel like eating until dinnertime.
I am hoping to get the results of thyroid antibody blood test this week.
If I knew that these symptoms would eventually go then I could cope. I think its the fact that I have had them constantly for 5 months and they seem to be getting worse, with more numbness in my hands and feet. Its the not knowing that drives me daft. My GP said to me the other week ' I honestly dont know what is causing this '. I certainly dont know myself !!!
Take care, Jo- Salman Khan (Visitor)
- http://www.google.com/
- 2009-05-08 @ 10:14:15
- jackfrost
- 2009-05-08 @ 15:40:49
You passed!!!!
- deleted user (Visitor)
- 2009-05-12 @ 15:07:32
After all that I will be brief... I have recently been diagnosed as hypothyroid. I had a complete MOT [!] and finished up with leyothroxine. Within days I was feeling better. I am very very lucky to have an excellent medical centre..... Mind you I am now on 7 different medications including the dicey warfarin!! hey ho and all that .....- jackfrost
- 2009-05-12 @ 15:16:49
are you on medicine for high cholesterol?????
- Sallyteapot
- 2009-11-10 @ 14:54:24
I've just commented on your other blog and then I noticed this one.
My daughter was diagnosed with Hypothyroidism in 2003, she was 7 years of age. At the point of her diagnosois or just before, she was overweight, ate next to nothing, barely moved, very bookish, withdrawn, her skin was dry and flaky, we jokingly called it crocodile skin, her hair was dropping out and I don't think her heart was in a good way! Appointment after appointment, I was told she was ok... they plotted a growth chart at my insistance and after 6 weeks realised she had not grown and it was at that point my doctor finally decided we should see a specialist. I was so lucky with the doctor I saw as he specialised in that area and he had her diagnosed almost as soon as she walked in the room. She had record readings which the doctor was very pleased about. (Obviously that wasn't good news for us)
My daughter is now 14, she is as fit as a lop, slimmish (depending on how many chcolates and crisps she eats!) very happy. The down side was her school work. The changes after being diagnosed and taking her medication was so dramatic that school work took a back seat and her teacher at the time said it was likely she would enter senior school in remedial classes.
Thankfully she proved him wrong and is now working towards her GCSE's and doing very well.
Andrea takes 125 microgrammes of T4 every second day, on the other day she takes 100 microgrammes. Sometimes the biggest problem I have is getting her to remember to take them!
Thanks for sharing all of this, I wish I had found something like this back in 2003! It would have helped ease some worry and would have given me a better understanding of what was to be expected etc.
I will leave a link to an entry I did in January 2008, just incase it helps other readers who find your place here. It may give hope.
http://daffy.wordpress.com/2008/01/25/pride/
Thanks again.- jackfrost
- 2009-11-11 @ 17:25:15
It is so frustrating when you dont know what it is, I was so releived when I found a name for my complaint. I too am ok know. it will never be as good as ther natural t4 but it is the next best thing....glad she is doing great
- Thyroid Formula (Visitor)
- http://www.thyroidformula.org
- 2009-12-15 @ 15:12:28
well as you said, knowledge is power. the first step To start struggling with thyroid problem is by "knowing is", it will be smart step for everyone to know more about thyroid related problem. Thanks for sharing- Ali (Visitor)
- 2010-01-24 @ 11:22:55
You can find more information on Hypothyroidism in:
http://www.geneticsofpregnancy.com/Encyclopedia/Hypothyroidism.aspx?pid=62
This site contains information On Pregnancy Diseases And Genetic Testing.- naturopath (Visitor)
- http://hypothyroidtreatments.com/
- 2010-02-03 @ 05:00:08
You are brave. You are able to tell the whole world about your journey with hypothyroidism. I salute you!
Let me share a link: http://recipetohealth.com/fixing-hypothyroidism.php I hope it helps- Sally (Visitor)
- 2010-08-30 @ 17:36:11
thanks Jack
i cried when i read your blog, i actually thought, hey its not me, i'm not going mad or making this all up.
thank you .
i have been diagnosed with hypothyroid in february and i was very sick, i too am a carer of 2 disabled teenagers, one has autism/ADHD, the other a physical disability.
thank you from the bottome of my heart x- jackfrost
- 2010-08-30 @ 20:47:12
It gets better...it took a while but I am 100% back to normal...XX
- Leah (Visitor)
- 2010-09-09 @ 17:04:31
Thank you Jack, I was told today by Dr. I am hypothyroid. Reading your blog made so much sense. I will read it before I go to the Dr. again to boost my confidence to ask the right questions.
So good to know your symptoms have improved so much and of the difference the food can make too. I am on thyroxine and hope like mad to feel improved soon and eventually to lose some of this weight I have gained and gain my sanity.
Thank you for being so candid.
Leah- natalie lappage (Visitor)
- 2010-09-15 @ 01:04:50
Hi Jack,
I have read your blog from start to finish, tears steaming down my face.
I was just wondering how you are now?
I have struggled with my thyroid problem now for 5 years (traumatic child birth and 2 years to be diagnosed)
my doctors havent helped me at all, and I didnt really understand much just how I felt.
I went to the doctors last week and saw a female doctor tried to tell her I wanted my thyroid levels checked and she started verbally laying into me saying I was exessively over weight and extremely obese (her words not mine) and worte me out a prescription for slimming pills and called me a liar with regards to my life style. (it still hurts to think about it) and I have been to ashamed to tell people what sha said because I am ashamed.
anyway I have since then been doing my research got a second opinion and had a load of blood tests done, was searching through the internet so I can start asking this new doc questions when I came across your blog.
Thank you, thank you for sharing (even if it was 3 years ago) you have taken a little bit of my shame away. I am going armed to the doctor next week and I am going to make them feel ashamed for how they treated me, but most of all, I am going to help my self get better so I can be the loving newly wed wife and loving mother to my children.
thank you.
x- jackfrost
- 2010-09-15 @ 07:53:32
I was similer to you hun...I did not know what it was for a long time....but once I did Being a man I then made a big Fuss..(Like all men do)..and I decided that I would take charge of it and find out what I could and help myself...your right Doctors see it as just a common ailment that is insignificant and they just want to give you a pill and for you to go away...well don't let them..tell ..yes Tell your doctor that you need help...Tell your doctor that you insist that you are referred to an endocrinologist.....tell your doctor that if they continue to deride and humiliate you that you will report them to the medical council....you take control...but also you have to get your head in a place that gives you the determination to fight...your weight is a battle and you have to start a campaign...change your diet eat well and despite feeling tiered exercise..
I am back to normal...i still have to fight the weight and it goes up and down at times but i manage it ...and am fine....take control now and let battle commence.
remember knowledge is Power
Jack xx
- tealady
- 2010-10-08 @ 10:06:21
Hi Jack,
finally readthru it all .. I'd started before as I redcall parts of it. So glad to hear you improved so much. I was thinking 175mcg would be right for you reading it when you tried the 200mcg.
I went hyper last year too.. doc faxed wrong results to another doc.. wouldnt give them direct to me, so i was told I was hypo when really I was hyper..that took a few months to recover from..racing heart.
I recall I stopped smoking asily cold turkey when I was 30. I just said , Ok i'll stop tomorrow and did..no effort at all? So same as you. Thinking back I didn't notice any hypo symptoms much befpre that, perhaps a few odd things, but afterwards, yes. I wasn't treated for over 10years though..just steadily worse and my TSh didnt get that high ..only just 5 or 6 when treated.. but antibodies very high and free levels had been low for over a decade or so from an old test ..perhaps(or test results could have been wrong).
