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Addison's Disease Message Board

Addison's Disease Board Index


My daughter is 23 years old and has been sick for a long time. Her case is very complicated . It started when she was 6 years old. In and out of the hospital because of abdominal pain nausea, and she just could not stay hydrated. For years there was never a diagnoses, they just treated her symptoms. It wasn't until she turned 20 years old, after her gallbladder operation. That when things really took a turn for the worst. First her blood pressure was very low, and her periods stopped. She had no strength and was weak. Finally she was sent to a endocrinolgist who took a cortisol test and ACTH stimulation test. Her cortisol level was less than one. Her DHEAS was less than 15. By the end of that day she was in the hospital in an adrenal crisis. They started her on a cortisone regimen. A few months later her ACTH started to drop. Now the question was it Primary or Secondary Addisons. The Drs searched for a pituitary source but could not find one. Yet they never took any scans of her adrenal glands. Does that sound right to you? Also now she is diagnosis with POSTs, which does explain her other symptoms that didn't improve with the cortisone. Right now she is in the hospital, because of adrenal crisis. She wasn't taken her cortisone right, In the past some of the DRs were saying her symptoms were from stress. Even some resisdent DR. told her he thought she was craving attention last year in the hospital during a crisis. That DR said her blood pressure would have been low if it was truly a adrenal crsis, but at that time they didn't know she had POTS. Her blood pressure and heart rate was going through the roof, but his words cut through her heart. Last week I had to call an ambulances to bring her to the hospital, they bought her to a different hospital than usual and it was a blessing in disguise. We met a very caring General Practice DR who listened and put all her symtoms together. After testing he confirmed it was POTS, but because she wasn't taken her meds right her body shut down. She was extremely dehydrated, her bladder stopped working and the Dr had to put a foley in her. Her heart was 160 at resting. Her potassium was very low. She now knows she could have lost her life and I hope it will be a new beginning. Sorry for this long post, its good to talk to people who understand. I was hoping you can answer some questions
1- Do you think she should have a workup of adrenal glands like scans?
2-Are potassium levels a problem in people who have Addisons disease?
3- Does anyone know endocrinolgist in NY?

I hope this all makes senses. Thank you for this forum.

I am 23 as well and have addisons disease. My potassium level was low when they ran tests on me but is good now. I am taking 2 1/2 pills of cortef (1 in morning, 1 at lunch, and a 1/2 at supper) and 1 pill of florinef in the morning. I remember I had to drink barium in a hospital and they watched it go threw me and see what happens inside. I actually was in 2 hospitals that didnt know what was wrong with me and I went to a hospital in the twin cities and they tested me for alot of stuff and finally found out by bringing in a endocrinologist who looked at scans and bloodwork. Some of them resident doctors dont know anything. They like to say the worst after a few of them I just ignored them and let them say what they want and leave. Well hope all goes well with her and she gets better soon.

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