Me/cfs/fm/underactive thyroid: I have been... - Thyroid UK

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Me/cfs/fm/underactive thyroid


I have been suffering from me/cfs/fm/thyroid disease, 1977 was when it started , I was seven months pregnant started with tooth abscesses seven In total ,during pregnancy i was sick from the start never ill before , then after birth it seemed o be calm then two years later I caught an unknown virus in France and it was all down hill from there, I have suffered over thirty years of pain and misery, my mother was diagnosed with ME/cfs first then MS the strange thing about the connection between me and mother was we both had autoimmune diseases, I have after all this time been to a me/cfs clinic who have tried to help but as yet no improvement, I have gone worse and I wish this nightmare would end . I have one infection after another and yet I still cannot break the cycle of infections I truly believe that autoimmune diseases have a strong connection .

I am sure that I am not alone in thinking that there are others out there who feel that they cannot take anymore pain, I hope to god that someone finds a cure soon, my son is showing the same sighns as me and my mother and I hope to god his son does on to have these awful diseases.


14 Replies

Hi Sorry that you have had such a rough time. All autoimmune diseases are connected, some more than others, there are lots, Diabetes is autoimmune and hormonal so is thyroid disease. I am not quite clear but if you think you have thyroid disease but not been tested for it, must be TSH, T4 and Free T3 for a proper evaluation, like all bloods always ask for ranges, as vary a lot. If you have not had these tests and wish to, you can have them on line, I use Blue Horizon main site, finger prick or venous blood, if you quote TUK discount price is £60 - £70, very easy results e mailed to you. Well know Lab, so ideal to show a doc for treatment, if you wish. Otherwise regarding autoimmune diseases, no prevention, just a case of watching out for them. Closely connected to thyroid disease and needing testing are also apart from the Diabetes, B12+ foliates ( need to be high in range), vit D if low, then test for corrected calcium before treatment, D makes it go up so must be kept in range, at all costs, also iron/fern fairly high in range.

I hope this helps,

Best wishes,


Not sure if you know, to reply to a specific post, click on "Reply to this" under that post.

If you think your problem is autoimmune, take a look at this

Your problem could also be adrenal related as well as thyroid. Take a look at this and then take this quiz

I've been ill for the same length of time as you. For many years I was told there was nothing wrong with and sent to a psychiatrist, at the same time as being filled with beta blockers to stop racing my heart out of control.

I keeled over completely when I had the menopause and was bed bound for a while, so weak that I couldn't even sit up. Total disinterest from my doctors who wouldn't even come and see me. Fast forward and I took matters into my own hands last year. One GP grudgingly told me I had an underactive thyroid. Loads of research and tests later I am improving on a regime prescribed by Dr P. For me, that is mainly adrenal support with the addition of 50mg thyroxine and some nutri adrenal.

We have both been fobbed off by doctors for years. ME/CFS were invented to negate the need for doctors to find out what is actually wrong with you. Similarly FM - which is a SYMPTOM not a disease in its own right. But if they say it is a disease they don't have to do anything to find out what is causing it.

Imagine that having "knee pain". Your doctor will probably start by giving you pain killers. If that and rest don't work they will refer you for more tests. They may or may not find the cause, they may tell you that you have to live with it as they don't know what is causing it. They WON'T tell you that you have "knee pain" syndrome. In other words, they won't make up a non-existent disease to avoid having to treat or diagnose you.

ME/CFS are always caused by something. I've known that for 37 years, it just took me that long to find out what. The ME clinic I was sent to a year ago was a joke. He "specialist" wasn't interested in the history of my illness, didn't examine me, didn't ask me any specific questions and didn't order any tests. Interestingly, the cardiologist that I saw at about the same time, got it in one. He asked me if I had thyroid problems.

So sorry that you've had such a terrible time with your health. I know from researching my family and relations and then reading widely that there is a genetic predisposition to autoimmune diseases. We have a wide variety within my family . What I don't know yet is how to protect my own children and future generations but there is research going on.

