My addisons history for chris - Addison's Disease Message Board

Need informatio · 02-02-2005, 06:20 AM

Chris,
Here is a short summary of my history with Addisons.
about 3 years ago I had a addisons crisis, twice, before they figured out what was wrong with me. I went on steroids for a couple of years, did the massive wait gain, had the facial hair, the moon face and all and gained like 30 pounds. Finally leveled off but really didn't loose the wait and became more stable with corisol levels. Then about a year ago I blew up like a ballon out of he blue. All of a sudden I felt like I had taken tons of steroid again but I had not uped my dosage, high blood pressure, heart palpatations, red faced, hot flashes ect. Got tested for lupus, cushings, and nothing so he started taking me slowly off the steroid and it began to help. Went and got ACTH test and it showed my adrenals were begining to function again. Finally went off the steroid and all was Ok for about 6 months then came down with phenmonia (sP) was in the hospital for 3 months and adrenals quit again. Got out, was on 5 mg. cortef and then taped off. Last test in November showed low cortisol levels, low testosteron levels, and low t-3 and hight t-4 (if i remember correctly) any way they said I was hypo. Felt ok untill about a month ago and all went to pot. Moon face again, weight gain, hair stuff, tired, ect. Went on Armour, have been on it for 2 weeks and still feel horrible. But symptoms began before I went on medication. I am seeing an enchronologist but he is total medicatin freak so I have also been seeing a more homopathic dr. I have no idea which way to go or what test to do. My body is so messed up and I just don't know what to do. I go in today to do more blood work any suggestions? that is the story and where I'm at.
Thanks

Need informatio · 02-02-2005, 08:19 AM

I told you my body is so screwed up it doesn't know which way to go. Thanks for the help. It might help you to let you know I'm HIV as well. Sorry didn't really want to say. Things are under control in that area though. Have been for 16 years. Just a little note on myself: I've had several things happen to me (with my body) that I should have died from and have recovered from. The doctors don't have any explination and have no answers for me. I have responded really well to unconventional methods of healing. I just call myself blessed. Thanks for your help

sadie-mae · 02-02-2005, 12:08 PM

Hi!

You really sound like you have something called Cyclical Cushing's disease. It is thought the cyclical patients are in earlier stages of the disease and only episodically release excess cortisol. But some people stay cyclical forever.

I would recommend that you Google "Cushing's disease" and look at some of the support groups that come up...there are two or three that are really amazing and very informative. Read up...my guess is you will see yourself in the stories. The number one piece of advice I will give you is DO NOT GIVE UP if the initial docs you see don't help you...they just aren't really educated about this in school. That is why the best solution is to cut to the chase and travel (if necessary) to see the best person you can find. There are lists of doctors people have had good luck with on the support sights. Stick with either a large pituitary center or someone whose subspecialty is truly just pituitary diseases (they are few and far between). See who the boards recommend (by name).

Good Luck to you,
Sadie

Need informatio · 02-03-2005, 10:37 PM

Chris, gosh thanks everyone for all the info. I went today to have my blood work done. I had them check me for cushing as well as testing out my thyroid again. I had an antibody test on my thyroid in January and it came back ok. I live in Houston and have a really good enchronlogist at the Medical Center. He is one of the best. I am seeing him next Thursday. What confuses me though is how they can say I have addisons for 2 years and put me on steroids and then all of a sudden I have cushings? Is that even possible. Has anyone ever heard of going from one extreme to the other? I am doing alot of holistic things and I seem to repsond really well to that but I am also seeing my specialist at the Mecdical Center as well. I have several issues and all of them come with their own doctor. I definaly believe in modern medicine but I also believe in never giving up and finiding unconventional medical ways makes me feel like at least I am still in the fight. Thanks so much for all the support. I will definatly keep you updated when my blood work comes back. I will go and check out cushings web sites and read up on that. I just hope they can do something for me. I feel like sometimes I am totally going crazy. If anyone has any adivse I would love to hear from you. I'll keep everyone posted
Thanks for your support.

Need informatio · 02-03-2005, 10:56 PM

chris, Well, once again they can write me up in the medical jounals of the unexplainable. God, would I love just a normal illness to happen to me. I always get things no one can explain, anyway I'll keep you posted thanks again.