Endocrinology appt

[Equinney]

Had my first endocrinologist appointment Thursday. After 17 vials of blood I have to wait until April 2nd for any result. They did the ACTH injection to see if my adrenals are functioning.

[COwithAMN Administrator AMN EASIER Volunteer]

These are all the normal tests relating to AMN, so everything is normal there. Keep us posted on the results and stay positive.

[Equinney]

All tests came back normal except for my adrenal. They did diagnose me as having Addisons. Hydrocortisone morning and evening.

[StevenSims in reply to Equinney]

Hi, sorry to hear your diagnosis but the body naturally doesn't make the steroids after 6pm! I take my last dose at 4pm

All the best

[SongStream in reply to StevenSims]

Yes, taking your dose later in the evening might cause sleep disturbances.

[Equinney in reply to SongStream]

8 am and 4 pm is what is prescribed on the bottle.

[StevenSims in reply to Equinney]

Take it as soon as you wake! 1 thing I want to tell you is that they say to double up if you feel ill but sometimes this is not enough, I take 3 times or 4 times the dose if I feel really bad! This is ok for a couple of days as your body naturally makes more for stress or illness! I've been living with it since 2002

All the best

[Aaron98 in reply to Equinney]

I'm sorry to hear that you have Addison's Disease in addition to AMN. Unfortunately, most of us males do get adrenal insufficiency, though a few lucky ones avoid it, somehow!

One thing I've learned over my years of being on corticosteroids - you need to be able to fine tune your own dose, with the support of your doctor. Two doses of steroids a day may not be enough for you, and many find that they need three or even four doses a day (HC is metabolized differently by everyone, and for some, it only remains in the system for four or five hours). I take 20 mg of HC total daily, split up into 7.5 mg at 7 am, 5 mg at 11 am, 5 mg at 3 pm, and 2.5 mg at 7 pm. This is an attempt to replicate the body's natural circadian rhythm. What dosage were you prescribed?

It's also important to make sure your endocrinologist prescribes you fludrocortisone, as well. If you have primary adrenal insufficiency, which it sounds like you do, your adrenal glands won't be able to produce aldosterone, either, which is a hormone that regulates blood pressure, electrolytes, and metabolism. I take 0.2 mg every day. Again, it needs to be fine tuned to your own body. I feel significantly better on 0.2 mg than I did on 0.1 mg. When I was on the lower dosage, I struggled a lot with frequent lightheadedness. Please contact your endo about a prescription for fludrocortisone. I can almost guarantee it will make you feel better.

Please let us know if you have any other questions. We would be happy to help. Whereabouts are you located?

[Equinney in reply to Aaron98]

Nashville, Arkansas. It’s a town of about 5,000

[Equinney in reply to Aaron98]

I was prescribed 10mg at 8am and 5 mg at 4pm. His nurse told me to call in each week to let them know how it is doing. I’m guessing to change dosing if needed. So far so good, but only a few days into it.

[Equinney]

It seems as there were some inconsistency in my lab results from first cosyntropin test. So back at endocrinology running it again this morning. So now waiting game again to see what the results hold.