IS ANYONE ELSE HERE IN SAME SITUATION?

I've been hypothyroid for over 2 years now & don't take thyroxine as the doctor prescribed. I've stopped smoking, pay a lot of attention to nutrition, vitamins, herbs & spices that will help. Adrenal fatigue caused my thyroid problem in the first place. I'm hoping my body will re-balance naturally but don't want to further damage my health by not taking thyroxine.

41 Replies

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  • How do you actually feel? If you are fine then you must be doing something right! Have you had recent thyroid blood tests? It would be interesting to see what your levels are.

  • Sometimes I feel like I'm getting better, my nails have lost nearly all of the white lines they used to have from vitamin malabsorption? & my dry skin (eyelids especially) has gone. Fatigue comes & goes, exercise helps me feel more positive & energetic. I tend to feel fatigued during the day then perk up at night & have problems getting to sleep. I'm also gradually gaining weight. Joint problems might becoming an issue, had a painful swollen ankle just from running then same in my wrist from opening a tight jar :S

    Blood test results...

    Feb 2011: TSH 9.34 Free T4 13.6

    April 2011: TSH >100 Free T4 6.2

    March 2013:TSH 21.18 Free T4 12

    Don't really know what to make of the results, the latest results from a different GP surgery than the 1st two. Thanks so much for your reply. I only joined here tonight & never have anyone to talk to about this stuff including my GP who send me away with a page that explains hypothyroidism in more basic terms than what I already know.

  • Well your body is definitely asking for some help, because your TSH is high and your T4 low. What is your objection to taking Thyroxine? I understand if you hate taking medication but I think you will have to give in soon or you may suffer damage to your body in ways you cannot see and feel. What does your doc say about these results?

  • My doctor really just says I'm hypothyroid & should take thyroxine. I do hate taking medication & always have the faint hope I will get better. I've read that iodine in vitamins can cause a high TSH reading but not sure if that's true. I was taking a multivitamin with iodine at time of my last blood test but have now switched to one without. I thought that my Free T4 doubling from 6.2 to 12 was a good sign? I do feel a throbbing/uncomfortable feeling in my thyroid now & again :(

  • Well, it is your call but strangely most people on this site are struggling to get some Thyroxine!

  • You won't get better, your thyroid is in trouble. Miracles do not happen. Co-operate with your doctor, believe him/her, take the thyroxine, you are so lucky to have such a doctor, believe me and scores of other people.

  • I think you should take the thyroxine it replaces what your body is lacking iron..it takes time but you will find a great deal of difference in no time ....and you will be foolish to not take it .....I suggest you read about the problem and then you may understand it better there are lots of books on the subject ...including "Thyroid UK"..I needed it and have taken it for years as I was not well, because I needed it ....you can still eat sensible and a good healthy diet ..best wishes .....Margaret

  • Much as I like the idea myself ,as I like holistic approaches where possible, I can't see you realistically staying healthy without trying out thyroid replacement treatment options.

    Put in a rough and ready way, your average TSH is 40+ over three years, which is about 10x a realistic upper limit for needing treatment and you weill only find it harder to reset your hormones if you leave it longer.

    People are always rightly complaining on here that they were treated late by GPs and had a harder time than needed- so the history is there to see.

    If you really can't find a solution on meds then that's another matter but your health is worth too much to delay for long.

    Just my opinion- you may have years of 'getting by' but in the end the trend will out unless you have a special ruse up your sleeve :)

    PS: I don't like meds either, believe me -but I have to take 6 in all and am quite fit!

  • Thanks to you all for your input. Ironically I'm a complementary therapies student & didn't pass all my course last year due to the brain fog & fatigue. Am hoping to go back to college next month to complete it so I think I need to try thyroxine. I do value my health too much to risk further problems & can't have sore wrists if I'm going to be a therapist. At least I've found out lots about nutrition & healthy living along the way which are things I will continue to follow :) My Mum, 2 Aunt's, 2 Cousin's (all female) have thyroid issues so I was predisposed to having it also.

  • Hi el, yes, might as well face it if in two years you continue to deteriorate....although did you try iodine at all? If you have Hashimoto it would not be a good idea now but a low dose as a last ditch effort might be reasonable. You need a diagnosis though.

    Don't look at desiccated hormone as a pharmaceutical. I guess even T4 which is a prohormone is not really medication per se. You are just nurturing your hormonal need which can have a domino effect if you let it slide too far down.