I was also on antiD's for a decade or s.. for fatigue!! although I didn't feel that depressed..excerpt from not being able to function as I expected I should be able to mainly.. but about your level I guess. I spent many years on a forum for that to help direct folk I suspected may have thyroid problems being incoreectly treated(I guess to try to prevent them going down the road I did, and many do). So glad you knew of that one!
I dod agree with the comment about being on some antiD's can exaserbate health problmes and I expect ythat happned to me as well. I also have that tingling Jo ? mentions ( can be burning intensely at times)other times just a slight tingle..soles bright red or normal at times.. had since about 3 weks after starting on T4 meds.. No idea, nothing at alkl on net, perhaps 5 or so people in 10 years of reseach? Suspect something to do with the thryoid meds working depleting sometjhing, I know it intensifies for me if I go in a sauna, exercise my legs at a gym(like the bike for 30 mins, take B1, take B12(that really creates the tingles and soles, palms go purplish red).. but no idea!. It has to be rare and so far there really app=ears no answer. I was pleased to see you had the tingling and it went away as you recovered though. I know its related somhow. before I guess i would have been labelled "raynaulds" -it is nothing but a label , no specific treatment, and the thryoid meds seemed to restart the curculation and I guess these areas just have to heal as well as they can. before the meds they were frozen I guess??(or felt that way most of time?). Anyways its not much to bother one..not like neuropathic pain. Its not related to fibromyalgia, tha5t goes much quicker for me and most on thyroid meds..hope yours has all gone now? It seem to read that way to me.
Just reding you blog indetail as I've finally recovered enough from that accident to do so, and I often think of you. I love your "happy
blog and the comedy is something I have also found I spent a lot of time reasing and it's been great seeing you go thru much the same (only making a far more entertaining blog! that has been so helpful to me and I'm sure many others. The jokes are the one thing I think we all benefit from.
Also although I am on Armour as wll as T4, as your doc says its not "the answer" as many say. It probably increases the antibodies and symtpoms of inflammation..so if you have beenable to get well without it, it is really better not to tri it. The problem is not that Armour ois not prescrivbed, and the drug compnies make little out of T4 (its cheap and out of patent)..it just that our thryoids make many hormones.. not just T4, and our bodies ca'nt match the on demand constant changes., armour has a few more, but it also has many "pig" -read foreign to human ones! that our bodies put up immune fights against as well. really what we need is something closer to what the human thryoid nputs out..like they do with doiabets with differnt insulins(but as we dont usually die quickly anyway from hypo, we arent going to get it)!
Love reading your blogs. You write so well, and its so helpful (both of 'em). Hope this hasn't too many typos,
best wishes, Jan- Ali (Visitor)
- 2010-10-26 @ 09:20:58
There is more information regarding Hypothyroidism and you can find it in:
http://www.geneticsofpregnancy.com/Encyclopedia/Hypothyroidism.aspx?pid=62&cid=138
This site contains information On Pregnancy Diseases And Genetic Testing.- Glad (Visitor)
- 2010-11-14 @ 23:40:14
Hi I had a goitre removed in 1982 was on 300mg thyroxine until 2005 when it was found I had a mitral valve problem. My thyrocine was reduced to 200mg I became very ill depressed ect. Valve repaired in 2006 and I starterd to improve still not 100%. Moved from England to Scotland went to see new Doc JUNE 2009 who without my previous medical history said my 200mg was to high and REDUCED it to 150. I then had a blood test and was told it was still to high and reduced again to 150mg I was now feeling really unwell.Had another blood test 3 months later and reduced to 100mg. Tired depressed wholly unwell, crying for now reason. Saw duty practice nurse, broke down crying, she then spoke to the doctor and made an appointment for the next day, he went through the depression check, but agreed that I should see a consultant. MAY 2010 consultant has put me on 125mg for 2 months then increase to 150mg. OCT 2010 seen by consultant who is happy with my bloods but as I still feel unwell to visit my GP and ask for an increase to 175mg in DEC. I still feel very low and very angry that a doctor who had no knowledge of me could ruin my life for approx 2 years just because I didnt fit into what he regarded as "normal" I am lucky to have found a consultant who understands. Glad- noithatpro
- 2010-12-17 @ 01:25:56
Thank you for the post. Keep updating your blog with valuae imformation- mayin
- 2010-12-31 @ 02:14:32
Keep updating your blog with valuable information. Happy new year!.- rhinoplasty los angeles (Visitor)
- http://www.drcalvert.com/procedures/?procedure=340
- 2011-01-27 @ 10:30:07
Thyroid is a severe problem in adults and it is also true that most of time it is neglected and misdiagnosed and there is no help got from the superior medication that is available improved new age medication.- Geraldine Davis (Visitor)
- 2011-03-02 @ 20:21:40
Jack, it's been good reading your blog and wonderful to hear that you are mostly well.
I think I've had a thyroid problem since I was a child as I used to go to junior school with very dry skin and cracks all over the backs of my hands. At senior school I used to fall asleep in lessons and at around age 12, I was hyperthyroid and had to drink iodised salt in water. I found out that if you have been hyperthyroid, the thyroid should be tested yearly, but when I told my doctor that I had been hyper, she said there was nothing on my notes. Nice.
I am now 67 and for many years had problems with constipation and had tests at the hospital and remember being told to eat less fibre. (They should have said carry on eating fibre, but drink more water.) I have had many health problems and felt I should only mention 3 or 4 at a time when I saw the doctor. This could be why no connection was ever made. I have written down all my health problems and there are 32 now.
I eventually had a blood test in Feb 09 and was said to be borderline at TSH 6.3. In April it was 8.8 and I was started on Levothyroxine 25mcg. By June it was down to 3.1 and I felt like a new woman for a couple of weeks, but unfortunately it didn't last. In Nov 09 it was increased to 50 mcg and my TSH was 1.6. In Dec 2010 it was 1.23 which sounds good, but I feel dreadful.
I started a support group before we moved to France which was very much appreciated and I hope it's continuing. I hope I will be treated on symptoms, not levels here. I want my life to be normal again.- Patricia Godsall (Visitor)
- http://hypothyroidism-is-very-common.blogspot.com
- 2011-04-16 @ 20:05:53
I was born with congenital hypothyroidism. This is screened in new born babies at day 5 with a heel prick blood test which is known as gutherie test or pku. The term cretinism came from undiagnosed hypothyroidism because untreated it can cause mental developmental problems.- wonder (Visitor)
- 2011-04-19 @ 12:42:14
Thanks for the informative post.
I also suffered from hypothyroidism after a huge amount of stress. However, I caught it in the early stages and it wasn't very severe. I changed my lifestyle, my food, got more sunlight and fresh air and drank 3tbsp of coconut oil every day and after a month my thyroid was back to normal without any medication.
I hope things work out for you.- deleted user (Visitor)
- 2011-05-11 @ 06:21:58
Hi, my name is Rosie. Can you please tell me Hypothyroidism is very dangerous? What are the treatments for Hypothyroidism? Is there any natural treatment for it? I have read one article like diet plays a very important role in Hypothyroidism Treatment at http://www.hypothyroidismsymptomschecklist.org/Hypothyroidism-Treatment.htmlWhat do you think about this page?- jackfrost
- 2011-05-11 @ 07:35:01
Rosie, If left untreated Hypothyroidism is very dangerous ,...Basically your thyroid helps produce the chemical that makes all your hormones, then go on to run the body, if you get no hormones then the body packs up!...You need to see a doctor and start on Levothyroxine, there are natural medicines like armour that are derived from pigs thyroid, however get help first,start the treatment and then look at the alternatives, find out all you can about your complaint and fight it..
