Congenital 1/2 thyroid, pituitary adenoma... chronic weakness, pain & more.

[jellynpain]

Hi everyone,

I have been suffering for more than three years with fluctuating extreme fatigue & weakness, pain (Fibro),

thyroid area skin rashing, massive digestive, bladder & bowel problems, difficulty swallowing, tinnitus (constant), brain fog, noise intolerance,nervousness and more. Had a huge impact on my life.

During tests discovered I have literally half thyroid, episode of dangerously low cortisol, micro pituitary adenoma.

Diagnosed with CFS/ME but I feel its connected to above (hormones). Endocrinologist did standard blood test (not all) says ok apart from eostragen. He is totally disinterested and wants to sign me off his clinic.

Has anyone else got naturally atrophied thyroid/the above?

I am pretty desperate to get support & correct help. UK based.

X

[shaws Administrator]

Hi jellynpain

Your symptoms certainly do sound hypothyroid but it is a pity the doctors are unaware of symptoms as they did before the blood tests were introduced. Now, it is diagnosis by computer but our TSH doesn't always rise sufficiently.

web.archive.org/web/2010103...

Always get a copy of your blood test results for your own records, with the ranges, and post on a new question for comments.

A couple of links:-

thyroiduk.org.uk/tuk/relate...

thyroiduk.org.uk/tuk/relate...

[Hidden]

Hi, I have some of your symptoms and have been ill for years. Are you aware of the TPAUK.com web site? I don't know enough to advise you but others may be able to help either on here or TPAUK.com. I have found them very helpful, more than GPs or endocrinologists who just seem to dismiss you saying blood results are "normal". I really want to shout "YES BUT I FEEL LIKE IM DYING" they would prob refer me to pshyc if I did!

Good luck !

[jellynpain in reply to Hidden]

Hi,

Thank you for your reply. I am going to have a look on the website.

Thank you

[rossilin600]

Hi there, I really feel for you these symptons affect your whole life and only people going through this understand. What I dont get is why the endo has not started you on hydrocortisone as your cortisol is dangerously low did he explain why this was as you will could have a adrenal crisis if it continues to fall untreated.

[jellynpain in reply to rossilin600]

Hi everyone,

Thank you so much for your replies, support and links.

I am going to read up.

I had a form of collapse some time ago, body just physically stopped working. Was admitted to Neuro They couldn't find a reason (they ignored my request to check hormones) ,discharged after 4 days, physically more able but feeling awful. A while later my cortisol was tested and found dangerously low. However, short stathecen test showed improvement two days later. I believe low cortisol caused it all and my hormones are not working properly.

Since then my mobility and feeling unwell varies everyday.

Incidentally Neurology referred me to Neuropsychological Depth!!!!(Neuron had no listening skills). I did not attend. Now I have an Endocrinologist with disinterest. Says my atrophy thyroid & micro pituitary adenoma are not problematic. Also says "everyone's thyroid swells and rashes" (rubbish).

He works purely by putting lab blood tests on his pc graph.

My very first complaint to my old gp 4 years ago was discomfort near my thyroid (pre other problems & findings).

My Endocrinologist wants to sign me off his clinic in November at next appt.

Am I on the right track?

X