Others have given you good advice already but I wanted to add that you have taken the first step which is to take this into your own hands. Find out as much as you can, record all your symptoms. I found the GP really only took notice of me when I went in with my really low basal temperatures (first thing in the morning on waking).

Sending hugs,



tegz in reply to MaryMary

I provided a chart of low basal temps rising when taking kelp. I also reacted strongly to taking L-Tyrosine supplements becoming quite hypo on low dosage [with a herb added].

All this was ignored by Docs and the nurse just filed it, promising great action in future. Haha!

Now I have two autoimmune illnesses and high TSH [private test].

Hoping to get a modicum of sense/compassion from GP next week...

I'll take TSH result, old chart and the list of countries US+EU that have 3 as a working TSH limit.

Also, a vitamin D deficiency can be involved with infections and even cancer. Have you ever been tested? It's quite common with hypos and also in northern hemisphere. Treatment can be administered using 50,000 i.u. on a weekly basis. Please be tested if you haven't had it before.

The LDN mentioned above might also be an option.

Fatigue- Adrenal insuffiency? [Exhaustion not recognised by NHS]

How about getting a cortisol test done- 24hr utine or Syncathen test, if you can take the challenge to system?

This factor must be considered before UAT can properly be dealt with.[Dr D-Peatfield book]

Many thanks to all who replied, it's a relief to know others have the same problem, I forgot to mention I have thyrotoxicosis and had 131 therapy and was in quad teen for a couple of weeks to kill the thyoid off it was not until six years after I went on to have an underactive thyroid with a tsh of 18 I cannot tolerate thyroxine and do not take it as this gives me bad side effects even in very low doses. The ME/CFS clinic insist I have a mood disorder well I have been down with pain but never depressed and I bounce back. I have myclonic night fits

And yet no one seems to have an answer I quite agree with Jakie that ME/cfs is a cop out to

I DON'T KNOW WHAT'S WRONG WITH YOU so we will diagnose you with a mood disorder and then try to fob you off with antidepressants and anything to do with depression so I guess it's took them 37 years to decide I am depressed..what a load of rubbish ... I have held down a business for thirty years nursed my mother through MS nursed my father through Cancer and looked after a severe learning difficulty brother who I must say brings us lots of laughter . Has anybody any suggestions..

Once again thank you all for your replies

Chiquitita in reply to Alone

Hi Alone

I am so sorry about the way you are being treated by the healthcare system, there is just no excuse. I completely agree with what others have said about the diagnose of Chronic Fatigue or Fibromyalgia being a cover-up for the fact that the system is completely dropping you.

Regarding autoimmune disorders: have you ever tried a complete gluten free diet?

I suffer from autoimmune thyroiditis and this is working so well for me, it really is making such a difference to how I feel. Before seeing the Doctor who is now treating me, I would have never thought I had a problem with gluten, as it has never given me digestive problems (I don’t feel bad after eating gluten at all, I digest it beautifully). I must humbly confess I thought of the whole "gluten free" scene as a silly Hollywood eccentricity. Now I know better.

The doctor explained to me that autoimmune disorders are generally caused by elements in our diet which our body somehow “reacts to”, in ways that we do not notice at all. Figuring out what those elements are is the tricky bit. I learned that just because something doesn’t make me feel bad instantly upon digestion, it doesn’t mean that it isn’t a real poison for me. I also learned that just because something didn’t use to be a poison for me years ago, it doesn’t mean that it hasn’t become one now.

Gluten is one of the most common “allergens” for autoimmune patients and the thing of it is: being sensitive to gluten is hereditary. There is a gene that makes us prone to develop an autoimmune reaction to gluten, and this is passed on. This gene can be “dormant” and cause no trouble at all. However, if you have it, it can wake up (depending on stress, life changes, infections etc.) and start causing real havoc, causing our bodies to start developing mad antibodies which start attacking various bits of us. If you don’t have that gene, then this just will not happen to you. Ever.

There are a lot of patients who experience dramatic improvement of autoimmune related symptoms by adopting a gluten free diet, and this is true for me. Other known common allergens and dairy and eggs, and there are millions of others… it is a complicated world. Since eliminating gluten from my diet, my anti-thyroglobulin antibodies have significantly decreased.

