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Anybody else with Addison's?

(4 Posts)
cobaltblue27 Sun 07-May-17 22:19:34

Hi everyone,

Great to see this category here! I was diagnosed with Addison's and Hashi's in Feb and March 2016. The Addison's has scared me more, in part through a pretty traumatic route to diagnosis and also because it's so rare. Grateful to hear from anybody else with Addison's and share experience. Best wishes to all the autoimmune sufferers out there!

Surfingwhippet Mon 08-May-17 16:07:46

I have had Addison's for 17 years. I'm sure you have loads of questions so ask away

cobaltblue27 Thu 11-May-17 00:32:47

Ah wow! Great to find someone else! How have you found steroid replacement and what doses are you on? I have so far jD enough adrenal reserve to survive without daily replacement, but I wear the bracelet, have the emergency injection and have to take hydrocortisone if I get ill. I have a history of severe eating disorders and am really frightened about weight gain with steroids. Did you struggle to find a good endocrinologist? I went through three before I settled with one. Please share any thoughts and experience!

Surfingwhippet Sat 13-May-17 22:32:55

I had no adrenal function when I was diagnosed so I was quite straightforward in that they saw me for a year or two to get my dose right and then left me alone.

Since then I have played with timings and dosage myself and at the moment I take a 10/10/5 split although I reduce during the summer usually to 10/10/2.5 as I usually feel better with the warmer brighter weather.

Are you taking fludrocortisone yet?

You shouldn't gain weight when you do start taking a replacement dose as it's usually only a high dose that will cause you to gain weight.

How were you diagnosed, as it's more common to be diagnosed when there is no adrenal function at all?

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