Addison's Disease Support Group

Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone

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livinginmontana 05/17/2013

I have been having very bad headaches and eyes are so sensitve to light. I am on 30 mg of corisol broken up over the day and floranef 1 mg I had adrenals removed 1 1/2 years ago and have been doing good other than weight gain muscles got trashed with cushings but I have been doing okay. My primary dr thought I should see neurolgist has anyone else had trouble with headaches. Could I also have problems with pitutary my acth was at 1000 and should be between 10 and 60. Just do not want to keep running to all types of drs do to cost but do want to find out. Any insight would be helpful. My endo seems stumped as to why I am having headaches with this amount of cortisol.

deleted_user 05/17/2013

It's interesting that you should post this. I just saw my cardiologist about my low blood pressure. She is doing the basic tests like tilt table and such, along with a few blood tests. One of the tests is an hCG test, which is the pregnancy hormone! I'm not even kidding, although there is no reason to suspect pregnancy. I googled this test, and it says that this test isn't used for pregnancy, but to check for tumors, possibly on the pituitary!

I am having the same symptoms as you; headache, light sensitivity, and my pupils don't want to contract. I'm not sure if we are dealing with the same thing, but the similarities are a bit weird!

livinginmontana 05/17/2013

That is crazy! I know that I have to do something about the headaches I don't have them everyday but when I get them they are horrible. I just not sure it is a neurologist i should see just a little confused everytime I think I have this figured out something new comes along what a bummer.

deleted_user 05/17/2013

I know what you mean. My headaches, eye pain/ sensitivity are a relatively new thing, appearing the week i get my cardiology referral through. I'm like " seriously? Now something else pops up?" But it's definitely related, it has to be. I'm pretty sure my eyes have to do with aldosterone , but i can't get tested without someone thinking I need it. If after all the tests and stuff my eyes haven't gotten better, I'm going to suggest to the cardiologist an aldosterone test. Perhaps you should get your aldosterone checked out too? Are you on florinef or anything?

livinginmontana 05/18/2013

I am on 1 mg of flornef I did have a stress test for my heart and my heart was perfect, I was so glad. I feel good just fatigue and the darn headaches. the drs at mayo checked out my pitutary before I got adrenals removed and said that everything was okay, but I never had headaches before surgery so my primary dr thought I should have the neurologist look me over. My blood pressure has been getting better with time.

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