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Char19ailsa 12-30-2012 12:23 PM

Addisons disease and headaches
Hi, I was recently diagnosed with Primary Addison's Disease and am prescribed 20mg of hydrocortisone per day together with .1mg of fluodrocortisone each morning.

I have crippling headaches each day, all day and am really worried about my ability to focus at work. I'm also really fatigued by early afternoon each day. I'd really appreciate any suggestions for managing the headaches and fatigue.


ladybud 12-30-2012 03:13 PM

Re: Addisons disease and headaches
Many people with Addison's take their cortisone split with most in AM and a smaller dose in afternoon, like 15/5. The headaches could be related to either too much or not enough Florinef, and your resultant BP and electrolytes in blood. You need a good endocrinologist to help you manage this, and adjust your doses so you feel your best. Keep in mind that one autoimmune disease is sometimes accompanied by another, and if all is well with your BP, electrolytes, you might pursue whether anything else is going on to explain your headaches and fatigue. Some people split their cortisone into 3 doses. I would check out the endocrine boards and Addison's threads.

hayguy 01-07-2013 07:40 AM

Re: Addisons disease and headaches
Were you ever on just hydrocortisone and no florinef? There are a few people who have problems with florinef, some eventually tolerate it, some don't.

I was diagnosed with Addisons in May 2012. The doctors started treating me with straight hydrocortisone, 40 mg daily, split dose, and no florinef. And I felt pretty good other than having a lot of fatigue at the end of the day.

About a month later I was sent to an endocrinologist who put me on a lower dose of 20 mg hydrocortisone and started me on florinef. I started feeling lousy and had headaches. After about five days of that I couldn't stand it anymore, quit the florinef and went back to 40 mg of hydro.

A few months later I got a new endocrinologist who had me lower my hydrocortisone gradually to 30 mg, at which I felt alright. Then she started me on florinef again as my mineral balance was getting a little out of range, sodium was getting too low and potassium too high.

Because of my previous experience with florinef, I decided to take only a half dose per day. It did put my mineral balance okay but after two weeks of that I couldn't stand the headaches and feeling out of sorts anymore and quit the florinef again. My endo had me increase the hydro back to 40 mg, being that an elevated dose of hydo helps maintain mineral balance in the abscence of florinef, which it is doing.

Florief is not the same molecule as the aldosterone which it is meant to replace. It is an unnatural and artifical molecule. My HMO endocrinologist says she cannot prescribe for me bioidentical aldosterone. So I have an appointment next month with a different doctor and I hope I can get a prescription to at least try it. Maybe it won't have the side effects of florinef, maybe it will, but if I don't get a chance to try it I will never know.

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