Are All M.E Chronic Fatigue Syndrome and Fibrom... - Thyroid UK
Are All M.E Chronic Fatigue Syndrome and Fibromyalgia Patients Low Thyroid?
Holistic doctors believe the above. These conditions were only named in the 70/80's after the TSH blood test came into use as a diagnosis. Before that doctors diagnosed by clinical symptoms and you were given treatment. (not levo).
This is a link to a doctor,who was trained in clinical symptoms.
No, not all of them.
I have a friend with Fibro and went to a screening with her of a documentary that a ME/Fibro group made about how their patients were being treated. It was a truly shocking film and I wasn't the only one watching it who ended up crying.
One of the problems with the Fibro/ME diagnosis is that it's too wide. Some people suffer very severely, some die from it. Other suffer "medium" symptoms, some have "mild" symptoms and others can get better and recover from it. The wide diagnosis gives many physical and mental symptoms and there is a fight between doctors who think it's a physical illness and others who think it's "all in the mind".
Because the diagnosis is so wide people get wrongly put in it; depressed people, some thyroid people and others with similar symptoms. But there are some people who have something else badly wrong with them. There was one person in the film that sadly passed away and her mother had them do an autopsy. She had ganglia/fibroids on the base of her spine from an unknown cause.
On the other hand I know my endo has seen someone who was diagnosed with fibro and was actually hypothyroid and got better. I've gently encouraged my friend to get thyroid tests but she's already been told by a "specialist" that she's not hypo. I'm pretty sure he would only have done TSH and T4.
I'd like all Fibro/ME patients to get all thyroid and vitamin tests done and a trial of T4 and/or T3 before doctors and specialists give up on the idea that the patient is hypo. Because hypo can be made better and many fibro patients have poor quality of life with no medication that will make them significantly better.
You have to tread carefully when suggesting hypothyroidism to Fibro/ME patients since they've already had so many tests and tried so many things to help themselves. Like when I was diagnosed originally as depressed people would say "you should try exercise", "have you tried this?" "you only need to try this". It can come across as patronising and as if you've not already been trying everything you can to get better. I have carefully broached the subject with another friend who knows someone who has ME but they weren't receptive (they had been suggested many other things, over many years by other people) so I had to let it drop.
There is a Fibromyalgia help group here on Healthunlocked. Would someone in admin consider sending them a considerately worded message to make sure their members are aware of the possibility that they are hypothyroid and the problems of testing only TSH (and it's reference range) and T4? Worth considering.
All the best,
Totoro.
This is a link and answers by Dr Lowe (RIP) who was the Director of Fibromyalgia Research Foundation.
I think Escalade is on to something, though I accept Totoro's point that hypothyroidism doesn't account for every single fibro and CFS diagnosis. Coming at it from my angle, which is the research on pituitary dysfunction after head injury (which can cause hypothyroidism, hypoadrenalism, and hypo pretty well everything), I KNOW that there are at least a million people hidden away who have not been diagnosed. Where are they? It doesn't require much imagination to guess that they've been misdiagnosed with fibro or CFS. It is a scandal, when hormone replacement could restore their quality of life.
If anyone's interested in my maths, the incidence of post-traumatic hypopituitarism is estimated in one systematic review to be 30 per 100,000 i.e. 18,000 people a year in the UK, and in another it's put at 50 per 100,000 i.e. 30,000 a year. (Schneider, and Fernandez-Rodriguez) When you remember that less than 2% get diagnosed every year it's easy to see how this mounts up. And head injury is only one cause of hypopituitarism, there are lots of others.
I agree with Totoro about the reaction of people to yet another kind suggestion about what might be wrong with them - it's understandable they should feel weary - but somehow or other the message that might save so many has to be got through to them. And similarly, I actually think that many people on this forum, the ones for whom medication doesn't work effectively, may have other hormonal deficiencies they don't know about. Growth hormone deficiency, for example, which can cause fatigue and depression, hypoadrenalism, hypogonadism, when your libido and fertility is affected. So, calling all head injury survivors . . (the symptoms can appear many years after injury, and also the injury doesn't have to be severe, even whiplash can damage the pituitary.)
Despite doing the lifestyle advice, that you get when you have ME/CFS, I still had a persistent annual decline, with severe relapses. This was to the point of being in a wheelchair and virtually bedridden. I'm in no doubt that the cause of me going that bad was due to untreated hypothyroidism and adrenals.
I've had a long story with it all. Even if it's not everybody with ME/CFS, who knows if you have hypothyroidism diagnosis unless you fully investigate, if the GP won't help, or if you are on Levothyroxine and it's not working for you.
Hypothyroidism misdiagnosis and ME/CFS could turn out to be half the problem if it's not the whole of the problem. If you ask me, there's a strong risk of you having both conditions. Without fully exploring treatment options other than Levothyroxine, and battling to get a diagnosis in the first place, you've no way of knowing if it's applicable or not. That's because we've fighting against a misconception that thyroid is the easiest thing to treat, it's not that serious etc.
Even if eg treating hypothyroidism with T3 and taking adrenal supplements turns out to be only half of your medical issues, then it's still worth doing. That way it's a life worth living, and you can have a limited social role, and do certain things that you couldn't do before. Then you've got to navigate other avenues for other treatments to try and help other symptoms it hadn't fixed.
So I've found it a constant struggle, sorting things out for myself really.
Do you know that in the US people get disability allowence for Fibro but not for hypo? I once made the mistake of suggesting (or telling!) an American fibro sufferer that her Fibro was, in fact, probably low thyroid. I got such a mouthful!!! I won't do that again. Over there, from what I've gathered on American forums, they really cling to their fibro diagnosis. Little wonder if it gets them validation of their illness and a pension!
Whilst things like that are happening, there's little chance of reversing the belief in fibro in main-stream medecine. But how can you believe in a disease for which there is no form of testing (yes, I know about the pain points but that is a little... forced as a diagnostic tool), and no recognised treatment. In fact, it isn't even called a disease, it is a syndrome, a bunch of symptoms. But, hey, why bother to find out what they are symptoms of when you can simply give someone a label and cash your pay cheque just the same. It's just another medical get-out clause.
Grey
Just to be clear (as far as I understand it), ME has been in the WHO ICD since 1969 as a neurological disease and I'm pretty sure the term was coined long before that. It's CFS that's the new term and which can be all encompassing. I understand it came into being in the 80s through the influence of psychiatrists like Simon Wessely when it was deemed to be a "somatoform disorder".
I have been diagnosed with ME but I'm getting better - about 85% recovered. The NHS remedy of "pacing" did nothing to help me for over 3 years. The key was a nutritionist familiar with ME who correctly predicted adrenal and thyroid problems - which we went on to treat. Low thyroid often goes hand in hand with digestive disorders and thus potentially low mineral and vitamin levels and compromised levels of key enzymes critical to good metabolism. Both glands are also linked to the immune system - the common issue amongst all ME/CFS patients and a major user of energy in the body. These are the issues I'm now dealing with.
Because of my own experience and the inter-linked nature of all these organs I'd encourage anyone with a CFS/ME diagnosis to get a full check of both thyroid and adrenals.
Xanthe
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