Have people been told they have CFS prior to proper diagnosis

I have been told that my looooonnnggg list of symptoms could be due in part to a thyroid issue or possibly chronic fatigue syndrome - when I questioned the CFS bit and said that I had was not aware of having had any illness in recent yrs and apart from hysterectomy nearly 5 yrs ago - no other trauma. The consultant said it could be a virus that has lain dormant for a while?

Spoke with a work colleague who is alos going through the battle of getting sorted and she said she was told by her GP she had CFS about 2 yrs ago - but now she is pursuing the thyroid issue route.

So - is CFS a symptom of thyroid disorder or a catch all like the age/woman/menapausal bit?

5 Replies

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  • Good question Stacey! I wish I knew the answer :-)

    I personally have not had a CFS diagnosis, but I've heard that it's quite common to be told this when blood tests are 'apparently' not indicating a thyroid problem. Even people on thyroid medication who complain of ongoing unresolved symptoms seem to get told that as their thyroid levels are in range, it can't be thyroid.

  • Thyroid UK has been told many times that people have been given the diagnosis of CFS/ME. Some of these people go on to improve their health and some don't. We usually suggest checking lots of things such as all the thyroid tests - FT4;TSH;FT3 and thyroid antibodies; cortisol and DHEA; B12; iron, ferritin and D3.

  • Hi Lynn,

    I have had tests done by Endo for T3 and the pituitory one and await results (including a pointed letter to my GP telling him that it is not menapausal stuff and I had to see the general endo). Will post them when I have them back this week - for feedback.

    Recent bloods for B12 - 292 pg/ml (190 - 660.0) and ferritin 112ug/L (20.0 - 300.0) and here's a good one - D3 - result says NA Ranges for White East Anglian Adult with ALP in normal range - what the heck does that mean??!! Folate was 5.4 ug/L (4.6 - 18.7).

    I could go cross eyed trying to figure out all the print out of tests I requested for the GP - the only one which stood out and may not be relevent - is Platelet count obs - from 260 to 254 and now 2 yrs later is 234 - any ideas.?

    By the way - a million thanks already for all the support and advice.

    STacey

  • A friend of mine who was diagnosed with M.E. and fibromyalgia five years ago has recently just been diagnosed as hypothyroid and is now on the road to recovery on T4 and T3 medication. She says she looked back at her medical records showing TFTs and all along they were within the reference ranges, but with T4 right at the bottom of the range. It's only now that her levels have dropped just outside the ranges that she is being treated.

    Hypothyroidism was diagnosed and treated perfectly well, based on symptoms only, for half a century before blood tests for thyroid function were invented in the 1970's and became the "gold standard" of diagnosis and treatment.

    CFS/ME/Fibromyalgia started being identified at the same time as the blood tests replaced symptoms for diagnosis and treatment.

    My friend is not alone in recovering health from thyroid treatment after a diagnosis of ME and fibromyalgia.

    That's not to say that all cases of ME are undiagnosed hypothyroidism, but many might be.

    In France people are treated for hypothyroidism if they have a TSH over 2.5 (same reference range as in UK), whereas in the UK NICE guidelines for diagnosis of hypothyroidism have, I believe, recently been increased from TSH above 4.5 to above 10!! Interestingly, in France, CFS/ME and fibromyalgia are virtually unknown.

  • Just to butt in on this question yes 10 year ago in was told I had ME. Now they are saying i don't due to certain symptoms I have not being ME related. Now seriously unwell still with no answers.

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