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Messages
7
Hello everyone,
I'm just wandering if someone could help me. 12 months ago I was diagnosed with cfs - I was literally bed bound and very poorly for about 6 months before improvement began. Anyway, having six months of generally going up hill (though having many downs on the way) I've now gone really down hill again and feel like I did when I very first got poorly (which is different to my normal relapses). My main systems are fatigue, muscle ache, low blood pressure, thirsty, nausea, slow/sluggish digestion which has resulted in weightloss. My doctor has sent me to an endocrine department. What should I be asking them to check? I've had a SNTH test done which came back normal but I am hearing many of you talk about secondry adrenal insuffieciency and how this test does not show this. Could any of you please give me some direction please? I am based in the UK. Many thanks
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I suggest a thorough thyroid work-up that includes TSH, free T4, free T3, and reverse T3. Also Aldosterone.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hello everyone,
I've had a SNTH test done which came back normal but I am hearing many of you talk about secondry adrenal insuffieciency and how this test does not show this. Could any of you please give me some direction please? I am based in the UK. Many thanks

Normal and optimal are two different things and doctors don't seem to be very well trained in interpreting the ACTH stimulation test in general.

Was the test administered properly (at 8AM, fasting, with an IV)?

Can you post the actual test results?

Everyone I've known who has been diagnosed with AI in the UK has had a major uphill battle with getting a proper diagnosis. It's a shame it is so difficult. But there are some good specialists in the UK. Arlt is one that comes to mind.

I also agree with Little Bluestem that a thorough thyroid workup would be helpful making sure that they run the free thyroid hormones along with your TSH.
 
Messages
7
Hello, thank you so much for your replies. I never did see the actual result but it was done in hospital in the middle of the afternoon. I had had breakfast and lunch! I didn't know you were meant to fast for it either.

Which secialists do you know please?
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hello, thank you so much for your replies. I never did see the actual result but it was done in hospital in the middle of the afternoon. I had had breakfast and lunch! I didn't know you were meant to fast for it either.

Which secialists do you know please?
This is the only one I can think of offhand but she might be able to make a referral to someone closer.

Professor Wiebke Arlt MD DSc FRCP FMedSci

Professor of Medicine, Theme Lead for Endocrinology, Diabetes and Metabolism, Head of Centre for Endocrinology, Diabetes and Metabolism (CEDAM)
Arlt,Wiebke-Cropped-110x146.jpg


Contact details
Telephone +44 (0)121 414 3826 (Academic PA)

Fax +44(0)121 415 8712

Email w.arlt@bham.ac.uk

Centre for Endocrinology, Diabetes and Metabolism
School of Clinical and Experimental Medicine
Institute of Biomedical Research, Rm225

About
Wiebke Arlt is Professor of Medicine and Head of the Centre for Endocrinology, Diabetes and Metabolism at the University of Birmingham.

Wiebke Arlt has published over 120 research papers in scientific journals as well as reviews and book chapters in the field of basic, clinical and translational endocrinology, with a special focus on steroid biology and adrenal and gonadal disorders.

Wiebke is a sought after lecturer and has received several prizes and awards, including the Schoeller-Junkmann Award 2004, the European Journal of Endocrinology Prize 2009, The Society for Endocrinology Medal 2010, the Endocrine Society USA Ernst Oppenheimer Award 2010, and the Graham Bull Prize in Clinical Science 2010. She was elected Fellow of the Academy of Medical Sciences in 2010.