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
I need the opinion of people that have gone through experiences. My primary M.D. has put Adrenal Insufficiency as a diagnosis and I have been on Fludrocortisone since Nov 2012. Anyway, I saw an Endo last Dec and he didn't see "any signs" of Addison's so he pegged me as Orthostatic Hypotension. He did do labs that looked at my kidney function and labs ok but a little anemic. But, at the time I was started on Florinef my Systolic BP was in the high 70's to 80's. I've been under stress since October ('13) and my husband lost his job 2 weeks ago. Some more unusual things have been going on and I need your opinions (knowing your not physicians- but you are experienced people). A few weeks ago I had two episodes that I felt weak enough I thought I was going to pass out and had to sit down for a bit............... A) over last weekend I tried to take some time to enjoy so we went to a festival and walked around for a short while and sat for awhile. I always tire very quickly but I had low back pain mostly on one side and my legs and feet felt fatigued and almost aching. I took ibuprofen all weekend (and usually don't). the next day we walked some and was mildly busy. the third day I mostly stayed home to rest. I didn't have much left in me to do anything.
....B) On Monday we were doing bedside rounds in the hospital (Im a nurse) and do a lot of standing still in the rooms. After about 25 min I felt bad/weak and finally left the room to go sit down and drink some water. I went back to rounds and rounds lasted 1hr 45 min and I had to sit down 3 times during them. I have no endurance.....c) my legs and feet are still aching and its been 7 days counting today. I don't really have nausea like some of you have, except one of the previous times before the weekend. My M.D. is leaving his practice and this week is on vacation. I was looking up Endos and found an article on Adrenal Crisis and I have almost everything except nausea/vomiting. My BP has been 120/70's (my pulse was 93 this morning) the couple of times I took it this week, which is actually a little higher than I run, even on Florinef. Its usually 115/80 or so. I know the body tries to compensate until it can't, maybe thats my BP higher and HR higher. Anyway, I found a new Internist to start with and have appt the first week of August. I called there yesterday to see if I can get in. They haven't called back. I thought of trying to get in to a local Endo by a chance someone may have a cancellation or take me serious enough to get me in. I don't want to be dramatic, but I know this can be serious if thats what it is. I also have hormone (or lack of) issues. I'm on thyroid already...........Do you think it sounds serious enough I need to get in somewhere quickly? The article was excellent, but kind of freaked me out when I saw about the legs and back as I never knew about that being a symptom. Anyone suggest anything??? Also, if anyone knows a good endo in the Midwest that will listen or likes to figure patients out I'd be up for that too. Thank you very much!!
....B) On Monday we were doing bedside rounds in the hospital (Im a nurse) and do a lot of standing still in the rooms. After about 25 min I felt bad/weak and finally left the room to go sit down and drink some water. I went back to rounds and rounds lasted 1hr 45 min and I had to sit down 3 times during them. I have no endurance.....c) my legs and feet are still aching and its been 7 days counting today. I don't really have nausea like some of you have, except one of the previous times before the weekend. My M.D. is leaving his practice and this week is on vacation. I was looking up Endos and found an article on Adrenal Crisis and I have almost everything except nausea/vomiting. My BP has been 120/70's (my pulse was 93 this morning) the couple of times I took it this week, which is actually a little higher than I run, even on Florinef. Its usually 115/80 or so. I know the body tries to compensate until it can't, maybe thats my BP higher and HR higher. Anyway, I found a new Internist to start with and have appt the first week of August. I called there yesterday to see if I can get in. They haven't called back. I thought of trying to get in to a local Endo by a chance someone may have a cancellation or take me serious enough to get me in. I don't want to be dramatic, but I know this can be serious if thats what it is. I also have hormone (or lack of) issues. I'm on thyroid already...........Do you think it sounds serious enough I need to get in somewhere quickly? The article was excellent, but kind of freaked me out when I saw about the legs and back as I never knew about that being a symptom. Anyone suggest anything??? Also, if anyone knows a good endo in the Midwest that will listen or likes to figure patients out I'd be up for that too. Thank you very much!!
As for going into crisis; you have some of the symptoms but the main ones I have always noticed before a crisis are; extreme fatigue, lightheadedness, nausea/vomitting and diarrhea. I would definitely follow up with a different endo and request an adrenal stim test. Also when you see your primary care doctor get a B12 blood test. Some of your symptoms can relate to low B12 levels. If your B12 levels are low, B12 shots are an easy fix and can make a huge difference.
Good luck in your health search.