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 don't know much about Addisons's desease. I'm waiting on my test results, but I have all the symptoms.
I have been through the ringer, you don't need to read this part if you get bored easily, you can just skip down to the next subject. I have been dealing with diarrhea off and on for at least 14 years now (that's since high school). But during all my pregnancies, it would go away and I would be completely normal. So after this happened I went to one doctor (no longer see him) and he told me "oh it sounds like IBS, just take immodium everyday" and I left feeling frusterated and angry with him since he wasn't willing to do any further testing. And of course I was young then and didn't go looking for another doctor. Even after having my second child, my hair started falling out like crazy, I was super tired and went to my OB and told her what was going on, so they tested my thyroid and sent me back to that doctor (again, because I didn't find a new one yet. They told me I needed to see an endo, so I went to the bad doctor to get a referral and he just said my numbers were high but not high enough to see a specialist, so again I left angry and still didn't get a new doctor. Then last year after having my last child my symptoms got alot worse, so I finally went to a new doctor and she sent me to an endo because my numbers came back really high for hyperthyroid. So I went to this endo and she looked at the test and agreed it was hyperthyroid, but then the next month of taking my test, she came in and said that I was hypo. I asked her how is that possible to have hypo and hyper thyroid symptoms and all she said was "yes, you do" I know, what an idoit. So then I got the flu and a sinus infection so I didn't go back to see her because I wanted to get over my illnesses before starting new medications and I didn't want to mix those with antibiotics because I was on those for a month, it was a severe sinus infection, I was even in the hospital for a day for fluids, it was bad. So during this time I was seeing my new gen doctor who ended up leaving and a new person came in and after I got better I had mentioned to her that I was going to be seeing an endo for my thyroid stuff, well she tells me not to and she could treat me for it. So I thought, ok maybe she knows alot about thyroids, well July of 11, this last July, I have gotten very sick everyday, not the contageous sick either. I have had severe diarrhea and abdominal pain everyday. So I brought it up to her and I told her I have never had it this bad. So she tested me for parasites-negative, then she ran an allergy test that I paid 300 bucks for and told me to go off gluten, yeast, and milk, and try to go off all these other things like fruits and vegies. So I did that for a month and went back telling her I wasn't getting any better, so we thought maybe it was crohns since it runs in my family. So she sent me to a GI specialist, He did a colonoscopy and an endoscopy and a small bowel series, he tested me for celiac and infections, ALL of it came back negative and normal, So I asked him, could all this be related to my thyroid and he told me yes. So I'm angry at my new gen doc because I found out through all this that she is more of a natural path than a doctor which is fine for some things, but she doesn't know about thyroids or serious deseases and how to treat them. She told me that my diarrhea has nothing to do with my thyroid, so behind her back I went back to the thyroid specialist and she now is testing my hormones, my adrenals, for addisons (because addisons desease can mimic other autoimmine deseases) she is testing my reverse T3 and rechecking all my thyroid levels and anti bodies because last year she diagnosed me with Hashimotos and didn't tell me, I found out from my natural path. But I went in and said it doesn't feel right. I don't have all the symptoms of Hashi's and my most dominant symptom is diarrhea. So now I am just waiting on my results, to see what comes up. But they seem to know exactly what they are doing and what they need to be looking for.
My question is this, what questions should I be asking if it is Addisons?
What should I expect to hear when I go in as far as treatment?
What have any of you experienced with the treatment?
This desease kind of scares me because of the possible complications I read about. So I'm not even sure what to expect. And I can't really trust my body right now, I have been reacting to meds that I shouldn't be reacting to, for example: I was pregnant alittle over a year ago and got a sinus infection and the Z-pack worked very nicely, then 4 months after having my baby I got another sinus infection (very rare for me I might add) and I had an allergic reaction to the Z-pack and couldn't take it. So I am very nervous about meds because ever since I have reacted to anything they have me try to help feel better. I don't even know what kind of meds they use to treat this and if they are safe. We are hoping to have at least one more baby probably within the next year, but now I am very hesitant on how that will be possible with my health issues coming up. I know I may be jumping the gun, but I am a planner and I want to know all the facts before I just jump into it.
Also, is there any symptoms I should be aware of that are not listed on the internet that deals with Addisons? So far I have all the syptoms I found on the mayo clinic website.
Thanks to anyone who listened and for the support.
