Diagnosing Graves disease

Hi all,

I will try and make this short.

I have been having thyroid symptoms for about the past 10 years but still got no diagnosis... My symptoms are: fatigue (worse the day after exercise), palpitations, lethargy, weak urine, frequent urination, loose stools, IBS, no libido, light periods and lack of cervical fluid, and nervousness. I have seen 4 different endocrinologists (including privately) and have trialled levothyroxine, natural thyroid hormones and also T3 alone, but none of them worked and just made me feel as though I was going hyper. Anyway, it recently came up in my blood results that I had anti-nuclear antibodies (or ANA). I then saw a rheumatologist who did more tests which showed up anti double-strand DNA antibodies! I thought I was finally getting some answers. She thought i might have lupus and trialled me on hydroxychloroquine, but these tablets didn't do anything at all for me so then she took me off them, said i haven't got lupus and discharged me, so now I'm back to square one! Over the last 10 years I have been going up and down to the doctor's and have seen 2 urologists, 2 gynaecologists, 4 endocrinologists and a cardiologist. I am currently waiting to see a lung specialist next. Anyway, I recently found out that my mother has got Graves disease, although all this time I think she thought she was underactive! It seems as though I'm going along the same path, but my thyroid results always seem to be spot on perfect!! These are my latest results:

TSH: 1.27 (0.27- 4.20)

T4 total: 89.4 (64.5- 142.0)

Free T4: 15.66 (12- 22)

Free T3: 4.32 (3.1- 6.8)

Anti thyroidperoxidase: 93 (should be lower than 34).

The endocrinologist wouldn't treat me for hyperthyroidism based on these results, so does this mean I've got to wait until I get a lot worse before I am treated?? I just don't get why I can be so symptomatic when my results appear virtually perfect! I can't even exercise any more without feeling terrible the next day and I haven't been able to have a relationship due to no libido and sexual dysfunction :-( I just wondered what other people's experiences are with Graves (assuming that's what I've got). I'm wondering whether to try a very small dose of carbimazole to see if it does anything? Also, the endocrinologist mentioned TSH receptor antibodies test. Would this confirm Graves disease alongside the thyroidperoxidase antibodies? I forgot to ask her. I someone can help.

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16 Replies

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  • Sheepcoat,

    Your TSH, FT4 and FT3 are euthyroid ie normal and neither hyperthyroid nor hypothyroid. Thyroid peroxidase antibodies (TPOab) are positive for autoimmune thyroid disease (Hashimoto's). Thyroid peroxidase antibodies can be elevated in Graves disease but you would need Thyroid Stimulating Immunoglobulin (TSI) or Thyroid Receptor Antibodies (TRab) tested to determine whether or not you have Graves disease.

    I felt very ill with euthyroid Hashimoto's and at first most of my symptoms were hyper but they eventually seemed to swing between hyper and hypo. There is no treatment for autoimmune diseases like Hashimoto's. Treatment is for the low thyroid it eventually causes. If you take Levothyroxine now the likelihood is you will feel hyper. If you take Carbimazole you will probably feel hypo.

    Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

  • Delicious21,

    How would RAI help?

  • Hi Delicious,

    Have you tried carbimazole? What were your thyroid results?

  • Hi Clutter,

    Thanks for that. I am paying privately for the receptor antibodies test, although I still don't think this will enable to get treatment due to my TFTs being euthyroid, as you say. My mother has got Graves disease and so I'm suspecting I've got this rather than Hashimoto's.

  • Sheepcoat,

    Even if TRab are positive your thyroid results are euthyroid so there is no treatment to be given.

    My symptoms were mostly hyper and because my mother and sister had Graves I, and my GP, assumed I had Graves but it was, in fact, Hashimoto's. If I had known that gluten-free diet could help reduce symptoms and flares I would certainly have tried it.

    thyroiduk.org.uk/tuk/about_...

    thyroiduk.org.uk/tuk/about_...

  • Aren't there lots of people on here who take thyroid treatment even when their results are euthyroid though? Surely having symptoms must mean you're over or underactive and it needs treating to make you feel better? Even if results are in the 'normal' range. I've had symptoms for about 10 years now and I certainly don't want to wait another 10! I forgot to say I also have a nodular goiter as well as peroxidase antibodies. I guess the receptor test will confirm anyway. I tried going gluten free for 3 months and I didn't feel any different apart from my IBS had improved. I still couldn't tolerate exercise and felt awful the day after, and my periods and libido still exactly the same and virtually non existent.

