Hi! Would also be interested if anyone with thy... - Thyroid UK
Hi! Would also be interested if anyone with thyroid problems has found a link with ME(cfs)? Got diagnosed with ME 7 years ago may be linked?
There is a school of thought that there can be a a connection for some people. Have a look at the articles by various authors on the main Thyroid UK website. Look in the pink menu on the left under 'Related Conditions'
thyroiduk.org.uk/tuk/index....
Hi red apple, thanks for the link will take interest reading this.
There is often an unquestionable link between thyroid health and CFS/ME which can be brought on by a number of triggers. You may find these articles interesting.
ccid.org/stealth/clinical/s...
hhv-6foundation.org/conditi...
tiredoflyme.com/index.html#...
I can send you loads more articles if you need them.
Jane x
Hi Jane, thanks so much for your reply and links concerning ME, will read with interest
My daughter was diagnosed with ME 22 years ago, and over the years I've come to the conclusion that if you present yourself to the doctor with a mix of the commonly understood fatigue problems you will be labelled under the umbrella term of ME/CFS, fibromyalgia, depression, etc. etc. whereas in fact there are quite a few reasons for these symptoms which can eventually lead to a malfunctioning thyroid and other endocrine glands. That's why I thought you might find these links interesting. Doctors need to ask WHAT has caused the ME/CFS not just label you with it. Enjoy the reading. Jane x x
Thankyou so much Jane, I know what you mean will have a struggle getting my gp to understand that! Will persist though! Thanks
We had to take control of the situation ourselves, but good luck with the GP. Some will listen - ours wouldn't. Jane
Thanks jane, will keep updating how I get on. Amazing how similar ME and thyroid symptons are.
Couldn't agree more! It's just a way for the gps to write you off and do basically nothing! That's what happened to me 16 years ago.....
Hi sporty333, what did you do if you don't mind me asking? Thanks
Hi
Well i just followed the guidance the NHS offered me. I also eventually went my own way and spent thousands looking for answers t why i felt so ill! I eventually got well enough to work and lead a half normal life. Then,2 years ago i came crashing down again and so had to go looking for answers to why i felt so crap! More thousands were spent and then i found out thyroid and adrenal issues where there. There is a LOT more information around these days!! Blimey 15 years ago it was shockingly poor! No Internet or open minded doctors!
Hi! Thanks for your reply, sorry you've had such a hard and expensive time over the years, it's awful.
It's not the best thing that can happen to you! Lol
It makes me very angry. I just wonder how many very ill people have been written off or have died because their doctors couldn't be bothered to do their jobs properly. Fortunately we found T3 which has kept my daughter alive for the last 11 years, but it was only this Spring that we discovered why she has been so ill for so long. This we have had to do through our own effort and expense, but things are at last looking up. Jane x
Hi jane, I admire your perseverance in helping your daughter. It's very dissappointing and exhausting when doctors won't listen! May have to go down the private road but so expensive. All such a worry. Glad things are looking up now for you and your family, thanks for all your advice
The best advice I can give anyone is to tell them to NEVER give up. It has cost me all my savings and I've had to remortgage the house, but I figured if my daughter doesn't have her health she has nothing, and we've finally found someone who can really help her. Just remember you are the only person who knows how you feel and be persistent. Best regards, Jane x
Thanks Jane, your words have given me strength to keep fighting, I agree with you in knowing how I feel and will keep persisting onwards. Your daughter is very lucky to have such a caring and loving mum, thanks for your advice x
Jane its cost me thousands over the years! The cost of a nice new car. Let alone the money lost in wages, benefits paid to me cause i couldn't work, no tax paid. It coss us and the country BIG! Makes no sense the NHS aren't more open minded to answers to why we feel so ill!
I am going to look at these myself as i have me/cfs and believe i am suffering from hypothyroid, altho not confirmed by nhs but take supplements myself for adrenals and thyroid.Cant sleep.
Hi! Let me know how you get on if you find anything interesting and will keep updating too. I am trying to find a gp who will listen and do a thyroid antibody test and test my adrenal
youtube.com/watch?v=BvEizyp... it might be worth you looking at b12 and homocysteine the book is very interesting
imho they are almost always the same thing. ME/CFS is just a dustbin, cheap diagnosis. It requires no tests and there is no treatment. If you are certain that your "ME" isn't endocrine related then there is something else wrong with you - something that needs proper diagnosis and treatment. Again, imho, ME/CFS are "fake" illnesses, dreamt up by the medical profession to avoid the amount of testing, thought and treatment that is really needed to help sufferers. I don't say this lightly - I've been ill for 37 years. I finally saw the light a year ago and have taken control of my own diagnosis, testing and treatment.
Hi Rosetrees, thanks for your reply. My gp not very willing to do thyroid tests and keeps diagnosing me with depression! Not sure where to go from here! Trying new gp. Thanks
Have you had thyroid antibodies tested? My understanding was that as there is not a blood test for M.E then it is usually diagnosed when thyroid disease has been ruled out. Sending you my sympathy and hope that you can find the strength to get to the bottom of your health problems. 
Hi Suze, thanks so much for your kind words and advice. Asked my gp for the antibodies test and he said it was done but only found the tests TSH, FT4, FT3 and function test on my blood form! Changing gp again now. Thanks for advice much appreciated
You really must get your thyroid antibodies tested. What were your results for tsh, free t3/4??
