What time exactly were the tests done? Did they do sodium and potassium testing as well?
I would go find a doctor who DOES know what they are doing - 10mg is generally too low a replacement dose. One does 15mg on up - and you take the bulk in the morning with a small amount in the late afternoon (this is a guideline).
The doctor should not put you on hydrocortisone replacement dose without doing the proper testing - such as a stimulation test and the adrenal antibody test. You kinda want to know if you are primary (adrenal) or secondary (pituitary) to know if other issues may arise. ACTH can help determine that but the test is often not done correctly - for instance, the labs rarely use a chilled tube and the tech may put it in a bin and not the centrifuge immediately in which case the result is low just from lab handling and what your *real* level is - anyone's guess.
HC has a very short half life - which is a good thing as the side effects long term are then minimal (unless doses are too high) and testing can be done after a couple of days.
For a chronic disease such as this - you should have regular appointments. You would need regular refills - as well as an emergency kit (IM needle, solu-cortef acto-vial, etc) and a medic alert bracelet or the like - this is a serious illness with life-threatening implications so your doctor does not have the skills you need. Get copies of your records and find a good doctor.
Not sure if I made it clear that I have no diagnosis yet, only the cortisol tests and a prescription for hydrocortisone. I feel like I know nothing.
I am crabby and having abdominal pain, fogginess, and craving for salt and sugar. It's 1am and I'm tired, but grinding my teeth. I kind of wish I could take more hydrocortisone, because the pain always starts two hours after the last helped.
Are you sure your levels are not 5 mcg/dl? That is a low score. You wrote 0.5.
I did write 0.5, that's what AM and PM both came back as on 5/14. That was on 5mg of Prednisone from 5/1-5/7, so they redid the cortisol test after 9 days on hydrocortisone and 1 day off of it, just in case.
That second 8am serum cortisol test (5/31) came back at 2.7mcg, and I got to go back on the hydrocortisone after doing the test. (I thought I was going to die the night before after a few hours without the cortisone, that's why I went to urgent care.)
I have an appointment with my GP tomorrow but he doesn't know yet the endocrinologist canceled my appointment. GP already said he doesn't know what to do, so I guess tomorrow is about hoping there's another specialist in the area, or that someone else will help?
I've been feeling pretty sick. This lucid-ish moment brought to you by my 8am dose of hydrocortisone. Thank you!
Er, I was on 5mg Prednisone for a respiratory thing for a week, then off it for a week, then cortisol test #1, then 9 days of hydrocortisone, 1 day without, and then cortisol test #2. Then endo saying to just stay on hydrocortisone but not come back.
Sorry, hard time organizing those thoughts.
The first tests (May 14) were done at 8am and 3pm, (0.5mcg both). The second (June 1) was just an AM and done around 8:30am, (2.7mcg). I've had lots of CBCs, my sodium and potassium are fine. My GP said he has no idea why they are so normal. (I can come back with specific levels/results later. The only other weird things were albumin/globulin ratios and eosinophil-something-something.)
Tomorrow I am going to ask my GP for another endocrinologist referral, I just hope I don't have to wait too long, because my life has been getting pretty hard to... live.
I've also had high and low temps, too slow/too fast GI problems, and oh god I'm like an idiot now. I guess I'll report back tomorrow with what GP says about other endos. Thanks for the input.
A few points:
1. Follow Rumpled's advice, she helped me and she knows more on this matter than the rest of us combined. Her point on identifying just what type of issue you have: primary or secondary, is very important to establish.
2. You mention you had cortisol tests at 0830 and 300pm. It is better to have the second test closer to 6pm.
3. To get a more accurate reading you must be off the hydrocortisone for 2 days not one as you mention you did. And then do the AM and PM tests.
4. If your GP cannot refer you to an endo who knows what he is doing, then ask that GP to refer you to someone else, even if he/she is not convenient for you to get to. Many GP's have relationships with specialists in their area (the relationships may be either professional or personal). You however need ANSWERS to an intricate matter which means you will HAPPILY travel to see someone who knows the issue.
5. By the way, are you in Australia or the United Kingdom?
6. Are you drinking plenty of fluids? Easing off carbs and mostly eating protein?
Thank you. I will work on this stuff.
The testing is a little difficult only because I'm limited to the lab's hours, so far as I know. I'm hoping/assuming that if I find a competent endo, this will be somehow more feasible.
Off the hydrocortisone for 2 days? Oh geez. Is there some kind of thing I'm supposed to do to.. feel like I'm going to be okay through that time? It was about 4 hours after the last dose before I knew something was pretty wrong. (BP, evidently?)
At the moment, I'm sort of learning to manage my symptoms for the 2 hours that I hate in between the 4-hour-spaced doses.. Again I'm hoping an actual doctor will answer these questions, when I get to see one.
I didn't get the impression that my GP has relationships with any endos in particular. He referred me to the guy who's supposed to be fanciest in the hospital-group of which he is a part. I've made a list of the other people my insurance says they cover, I'm hoping to figure out which is a decent one, and hopefully get an appointment soon..
Australia or the UK? USA, state of New Mexico.
I've *definitely* been drinking plenty of fluids. I hope I'm not drinking too many, I seem to be peeing constantly. I have not heard before about easing off of carbs or onto protein, I'll have to look it up later when I can read better.
Normally I'm pretty on top of my health stuff, but spending so much of my time so out-of-it and weak has really thrown me. I don't have this at ALL, and that endo dropped me like a hot potato for some reason I guess I shouldn't bother to figure out.
Thanks again. I'll write some of this down for GP tomorrow.
Oh, and of course I'll happily travel anywhere the insurance-taxi-thing is willing to take me. I think they do anything within the state, but I'm not sure. I'll have to find out. I'm not worried about the convenience of someone close or anything, I just need to make sure I can find someone who accepts my insurance..
I would do testing only off HC for a minimum of 24 hours... the more you can push it is better.
If you feel the urge to drink and then pee and then feel like you still need to drink - that can signal a pituitary issue - a water diabetes called diabetes insipidus - so I would see either an endo if you can find someone intelligent, or sometimes a kidney doc can make that call and get you on DDAVP.
I know I have waited to get into the *extra good doctor* only to find out that they were clueless - but named a top doc in a magazine. One patted me and told me I was absolutely fine - needed no endo, no thyroid meds (half my thyroid was gone at the time, I was hypothyroid, had hashimoto's and two more nodules, but needed nothing???) and even *supposed* pituitary issues were just in my head... I was furious. I ended up traveling to California!
Wow, a minimum of 24 hours? The endo's notes (seen on GP's screen) said that the stim test wasn't necessary, and he doubts he could get me to stop taking HC for "at least a month" in order to do it.
I saw my GP today. Endo's notes said adrenal insufficiency, stay on hydrocortisone, but that's all. Notes said that the remaining problems with headaches and abdominal pain are being caused by something else, and 3x/day HC should have me 100% normal if it was indeed the endo's concern. So by continuing to have symptoms while on HC, it left his jurisdiction?
I got a new referral and made an appointment with another endo, about a month from now. I'm on the cancellation list, so maybe that..
People keep mentioning travelling and making sure I get a good doctor, but I'm not sure if those options are available to me. I am on Medicaid, Supplemental Security Income, and I take the medi-taxi to my appointments, if that clarifies anything.
My GP said it sounded like my blood sugar might be doing crazy stuff, so he prescribed a blood glucose meter. I haven't picked it up yet, but I guess I'll start Googling what to DO with the thing..