Diet can be very important as I have written, but the main thing is to start a treatment via your doctor.....Knowledge is power!
- Atlanta Plastic Surgeon (Visitor)
- http://www.johnconnorsmd.com/
- 2011-05-29 @ 20:05:02
Kind of you to have shared your full story which helps many patients like me relate to your suffering as we go through the same.headaches have been a constant bother.- Maria Fari (Visitor)
- http://wsue.net
- 2011-07-31 @ 00:57:53
Great article! Good work, i love the concept.
Best regards!
Maria- Mary (Visitor)
- http://www.hypoweightloss.com
- 2011-08-03 @ 22:37:10
I also have Hypothyroidism. I stuggled a lot with weight loss no matter what I did. I also started a blog for my new plan for helping others with the same issue. After experiments and understanding the what tos and what nots I think I have a plan figured out. I am obviously not advertising but would like you to visit my blog, maybe add some of your advice on there as well www.hypoweightloss.com- Dissertation Help (Visitor)
- http://www.dissertation-topics.co.uk
- 2011-08-24 @ 23:35:52
Such a nice post- highonfaith
- 2011-10-09 @ 03:15:45
Thank you, Thank you, Thank you for your blog! I can relate so much to everything you say! I have run the gamut from hyperthyroidism and a subtotal thyroidectomy, to hypothyroidism. I have read so much on the subject, but never read anything quite like your blog. It validated all that I have been going through the past 2.5 years since all this began. Hearing that another person has gone through the same debilitating symptoms and is FIGHTING it is wonderful news, ( not that you are hypo, but that you are a fighter)! I always say to myself " I will not let thyroid disease define my life'! I will not let it define who I am. I will fight to the bitter end!That being said, it is the hardest fight I've ever had, it is relentless, and I must struggle everyday to stay on top of it! I love the poem. I printed it and it now hangs on my refrigerator to remind me that this little butterfly gland will NOT WIN!! Thank you again and God bless you for posting your personal struggle with this disease! Means a lot to me. Shelley- jackfrost
- 2011-10-09 @ 21:49:03
Well keep on fighting I have had no problems for over 18 months now so fingers croosed things will continue
The one tip i keep giving is Knowledge is Power
xxx
- highonfaith
- 2011-10-10 @ 14:36:37
Thanks so much!!! I truly believe Knowledge is POWER, that goes towards life in general, not only thyroid disease! Keep up the great work. So, happy for you that you are symptom free! Will be keeping you in thought and prayer.
Shelley- Cassy (Visitor)
- 2011-11-11 @ 14:15:41
I am waiting on another blood test in 3 months to see if I am hypothyroid . My levels have been borderline for years and my Dr is reluctant to medicate me. when I read your blog it was OMG
I thought I was slowly dying of something awful I have been feeling so Ill for such a long time.
I think the depression is the worst symptom or maybe it's the pains in my bones or again maybe it's the fact I can't motivate myself until mid day.So thank you for your blog !- Leroy (Visitor)
- 2011-11-24 @ 08:58:23
You thought you're bad off...try battling your thyroid for 12 years and 8 endocrinologists and nobody can get you balanced. Try having, on top of thyroid problems: kidney stone disease (passed 35 stones,), endometriosis, interstitial cystitis (bladder disease in which I now have a neurostimulator implanted in my spine), asthma, thyyroglossal cyst in my neck, pelvic floor dysfunction, a host of anxiety and depression related issues, IBS, and the most recent, atrial fibrillation in my heart! Now THAT'S feeling shitty! I'd give my left arm, or both arms to be simply dealing with thyroid disease. I am an empty shell of the person I used to be. It's been 12 years. I am 31 years old, and this is my life. I'm fed up of it. Most days I wonder why I'm not dead. I feel dead.- ballet news (Visitor)
- http://www.balletnews.co.uk
- 2011-11-28 @ 15:25:17
I am a journalist trying to raise awareness of this issue and have just written an article about it.- Mohammed (Visitor)
- 2011-12-04 @ 16:31:02
I work shifts (sometimes over 70 hours a week at the computer) so I thought I had Repetitive strain injury. Went to the doc who sent me for a blood test because he said it could be carpel tunnel syndrome. Turns out I needed levothyoxine. currently on low dosage but already feeling a bit better. Your blog has been extremely useful and helped me understand things in better prospective. At "only" 33 it wasn't a nice feeling thinking I had the "old gits Syndrome" have cut the hours and enjoying life with family.
Wish you and your family all the best, thanks.- jackfrost
- 2011-12-04 @ 17:36:29
Hope it gets better, I have been 100% for the last 2 years, couple of tips you might want to try, when you have your blood test ask the Doctor what the TSH level is it should be between 0.3 and 3, you want to get it as near to 0.3 as you can...another tip try cutting out dairy products and caffine and see how you feel.
Happy Xmas to you and yours
- GT (Visitor)
- 2011-12-14 @ 20:50:26
thank you for sharing and for your encouragement.- FatJag (Visitor)
- 2012-01-19 @ 08:59:53
Jack, as an 'only just being diagnosed but 'fearing the worst' candidate, your blog here has given me (and any others who take the time to read your input) a head start in their prospective medical futures. My wife has been nagging me for ages about my CONSTANT clearing my throat, she even resorted to 'extracting the Michael' because of it. My doctor tested my cholesterol around 18 months ago and was alarmingly similar to yours, 10.8. So, Statins were prescribed, much to my discontent. After taking these (Simvastatin) for a few months, the side effects started to kick in, muscular pain, weight gain (1.5 stone) and a really un-nerving chest pain which felt like I was encountering a heart attack, I stopped taking the tablets at that point. A more recent visit to the doc through a suspected ear infection (which turned out to be a throat infection, see where this is leading?) saw a prescription of Amoxicillin being aquired by oneself but alas failed to fully resolve the issue (more on this in a moment). However, during the visit for the suspected ear infection, the doctor asked why I had stopped taking the Simvastatin? I gave her the above side effect details to which she requested I attend for another blood test to check Cholesterol, at this point I also requested a Diabetes test due to being worryingly tired most of the time but even more so after eating (notice anything familiar?!). Blood tests carried out, I returned to see the doctor, yep you guessed it, another different doctor . My Cholesterol was 8.6 (still too high) which was surprising as I hadn't been taking the statins but had been drinking one of the cholesterol reducing yoghurt drinks most mornings coupled with drastically reducing my red meat intake for around 9 months. I mentined to the doctor that my throat wasn't much better and that I was experiencing pins and needle's in my hands, especially shortly after getting in to bed at night, his reply was with a question 'have you had any neck pain recently?' strangely enough I had. His response to my reply was ' well the pins and needle's could be due to a compressed nerve in your neck, don't worry about it'. He then went on to check my weight, yep, overweight, and then went on to suggest a Thyroid test, along with around 5 other tests on the nurses form's, ping! a lightbulb moment followed for me, 'where is your Thyroid?' I asked, 'in your throat' replied the doctor, 'could all my symptoms be related to a Thyroid dissorder?' I asked, 'yes of course' he replied and this can be sorted with a life times dose of drugs. Not being at all happy with that reply I asked if any other form of treatment was possible, he looked quite shocked at my interogation. Well he said, a short course of drugs may correct any problem with your Thyroid (if the tests come back abnormal) as well as possible corrective intervention ( surgery). So it goes to say that never settle for being a pill bottle for the rest of your life, ask questions, a firm advocate of yours!