    Doctors in the UK do not like to offer natural thyroid extract. I don't know if the over the counter thyroids are worth trying but they are out there also. I don't care for T4, thyroxine, Synthroid, etc. personally but some people tolerate it.

  • yes it runs in families also !!!!

  • yes it runs in families also !!!!

  • When younger, I always went to see an acupuncturist. Was very good and my children responded brilliantly to him. I did what I could to keep the family healthy in natural ways, growing veg etc. My accupuncturist said there is one thing no decent practitioner would compromise on. If you are hypo your thyroid is in trouble. Do not mess with your thyroid. I know not a lot but a well respected accupuncturist said he would take thyroxine if he needed to and he would not be compromising his healthy lifestyle by doing so. Your choice! alson

  • Not sure to whom or why you have made this suggestion, but for clarification, these products will not do anything to replace the missing thyroid hormone that elpig's body and brain are clearly crying out for.

  • I was a bit like you too Elpig. I knew I was hypo and it took ages to convince my GP but I eventually was prescribed Levo but didn't take it. I had been trying the natural route, by diet, cutting out gluten etc but nothing was changing. My symptoms were not half as bad as some but my moods were becoming too much to cope with so I eventually gave in a couple of weeks ago and began taking Levo. I was told that I was raising my chances of heart disease through raised cholesterol and as heart disease tends to run in my family it was too big a risk not to take it. It's early days yet but I certainly don't feel any worse and my temperature is gradually increasing so hopefully I'm on the road to recovery. I still hate taking the tablets...but it's got to be done :-)

  • Have you researched candida? There is a link between candida and thyroid problems I'm currently on this candida diet, as I believe I might be suffering. I've even managed to lose some weight when unable to before. One girl on this sight managed to reduce her thyroid medication after being on this diet for a month.

    Hhttp://www.candidayeastinfection.com/

  • Come on! I know Candida is intrusive and bad news- but Elpig has already reviewed her approach to thyroid meds after the considered comment here.

    Backing off the dose is not the same as prime medical needs.

  • I didn't suggest she backed off the dose, I was merely suggesting she researched candida as she studying in that field of work in nutritional medicine. I would never tell anyone what to do. Even I wouldn't stop taking my own medication unless advised to by my own GP.

  • The problem in discussion is there is 'no dose' right now!

  • When there are so many people on this site begging the GP's to perscribe Thyroxine because they feel so ill ....I really find it hard to believe that some one who has actually managed to be diagnosed and perscribed it would't take it....it's a life saver......When I was diagnosed (after a a hard hard fight) 13 years ago ....I asked my GP what would have happend if I had't been diagnosed....his reply 'You would simply have deteriated and your body would have started to shut down'......so my advise to you would be ....start your treatment.....it is not a drug it is hormone required by the body to function correctly..... if you were a diabetic would you not take insulin?......every day you don't take it your thyroid and your adrenel glands have to work harder.....and are becoming further damaged...once the damage as been caused the thyroid does not repair it's self it just stableisies....as you are new to the site I would take some time out to read some of the articles from people desperate to be diagnosed.....and then you may consider your self a very lucky young lady to be given the chance to start to get your health back on track... keep to all the other things you are doing they will only help to back up your thyroxine treatment.....don't do to much hard exercise this will only put a bigger strain on your adreanal glands.....speed walking instead of running .....perhaps some swimming...don't beat yourself up because you have to take medication... be kind to yourself....and please take your thyroxine...it will take a while for the benefits to show....but if you don't things won't get better on there own.....best of luck

  • I agree with all your comments !!!well said !!!

  • I agree- there's a 'self selecting' boost to problems with T4 on this site [due to NHS neglect] -but there's a 50/50 chance it will do the trick -and the alternative is worse.

    Things are predicated to get better, too.

    There's a lot of activity about this- & even in hospital a Dr. [unprompted] mentioned I would probably have to push for more T4 treatment, probably due to my age causing too much caution.

    I didn't push on this- just glad to hear some 'real politic' for a change!

  • You should probably give in and take the thyroxine as your body will suffer without it eg high cholesterol, heart disease etc and you must feel rubbish. but if you were really keen to attempt to cure yourself you would probably have to go as far as trying helminth therapy.

    en.wikipedia.org/wiki/Helmi...

    autoimmunetherapies.com/

    And perhaps try dessicated thyroid like erfa (in combination with thyroxine) - small chance it could induce something called oral tolerance (the capacity of the immune system to recognize substances taken in through the digestive system and to weaken or suppress the immune response to them).

    en.wikipedia.org/wiki/Immun...

