Thryoid Antibodies and levels all of them unsta... - Thyroid UK

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Thryoid Antibodies and levels all of them unstable but not getting any help currently with 2nd opinion doctor, not looking very promising?


I have CFs/ME and was diagnosed May 2004 following about 6 months of fighting for a diagnosis, it was a nightmare, then about 18 months ago my health took a serious turn for the worse and I have been asking for help since. Recently seen an endocrinologist who was no help whatsoever and his registrar was nothing short of rude and dismissive towards me. I am now obtaining a 2nd opinion where they actually sat there and explained things to me with respect to the thyroid, this was a bit better. When I explained all my symptoms that were quite clearly associated with the thyroid, they dismissed my question regarding hair loss, eyebrow and eyelash loss saying I should request to see a skin specialist, clearly they think I am not informed and do not understand my problems. I was told that even though my TSH, T3 and T4 levels were up and down they were all in acceptable range, I had all my bloods taken again for about the 20th time and am waiting for a scan on my thyroid and those results to come back but he as much as told me I will be referred back to my GP and monitored until they believe treatment is relevant. They are passing me of as a person with CFS/ME, what am I supposed to do, I am taking 400 units of Vitamin D, Calcium tablets and high strength Vitamin B complex and have been using Oestrodiol for some time due to low oestrogen levels, my doctor prescribed me all of these due to me being low on all of them. How do I get the treatment I deserve on the NHS, I do not want to complain but I do not know how much longer I can cope, most days I do not leave the house and have been unable to even attempt a return to work since 2008. Fatigue and pain, nausea, headaches, palpatations, anxiety to name just a few of my issues, you name it I have it, so cold, cannot get warm. One of the doctors at my surgery when I said I have thoughts of ending my life and I just want some help suggested I go in and talk about my mental health. Angry does not even come close to how I feel. I do not see any hope of treatment and feel totally devestated as now I am on about my 10th benefits review, the day after seeing the endocrinoligist another questionnaire from atos, I have only been in the support group for about 3 months after fighting the last decision to place me in the WRAG group, I want my life back or at least some of it, I don't expect miracles, just a little help to get me on a manageable level would be nice. Any suggestions greatly appreciated?

5 Replies

You may have taken a ride on the merry-go-round of being diagnosed only by the TSH and not your clinical symptoms. I am sorry you have had this problem since 2004 without medical assistance.

This is a link to a doctor who became involved in thyroid conditions and you will see (as a trainee doctor he was taught to diagnose thyroid gland problems by taking the patients medical history and diagnosing by clinical symptoms). This was before the TSH blood test was introduced.

He is private though.

This is a link to the Scottish Parliament which will interest you, I believe, as many of us do, trying to change attitudes by the people who are supposed to detect endocrine problems. has a list of NHS Enos but am not sure whether they also only

go by the TSH

Your symptoms do sound hypo. Have you had a Vitamin B12, Vit D, iron, ferritin and folate blood test. If not ask your GP as many are deficient in both vitamins.


Hello shaz123, I am very sorry to hear that you have been having a bad time with all of this. I am also struggling to have hypothyroid type symptoms considered and assessed and I also have ME/cfs. It can be very difficult to make any leeway,and the situation can feel very isolating, especially with the benefits system on your back. But lately I have been reading the posts on this site and trying to get better informed. Also, there are many connections between thyroid (dys)function and ME/cfs which are available to read about on the web. ME Action have a doc writing about thyroid in relation to ME/cfs - the overlap as well as the differences, just put 'thyroid' into their search field. Otherwise I haven't got anything specific I feel I can help with here, as you are already further down the road, having seen an endocrinologist and waiting for a scan. But I can see you working through this well, despite setbacks, some of us haven't been able to get much further than the doc's consulting room! The only thing I would say is can you get some help from a benefits advice worker, so that you don't manage the benefits process on your own? I use the benefits and work site which can be googled as they are very informative.

I just found this article by Dr. Lowe and have read for years about the importance of this mineral.

Correction: article not by Dr. Lowe but on the website.

Hi Shaz123 I sympathise with the obstruction that you have suffered. As one who has struggled for over fifteen years and has just been diagnosed correctly I would recommend this item from

it points out that CFS/ME may not be what we think! I would also recommend the excellent and comforting book by Dr Barry Durrant-Peatfield (Amazon £8 approx) Go well!

Daffydownilly :-)

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