My next series of tests are booked for late January, I'll let you know how I got on but for now, THANK YOU for sharing your experiences and being BOTHERED to possibly help others.
Andy.- jackfrost
- 2012-01-19 @ 09:42:58
Andy, if it is any reassurance, although it took about 2 years to get back on track I have been absolutely fine for the last 3+ years and have had no effects whatsoever, I am sure it will be the same for you...it takes a little time but you will get there..
Take care
- Felicity Spear (Visitor)
- 2012-01-20 @ 18:29:07
Hi Jack
WOW! This is amazing. I've looked on Facebook for help about my hypothyroid problem and there is nothing, and here you are. Hooray!!
So, I'm a 32 year old, over weight, recently given up smoking gal. I was dignosed with Hypo only a week ago and I feel like shit. I've been on the Levo for it and the only thing that has changed really is my outlook in that I know what I have and that there is a cure for it. In other words, I feel positive about feeling like crap.
This is my list of things I didn't understand before diagnoses -
Felt terrible all the time!
I'm sleeping more,
Really bad tempered,
Needing to be near the fire alot,
Coughing up phlegm,
Unable to breathe properly, especially at night which woke me up alot.
Unusually large neck
SLight panicky sensations causing me to have to take deep breaths
Constipation (sorry)
Unable to walk more than ten paces without my legs feeling like they've been running (I may be large but I've NEVER been unable to walk, plus these legs need to be strong right!?)
Fuzzy feeling in my face (my least fave beside the not being able to walk around)
Fuzzy feeling in my hands and feet
That weird throat feeling
Bad back on waking up (That's probs a weight thing)
All these things, the opposite of a normal me.
So, I went to the docs about a month ago now and he gave me some anti biotics for a possible chest infection (lots of whistly breathing and phlegm). The biotics did not work. Went again and was given some steroids and an inhaler(!), these did not work. Went again and was given yet more antibiotics. These did not help. Went again...so the forth time, one week ago to bring you up to date, and I get a blood test (why they don't do this right away?). I was worried I was diabetic. The results came back the next day and I was put on 50mg of Levo.
So...one week on them so far and I'm still feeling awful, unable to walk very far without having that 'run a marathon' feeling. I hate it. I feel very pathetic.
It is so tempting to take two tablets a day to see if it makes a difference. But I suppose I should wait till I see the doc again (who has gone on holiday...very helpful as I'll have to see a different doctor.)
Jack, I really want to say thankyou for posting your blog. It's so good to know, even at the early stage I'm at that things will get better. I broke down today as I really wanted to walk into town (not a very long walk) but couldn't face it. It's very odd to go from being absolutly able to not very able in such a short time.
Now then, about the smoking thing. I gave up smoking and two weeks after things started changing. I have been wondering if due to the fact that a ciggie will increase your metabolism slightly everytime you have one, this somehow disguises the symptoms of Hypo. Hmmm...That's probably a load of rubbish. I just can't understand why the change in me is so rapid.
The doctor literally just called and told me I'm at level 2 which is very low apparently. I don't really understand this. DOes that mean I'll be put on a higher dose of Levo? (Typing Levo and it's easier than the whole word!)
I look forward to hearing what you have to say. It really is good to know this blog is here.
Muchos respect
Felicity.x- jackfrost
- 2012-01-21 @ 07:20:57
Sorry to hear that you Are hypo. The first thing you will discover is that this is your own personal fight,The trouble is , is that people around you(even those close to you) wont really understand how it affects you, You cant really blame people as there are no real outward signs of the problem that they can sympathise with,So very quickly you will be on your own and if you go on about it others will soon get bored with the subject.
that said the good news is you know what it is and you know it can get better( Yay!) It IS frustrating, when I started taking the meds I expected an instant result I thought that I would take the meds one day and that the next week I would be fine....NOT...It will take a while for you body to re align and get back to normal, However you can do things to help, The way to help yourself is to research all about the problem and to get a good knowledge of what has happened to your system and what you can do to help, Next time you go to the doc write down questions for him/her so that you get the answers you want, the reason I say write them down is because when you walk in the appointment is so short that you forget to ask what you wanted to know.
also find out what your TSH level is this is a good guide to how you are doing You want it to be between 0.3 and 3 and the nearer you get to 0.3 the better, as for food well start to find out what your body wants...It is no good for me to say eat this ...or eat that...your body knows what it wants so expand your range of food try different vegetables from what you normally have, go on line and see what foods do what...for example you mentioned that you have a bad back on waking and that it is probably a weight thing....i had the same thing but it was my kidneys that were under strain so I looked at foods that would support my kidneys, for example I found that adding nuts to my diet diet helped. I bought Brazil,almonds,walnuts,pecan and added a mixture of goji berry cranberry,sunflower seeds...chopped them up together and when I had cereal I would add a couple of spoonfuls to it. things like that.
for 10 days don't have any dairy products and see how you feel, play about with your diet and find what works for you, diet is an individual thing and we all have to find our own balance, just get rid of most of the crap that we eat and that will help.
I am not an expert on this matter and I will never try to be, what I want to put over is that it is for each person to find out for themselves what works and how to manage their own problem...that is why you will see the Phrase "Knowledge is power" so often....as you find out more don't get sucked into the negative blogs and articles. you will read all sorts of articles pertaining to conspiracies about thyroid drugs, people telling you that only natural thyroid treatment will work etc etc.... Have an open mind,don't get sucked into one way of thinking ....You have to help your doctor to help you.
All this said I can tell you that for 2+ years now I have been just fine. It is hard at times to remember to take my meds as I feel so normal, the best thing I think I did was to not get caught up with regard to the excess weight. I decided that it was more important to make sure that my body was getting what it needed and not to diet and deprive it of stuff, I lost some weight but I am still over weight but I am comfortable with that, I have young kids and when we go out for walks or do stuff it is always them that are knackered first or have to rest first, so that's my guide to how I am managing.
It can get better, It WILL get better, it is your journey and your fight, sod everyone else,
Please let me know how you are getting on and if I can help in anyway please get in touch
Knowledge is Power
Jack x- Felicity (Visitor)
- 2012-01-21 @ 17:57:27
Thanks for your reply Jack. It really is good to read thoughts from someone who has been though it.
I certainly will let you know how I'm getting on. 2nd blood test on Monday so hopefully it will show something positive.
Today I felt better but then I havn't had to walk very far to get me to that 'feel like and old git' (makes me chuckle that!) feeling. That's what gets me down then most.
I have another question for you. I just wondered if you drink? I've always enjoyed having a drink but now I don't seem to want to have one. I think it's ok to drink on Levo isn't it?
Also...did your teeth ever feel odd or sensitive?
