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 was diagnosed with AD in 2/2012. I take 10mg of HC in the morning and 5mg around 3 pm. I do not take any other meds for AD. My doctor told me that this is a low dose of HC. As a result, I gained about 50 pounds, with dieting, in the two years of taking HC. The only symptom of AD that I was aware of having was being very tired. This feeling may have come from working too hard. My doctor gave me the ACTH test and it showed that my Adrenal hormones were a little low. Sometimes I wonder if I came back too soon after taking the ACTH test. Did I really wait 60 minutes before giving blood again? Well, my insurance changed and I had to change doctors.
I told my new doctor about my concerns and asked him if I could be retested. He said he would have to wean me off steroids over a period of time. He also caution me about the danger of being off steroids. He said he truly understands my concerns of whether or not I truly have AD. I said this way I would know for sure. I prayed and reduced my steroids to 5mg in the a.m. and 5mg in the p.m. Today is the first day of reducing the steroids. I don't want to get sick or die just to know whether I truly need HC, but I don't want to take HC and continue to get fat. I know it is much better to be fat and alive, than skinny and dead. But I do want to know for sure whether I am truly AD. What do you think about weaning yourself off steroids with your doctor's help? Do you know anyone or anything about weaning yourself off steroids? I would like to keep in touch with you all about the results (good or bad). Give me your opinion.
I told my new doctor about my concerns and asked him if I could be retested. He said he would have to wean me off steroids over a period of time. He also caution me about the danger of being off steroids. He said he truly understands my concerns of whether or not I truly have AD. I said this way I would know for sure. I prayed and reduced my steroids to 5mg in the a.m. and 5mg in the p.m. Today is the first day of reducing the steroids. I don't want to get sick or die just to know whether I truly need HC, but I don't want to take HC and continue to get fat. I know it is much better to be fat and alive, than skinny and dead. But I do want to know for sure whether I am truly AD. What do you think about weaning yourself off steroids with your doctor's help? Do you know anyone or anything about weaning yourself off steroids? I would like to keep in touch with you all about the results (good or bad). Give me your opinion.
Keep us posted on how your doing. Good luck.
Part of the reason I ask, is that I take Dexamethasone for cortisol replacement as HC does not work for me, and they had me stay on the Dexamethasone during the retest. If they were wrong in doing that, and there is a chance my results could be invalid and I could get off these steroids, I would love it! (Although I cannot even wake up without some Dexamethasone -- at all. I just sleep for up to 2 days. & when I do wake up, I cannot stay awake, so I am not sure how I would go about getting off it. One can dream, & I do dream of being hospitalized, and sleeping while they take me safely off this icky medication that has given me my energy back, but caused me to swell up so badly -- 60 lbs, with ugly, painful purple striae all over my body. I hate it.)
As for the weight gain, I initially gained 50 lbs because of steroids, and being dx with hypothyroidism. After going gluten free I lost 20 lbs. I was dx with celiac disease. I've lost another 15 lbs just keeping to a clean diet, all organic, low carbs, nothing processed. I also walk 4-5 days a week, 20-30 minutes a day. This is hard since I've been sick a lot the last 3 years and everything causes the Addison's to start up. But as soon as I have a good day I started walking again. I think you just have to be stubborn, and try to get through each day the best you can. I hope this helps you.message me if you like.
The re-test was first a blood test for cortisol. They did have me fast beforehand. They kept me on the Dexamethasone (last dose .5 mg 24 hrs before. Off my daily supplemental dose of 10 mg HC for 24.hrs). My cortisol wsd "undetectable". The 2nd part of the retest was another ACTH Stim test performed at the hospital, which I also fasted before. This time, my cortisol never rose above 5. I believe it started at 1.something, and rose to 3.7 with stim after 60 min. They said this confirmed SAI, hypopituitary.
I am working with a Nutritionist now, and trying a gluten free, dairy free diet. Glad to hear this helped your swelling! I will do anything. It is definitely worsened by the Dexamethasone but I cannot stay conscious without it (tried switching to HC mult times, & Pred makes me psychotic). Prsying to find anothee, better replacement option that works!
I would love to hear what you have done that has worked for you so I will mssg you. Thanks so much for your replies!
Would you be able to copy or link the information from the facebook group that relates to weaning off steroids? I'm not on Facebook, nor do I want to really join but I would love to have the information as I too am trying to figure things out if I really do have Addison's or not and am working with a new doc.
I really appreciate your help!