I have been through the ringer, you don't need to read this part if you get bored easily, you can just skip down to the next subject. I have been dealing with diarrhea off and on for at least 14 years now (that's since high school). But during all my pregnancies, it would go away and I would be completely normal. So after this happened I went to one doctor (no longer see him) and he told me "oh it sounds like IBS, just take immodium everyday" and I left feeling frusterated and angry with him since he wasn't willing to do any further testing. And of course I was young then and didn't go looking for another doctor. Even after having my second child, my hair started falling out like crazy, I was super tired and went to my OB and told her what was going on, so they tested my thyroid and sent me back to that doctor (again, because I didn't find a new one yet. They told me I needed to see an endo, so I went to the bad doctor to get a referral and he just said my numbers were high but not high enough to see a specialist, so again I left angry and still didn't get a new doctor. Then last year after having my last child my symptoms got alot worse, so I finally went to a new doctor and she sent me to an endo because my numbers came back really high for hyperthyroid. So I went to this endo and she looked at the test and agreed it was hyperthyroid, but then the next month of taking my test, she came in and said that I was hypo. I asked her how is that possible to have hypo and hyper thyroid symptoms and all she said was "yes, you do" I know, what an idoit. So then I got the flu and a sinus infection so I didn't go back to see her because I wanted to get over my illnesses before starting new medications and I didn't want to mix those with antibiotics because I was on those for a month, it was a severe sinus infection, I was even in the hospital for a day for fluids, it was bad. So during this time I was seeing my new gen doctor who ended up leaving and a new person came in and after I got better I had mentioned to her that I was going to be seeing an endo for my thyroid stuff, well she tells me not to and she could treat me for it. So I thought, ok maybe she knows alot about thyroids, well July of 11, this last July, I have gotten very sick everyday, not the contageous sick either. I have had severe diarrhea and abdominal pain everyday. So I brought it up to her and I told her I have never had it this bad. So she tested me for parasites-negative, then she ran an allergy test that I paid 300 bucks for and told me to go off gluten, yeast, and milk, and try to go off all these other things like fruits and vegies. So I did that for a month and went back telling her I wasn't getting any better, so we thought maybe it was crohns since it runs in my family. So she sent me to a GI specialist, He did a colonoscopy and an endoscopy and a small bowel series, he tested me for celiac and infections, ALL of it came back negative and normal, So I asked him, could all this be related to my thyroid and he told me yes. So I'm angry at my new gen doc because I found out through all this that she is more of a natural path than a doctor which is fine for some things, but she doesn't know about thyroids or serious deseases and how to treat them. She told me that my diarrhea has nothing to do with my thyroid, so behind her back I went back to the thyroid specialist and she now is testing my hormones, my adrenals, for addisons (because addisons desease can mimic other autoimmine deseases) she is testing my reverse T3 and rechecking all my thyroid levels and anti bodies because last year she diagnosed me with Hashimotos and didn't tell me, I found out from my natural path. But I went in and said it doesn't feel right. I don't have all the symptoms of Hashi's and my most dominant symptom is diarrhea. So now I am just waiting on my results, to see what comes up. But they seem to know exactly what they are doing and what they need to be looking for.
My question is this, what questions should I be asking if it is Addisons?
What should I expect to hear when I go in as far as treatment?
What have any of you experienced with the treatment?
This desease kind of scares me because of the possible complications I read about. So I'm not even sure what to expect. And I can't really trust my body right now, I have been reacting to meds that I shouldn't be reacting to, for example: I was pregnant alittle over a year ago and got a sinus infection and the Z-pack worked very nicely, then 4 months after having my baby I got another sinus infection (very rare for me I might add) and I had an allergic reaction to the Z-pack and couldn't take it. So I am very nervous about meds because ever since I have reacted to anything they have me try to help feel better. I don't even know what kind of meds they use to treat this and if they are safe. We are hoping to have at least one more baby probably within the next year, but now I am very hesitant on how that will be possible with my health issues coming up. I know I may be jumping the gun, but I am a planner and I want to know all the facts before I just jump into it.
Also, is there any symptoms I should be aware of that are not listed on the internet that deals with Addisons? So far I have all the syptoms I found on the mayo clinic website.
Thanks to anyone who listened and for the support.
Once you are on the steroids you will get a quick feel for how much of dose you need. You will begin to be able to tell if you have a crisis coming on, i.e. a cold, too much stress, not enough rest, etc., And that is when you up your steroid use for a day or maybe a week depending on how sick you are. The fatigue is bad, but if you have caught it early you might be okay after starting on the steroids.
Keep gatorade or petilyte (boy did I spell that wrong, lol) in the house. It keeps your salts and stuff in balance, can keep you out of the hospital. I drink one almost every day.
I have had the diarrhea also, but mine was diagnosed as celiac by doing a DNA gene test by taking blood and send it off for the DNA test. With the diarrhea you really need the gatorade every day, maybe twice a day to keep your insides balanced. Lots of vitamins too. I was actually going into malnutrition before I got better. Diarrhea and Addison's can be dangerous together, so keep yourself hydrated. If you are nausea get your Dr. to give you some anti-nausea meds. I keep these two in my house all the time - Promethazine 25 mg, for lite nausea. Promethegan 25 mg suppositories for throwing up. Starts it right away.
You will adjust to the disease. It seems overwhelming at first but once you get the feel for the meds and start paying attention to how they are reacting with your body you will be fine. Everyone here on this website is really great at helping with your questions every time something comes up. Don't hesitate to write me message if you want any other information. Good luck, and get two doctors who can work together for you. That is the most important first stop you can take to getting better.
Lynn