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Anyone suffered from undiagnosedHypothyroidism symptoms after being diagnosed with M.E

I was diagnosed with M.E 30 years ago after contracting the Epstein Barr virus.

I suddenly encountered all the syptoms of Hypothyroidism and still suffering today, despite load sof tests being inconclusive.

Just wondered if anyone else has experienced this?

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Exactly the same for me. Was diagnosed with M.E. in 1995 and in 2014 my GP (he was slightly alternative!) decided to do thyroid tests - Hashi's. To be honest it didnt make any difference to energy. I feel just the same as I did when I thought I only suffered from M.E.

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Were you not given any meds for Hashi's?

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My then GP put me on Armour, which didnt seem to make much difference. Then the practice closed and I had to start self-medicating. I learned a while back that going gluten free helps to bring down antibodies but no advice from any GP. My present GP doesnt know anything at all about antibodies!

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I was diagnosed with CFS in 2010 and just discharged by the consultant with no support etc. I actually had hypothyroidism, low vitamin B12 and folate, ferritin deficiency and vitamin D deficiency. I've had to do all the work myself, but after years of increasing disability, I am now completely well, working full time and leading an active social life.

I too had never been completely 'right' since I had glandular fever in my teens.

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Ansteynomad What did you did do to get such a recovery?

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I read and researched and then fixed everything a stage at a time. Getting a good level of vitamin D made a huge difference, as did supporting my adrenals. I finally got some thyroxine in 2013 and did very well on it, so when my GP started reducing my dose, because my TSH was suppressed even though everything else was in range, I started self treating.

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I became ill with M.E in 1996 and had a diagnosis of Hashimoto's in 2001. I think that the hypothyroidism played a part in my M.E although it hasn't been the whole story. I only began to improve a little in 2006 after I was given a more adequate dose of thyroxine. I am better than I was but still not able to do what a normal healthy person can do. It's definitely worth checking out your thyroid and making sure that your levels are optimal. Doctors don't know everything so you have to find your results and be your own advocate. It might not be the whole reason for your illness but it might play a part.

Karen

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I think addressing deficiencies like B12, D, Folate, Ferritin, as well as your T4 and T3 levels are crucial.

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Oh yes definitely - I have never seemed to absorb iron very well no matter how much I take and when I stop, the levels go back down again. It was only a London Hospital that helped me years ago - GP's dont want to know when you are no longer attending a hospital.

I'm on the point of self medicating with Thyroid meds once I can raise the Vits and iron again.

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Why don't you ask your doctor for a trial of thyroxine? It's best to have your doctor on side as he/she can monitor your blood levels.

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Well I was all geared up to asking for it but have now heard its pretty impossible to get it even for just a trial unless your TSH is out of range - mine is on the borderline.

Did you get a trial?

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Your doctor might give you a trial if your results are borderline and you have symptoms. It's worth a try to push for it as you need to have regular blood tests to monitor how much you need to increase by over time. I got thyroxine easily because I had antibodies but then was left on 50mcg for five years which was far too long. I became unwell until I increased it and added T3. I am no longer on T3 but take 150mcg T4.

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You might have to nag a little!

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Gosh that was awful being left on that amount for a year!!! I did had a trial of Levo years ago from a private Dr but it didnt do a thing for me, so he did blood tests and said no point taking it and took me off i. (didnt offer to raise it). Maybe it was too low a doseage for me...

If it wasnt for regular blood monitoring I'd buy it myself.

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You might react differently now.

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Yes, I have M.E so thought I was unwell due to that until I paid privately to see an Endocrinologist who raised my T4 and put me on a small dose of T3. It saved my life!

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