seeking advice

Hi everyone I am new to this site, searching for the solution to my problem! I was diagnosed with underactive thyroid about 15 years ago, levothyrixine didn't help me feel any better I eventually went private and got on Armour thyroid, was on that for many years but intermittently trying levo again at my doctors request,in the end I had to buy the armour from abroad myself as the doctor didn't agree with it at all. Last year I had sudden onset pain all over my body, excruciating, was sent by my doctor for tests etc which took all year, finally started to feel a bit better by August (which looking back I put down to the natural stuff I was doing and the weather, I managed to feel warm by August) last year but then the pain kicked in big time this January, have been for more tests, which show inflammation. I am a naturopath and acupuncturist so have been using various natural ways to reduce inflammation and ease pain but the main problem is alwasy there, freezing cold most of the time, pain all over my body with muscle spasms, fuzzy head, lack of sleep!! Last week I came across research papers for doctor Lowe and fibromyalgia linked to hypothyroid. I thought this is it, this is what I have so I took the research papers to my doctor and asked for t3 and t4 tests, convinced that the t3 would be low but when it came back the t3 was at optimal level and the t4 was below range. I know he will want to put me back on levo but in the past it just hasn't helped!

For a long time while taking the armour I was ok it was never the solution but I felt a bit more normal, it sorted the constipation and some of the energy problems but I never had the pain. When I was first diagnosed my muscles were heavy rather than painful, but I also got more involved with exercise which I think kept my metabolic rate higher, over the years I have been treating myself with food intolerance problems, feeling so tired I could fall asleep anywhere which I also put down to gut problems but I'm now thinking that the armour wasn't really the solution????? I'm really not sure what to do, have been up all night again last night in pain all over, can't live like this! Any advice would be appreciated! Thanks

26 Replies

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  • Welcome ! Have you had all the basic tests done ? Ferritin - Folate - Iron - B12 - VitD ? You need these results to be optimal in their various ranges to feel well and be pain free. We talk a great deal about VitD and B12 on this forum as it seems so many Hypo's are VERY low. Myself included.

    Do you have Hashimotos ? That too can cause pain/fatgue if your anti-bodies are high. Anti-TPO and Anti-Tg are the two tests you will need

    Please keep asking questions .... :-)

  • Thanks for reply, have had all tests everything ok, am taking Vit D supplement anyway and have been for long time! No Hashimotos! Going to see my doc today to get him to put me on t3, well I'm hoping I can talk him into it if I pet him monitor my progress, if I get no joy from him I will ask to be referred to endocrinologist!

  • Sorry about all the questions - but there isn't much information on your profile :-)

    Wondering what the actual results are for B12 etc. - does OK mean optimal ? How much D are you taking ? - dose needs to be based on your result.

    Choose your Endo carefully - few are inclined to prescribe T3....

  • I can't remember the result for B12 but it is fine as is Vitamin D and all other vitamins and minerals, I have a very clean diet, only eat natural foods with supplements an superfoods :)

    Not going to bother with an endo at all unless I know he will prescibe t3 otherwise pointless for me!

    I have taken Levothyroxine when first diagnosed 15 years ago, but quickly realised it wasn't helping so found a private doctor, cost me thousands, he prescribed Armour, I found out where he bought it from and for the last 8 years have been buying it direct, I have increased the dosage when I felt worse but then I would get palpitations, every now and then my local doctor would send me for a blood test which would show low t4 so she would put me back on Levothyroxine again but each time I tried it just made me worse.

    I started having really bad pain all over my body since a year last January, I used lots of supplements and clean eating, no wheat, dairy, sugar, yeast at all and by August I was starting to feel a bit better but looking back it was more to do with my body being warmed up by then rather than the supplements alone.

    I knew the pains were fibromyalgia but didn't relate it to my thyroid at all until this year while researching I came across Do Lowe research on fubromyalgia and t3 treatment. I feel sure that this is the answer for me but how do I get t3????????

  • I was diagnosed with FM over 15 years ago. Hashimotos was diagnosed here in Crete in 2005 when I was 59. Am now fine after starting with T4 - then T4/T3 - and now T3 only. I also feel that my weekly injections of B12 have helped so much along with 10,000IU's of D....and a tray full of other supplements !

    We are able to buy B12 injections OTC along with T3 for just over a euro :-)

    Am glad you B12 is fine - which I am presuming is at the top of the range - around 900. It has been well reported that to prevent cognitive decline levels need to be around 1000. Have you seen the Vitamin D Chart that shows you where your levels need to be in order to prevent many conditions ? Really interesting.... Hubby and I have been living here since 2004 and yes we both tested Insufficient for VitD - we do not synthesise it so efficiently as we age....