Felicity- jackfrost
- 2012-01-21 @ 18:21:33
When you see the Doc ask him to print out the results so you can take them away...you want your TSH,T4 and T3 (Look them up) and your anti body count...if the anti body count is very high it can Indicate that you have Hashimoto's thyroiditis (which is what I have, again google it!) ask him/her if this is a possibility...It may be that your thyroid is just under active!...also before you see them, write down questions that you want to ask and make sure they answer them.
as for drinking...yep I have and do have a drink....once my meds were stable i have been completely normal, no tiredness or symptoms and my energy levels are just great....it did take some time to get back to normal but by researching the complaint I was able to understand what i needed to do and worked with my doctor to get it sorted.....one disappointment that you may feel is with the Meds. I wanted the doc to increase them faster but it is a steady increase and you cant rush it.
to understand the Levo a bit is to realise that all it is doing is getting into your body orally....it is only what your body produces so you are doing no harm and your not putting into your body what is not already and should be there.
I did not have direct problems with my teeth but I was biting my tongue and cheek a lot and started to snore quite badly...the symptoms can vary quite alot. that's why I say that it is very much an individual journey .....trust me I am not a guy of science or academic prowess, I am just an ordinary bloke ...the advantage I have with this illness is the fact I am a man, and as a man I will whinge and whine and complain about it to the doc and make a nuisance of myself where as women just tend to keep quite and just accept what the doctor says and suffer in silence.... just look how men are when we have man Flu!!
if you have anything that is bothering you or just want to sound off or have a whinge and rant drop me a line.
- Felicity (Visitor)
- 2012-01-21 @ 19:50:06
Thanks again Jack!
It's because you are not an expert that it is such a useful blog. You've done lots of research and so make it possible for me and i'm sure lots of others to feel better about our situation. It's magic! That's not to say I won't look up stuff myself. The dietry stuff is interesting especially. What are your thoughts on Sea Kelp vitamins? I saw a Youtube clip with a doctor saying it's not a good idea to take them...but them articles elsewhere saying it's a great idea.
I've decided to write myself a little diary which I'm sure will be helpful.
Just been to Morrison's to do the big shop with me Mam (bless her, she's being wonderful!)and it just takes all the energy out of me. Still adjusting to not being able.
So...I'll no doubt get back to you with my results next week.
Are you on Facebook? I just ask because it's the first place I looked for help/somewhere to rant/somewhere to read what you have written in your blog! I think you'd get a huge following!
Flick.- jackfrost
- 2012-01-21 @ 21:10:16
I have put it on FB as you suggested, thanks!
- Susie Q (Visitor)
- 2012-02-09 @ 13:28:53
Hi there
Just searching for information and came across this. Although I am at the stage where I still don't know what's wrong with me and being about to crack up altogether it's refreshing and frightening to hear others have been on a similar journey.
It amazes me how difficult it is to get help when you are in pain and suffering so much! I understand it's difficult to diagnose some illnesses but what's difficult is to get people to listen to you and appreciate that everything isn't always 'text book'!!
Only yesterday as part of my lengthy and expensive journey to discover what the hell is wrong with me, I was sitting in front of a Neurosurgeon for the ten minutes he allowed me & he told me my problem was I needed to loose weight (I am not much overweight BTW, have put on a bit due to being in pain and not being able to exercise!) & the best way to do this was to skip breakfast so my body starts eating it's own fat. That expert medical advise cost me EUR150!!
Anyway it's been a long battle to get answers to sore joints, chronic fatigue, sore eyes, headaches to mention but a few, but reading stuff like this is an amazing source of support so thank you all!
S- jackfrost
- 2012-02-09 @ 17:56:13
One thing I would try if I were you is to cut out all dairy and gluten products out of your diet and for two weeks eat only foods with no additives ..only natural ingredients.
see if any of the symptoms go away
hope you win your battle!
- Thyroid Sufferer (Visitor)
- http://www.thyroidhelp.org
- 2012-02-16 @ 22:19:08
Extremely helpful mate....please keep us updated and I would like more info regarding food allergies. I am having a leaky gut due to thyroid and adrenal issue and I am struggling with it. I have tried cutting dairy and gluten for two months from my diet but do not feel any positive results- AmandaB (Visitor)
- 2012-02-22 @ 12:07:53
Thanks for writing this blog. I'm hypo and seem to have a constant throat problem, uncomfortable and hoarse voice off and on. Told my levels are normal (on 100mg) a day. Asked repeatedly if I can see an endocrinologist but not getting anywhere. Put on 3 stone - any food tips really would be great. Hope I don't sound too moany.
Please keep writing your blog - its a lifeline.- jackfrost
- 2012-02-22 @ 17:13:49
you need to ask what your TSH levels are. also if they are normal you need to ask if they have checked your T3 and T4 levels.
How long have you been Diagnosed as if it is not that long the throat problem can take a little while to die down as you may have a goitre. have you been pregnant recently as that can cause temporary Hypo....there are many ifs and buts...so research the subject so that you can go to the Doc with relevant questions ...knowledge is Power.
- Mary gallaway (Visitor)
- 2012-02-27 @ 16:27:04
Hi jack,
I have hypothyroidism as well. I have so many questions for you. Where can I email you. This sickness is driving me crazy.
Thank you
Mary gallaway- jackfrost
- 2012-02-27 @ 19:32:16
- Mary Gallaway (Visitor)
- 2012-02-29 @ 16:10:04
Thanks. I'll be sending a very long email and I hope you have time to read it- Lovelyn (Visitor)
- http://www.natural-remedies-world.com/natural-remedies-for-hypothyroidism.html#axzz1pTDQvNGf
- 2012-03-18 @ 21:25:41
Thanks for sharing your story. I was recently diagnosed with low thyroid function and have been scouring the web for information. Than I put everything I found out about it on my website. I've been using coconut oil to boost thyroid function and am really watching my diet. I've also added sea vegetables to my diet. I've recently decided that I should start juicing and maybe that would help. I bought a juicer but I'm not sure what to juice. I tend toward dark green leafy veggies, but those aren't really ideal for thyroid health. Looks like it'll have to be beets and carrots for me.- jackfrost
- 2012-03-19 @ 18:59:37
- Susie Q (Visitor)
- 2012-03-22 @ 22:18:55
Hi there
I left a short note above & having since gone away and done more research I am really feeling that I have a Thyroid problem of some sort. I hope you don't mind if I ask a question as I mentioned above I am struggling to get help!
This all started over a year ago for me & I thought maybe it was Thyroid. My GP tested my bloods - general bloods and added in Thyroid function which came back normal.
My question is this...can there be Thyroid problems that are less easy to diagnose and need more specific tests?
Even reading your first post and looking at your symptoms, most of them I have and I am convinced it is but if a basic Thyroid test says it not a Thyroid problem is that the end of it or can it be tested further?
Sorry for asking, it's just so difficult to get help/information on this.
Thanks so much
Susie- jackfrost
- 2012-03-23 @ 18:45:34
I do sympathise with you...there are other complaints that show the same symptoms..however you have to get a bit in your face with your Doc...you must insist that he/she gets to the bottom of your problems...after all they are there to serve you not the other way around...saying that however sometimes doctors do just a basic TSH check and if it comes back within the range they just say .."Its ok"..you need to go to the doc with questions written down and knowledge of what they should check for...What was your TSH reading?...did they check your T3 and T$...did they check your anti bodies...here is a link that is just great and should help you!!..let me know how you get on...
http://thyroid.about.com/od/hypothyroidismhashimotos/a/tshnormal.htm
- Susie Q (Visitor)
- 2012-03-22 @ 22:39:07
Hi there
I left a short note above & having since gone away and done more research I am really feeling that I have a Thyroid problem of some sort. I hope you don't mind if I ask a question as I mentioned above I am struggling to get help!
