We need to know which test she is doing to test your cortisol levels. let us know which test if you know.

I've never seen 5 months to wean just 5 mgs, and not for a test. Makes me curious what she is doing.

My endo will be doing the ACTH Stimulation test . I have had discussions , diagreements and questioned her on why she needs to wean me for 5 months. She said I will have all the Addison symptoms if I wean too fast. This doesn't make sense to me that' s why I am posting .
Has anyone ever weaned before to get retested and what were the parameters?
I feel so uncomfortable not having coinfidence in my endo.
I have been trying to get an appointment and third opinion at Stanford to no avail. They keep saying my paperwork isn't all together , but it is.

Well I couldn't remember how long you needed to be off the steroids for the test, my memory was like two weeks. So I looked at 4 web sites. The last site said you only need to be off certain MEDS for 24 hours for the test. And you need to be fasting for at least 8 hours. Wikipedia and the NIH were good sites. Healthline had the 24 hour about meds, there was a list.

From all I've read, here, medical sites, etc. you usually Titrate down about 2.5 mg every 5 days or so. I don't understand her putting you through 5 months on such a low dose. It sounds like she is trying to prove something to you. I agree that you need a new doctor. Are you doing o.k. On 20 mg a day?

I'm just doing ok on 20 mgs. It has taken me 6 months to not feel like garbage. I still don't feel like the old me before Addison's .
On 20 mgs. I have trouble falling asleep. I need to take a sleeping pill every night.
My endo wants me to ONLY BE ON 15 MGS. PERMANENTLY!!! She claims that is the , " replacement dose," and that anymore than 15 mgs., long term, will cause problems with my body such as diabetes and brooken bones."
I felt like garbage on the 15 mgs.
I really want this ACTH stimulation test to be done correctly because I am weaning off much needed Klonopin. I need it because the Addison's and steroids are making me very anxious. I have been weaning off Klonopin since April ; 3 months, and it will take me until October to be completely weaned . I don't want to be weaning to take a retest that was given incorrectly.
So, thank you , Lynn, for your research on weaning steroids . Now I'm completely stumped and confused. She said I need to be off them just for one missed dose. That doesn't give my body much time to start making cortisol on it's own if it can.
I am so confused and frustrated!

The ACTH stim test is an injection that is given. Your first blood draw is with no injection. Then you get the injection and what should happen is it will make your body make cortisol if it can. You two shots and then two more blood draws at either a half hour or an hour after the shot. Your cortisol should have doubled by the last injection.

Your endo is going by the book, not how you are actually feeling or doing. I've been with my 18 years, we make the dose what it needs to be in order for me to have some quality of life, or to stay out of the hospital. Most women take 25-30 mg a day. 15 mg is a teen dose from what I understand. Men get up to 50 mg a day if they need it. I believe those are the guidelines.

I also have trouble sleeping most nights even though I'm very fatigued. I also take a Klonopin at bedtime. There are problems from long term steroid use. That's why my endo wants me at 30 or less a day. I do have osteoporosis but it is from two causes, forced menopause with no HRT, and 18 years of steroids. It was the combo that caused that.

Good luck on your test. I would really push to have it moved way up or stay on the 20 mg until the last few weeks.

If you look for the post from Latrece on 4/20 it's called "Weaning myself off steroids.

She was going to be retested too. She has three different posts going on how she's doing. That might help reading her story.

Lynn,

What would you have pushed way up? The steroid dosage level or my testing date?

What is your dose of Klonopin? I was on 4 mgs. I have weaned down to 1 mg. It hasn't been easy. I was on 4 mgs, when I was tested. I think the tricky part is going to be weaning off the last pill.

I would push up the test date. I'm on 2 mg of Klonopin a day if I need it. I don't always take the full dose, but do use it for the anxiety. I'm guessing that it is a hard med to wean off. Did she say why you have to come off of it? Addison's causes anxiety. It's just part of the disease. I sometimes take Benadryl too. I got that from an ICU doctor.

Lynn,

She never said I had to go off the Klonopin. I did develop sleep apnea from it and was on my way to getting a sleep mask. I'm sorry I can't remember the name of the sleep machine. That is what started the get off Klonopin train. It made me extremely tired so I did a sleep study test and it showed sleep apnea. I went from 4.0 mgs. Of Klonopin to 2.5 and my sleep apnea went from moderate to mild in a re-test. So, I did some research and it showed case studies that Klonopin could stop the production of cortisol.

That's the first I heard of Klonopin suppressing your cortisol. I would try to get a different drug for the anxiety if your endo thinks it will help. I haven't made any cortisol in at least 10+ years, but I'm going to ask if it effects the steroids. I've never gotten over the fatigue after 18 years. I did work the first 14 years then just had to many illnesses to work.

Do you have a link about the Klonopin? Thanks a lot for telling us that.