    But there are no guarantees these things would actually cure you.

  • Can I just say in response to Natalie_Edinburgh....there is no cure for Thyroid Disease only treatment ....if any one out there is waiting for one....sorry your going to have a long wait.....all of us on this site are manageing our syptoms with the 'help' of our GP's....only we know how we feel on a day to day bases...it is up to us to stand our ground and get the best treatment we can.... if this means a continuous battle with GP's and endo's than that's what we'll have to do...unitl GP's treat us not only on our Tsh levels but on our syptoms....no one is going to 'feel well'.....

  • I'm new to this site but have spend a LOT of time in the past 2 years since I was diagnosed researching hypothyroidism. The initial cause was either a viral infection or chronic stress, I was hyperthyroid to start with. Maybe the cause doesn't matter now but I feel it's my adrenals that are the main issue. I have tried most things, tyrosine, sea kelp, I have a constant supply of virgin coconut oil, I eat 1 brazil nut every day for selenium, linseed, parsley regularly as it nourishes the thyroid, I read that red & black radishes were used for thyroid issues in the old Soviet Union, I follow an alkaline diet mostly, drink hot lemon, apple cider vinegar, cayenne pepper, turmeric & honey most mornings. I realised from getting an ankle injury then wrist injury recently that my joints have weakened.

    The one area I fail at is having a good sleeping pattern. I would be tempted to try fix this before taking thyroid replacement hormones but enough is enough, I want to feel normal again. Hadn't heard of Helminth Therapy before, the thought of it gives me the screamin' ab dabs :P

    I will ask my GP next week about natural desiccated thyroid, if he won't prescribe that then thyroxine is fine. The idea of taking it at bedtime makes sense to me. I want to eat breakfast, take my multivitamin & omega3 first thing in the morning & taking at bedtime will have less chance of reducing absorption due to food

  • I'm borderline, on the figures, but have felt rubbish for years.

    I did an Adrenal survey test on line but this confirmed what I thought- I'm over the worst of that, since retiring, but still low energy, bad sleep patterns etc.

    I would like to try what Dr D-P suggests in his book and get adrenals totally right before going for replacement- but it's an imperfect world.

    With your figures shouting out, less of a problem deciding for you now.

    Good luck.

    I doubt GP will step out of line and do NDT for you, so be prepared.

    I've found Iron [Spatone] boosts T4 effects but don't co-administer- and take T4 2 hours [minimum] after food if late at night. Not with calcium either.

    Selenium is important, too. [2 Brazils daily- you'll go for that :) ]

    None of this mentioned by GP -they just go off the screen mostly!

    With your awarenes on health you will add to discussion/knowlege like many do on here and monitor your own progress well so please update us.

    Your GP won't have to drive you on getting healthy, anyway!

    PS: I've found my sleep patterns have shifted 1 hour later on very low dose T4 -so there is a correction, even without adrenal support.

    Due to length of time you've been undersupplied I would suggest a slow start,too.

  • I don't understand why there isn't more support for adrenals, GP's seem to only treat the thyroid. I was eating 2 brazil nuts a day but rationing myself at the moment due to finances. I'm hopefully getting a new GP tomorrow so close to starting thyroid replacement!

  • 2 a day is fine if you haven't got a known deficiency in selenium.Do a two for one deal H+B- and keep in the fridge. The best ones aren't going yellow on the outside too early and then they don't give your system a worse job to do- detoxing the oxidisation.It is difficult to find a constant good source of them. You know when you find a good batch, though.

    Good luck with the appt. -and more so with getting away on the Levo well.

  • I know exactly how you feel. I was having problems after being under severe stress and my doctor decided that as I was borderline hypo, he would put me on levo. For the first year all went ok but into year two I started feeling tired, my blood pressure started to elevate and the problems with my menopause got much worse. I eventually made an appointment with Dr Peatfield who discovered I was suffering with adrenal fatigue (confirmed by tests later) and that to treat my thyroid without first addressing the adrenals, was damaging. I think my thyroid was out of whack because my adrenals were not functioning correctly. I am now taking armour on my own and under the guidance of my friend P. I am resisting BP medication in the hope my blood pressure with stabilise and can't wait to feel better again. A recent study warned taking T4 alone increased the risk of lung cancer. Oh joy. But giving patients this synthetic rubbish costs £1 a month against about £20. A no brainer!!!!!!!!!!!!!!!! I recently lost a very close friend who was on a large dose of that muck and she dropped dead after heart attack. She was deeply depressed and very over weight. I am on a course of adrenal support now and have and continue to tweak my diet in favour of my adrenals. The only thing I can't change is the bl........y stress that I have in my life. All the very best to you and keep us all posted. Ann

  • So I'm interested now in the general concensus opinion, is it felt T4 alone increases the risk of lung cancer. This is terrifying. So you're damned if you do (take Levo) and damned if you dont!

