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Addison's Disease Message Board


Addison's Disease Board Index


Hello,

Well I am officially frustrated with my endo. This is the third time I have gone to him and we are getting no where. First time I did all the lab work up for him but was on 12.5 prednisone in the morning with 7.5 in the afternoon. He was telling me my adrenal glands shut down because of the steroid use and that all my lab work was not worth anything because I am on steroid. I explained I had an adrenal crisis after my gallbladder surgery and have gone downhill with my health since January especially with low blood pressures.

He told me to now only take 10 mg on prednisone a day and do the catecholomaines in the urine so we could see my cortisol levels. Well thats when he said it wasn't the aldosterone that was causing my BP to be low but the epineprine that was low which also controls the BPs and breathing. But unfortunately there isn't any type of pill to replace that. He then said he was real worried about my cortisol level. I was a 1.0 mcg and the referance range was 4.0-50.0.

He told me to wean off to 5 mg of prednisone and come back. Well I kept saying If I was low cortisol with 10mg well what did he expect with just 5mg? I had to call the nurse because I felt lifeless and she told me to go ahead and take 2.5 more of prednisone in the evening..

Well I survive the 30 days but I am lifeless. Well he could care less and was worried about a bone density test. I don't care about that at this moment. My cortisol levels are way low and I really feel like I am dying as crazy as that sounds. He did give me some hydrocortisone but didn't know how much to give me and told me some ridicuous amounts. I am on 7.5 of prednisone right now. He gave me 5 mg of hydrocortisone tablets and told me to take some and we would repeat the urine.

I don't know what to do. I feel so sick. I don't know if I should get off of the prednisone and do the hydro one or what. There is no other endo doctors here so I am lost.

So my 24 cortisol hr urine was 1.0 mcg and the reference range 4.0-50.0
The cort am was .3 and the am range is 7.0-25.0

I am just want to know your advice. I appreciate any input.

Thanks,
Lisa
[QUOTE=gettin' better;4319900]Lisa:
You desperately need a new doctor! You very life could depend on it. Even if there's no one in your area, try to find a university with a teaching hospital and call to see if they have any experience with Addison's Disease. It will be worth the drive to have you feeling better again. I have hypotpituitarism and take 20 mg of cortisone, 15 in the morning and 5 in the evening. That works fine for me, but everyone is different. Don't try weaning and chaning meds on your own. Get help as soon as you can! Good luck.[/QUOTE]

Thank you so much for your response :)

Its so crazy and I am sitting here in amazement where I feel like I lost 3 months banking on this DR. I feel like I am back at square one. I am researching somewhere maybe in San Antonio or Houston TX area. If anyone knows of some DR in those areas, can you please respond to this post? Your right, it is worth the 2 to 4 hr drive. I need help. I guess till then, I will keep taking the 7.5 of prednisone. I was on 20 mg of it before I saw this DR, but at that dose I was having the " adrenal crisis"..So what to do, what to do :dizzy:

You have a great day!

Lisa
Thank you so much for your response. The last month has been pure hell, and I am still taking my prednisone and my pressures are just going lower and I have no energy at all. BUT, there is a new doctor in town (can ya'll tell Im from TX ;) ) and I set up an appt with her for next Friday. My cardiologist says she is good and actually has empathy and will listen to her patients, so however you guys pray, please say a prayer for me. I love this board. It has helped me out alot and I do not feel alone :)

Lisa
Hi Missy,
You mentioned that you had an adrenal crisis after surgery. That's really not that uncommon. However, do you have addisons disease or are you being treated because your adrenals aren't doing their thing because of the steriod treatment from the adrenal crisis. These are two very different conditions. If you don't have addisons, then yes, wean off the steriods. That'll allow your adrenals to come back on line. And yes, you will feel a bit crappy but you've got to stay active and positive. If you do have addisons a typical therapuetic dose is 25mg of hydrocort/cortef. Prednisone is a cumulative dose drug and normally isn't taken in multiple doses, but 20mg is typical.
Hi Pacerpilot,

I just wanted to say I went to my endo and she started weaning me off of the prednisone in Oct. She started weaning me off by 1mg every 2 weeks and this Tuesday I will be down to 1mg in the morning. She is a great endo. Does my ACTH levels monthly and now biweekly. The last she checked my ACTH was 3.9, so my pituatary gland is kicking in. I really feel crappy. My pressures are low (she still has me on the fludrocortisone) and I feel exhausted and this week was a new symptom. I feel like I am gonna pass out. So I see her Tuesday :) I can't wait to see what my ACTH is this Friday. She said she can more less see if I need help or maybe be able to do this when the pit gland wakes up. Thanks for your support and posts on here :D

Also my thyroid is way off so she adjusted the synthroid on that. My vitamin D levels are real low and has me on a supplement for that also. That was weird since I live in the sun.....

Thanks to everyone who has responded to my posts. This is a great board :)



[QUOTE=pacerpilot;4610047]Hi Missy,
You mentioned that you had an adrenal crisis after surgery. That's really not that uncommon. However, do you have addisons disease or are you being treated because your adrenals aren't doing their thing because of the steriod treatment from the adrenal crisis. These are two very different conditions. If you don't have addisons, then yes, wean off the steriods. That'll allow your adrenals to come back on line. And yes, you will feel a bit crappy but you've got to stay active and positive. If you do have addisons a typical therapuetic dose is 25mg of hydrocort/cortef. Prednisone is a cumulative dose drug and normally isn't taken in multiple doses, but 20mg is typical.[/QUOTE]





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