Thanks I will, did ask current gp and he has obviously not done so am trying a new gp! My TSH was 0.61mu/L(0.27-4.2). My free T4 was 15.3pmo/L(12.0-22.0 and my free triiodothyronine was 4.5pmo/L(3.9-6.7), hope I wrote that right? Thx Suze
A colleague at work was having a buspirone test for ME - I didn't think there was one either, sorry don't know anything else, except I've just done an Active B12 test (told ME/CFS too) J x
Hi there, I have just googled buspirone and cannot find a test, only about a treatment with that name for anxiety. The reason that there has been do much debate on whether there M.E exists is partly because there is no specific test. A friend has M.E which is totally debilitating. It is so frustrating as she is hypothyroid too and has tried T3 and NDT, without success. 
think I replied to Suze not yourself, have you had a buspirone test? (not that I;m recommending it, just heard of it) J x
Can you show us a link to it? Google cannot find it. ??
No I couldn't find one either - but this is what he had, it tests your reaction to this anxiety drug and levels of cortisol and prolactin - well that's what I was told. I searched here and found my old reply and also it was mentioned on the depression HU site. I did research a bit at the time, but forgotten it I was wondering if anyone else had heard or been offered the test???? J x
found this
Hi, thanks for reply I received it ok. No not heard or had the buspirone test done. Will read more on it
From a different angle you might be interested in this article:
prohealth.com/library/showa...
And this symptom checker:
b12d.org/b12-signs-symptoms...
It is easy to mix up these 2 conditions, very similar symptoms, and they are often found together as well.
H x
Thanks hamster, will look on these links, appreciate all advice.
ME and hypothyroid symptoms are similar. The one thing that differentiates ME is the classic post exertional fatigue that you don't get with other fatigue causing illnesses.
However, in my experience, once I'd got the ME/CFS label, it was a way of the NHS offering nothing but pacing advice (which important to control the post exertional fatigue) and psychology.
Still I followed the advice, but still suffered a persistent annual decline to the point of being ridiculous. Even when I ended up being pushed around in a wheelchair, virtually bed ridden, unable to do any cognitive tasks; the NHS asserted there wasn't anything they could do. I got a TENS machine foe the muscle pain, psychology... I found that because of had blood tests before, the doctors said I'd had the tests.....
While there isn't a specific blood test for ME they are supposed to rule out other problems. So it begs the questions of they are doing this often enough, if you gradually go worse, even thoughtless already given up work.
I'm pretty sure with ME you risk the peripheral T3 problems and need T3 rather than just Levothyroxine. That only took me 5 years to sort out. Who knows if it is, native achieved a lot in getting T3 prescribed by the GP.
I've not found the thyroid to be all my problems. I also take low dose naltrexone on private prescription, which helped the muscle soundness as I called it. I've had an experimental antibiotics protocol that helped the deep ache in my legs, which was something I did earlier in the year for about six weeks. Again at my own expense.
My new gp is nice and understanding. She also prescribed meet or migraines and for the pain. At least I've had the chance to try different things.
I have of course been taking nutri adrenal extra, other supplements. Vitamin.D.
I have a life worth living, but I know I cannot work. I'm currently trying different shoe inserts, he'll foot pads to help the pain in the balls of feet.
I am on annual recall yo the opticians due to the visual problems I get.
All I can say to anybody is to keep investigating. try the known things that there has been the most talk about. Change doctors, go to private specialists. But yes there is a huge economic result of years of being ill. I've certainly found the need to push for thyroid help, then find what else I needed.
I had under active thyroid for17yrs, I have lupus 6yrs fibro 3yrs also hypo parathyroid 2yrs osteoarthritis 18months. Wheat allergy. Raynaulds sojbergs vitiligo. Depression for to many years.They are now testing adrenal probs. I have had my first app at me/cfs clinic 2 wks ago, he orderd blood tests, wants to see my again in 4 months, got my app on fri for April 4 th. Still got all the same symptom only getting worse and adding more all the time. Sorry for the rant nhs drags it's feet and it's all down to money.
I have been hypo for 7 years which was picked up when I was pregnant, on 100mg levo since then and managed life fine - even when my husband left me with a one week old baby :). Two years ago a complementary therapist picked up a gluten intolerance which caused nasty headaches, muscle pains and fatigue (I went to see her for a massage). When I eliminated the gluten all these issues disappeared, but come back with avengeance if I accidentally eat gluten. Over the last couple of years I really cleaned up my diet - it wasn't that bad before - I've never smoked, don't drink much alcohol, avoid fizzy drinks and processed food and avoid gluten free versions of things as they are full of fat and sugar. I felt great until a few months ago when I started practically collapsing from exhaustion, often feeling dizzy and sick. I thought it was my thyroid or blood sugar but I was surprised when doctor diagnosed post viral syndrome also known as ME. I was quite fortunate in that my doctor was very good, as I already was hypo and gluten intolernant this led to a quicker diagnosis which is based on ruling out everything else so lots of negative test results. Mine was likely to have been triggered by the noro virus and bad cold I had last Christmas - I never got bugs, even with a small child in the house. I was working full time on a stressful project and didn't take the time to fully recover. I also had the additional stress of my partner who was out of a job and a 6 yr old to look after. Looking back it's no surprise by body burned out and gave up, my major collapse was shortly after the project completed. I have found the free information and videos from the Optimum Health clinic (OHC) who specialize in ME really informative and have learned so much about how our bodies work (see their website and You tube) especially how with ME viruses can attack the mitochondria in our cells which convert our food to energy hence the chronic fatigue and post exercise malaise. So I whole heartedly disagree ME is a fake illness, as I'm sure would most people who are suffering with i,t but I can see from my reading and research that many may be fobbed off with this diagnosis without the full scope of tests being carried out to rule out any other conditions.
Hi! What a journey you have had, read with interest Thankyou. I also have a gluten intolerance and IBS. It is amazing how many things and symptons are linked, thanks for the info.
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