  • Until they re licence the old meds (natural dessicated gland) again, we are pretty much up the nile with a lot of crocodiles around. However, if you want a really good ironic laugh- go in to youtube and put in 'our holy miracle of the TSH test. Very funny and sad, then go look at the follow up regarding the medication not working. That is even funnier.

  • hello well thank you for making me laugh so much , have not laughed like that in a long time , the you tube clip is just spot on and is exactly what my doctor is like with me , so funny yet so sad we are all going through this i too have said i want to die, so i laughed so much at the doctors answer and of course the "kerching" thank you

  • You are very welcome and keep smiling. I wonder if the girls with hypo could all get one of those snazzy outfits, maybe from Ann Summers and on script! I think we all feel we have been cast adrift on these forum life rafts and thank god for them. I am still feeling low energy and a bit breathless; all so unfair, but who said life had to be fair. We will all stick together and keep each other buoyant in good humour. Whenever you feel fed up, go watch Dr. Twit on you tube.

    Ann x

  • Hi sidneymark. Don't take any notice of the study linking T4 therapy to lung cancer - Mary Shomon has taken it apart and it's not a very sound piece of research; thyroid.about.com/b/2013/08...

    Hope this makes you feel better :)

  • I haven't taken any medication so far & have quite low blood pressure but the other aspects of your story sound a lot like mine. Is ironic I've studied stress management at college. You might not be able to change the source of your stress if it's through work, family, relationships but you can change how you deal with that stress. Medications often treat symptoms but the problem will never go away without treating the underlying cause.

    I find this website really useful, I read a few articles every day they post on their facebook page

    mindbodygreen.com/tag/stress

    How long have you been taking armour & adrenal support? Feeling any benefits?

  • Just make sure you are not suffering adrenal fatigue. If you are, and there is a test, get it sorted out before thinking of taking any thyroid med. The adrenal support is essential and helps and the nutri thyroid is brilliant. I don't think I needed it and now I have all sorts of problems. My neck has a swollen feeling in the glands nearly all of the time; absolutely horrid. I have been taking Armour for about two weeks and find the effects a little overwhelming, but think I could do with tweaking the amount. My friend P has been away for a little while and I am waiting for a letter with advice. I would be delighted to know if anybody else has had the horrid neck thing. Thanks for the information regarding stress; I will go take a look. I am going through a divorce, difficult new relationship and travelling between two homes because of dogs!!!!!!!!!!!

  • You're not imagining it- I had a sore [back,not front] neck gland area for over a month which finally eased. I even met a guy on holiday who told me about his neck pain after a 7/8 sectioned thyroid 30 years ago [unprompted] -until they bumped his replacement T4 up.

    Mine was bad enough to make driving difficult -turning my head hard round was quite sore to do. maybe the Spatone iron helped on this.

    I'm not sure as a gout attack triggered my immune system and Colchine may have contributed to easing my neck also. It's a potent drug - and neck eased at the same time of use

    (I've since wondered if it could help in autoimmune thyroid probs- gout is the same class)

  • Very insightful and helpful view of our worry prone human condition.Thanks for the link. I'll try to remember the tips:)

  • Hey who knows - my vitamin box looks like the store room for Holland & Barrett. I really ought to stop experimenting with the vits. Trouble is getting blood tests done. Oh well, we will press on until The Church of Modern Medicine decides to recognise that our body makes four T's and not one. Everything they give you is the equivalent of throwing a monkey wrench into a very sophisticated computer. AND it is not in the pharmaceutical's interest (or their shareholders) to make their customers better. A bitter irony.

    Ann x

  • All I can add to much of the common sense written already is that I wish I'd started my T4 therapy 2 years before I was diagnosed. It's taken 18 months to regain my health and learn how to manage my condition and stabilise my symptoms. Just the 3 stone weight gain to lose now... :)

  • Elpig: your situation and mine are very similar. Are you still online, I noticed your post but it's been a while I can see.

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