This may not work for everybody, and in any event it could just be a small part of the puzzle of your situation, but I thought it worth mentioning. If you haven’t done it before, maybe experimenting with elimination diets would be worth doing?

I found this book very inspiring and helpful: “Autoimmune – The Cause and the Cure” (Annesse Brockeley, Kristin Urdiales) It is written by a woman who, having been dropped by the medical establishment like so many others, cured herself of Lupus (THE most troublesome autoimmune condition you can get) by investigating her diet and experimenting with it, figuring out what she can or can’t eat to send all her symptoms away and live a completely symptom free, normal life.

I wish you the very best. Take care.

so very sorry. I can empathise fully. I hope someone finds something to help you. I suffer menieres, hypothyroid,m.e and tinitus. I believe the epstein barr virous anti bodies are supposed to be in all of us with these problems.

Hello folks,

This is my first post here.

I'm sorry to read about your and your family's health struggles. Unfortunately my experience is that doctors don't ''join the dots'', and cannot see the big picture eg a patient's full medical history and relevant medical history of one's parents/genetic disposure, travel history and symptoms/other illnesses and their effect on the patient's health and quality of life.

I lived in France in my twenties and got gladular fever. Bloods showed EBV, CMV and coxakie (?spelling) viruses. Again I had high titres of those viruses in 2010 and only then learnt that once in your body they stay forever, in dormant form, but can also re-activate.. Then I discovered to have late stage lyme disease and its co-infection bartonella (for more reliable UK info see:

And finally ended reading this forum, as my thyroid is affected also. I've had swollen glands and lymphadenopathy (swelling) for years, and now have a multinodular goiter as well.

I found the youtube link/Dr Sherry Tenpenny that someone had posted here very good.

I have also read "Stop the Thyroid Madness" book with lots of interest.

kind regards

kummitati in reply to kummitati

Sorry, with brain fog and internal shakiness, I forgot to mention another book called "Your Thyroid and How to Keep it Healthy: Second edition" … by Barry Durrant-Peatfield that I found very good in trying to understand thyroid issues.

Before I learnt about lyme in 2010, I used to think for over 10 years that I've got some sort of arthritis, IBS/recurrent gastroenteritis and thyroid problems: symptoms fitted mine (fatigue, joint problems, feeling cold, thinning hair, bad nails etc), but at times with hypo (swollen, unusual weight gain) and at times with hyper (looked like anorexic but had good appetite and healthy regular meals), and 'run-off'-the-mill' blood tests were (almost always) within normal range.

In 2010 I was told to take iodine for deficiency, then another dr told to stop it as my TSH was so low it could not be measured..

In 2012 based on blood tests I was told that I don't have Hashimoto's autoimmune condition. Now I still don't know for sure what's what - apart that lyme disease also afftects hypotalamus-pitutary-thyroid axis, among other things that it has caused to me and still does.

As the diagnosis and treatment of lyme disease and its co-infections is an international disgrace - UK patients suffer greatly, those who can travel to US or Germany to get treatment.- I was hoping that thyroid issues would be better understood and treated by GPs or ENDOs. Unfortunately it seems to me now that it is the same sort of 'battle against windmills' with thyroid issues, particularly for women...

I was told I had ME / CFS about a year ago but had not had any illnesses to 'trigger' eventually I looked into my Thyroid. At 41 years old I felt about 91!

I had been on Thyroxine for 12 yrs at 50mcg and after all the help on here , badgered my Fr and have now increased to 75mcg then 100 mcg in 12 weeks. I am self treating for Candida after reading Dr Peatfields book. It is a bit trial and error at the moment, but I think I am finally on the right road....

Keep positive and explore every avenue, you deserve to feel better.

Need to find an endo that will treat with T3 andT4or T3 and NDT. I seem to remember someone posted Louise Warvill wil be able to help. Is there an email address I could use to contact her?

Thank you

Hidden in reply to mariolin


xx :)

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