New, support and advice please!

Hi everyone, I'm 36 years old. I was given a diagnosis of fibromyalgia at age 22. Over the last few years my TFT results have been sub clinical. A few weeks after having shingles (for the 2nd time this year) I asked for a private consult with endocrinologist. Symptoms are fatigue, IBS, mental fog and muscle cramps/pains. The endocrinologist didn't think my symptoms were down to one condition but did blood tests for lupus, crohns, rh arthritis and repeat TFTs.

Current blood results: TSH 8.80 (0.27-4.2), Free thyroxine 13.4 (12-22), anti-thyroid pereoxidase 553 (<34). All other anti intibiodies normal , so no lupus, rh arthritis or crohns.

Endo has emailed me to let me know she believes my symptoms were caused by a virus and all normal. She did say she would start a small dose of levothroxine if I wanted.

I'm waiting on her letter to take it to my Gp! What do you all think? We're should I go from here?

7 Replies

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  • High antibodies means you have hashimoto and your tsh is very high.

    Yeah you could have one off weird result because of virus but your antibodies rules that out. Tpoab is connected nothing else but hashimoto as far as I am concerned.

    Going gluten free could help lowering antibodies.

    You will end up on levo in the future anyways so I'd fight for getting it now. I hope they are not planning on keeping you on low dose and then call you hypochondriac.

  • Welcom to the forum, Jen1980.

    Virus can elevate TSH but high thyroid peroxidase antibodies means you have autoimmune thyroid disease (Hashimoto's) which progressively destroys the thyroid gland. TSH 8.80 indicates your thyroid is being flogged to produce hormone and your FT4 is low in range. I would accept the offer of Levothyroxine. When you are optimally medicated TSH will be 1.0 or lower with FT4 mid range or higher.

    There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

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

    For maximum absorption Levothyroxine should be taken with water 1 hour before or 2 hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements and oestrogen.

    It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose.

    You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

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

    _____________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical advice from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I have had a good read at the related articles. Thank you. I will start gluten free diet and get started on levothyroxine as soon as Gp will prescribe. Thanks for helping me get my head straight.

  • Look into chronic infections, too, which have been linked to fibromyalgia, like c. pneumoniae, mycoplasma, Epstein Barr, HHV6, cytomegalovirus, and possibly Lyme and coinfections like Bartonella, etc.

    Going gluten free is an excellent idea. Have a stool test to see if you have any parasites, candida, etc. in your gut. And check for nutritional deficiencies like B12, riboflavin, vitamins C, D, and iron. Try taking a good probiotic, like Xymogen Probioma or Pharmax. Look into digestive enzymes to help you digest better.

    Eat healthy fats, and if you find infections, get them treated and also try taking a lipid replacement product called NT Factor.

    Good luck!

  • Are you taking pain meds for the Fibro ? If so then check they are not contra-indicated should you start taking Levo.

  • Pain meds don't work. Stop taking anything other that paracetamol along time ago! Great advice. I'm not sure Gp will test for all those infections! Do you know were you can get a private stool test? Thanks for advice.

  • There is information on the main website of Thyroid UK about Private Testing. I would head for Genova Diagnostics for stool testing. I am in Crete so not up to speed :-)

    thyroiduk.org

    Also Regenerus Labs.

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