This all started over a year ago for me & I thought maybe it was Thyroid. My GP tested my bloods - general bloods and added in Thyroid function which came back normal.
My question is this...can there be Thyroid problems that are less easy to diagnose and need more specific tests?
Even reading your first post and looking at your symptoms, most of them I have and I am convinced it is but if a basic Thyroid test says it not a Thyroid problem is that the end of it or can it be tested further?
Sorry for asking, it's just so difficult to get help/information on this.
Thanks so much
Susie- Susan Haughton (Visitor)
- 2012-04-12 @ 15:53:04
Hello Jackfrost. It seems a lot of doctors have been ignoring you and what you describe on here. My name is Susan Haughton, I am a GP who works in Sheffield. Allow me to better explain what I feel a lot of doctors, who will have been too busy trying to see you to the door, have clearly been unsuccessful in doing.
I feel you should be aware that the majority of the symptoms you have described are common amongst people who are, simply, growing old. From the age of 40+ (Perhaps older, depending on your lifestyle) you will absolutely /definitely/ get the onset of the following of your listed symptoms:
Low energy, fatigue, lethargy, need lots of sleep (8 hours or more) and slow to get going in the morning.
Tendency to significant weight gain and difficulty in losing weight.
Low blood pressure and heart rate and high cholesterol levels.
Menopausal problems including severe cramping, early and late onset.
Low sex drive.
Poor concentration and memory.
Swollen eyelids, face, general water retention.
Thinning and loss of hair.
Headaches (including migraines).
Infertility and impotence.
Hypoglycaemia.
Constipation.
Dry, coarse or thick skin.
These are all literally just signs of an aging body. For a not very active person they will usually come at the age of 40, but for someone who has lived an active lifestyle (a soldier such as yourself) they can begin a bit later, usually from 50 or even up to 60.
As for the following:
Uncomfortably heavy during or since childhood.
Quiet and shy child.
Being quiet or shy is quite simply a personality aspect. You can't relate such to a condition in your later years in life. And being uncomfortably heavy during or since childhood factors varying integers of your lifestyle whilst growing up... Diet, activeness, stress, far too many to allow you to simply point it down to one condition.
In all honesty, it seems that, from a medical perspective, you're captivating your audience of people who may genuinely worry about their health by writing a list of symptoms that they are guaranteed to feel, reeling them in with false hope of a condition they probably don't actually have. The reality of it is they need to face the fact that they are in an ageing body.
In short; If I'm being generous I'd say only three of your listed symptoms point to hypothyroidism. The rest are simply your body starting to break down because it's not what it used to be. Try taking up a sport, an active hobby. Unless you're 70+ you literally have no excuse, regardless of how tired you are. If you exhaust your body through sport or high exercise your body will release endorphins (commonly referred to as a "Runners high") and you will feel wide awake for a good 6+ hours afterwards.
I'd also suggest, if you genuinely feel all of your listed symptoms, you change your diet. If you want to take what I'm saying seriously and start to feel better, I'd be more than happy to give you my E-Mail address and write up a monthly diet plan for you that would be cost effectiove and provide you with adequate nutrient value to, not eliminate, but certainly slow down many of your symptoms (because they are a natural part of being a human being I'm afraid to say they are unstoppable, but not uncontrollable.) as I have done for a patient I had in my practice a year or so ago who suggested she had hypothyroidism. I can happily say the majority of her symptoms, after simply having a healthier lifestyle and better diet, are slowing down (not only that, but she took up squash to get more active and seems to associate more with people too!)
Anyways, if you choose to ignore what I've said, that's fine too, but I'm quite literally offering you a way to cure the majority of your symptoms, the only downside is you won't have a "Condition" to associate yourself with, I'm afraid.
Anyways, please keep in touch.
Susan.- jackfrost
- 2012-04-12 @ 20:40:53
I appreciate your comments, and as I have said I am not an expert and that anyone should always consult a Doctor...
what I have written is my own experience, as for the symptoms well you need to contact the BBC as they have also listed the above as signs of Hypothyroidism, also the BUPA web site, thyroid about you ..and of course Thyroid UK...who all list what I have listed.. and have stated that if you feel many of these symptoms that you should see your GP straight away. As a GP i am sure that you would undertake a TSH check should any of your patients suffer from a combination of these symptoms
I am a bit concerned that as a GP you disagree with everyone else am I to believe you, or what other experts have written..
what I do agree with you is that all of these symptoms can point to other things and if your blood tests come back normal then you have to look for other reasons...again it is my own opinion but it is as important to discover what it isn't.
As for all my symptoms being as a result of my age I guess I am just fortunate that after my levels went back to normal ALL my symptoms went away...lucky old me ...I guess it might just be a coincidence!!! and I continued my work as a front line police officer till my retirement and now work as an ambulance driver.
I thank you for your offer of help as I did feel all the symptoms I described ..but they were caused by the fact I have Hashimoto's thyroiditis. fortunately with my levels back to normal via my prescribed medication I am back to my normal self!
For anyone else reading this well I cannot stress enough that I am not a qualified person and what I have written is my opinion...But I refer you to any thyroid site you may wish to choose
one of the best sites is below
http://thyroid.about.com/bio/Mary-Shomon-350.htm
Remember if you suffer from a combination of the listed symptoms you need to discuss it with your GP. Some will give you a blood test and investigate the problem and hopefully get to the bottom of it or some might book you a squash court.
jack
- bellamish (Visitor)
- 2012-04-13 @ 08:49:27
I think it's sad that someone who calls their self a GP is so narrow minded when it comes down to an incredibly debilitating disease.
Please feel free to tell my 19 year old daughter who has suffered with Hashimotos since the age of 9 that her symptoms are merely old age. Although there are days she says she feels about 90.
I have have also recently been diagnosed with Hashimotos and when you talk about merely exercising to encourage the release of 'feel good' hormones thats all well and good, however when a persons joints and back are so painful they can hardly walk or they are so physically exhausted, for no reason they can hardly walk, telling them to play squash for example is down right insulting.
Have you ever had the nightmare of going from a highly articulate person, to being unable to string a sentence together, not being able to remember how to drive or remember the route home? Your brain function slowing down and not being able to comprehend a simple instruction? No? Very unpleasant. The worst feeling is the cognitive moments between, where you think you may have dementia or worse because you are aware of what's happening but cannot do anything about it.
I thank god you are not my GP as you obviously have no idea of the effects this disease has on people, my dentist who by the way had to treat me for fractured teeth which he stated (having researched hashimotos during his time at uni and completed a paper on it) was a side effect of hashimotos; seems to have more idea about the disease than most GPs.
Please don't tell people how they feel or even how they are supposed to feel, you can't begin to imagine if you have not been in that position, how absolutely wretched this disease can make people feel especially when it has gone undiagnosed for a long time.
You would very obviously, by your comments be surprised how many people have been in the same place Jack was.... and I'd hazard a guess that's because cynical doctors have not done their job properly by merely listening to their patients.- Lyn (Visitor)
- 2012-04-13 @ 11:45:18
Hi, I have just read through your entire blog – thank you for writing so much. I was diagnosed with Hypothyroidism in 1996 and started on Thyroxine. It never made me feel any better, but I didn’t think to question the GP.
In 1999 I had to walk home one evening from work in the pouring rain and my feet started hurting. It got so bad that I went to see the GP and after a blood test, she told me I had Rheumatoid Arthritis. And so I jumped on the merry go round of hospital visits, blood tests and vast amounts of vile medicine which made no difference except to make me feel ill and bring me out in rashes.
