Posted , 3 users are following.

Hi everyone,

I 'got' CFS in 2014 and have had many ups and downs over the years. My neurologist was fabulous, totally understood CFS/ME and had no hesitation in saying that's what I had. Obviously no cure but he recommended pacing and rest and medication for pain which I no longer use as I am now extremely sensitive to meds.

I had my six monthly follow up appointment yesterday and saw someone new as my neurologist has left. This gentleman doesn't really go for the whole CFS thing and says there is always an underlying cause and wants me to see an endocrinologist.

Obviously I am open to any test that's going although I've had many blood tests over the years including thyroid and diabetes so I'm not sure what they hope to find.

Has anyone else seen an endocrinologist and what was the outcome?


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  • Posted

    I would like to follow this discussion as I was actually 'Diagnosed' with m.e. by an endocrinologist. as I had all blood tests etc through gp I was referred to him as apparently he used to run an m.e. clinic (was closed due to funding). the only other test he did was for adrenal gland function (for possible Addisons disease I believe)..it was an additional specialised blood test which needed to be done in hospital. took about 30 mins. as that came back with normal results amongst everything else he concluded I probably had m.e. no meds or follow ups since though! I must admit it's frustrating as I'm still dealing with symptoms.

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    • Posted

      I was initially referred to a neurologist as my brain fog, speech etc was so bad they thought I'd had a mini stroke (TIA) The MRI showed a small bleed but the result was inconclusive. Once I had seen him they kept doing follow ups.

      I feel, as I've had numerous blood tests over the years and I'm sure these will come back clear, that they just want to sign me off. To be fair I'm happy with that as all that happens is he would ask how I was, had I been pacing myself etc and send me on my way.


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  • Posted

    It’s great you have seen some understanding specialists. I agree there must be an underlying cause so it’s great they are sending you to see an endocrinologist. I’ve not seen one but my belief is the endocrine system is effected, but not sure if it’s the cause (or effect)

    There is always the hope they may find something else which can be treated e.g further thyroid tests or hormone imbalance etc. It would be interesting to find out how the tests go so please keep us posted.

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    • Posted

      I'll keep you informed. The waiting list for endocrinology is months as I'm not deemed urgent. So keep watching this space 😁.

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