Chronic Fatigue Syndrome/ME/Fibromyalgia

[supressedtsh]

Why are so many people being told that they have CFS/ME/Fibromyalgia when most of them have hypothyroidism?

Some people are lucky enough to be diagnosed with hypothyroidism if their tsh goes above 10 but then if they still have hypo symptoms then they are told it is CFS or ME or Fibromyalgia ...... how can this be?

What is really happening is that people are misdiagnosed because doctors only look at blood test results. TSH blood test is totally unreliable.

Hypo symptoms disappear when we are fully medicated. Why can't us patients be in control of our dose.??

We don't know what our normal levels are? surely we should take the amount of thyroid medication that feels best for us. We know how we feel! Our blood test results don't always reflect how we feel.

[hellohelenhere]

I have to say, I think that CFS should be junked as a diagnosis - it's only a more elaborate way of saying 'tired all the time', which the patient knows for him or herself. What it really means is 'we don't know what your problem is, and we're not going to try to find out. Now go away'.

[hellohelenhere]

... and the same goes for M.E., I think. I feel rather strongly about this, as my husband was sick for the past six years or so, and was lead to believe that he had 'untreatable' M.E./CFS. He started T4 this winter and his health has returned. Why could this not have been done years ago? We're very angry... He even had half his thyroid taken out in 2008. But his TSH was under ten - so, no treatment.

[supressedtsh]

It is so wrong, I completely understand your anger .... this is our lives we are talking about here! and we have years of our lives ruined because out tsh isn't high enough! crazy!!!!!

I remember in the 80's when people were being diagnosed with ME, which was soon nicknamed yuppy flu. It can be easily seen why this happened.

In 1973 the TSH blood test was brought out. Prior to that we were diagnosed with hypothyroidism when we told our doctors that we had hypo symptoms.

But no, when TSH was normal people were told that they had ME. So many people have suffered when all they needed was some thyroid medication !! but look how it saved the NHS a fortune because .... guess what? ..... there is no medication for ME, didn't cost the NHS, so they thought !

I would gladly pay for my prescriptions if it would have meant that I would have been diagnosed with hypothyroidism much earlier!

[hellohelenhere]

Yes, it's both bizarre and tragic that a disease which was successfully treated in the first half of the 20th century, is now left *untreated*. What a shocking situation.

[laladrew]

I'm in the odd position of being hypo (graves disease and sub total thyroidectomy) and two years post surgery being diagnosed with fibromyalgia too. So, I have two rubbish chronic diseases that are being badly, if atall, treated for. The endocrinologist seems to put all symptoms down to fibro, which alleviates the need for him to treat the thyroid...

Prior to thyroid removal I was in great shape but hyper. Now I have high blood pressure, high cholesterol, tachycardia, breathlessness, migraines, vertigo, nausea, extreme fatigue, hallucinations to name but a few. Marvellous advice to have a thyroidectomy. Not.

[Dr Graham Beastall]

The TSH test is one of the most investigated and evidence based tests in use in laboratory medicine. It has a very high level of accuracy and is a sensitive measure of a failing thyroid gland. There are very many authoritative publications in the world literature that attest to this fact. So it incorrect to state that 'the TSH test is useless'.

The discussion point centres around a group of patients who have symptoms that overlap with the symptoms of hypothyroidism. If the TSH test is consistently normal over a period of time then these patients do not have classical primary hypothyroidism. However, in the absence of a definitive diagnosis it is perhaps understandable that some individuals will choose to ignore the TSH results. They seem justified because when a trial of thyroxine replacement is given some people may feel better. This is not altogether surprising because thyroxine controls metabolic rate and most of us feel more envigorated if our metabolisc rate rises a little. Therefore, the issue is whether or not alleviation of symptoms in the absence of evidence of a primary diagnosis may be appropriate.

The results of all investigations should be interpreted in the light of the symptoms being experienced by the individual. TSH is the same as other investigations in this respect.

[EricaT]

The symptoms don't overlap, they are the same. I've had hypothyroidism for over 12 years and am now being told I have CFS as well - they are the same symptoms. The only difference is that the blood tests are now 'within range' - as they were for the 13 year it took to get a diagnosis of hypothyroidism!
The TSH test may well be sensitive and very accurate but it has no bearing on how a patient feels or how well the symptoms are alleviated.
And of course thyroid medication works in these cases - it is what the body is crying out for. Low metabolism is one result of hypothyroidism and thyroid meds raise the metabolism, the thyroid hormones are used more efficiently by the cells and the patient doesn't just FEEL well, they ARE WELL!
Why is the medical profession so blinkered on this issue?

[Dr David Kerbel]

I was impressed with Dr Beastalls authoritive & insightful reply.
Medicine is an art as well as science.
Science says once TFTs are in range thyroxine replacement is adequate.
Excess replacement can "strain" body and cause angina, however what about quality of life?
A valid arguement may be made for taking as much levothyroxine as you want and as long as TFTs are in normal range you should be OK (science backs this as well).
However if TSH is <0.3 you need to reduce your levothyroxine dose.
Regular TFTs every 3 months (or more often if you feel hyperthyroid) are vital.