Over the years since then I have tried other tablets and combinations, none of which have made the slightest difference. The disease has just got worse and worse until in 2010 I had to give up my career as a teacher. I was always so tired and bad tempered. For a while I did some private tutoring but by the autumn of 201l, I was experiencing such intense and relentless pain in my hands, wrists and feet that I couldn’t drive. So, now I sit at home day after day in too much pain to exercise or do anything at all. I have put on over a stone in weight, the house is a tip, I can barely manage to walk to the shop at the end of the road, and I have no money. The benefit office tells me I don’t have enough NHI contributions to make me eligible for any financial help and so the stress and depression just keep getting worse.
Most days I just want it to end. The only thing that keeps me going is my 18 year old son who is preparing to go to university in September. When he goes, I don’t know what I will do. He is my best friend. My husband is a stranger and though I know he works hard to pay the bills, he offers no emotional support and actually I spend most of the day wishing he just wouldn’t bother coming home. He has often said in the past that he doesn’t believe I have RA but that my symptoms are more likely connected to the thyroid problem. After reading your blog I am beginning to wonder if he could be right.
I have a GP appointment next week (this is a new GP – I had to change because I couldn’t drive to the other surgery anymore, but that may be a good thing) and I will now go armed with a battery of questions.
I just hope that somebody can help me because I cannot go on like this. I have all day to sit and torture myself thinking about all the things I used to be able to do that are now beyond my reach, getting even more stressed and depressed because I know I should be doing some exercise but can’t, that maybe I am causing even more health problems for myself. Last year I was still able to overcome the pain long enough to spend a few hours skiing with my son during a week’s holiday in Andorra. Now I can barely hold a pencil, even typing this is hurting my wrists. This is not a life and I can’t deal with it.
But thank you for your blog. It is the most informative thing I have ever read and it has given me a tiny bit of strength to go and do battle with the Health Service. Wish me luck, I will let you know how I get on.- jackfrost
- 2012-04-13 @ 23:08:17
Indeed good luck, what you need to impress on the doctor is that you need to get to the bottom of your problems, they need to check for different things, it may not be your thyroid but it is important to find out what it isn't...and then you are left with what it is. I hope your new GP finds the answer...please let me know how it goes.
Jack
- Maatkare (Visitor)
- 2012-04-15 @ 18:10:01
I came across your blog researching symptoms for hypothyroidism,thank you Jack for telling your story.
I can only echo comments already made regarding the fight to get diagnosed early. My sister had suffered with hypothyroidism for years before getting treatment. Now symptoms are reappearing the fight is on again to get an increased dosage.
My own levels of TSH are constantly elevated although free T4 is within range, and despite having antibodies to parts of my thyroid due to Rheumatoid disease and an enlarged thyroid, I cannot get treatment. I have recently had my cholesterol checked which was 7.7. I have never smoked, do not drink and have a healthy diet. I have read that high cholesterol can be a symptom of hypothyroidism, so I guess my fight is just beginning.
A reply you have received from a Dr Susan Haughton really bothered me, so I decided to check if she was a real doctor as I felt her attitude was out of order.
There is a Dr Susan Houghton in Sheffield (different spelling to the Susan who posted here) who is doctor at Arden Medical Centre Sheffield who also appears to be a Consultant in Obstetrics & Gynaecology. However, there is a Susan Haughton (correct spelling) in Sheffield who is a nursery nurse and trustee of Barnsley Independent Alzheimer And Dementia Support, but she is not a doctor.
I cannot believe a doctor would be so callous in their reply to your post, so if Ms Haughton is still active on this thread, perhaps she could state her credentials- jackfrost
- 2012-04-15 @ 18:55:05
Good luck with getting it sorted, As for the good doctor, I also had my suspicions and I checked the IP address location which is not near Sheffield. also there was no GP with that spelling. this person has since posted two other comments which were outrageous and insulting to someone else that had commented, there was no way a GP would have said the things they said...I deleted the comments and will do so if they continue to post.
Good luck and thanks for the post.
- Terri Haney (Visitor)
- http://kiznkitten.blogspot.com/
- 2012-04-26 @ 02:42:09
Well add me to the list of people struggling. I know what's wrong now but can't find anyone to treat it properly. I have Peripheral Tissue Thyroid Hormone Resistance, a genetic condition. I am looking for an endo that doesn't have their head up their ass. So far no luck. I wrote my own blog and I email Janie at Stop the Thyroid Madness periodically when I get discouraged.- joe weber (Visitor)
- http://runninghealthy.blogspot.com/
- 2012-04-27 @ 15:36:14
For the past year or so I have been suffering symptoms that lead me to believe I have adrenal fatigue. About two years ago I noticed that my legs/ankles were a little puffy and red after running. I am a runner and I thought that it was kind of strange. I ignored it for a little more than a year and then it suddenly spread to my whole body about five months ago. I woke up swollen everywhere. Ever since then I have had hot flashes where I will be sitting tin class and out of o where my body feels like it’s on fire and I sweat a ton. I also feel tired all the time and am not able to run anymore. Any type of working out makes the symptoms worse. I have been to the doctor so many times and am told that I am perfect. I know I am not perfect. They have done every test in the world. I recently went to a homeopathic doctor that told me I have adrenal fatigue. I was given herbs and things to take and have been eating a perfect diet; only fruits and vegetables, no dairy or gluten or sugar. I don't know what to do anymore so if anyone has any ideas of what it could be that would be a great help to me. also take a look at my blog- Michelle (Visitor)
- http://www.facebook.com/thyroidpetition
- 2012-06-28 @ 14:21:01
Hello!
Love your blog!
Have you heard of the int'l thyroid patient petition for better care?:http://www.change.org/petitions/endocrinologists-patients-with-thyroid-dysfunction-demand-better-care?=1&fb_source=message
Only 8wks old, and has over 3000 signatures of support from 65 countries. Our goal is to every patient aware of this opportunity to self-advocate. We all know we need change and it will take large numbers to effect change.
We are also trying to unite all of the thyroid bloggers and websites and gain their support to help us strengthen our global network.
If you can help us reach your members by blogging about us, we will gladly list you as a supporter. https://www.facebook.com/notes/patients-with-thyroid-dysfunction-demand-better-care-petition/websitesblogs-supporting-our-ptd-petition/344493798956111 https://www.facebook.com/notes/patients-with-thyroid-dysfunction-demand-better-care-petition/noteworthy-individuals-supporting-our-ptd-petition/343704432368381___##0##___
Here is an interview by Sarah Downing to help you get to know us better:http://sarahjdowning.com/2012/06/05/interview-with-the-initiators-of-the-petition-patients-with-thyroid-dysfunction-demand-better-care/
Thank you in advance for your support,
Michelle
Michelle T. Bickford
Author
Patients with Thyroid Dysfunction Demand Better Care
www.facebook.com/thyroidpetition- Jennifer (Visitor)
- 2012-07-07 @ 13:36:31
Hello
Like all the others here I want to thank you for taking the the and trouble to write all of your experiences surrounding this horrible condition.
I was quite astonished at the input from a GP who seemed to be dismissive of much of what you had written, despite you having experienced it yourself. I'm afraid that probably illustrates one of the main problems we have when asking for help from the medical profession. We do tend to be given levothyroxine and told to go away and if we dont then they become defensive and from then on it is an uphill battle for just about anything...or that has been my own experience.
