M.E/CFS: I was wondering how many people... - Thyroid UK

Thyroid UK
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I was wondering how many people diagnosed with M.E/CFS/Fibro ended up not having those symptoms once they began treatment on thyroid replacement.

12 Replies

Hi, I found my recovery started with a combination of thyroid and adrenal support, along with taking nutritional supplements to support mitochondrial function e.g. magnesium, B-vits, ribose and al-car (Dr. Sarah Myhill's treatment regime). For further info, her website it full of really helpful advice: drmyhill.co.uk. Dealing with any toxicity and emotional issues have also played their part in helping me too. Hope this helps. :-)


Unfortunately, they probably wouldn't have been given thyroid hormones until/if their TSH reached the magic number.

I was diagnosed with fibro 14 years ago - Hashimotos in 2005 - now doing well but it is a bumpy ride....

I was told on another site that as I had recovered from Fibro that I did not have it in the first place.... :-)

I am a true believer of optimal treatment of the gut to keep auto-immune issues at bay - and anything else that improves our quality of life. Always learning - so important to take control and keep an open mind....

I do feel that many people with Fibro and other chronic conditions do take the prescribed medication which further complicates things with the toxicity - in some case the list is quite long.

The sooner Functional Medicine is the norm - the healthier we will all be.....

in reply to Marz

Ha! Marz - I think I probably know which site you're referring to! I've seen that happen a few times on a fibro site I visit (I don't visit so often nowadays). :-)

in reply to CarolineC57


in reply to Marz

mmm! (-:)

Yes. Once the dose was raised sufficiently.

Also since way back (18 - 15 years ago) nutritional status has improved. That helps too. Also getting better sleep (using Zopiclone). Plus physical rehabilitation. Start slow and increase gradually or crash happens and then setback. (I take 5 mg dexedrine twice per day but good luck getting that...and 1/3 tablet of Percocet when needed).

Lots of factors but getting enough thyroid hormone gives the energy to do what needs to be done.

I was reading an essay by a pain management specialist. This person says that the optimum way to manage chronic pain is with a low dose narcotic and a low dose amphetamine but only for those patients who can be trusted to not abuse the meds. Back in the early part of the 20th century they actually sold tiny lozenges containing morphine and cocaine. Those were the days, my friend. Now they tell you to take ibuprofen or even worse, paracetamol. UK study report last week: acetaminophen is useless for arthritic pain. Well, Booyah! Sounds like someone finally listened to the patients?

I do not believe in the salvation of the soul through pain. But I think these days the management of chronic problems is like something from the Middle Ages. fehhh. People need intelligent pain management in order to get better and get on with decent quality of life. Chronic stuff is chronic. There's no magic trick to having it all just disappear one day like a miracle.

Unfortunately doctors don't get much in the way of training for chronic pain management.

My fibro (which I had had badly for 7 years beforehand) went away completely when I was pregnant (guessing because your body produces extra thyroid hormone then) and then returned after I stopped breastfeeding. Soon after that I was diagnosed with hypothyridism and my fibro is under control still when I am optimally medicated but returns when my FT3 sinks too low (like now).

It also comes back with a vengeance when I eat too much sugar.

Thank you to everyone for replying, I don't have a proper diagnosis of anything and I've been very careful not to mention CFS or fibro to any dr. I was very worried about seeing the rheumy in case he said it was fibro or CFS purely because it seems once that diagnosis is given the help or tests stop there and everything is dismissed as part of that. My problems started after having my son and have gradually progressed. I'm going to order the private thyroid tests next month but I know in dec and previously my tsh is at a great range. Hashi seems the most likely for me due to my symptoms but I'm not hopeful that bloods will show that as my bloods are always great. On drs tests so far I'm literally perfect yet I feel crappy 95% of the time whether it's pain/tiredness/brain fog/dodgy vision/muscle twitches/facial pain/ agonising throat pain/heart palps/ very low blood pressure/dizziness/jitters. Some days are 1 or 2 of symptoms, next day could be completely different with other symptoms.

As far as I know I never suffered with a bad viral or bacterial infection prior to this. don't have any allergies (used to be very allergic to ibroprufen, hives etc but that stopped on its own, now I take them all the time reaction free) no food intolerances, don't suffer with depression despite 5yrs of not feeling well.

Thanks again for all your input, thought it would be interesting to see who was told fibro/CFS and who's disappeared with treatment.

Hi Charlie! I was diagnosed with ME/CFS as long ago as 1999 (and it took me several years to get a diagnosis - the docs kept telling me there was nothing wrong with me), and then diagnosed with fibro around 8 years ago when I started getting lots of joint pain along with the fatigue (the joint pain has since turned out to be osteoarthritis of knees and ankles and rotator cuff problems in my shoulders).

It was only when I started getting other strange symptoms - eg. hair loss, etc - that I did some more googling and came across the TUK site, finding out that ALL my symptoms fitted hypothyroidism perfectly. But my TSH is "normal" (low, but within range) so as far as the NHS is concerned I still have ME/CFS and fibro, but no thyroid problem.

I consulted Dr Peatfield (google his book "Your Thyroid" if you haven't heard of him) privately 3 months ago, and have been on adrenal support since then. I've just started on NDT a week ago. So, it's very early days for me yet ... but I hope to be one of those people who can recover at least some health with this treatment. However, I've been ill and untreated for a very long time so I don't think I'll ever fully regain my health (and I do have the pain from the arthritis to contend with too).

Hi Caroline,

I was just wondering how your feeling now youve been on NDT for a month. I hope your feeling better.

When the Dr at the surgery lowered my thyroxine medicine by .25 mcg in 2013 and now it is 2 years later, I'm back up to 150 mcg and my cholesterol is back to normal, it went up and they wanted me to take statins, until I refused and then brought my thyroxine dose back up at my insistence, now my cholesterol level is almost optimal.

But I ended up in those 2 years with TMJ and that caused two molars in my lower jaw to need almost £4,000.00 in dental work. I'm still struggling with getting these molars worked on and I'll need a tooth implant in one of them which can't be saved.

After my increase of thyroxine for about 6 weeks, I suddenly felt a "lift" of the jaw tightening and since I've been TMJ free. All because some Dr. wanted to change my dosage because of the TSH. I wish I could sue. £4,000 pounds expense, all the pain I've gone through, all because of some crazy idea she had that I even argued about at the time.

Never again! Never ever again.

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