  • Sheepcoat,

    Your results are unequivocally euthyroid. None of them are borderline high or low. Most people taking thyroid replacement have TSH >3.0 with low FT4 and FT3. Nodules don't usually cause symptoms unless you have a 'hot' hormone secreting nodule and that isn't likely because your FT3 isn't high.

    It isn't clear from your opening post that symptoms are either hyper or hypo thyroid. Palpitations can be due to either but post exercise fatigue is often due to low FT3.

    So what treatment do you think is going to help? Carbimazole (for hyperthyroidism) will block thyroid function and reduce T4 and T3 but Levothyroxine (for hypothyroidism) will increase T4 and T3 levels.

  • This is what I just don't understand. My results always appear very good without me even being borderline, yet I'm having all of these symptoms. I did try thyroxine which made me feel hyper, even when taking a minute dose. I also tried T3 on its own which just made me feel anxious and tight-chested, and the same happened with natur-throid. Do you think it's best I wait to see if I've got the receptor antibodies? If I have, then I think that confirms Graves disease along with the peroxidase antibodies? Then I might try a very low dose of carbimazole. If this doesn't work, then I'll just have to live with these symptoms by the look of it.

  • Sheepcoat,

    You felt overmedicated when taking thyroxine, T3 and NDT because you are euthyroid not hypothyroid.

    Even if Graves disease is confirmed you are currently euthyroid and won't benefit from Carbimazole until you are hyperthyroid ie TSH <0.1 with FT4 and/or FT3 over range.

  • I think I am just hoping something might cure these symptoms once and for all. I've read a lot of posts on here and some people treat themselves even with normal TFT blood results. Some people say that whatever your results are, (even if euthyroid) doesn't necessarily mean they are at the right end of the range for YOU. What do you think about that?

  • Sheepcoat,

    I think borderline high or low results within euthyroid range can make a person feel hyperthyroid or hypothyroid but your results aren't borderline either way.

    You've already tried thyroid replacement and found it doesn't work. Taking anti-thyroid drugs will lower thyroid levels and probably make you hypothyroid.

    Euthyroid Hashimoto's can make you feel awful but there is no treatment or cure for autoimmune disease and the best that can be done is to see whether g-f will improve symptoms, reduce flares and antibodies. 3 months isn't likely to be nearly long enough. You'd have to try for a year at least to see whether antibodies drop and it has to be admitted that g-f doesn't cause improvement in everyone.

  • Oh I see what you mean about being borderline now. OK I will see whether I've got the receptor antibodies so at least I'll know if I've got Graves or not. If I have, I might aswell try a very low dose of carbimazole, even if just for a week...you just never know. If no luck, then I'll go gluten free again.

  • Sheepcoat,

    Have you had ferritin, vitamin D, B12 and folate tested? Deficient/low levels can present symptoms similar to hypothyroid symptoms.

  • Yes all tested ages ago and been on a good multivitamin for over 2 years. All my results are now fantastic. The vitamins cleared up a few symptoms like restless leg syndrome and feeling like I was gonna pass out, but that was it. I also had low calcium which is now normal (I supplement calcium aswell).

  • theres no way those results are of Graves disease

    they are simply indicative of central or tertiary hypothyroid

    cannot fathom why NDT did nit help

    has anyone bothered to test

    ferritin

    folate

    b12

    vit d3

    Coeliac disease or gluten sensitivity

  • Hi reallyfedup,

    I may steal your username!

    Yes I really thought NDT would help but it was just making me feel anxious with nervous energy and not much else. I've been taking multivitamins for about 2 years and all of my vitamins and iron are now at excellent levels. I was tested for coeliac but it was clear. I went gluten free for 3 months and didn't feel any different really. I think I might just have to accept there's some autoimmune activity going on and my hormones have gone haywire, and that I'm just gonna have to live with it! I've literally exhausted all options for answers now I think. I've got high prolactin, anti double strand DNA antibodies, thyroid peroxidase antibodies and anti-nuclear antibodies, but no one has got a clue why! I've seen 4 endocrinologists, a rheumatologist, 2 urologists, 2 gynaecologists and a cardiologist, but no answers. My body is attacking itself and it looks as though I've just got to let it get on with it! What's your story?

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