I completely dispute her assumption that these symptoms are merely 'getting old'. What utter tosh !
E'er so briefly I was diagnosed hypo about 14 years ago and prescribed levo but what I later discovered was a way too high dose. I got daily optical migraines and when I told the doctor he just told me to keep taking them. I did'nt and battled on alone for many years until I developed an uncomfortable goitre and tried the stuff again. This time after reading more about the subject decided to go up slowly and to stick to the same brand as I'd noticed switching each month brought back these migraines. Ever so slowly I increased the dose having found a brand I could sort of tolerate and stayed on it for several years and indeed felt better and the goitre all but disappeared.
Then the drug company made some changes and I had the same problem all over again and had to stop. Back on it again some months later, this continued for a bit longer until quite recently the brand I used was withdrawn and I found I was unable to go out virtually for fear of one of these blinding headaches, after switching to yet another brand and them returning.
My GP was worse than useless I'm afraid and does'nt even believe the tablets are the cause (. An endo I saw to ask if I could try pure thyroxine in case it is an ingredient of the tabs that caused me problems said it is too expensive and that was that.
I feel utterly let down by these so-called professionals....highly qualified, very well paid people who have one standard treatment, one standard blood test....when I asked to have my T3's included in a blood draw, he agreed, wrote it down, but the lab decided that as my TSH was suppressed sufficiently, not to do it, so I still dont know what it is now or ever has been in fact.
I am currently not taking anything except some supplements prior to trying an iodine therapy and actually dont feel too bad with the exception of having a goitre again which is nasty but which after doing much research, I hope might reduce once I get into this therapy.
I can come back and talk about how it goes if you'd like at a later stage )
It is so good to read about someone who is conquering this problem though and having a better life and thankyou again for sharing your journey thus far.- london life coaching courses (Visitor)
- http://kristopherbr615.over-blog.com/pages/ways-to-benefit-with-life-coach-training-and-life-coaching-courses-7804998.html
- 2012-07-17 @ 16:30:47
Hi there, just became alert to your blog through Google, and found that it is truly informative.
I am gonna watch out for brussels. I will be grateful if you continue this
in future. Lots of people will be benefited from your writing.
Cheers!- Jimmy (Visitor)
- 2013-01-06 @ 10:53:49
Hi Jack
Just found your blog about your battles with hypothyroidism. Thanks so much for sharing them as they are a great encouragement for me as a carer. My wife was diagnosed with hypothyroidism in November this year by a private doctor, Dr Skinner.
My wife has been unwell for going on 12 years' she is now in her mid 30's and has virtually all the symptoms you have described. For years she has battled with doctors to get the correct diagnosis. She eventually was seen by an NHS
physician who diagnosed as having ME in 2009. My wife was given no further support from the NHS and was told that the doctors could do no more for her. She was told by the medical professional to check the internet for further help!!
She to was told to exercise more by her GP when she could barely go to work to make a living. Just wanted to include this after reading the gp's comment on this blog :-(
After another relentless 3 years of suffering and stress for both of us, we decided to do things on our own. My wife had a gut feeling that she too was hypothyroid as she also has pernicious anaemia which is an autoimmune condition linked to hypotyhroidism. Just so the readers know my wife and I both have a scientific education, I have a Bsc Hons in Biomedical Sciences and used to be a biomedical scientist, my wife has been a research scientist for 17 years.
We decided to get her blood tested privately at blue horizon medicals. This is a private lab who send out all the blood vials and can test for all the thyroid blood parameters within a week of receiving the blood. We went to the Nuffield hospital in our local area to get the bloods taken and simply posted them off in a pre paid envelope.
We got the results back TSH was 4.5 and T4 was 12. Even we could see there was a problem. A high TSH and low T4 is indicative of a hypothyroid condition. A normal TSH level in most individuals tends to be around 0.8, this is gained from research and actually seeing the assay results first hand in the laboratory. The T4 should be around 22-24.
My wife was seen by Dr Skinner who spent at least 2 hours reviewing my wife's symptoms. After the consultation had no doubt that my wife was suffering from hypothyroidism and started her on thyroxine.
We are just at the start of our journey and like you expected the pills to work instantaneously but now realise it can take many months before the body starts to heal itself.
Many Thanks- flights to jeddah (Visitor)
- http://www.hajjandumrah.co.uk
- 2013-03-13 @ 07:37:28
I recently came across your blog and have been reading along. I thought I would leave my first
comment. I dont know what to say except that I have enjoyed reading. Nice blog.
I will keep visiting this blog very often.- Jen (Visitor)
- http://thyrominereviews4u.com/
- 2013-03-20 @ 19:08:39
The thyroid is a funny thing
wrapped inside your neck
I’m strong I’m tough I’m young and bold
so thyroid…..what the heck
I so loved these lines. I laughed to myself when I read it. LOL!
I have only just discovered your blog and I would just like to say how helpful I have found it. I was diagnosed with Hashimotos in 2011 and it has not been a very easy time since then. My blood tests are now 'optimal' according to the endocrinologist but I still feel rubbish. Your posts have given me a lot to think about and I am very grateful for that. I tried gluten free when I was at my worst but I think I will try it again. Great Post Thanks- flights to jeddah (Visitor)
- http://www.hajjandumrah.co.uk
- 2013-03-27 @ 10:01:01
I recently came across your blog and have been reading along. I thought I would leave my first
comment. I dont know what to say except that I have enjoyed reading. Nice blog.
I will keep visiting this blog very often.- DrMorsillo (Visitor)
- http://www.drmorsillo.com
- 2013-08-28 @ 00:07:39
Very true...many cases of hypothyroidism are being misdiagnosed as depression, which is why many will not fully respond to treatments. This is why we do a complete assessment of thyroid function for any patients with low mood or depression at our Naturopathic clinic (http://www.drmorsillo.com).- Quit Smoking (Visitor)
- http://quitkey.com
- 2013-09-02 @ 14:06:48
I wanted to thank you for this excellent read!! I definitely loved every little bit of it.Cheers for the info!!!! & This is the perfect blog for anyone who wants to know about this topic. You know so much its almost hard to argue with you .........
thanks- Aliya Funda (Visitor)
- http://thehypothyroidismsolutionfacts.com/
- 2013-09-29 @ 13:24:16
This blog gives me the information that I needed regarding sign of thyroid problems. It really helped me in knowing the whole scenario of having a thyroid problem. Appreciated what you have here, thanks a lot!- Serijkol
- 2014-01-21 @ 12:57:13
Thanks for My thyroid journey from the start to now - Thyroidhttp://www.jameshallison.com- Aamiya (Visitor)
- http://www.providence.co.in/
- 2014-09-03 @ 17:53:01
Nice article. Truly inspiring.- Janet Jones (Visitor)
- http://Facebook
- 2014-09-16 @ 11:02:32
Been on thyroxine for 6 years now. Always feel like crap, ulcers in my mouth, constant pain in my joints, some days I can't even walk coz of the pain. So tired even after sleep of more than 8 hours. Depressed and tearful all the time. I work 30 hours per week and just cry and sleep the rest of the time. Weight gone up to 13 stone 12 pounds after always being 8 stone before. I also have fibromyalga with simular symptoms as thyroide so I don't know which is causing me the most symptoms- deleted user (Visitor)
- 2014-12-17 @ 10:41:56
Thanks for My thyroid journey from the start to now - Thyroid free followers