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

Annealise profile image
16 Replies

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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Annealise profile image
Annealise
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16 Replies
topaz1 profile image
topaz1

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.

Annealise profile image
Annealise in reply totopaz1

Were you not given any meds for Hashi's?

topaz1 profile image
topaz1 in reply toAnnealise

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!

Ansteynomad profile image
Ansteynomad

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.

carer999 profile image
carer999 in reply toAnsteynomad

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

Ansteynomad profile image
Ansteynomad in reply tocarer999

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.

klr31 profile image
klr31

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

klr31 profile image
klr31

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

Annealise profile image
Annealise in reply toklr31

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.

klr31 profile image
klr31 in reply toAnnealise

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.

Annealise profile image
Annealise in reply toklr31

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?

klr31 profile image
klr31 in reply toAnnealise

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.

klr31 profile image
klr31 in reply toklr31

You might have to nag a little!

Annealise profile image
Annealise in reply toklr31

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.

klr31 profile image
klr31 in reply toAnnealise

You might react differently now.

klr31 profile image
klr31 in reply toAnnealise

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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