    Have often read here - that when on Armour - the T4 can be low in blood tests. As Armour contains T3 as well - the feed back to the Pituitary is that there is sufficient hormone in the blood - so the TSH is reduced and so less T4 is produced.....

    Good luck with your T3 and the Endo. Did you contact Louise Warvill for a list of sympathetic Docs/Endos who may be able to help ? She is part of Thyroid UK and you can e-mail her....

  • There is no medical history in your Profile, which is helpful and we don't need to ask you repeat questions.

    Did your doctor do a Free T3 test, as that would say what was in your cells. T3 only gives the T3 circulating in the blood. Dr Lowe also spoke of thyroid hormone resistance in which some people's cells were resistant.

    web.archive.org/web/2010103...

    There are other topics at the top of the page.

    Regardless, T3 made a huge difference to me (first being added along with T4) now on T3 alone and well. It does so for many people. Some also source their own which shouldn't need to be so. This scientific paper is also by Dr Lowe. He used T3 alone for his fibromyalgia patients and NDT for his others. In no way would he ever prescribe levothyroxine.

    web.archive.org/web/2010073...

  • Hi Thanks for answer, but do you get t3 prescribed, just come back from my doctor and I know him personally but he wouldn't prescribe t3 because he thought it might give me cardiovascualr problems, he is going to speak to an endo friend of his tomorrow but I'm sure they will say no!! Where do I go now? I don't have money to pay private?

  • Yes, I get mine prescribed. I think they must study mythology at medical training nowadays just as we believed in Father Christmas. I still do as I get nice presents at Christmas :)

    T3 calmed my whole system down and I had awful palps and heart pain on levo.

    This is an extract:

    And ". . . caused strokes"? If anything, the use of T3 may help prevent strokes. I scanned MEDLINE for studies on "T3" and "strokes" published between 1966 and 1997. These key words were mentioned in 43 publications. Most publications reported the beneficial effects of T3 on cardiovascular function. The word "stroke" was most often used in regard to the "stroke work in cardiac contractility" (a physiological description)—not in the sense of cerebrovascular accidents (strokes). I'll mention just a few representative publications. These suggest that it is urgent for the physician you mention—for his patients' welfare—to quickly update his knowledge.

    In one study, a researcher found that T3 levels were significantly lower in 42 of 65 stroke patients. [Liang, D.S.: Stroke and thyroid hormones. Chinese Journal of Neurology & Psychiatry, 24(6):352-354, 384, Dec., 1991] It is certainly possible that the low levels of T3 were partly responsible for the strokes.

    web.archive.org/web/2010103...

  • Thanks I will definitely do more research into this tonight so I can take it to my doctor to put his mind at ease! He is a bit of a stickler and very thorough, he offered me a referral to thyroid specialist but that would take too long, I really need help asap! I'm worried that all the inflammation in my system is causing damage that is irreversible.

  • This is a link re research:

    healthunlocked.com/thyroidu...

    If you email louise.warvill@thyroiduk.org and ask for a copy of the Pulse online article. It is answers by Dr Toft who was President of the British Thyroid Association and read question 6.

  • Thank you, that's very kind of you, I will do so straight away!

  • You may wish to look at the book an Amazon

    amazon.co.uk/Thyroid-Heart-...

    You can browse the contents and see that T3 or Liothyronine is the star of the show !

    The book is about the research that took place in Italy when Cardiologists and Endocrinologists came together for research purposes. Possibly a first. Hopefully it will help you reassure your GP friend - or foe ! GP's rarely have time to keep up to speed ! The talk of thyroid hormones and hearts is a little outdated. As you know the heart is a muscle and like all muscles needs adequate levels of T3.

    You may also like to take a look at Low T3 syndrome and hearts ......

    I know you say all your tests were fine - but having been on this forum for over three years - one thing I have learnt is that most people here like to see the results printed into the posts with ranges. It helps people to comment in a more informed and constructive way....

    :-)

  • Hi again, I just looked at the book and it's a bit expensive for me I'm afraid, I don't have £126 to spend on a book.

    I appreciate what you are saying about tests but I don't have the results at the moment, I have lost them, I really am only looking for advice on how I can get t3 supplementation? Thanks for all advice you have given :)

  • ...not many of us do - that is why I suggested you read the Contents bit on-line which gives in depth descriptions of each chapter. That in itself is informative ! Some of their research appears on PubMed.

    You can buy T3 on-line as your Endo may not be inclined to prescribe it for you if - as you say it is good in the range.

