Pituitary Disease & M.E

[Sickofbeingsick]

Hi,

I am having a very confusing time as I have hypopituitarism (literally no functioning pituitary) which I have been dealing with for 12 years but have also developed M.E in the last two years. Although I was told it was a case of 'ruling out' other conditions to diagnose it I don't seem to have been investigated for much else!

I am wondering if ME is common in Pituitary patients? It is so hard to tell which condition is causing me to feel unwell and I am also sure that the ME must be making it harder for my body to cope and at times causing me to need more cortisol. Do you think this is likely? It is just so hard to tell and I am having a nightmare working out what dose to take when I feel really unwell!

Over the last two years I have become worse and now I really struggle to get up in the morning, get anything done and if I feel 'reasonable' I can manage only a couple of hours up and doing things before I have to have a sleep. When I have been out I feel so weak, right to the bone, its so different to normal tiredness. If I overdo it and push myself I end up collapsing, I always get very emotional too and cry. Is all this normal?

I know M.E is still not accepted by many people. I feel embarrassed and ashamed and useless I often catch myself thinking it cant be M.E why are you so useless?!

Any advice would be much appreciated as I feel very lost and overwhelmed by it all.

Thankyou!

[Dr Charles Shepherd]

Problems with the pituitary gland (over activity and underactivity = hypopituitarism) can cause symptoms, including fatigue, that overlap with ME/CFS

So the MEA includes pituitary disease as part of the differential diagnosis of ME/CFS and advises that tests of pituitary function should be carried out where this is considered to be a possibility

This assessment is covered in more detail in the MEA booklet: ME/CFS/PVFS - An Exploration of the Key Clinical Issues

As to whether you have ME as well as pituitary disease, I'm afraid that this is not a judgement I can make over the internet. You really need to discuss this with your endocrinologist and possibly ask for a referral to an ME/CFS clinic if this does seem possible.

MEA website and literature order form: http://www.meassociation.org.uk

Relevant publication: http://www.endocrine-abstracts.org/ea/0 ... 32p222.htm

[Sickofbeingsick]

Thankyou for your reply!

I am certain that it is more than the pituitary disease as I have been able to do so much more for the first ten years with pituitary disease than I can now and in the last 2-3 years. I hate this condition it's so baffling and debilitating!

It's fantastic that doctors like you are speaking out and helping raise awareness as so many doctors are still in denial or just don't understand it. The first doctor I went to refused to acknowledge it at exists at all! (Well I'm sure I'm not living half a life for the fun of it!!).

I realise you can't diagnose over the internet and that it is hard to separate the two conditions as they surely affect each other; it's just so hard to medicate on that basis and of course my endocrinologist doesn't know enough about M.E to work it out either, so I'm a bit stuck in between!

Thanks again and best wishes.

[Dr Charles Shepherd]

Thanks

As my colleague Dr Nigel Speight (paediatric adviser to MEA) keeps saying - the medical profession owes people with ME/CFS an apology for the way they have dealt with this illness over the years...