    Will look out for your future posts... :-)

  • Yes thanks I have copied and pasted some of the content info, more information to take to my doctor! I have also looked on Pubmed and copied some of the research papers, thanks very much for that

    Where can you buy online? Is it Liothyronine you are talking about or Cytomel? I have found Cytomel in the place I buy my Armour thyroid but it is almost £200, I really can't afford it at the moment but if the worse comes to the worse and he won't prescribe then I suppose I will have to buy but would prefer to buy Liothyronine if possible, if you know where I can get it, that would be great! Thanks again :)

  • Sorry just realised Cytomel is the trade name of Liothyronine :)

  • Been looking online to buy T3, if doctor doesn't prescribe when I speak to him next which is on Thursday then I'm going to buy it myself, the pain I have now is tremendous, I need to sort it out asap. When my results came back last week for T4 and T3 which was 5.7 T3 and 10.1 T4, I went back on the Levothyroxine to see if it would help, in just 4 days I feel a lot worse!! Which indicates to me it's definitely the lack of T3, as my normal medication is Armour which provides a small amount of T3 as well as T4! Thanks for listening! x

  • Also forgot to ask, do you know the best company to buy from?

  • Are you sure it's T3 you need as your result looks good - even without you giving us the range. Do you have the range ?

    I live in Crete - where I am able to buy T3 OTC. I did initially have it prescribed by my GP to err on the side of caution as I was a poor converter of T4 ( did a spread sheet of results to show GP ) If you type - Buying T3 on-line - into the SEARCH BOX at the top of the page on the Green Bar - lots of posts should come up. ( Now added link - see below )

    Still think you should obtain your blood test results with ranges from your GP and post them or send me a PM. Nothing will work well if your B12 - Ferritin - Folate - Iron - VitD are just in range. They need to be OPTIMAL for efficient working of thyroid hormones.

    Take a look at my edited profile by clicking onto my name - and you will see that my journey to wellness has been complex :-( Still learning lots - but following the advice given here has been so helpful. It's a huge learning curve and there are lots of very knowledgeable people around......

    healthunlocked.com/search/b...\

    As you can see if people do make suggestions about buying on-line it has to be by PM's to fit in with guidelines.

  • Yes I am sure it is T3, yes my results do look fine, my T3 is 5.7 and the range is 4.1 to 6.8 I think, but the fact remains that my problems are linked to my thyroid, I have tried T4 on it's own which was worse and I have tried Armour which was slightly better but nothing really solved the problem so I think that having read lots of research papers from USA, Canada and UK that T3 is the missing piece in my particular jigsaw. :)

  • Hi, I have read a piece on stop the thyroid madness that says if you are not high enough in iron and vitamins and if your adrenals are not functioning properly it can make you feel bad even when you're on NDT. They have a page on Facebook and regularly post new studies. It may be worth a look. Hope you feel better soon.

  • Thanks for answer but I have all the other stuff in check, I think I just need t3

  • acunatang, it doesn't matter how often you say your levels of vitamins and minerals are fine, many of us won't believe you until you come clean and post the figures with the reference ranges. ;)

    We've heard "normal" so often when levels were rock bottom in the range, that we have to see it to believe it.

    Another thing... GPs in the UK will often prescribe vitamin D supplements at a dose of 400 iU (or 800 iU if they are feeling generous), even though many of us need 5000iU or more to raise our levels. Sometimes the prescription is for the wrong type of vitamin D which really doesn't help.

    It would be nice if you could put us all out of our misery and let us know your levels. :)

  • Sorry I don't have the results now, I have lost them, don't worry of you feel you can't help me because of this that is fine, sorry to have troubled you! :)

  • I think what people are saying is that previous results would make it easier to offer suggestions. If it's more than 6 months ago I would ask your doctor to check them again and then repost. So many of us have been told our results are normal and then found that yes they are in range but in danger of slipping below and what we are looking for is optimum results which need to be at least halfway and generally near 75% for us to feel well. It's not that we can't help you but could offer more help if we had the results and ranges in front of us. The ranges are important as they differ from lab to lab and are usually the numbers in brackets following your result.

  • Thanks for your comment but as I said I don't have the results, I will get more of them done again when I can get T3 treatment, my body is malfunctioning and no amount of supplementation is going to correct that until I treat the root cause and that is the thyroid! My body is shutting down, I have tried supplementation but the problem remains as you need to address the root cause of the problem before you can correct other deficiencies! I am never told my results are normal I always ask for the readout or a copy to take away and then I analyse it myself, my health is fine on all other counts apart from the mixed messages from the underactive thyroid results. The longer the inflammation and muscle cramps go on the more damage could become permanent so for now I just need T3 supplementation.

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