How much hydrocortisone?

[pacaplace]

Okay!  My brain glands don't make much ACTH, as in, 0 to way below the entire normal range at all time of the day.  After having fired my Mayo endo doc and still being held hostage by his decisions and not being able to get a CRH Stim test to determine WHICH gland (Pituitary or Hypothalamus) isn't working, my PCP and I have decided to go the with the "shotgun approach" to treat my lack of ACTH production, since the treatments are the same no matter what.  YEAH!  Unfortunately, my PCP is really not up on this and precribed me 30 mg of hydorcortisone a day: 20 mg. in the morning and 10 in the afternoon.  Holy COW!  What a rush that dosage was.  I took that dosage for 3 days until I couldn't take it anymore.  I usually tolerate drugs really well and can usually get through the side effects until my body get used to the new drug, but this one really messed me up badly.  Anyway, I have cut back to 10 mg. in the morning and 5 mg. in the afternoon, just to be able to tolerate this stuff. I DID have adrenal function (not great but some) when given a shot of ACTH, so the right hydrocortisone dosgae should be just enough to give me enough steroids to make my adrenals work and not totally replace them. At least that's my thinking.  As far as I've been able to research, taking over 20-25 mg. of hydrocortisone will basically shut down my adrenals and I don't want to do that, since they are not dead yet, they just don't get any ACTH from my brain.

The question is:  How soon might I notice any improvement from this treatment?  Heck, I know it will take a long time since my pituitary and/or hypothalamus haven't been doing their job for many years.  Just curious to know how long it took any of you guys before you noticed any improvements.  I guess I want to know your experiences so I can kind of get an idea of when to up my dosage after "X" number of weeks or months if I don't feel any improvement of the usual symptoms of adrenal fatigue, ACTH defiency, etc.  Right now, all I notice is a lot of periodic, non-stinky sweating :)  It's like water is just pouring out of my head and chest.  This is new for me, so I'm blaming the hydrocortisone, but it's easy enough to tolerate.  My hs-CRP was high (6.9), so I know I have internal inflammation, so maybe that's going down?

[KimQ]

I split my daily HC into three doses, with the largest dose first and the smallest dose last.  I think most adrenal people I've been in contact with do it that way, though others I've talked to are happiest with two doses a day and some with more than three.  I guess they all played around with it to find what was best for them.

I'm concerned about the issues that Rumpled mentioned and am currently trying to lower my total daily dose to see how I feel.

Don't be discouraged.  It did take a few months for me to start feeling really good again, but I came around.  

[pacaplace]

Thanks, KimQ and Rumpled.

I KNOW my muscles are gone... At my first appointment with the Mayo's Director of Women's Health Center (She is great,BTW) she walked in, shook my hand and said "Hello, my god, you've lost all your muscle mass".  I'm med-tall and have a large skeletal frame (I look like a foot ballplayer.  All shoulders and no hips).  How she could tell was beyond me, but she was right.  My whole adventure into this morass of health issues began because I have joint pain and crushing fatigue, therefore stopping my physical activities and losing the muscle mass.  Right now, I'm looking for improvement in the fatigue and joint departments. Muscle aches and pains are noticable but not a big deal.  I LOVE hard, physical labor and activities, which pretty much petered out by 2006.

So, here's my path since then.  Had low Vitamin D (was "9". now "58").  One test for RA that was negative.  Had both hands carpal tunneled, and 4 lumbar disks had disintegrated, so the bone around the vertabrae and inside spinal column were chiseled and no fusion was needed because my vertabrae had fused themselves together for whatever reason.  Anyway, the joint pain and fatigue got worse, so I was told I had Fibro and then took all the usual drugs for 2 years and went through 3+ months of Pain Management with no results.  I quit all drugs except for my BP and pain meds.  Then my PCP and I decided it was time to see an Endo.

1st one: Even though ALL my numbers EXCEPT thyroid were below normal, this guy said I was going through menopause.  Well, duh!  I had a complete hysterectomy 8 years prior and he knew that.

2nd one: Did head MRI and found the Pituitary stuff- Empty Sella with bent "stalk." and the same below normal test results.  Then I had 2 ACTH Sim tests that I failed on all counts, yet he said I was fine.

Then I went off to the Mayo where no one thought I had Fibro (My PCP and I both knew I didn't have it, either): The Mayo Endo blamed my hormone test results on my Oxycontin use, so I quit that and after 6 months, my test results remained the same.  Had 3rd ACTH test and just "passed" so I am "fine", according to the Endo guy.  While this all was happening, I was being treated for low estrogen and testosterone by the Mayo Women's doc with Estradiol patches and Testosterone 1% cream.  It raised my estrogen levels but not my testosterone.  Then, I found out my birth mother's medical history and was taken off the sex hormones because breast cancer appears to run rampant in my family.  That *****, because I think the estradiol patches were helping some with the fatigue.

I know that the circadian rhythm plays a big part in all hormone homeostasis, so I have practiced all the "sleep hygiene" stuff faithfully, with regular sleep schedules, CPAP, etc, for 3 years so my sleep is good, but the hormones, apin, and fatigue aren't.  I have low I-GF-1, DHEA, testosterone, estrogen, ACTH, and Cortisol, and a high hs-CRP, but I'm not "allowed" to replace the sex hormones now because of the familial breast cancer issues.  So, I am going to have to try non-Rx stuff for the other hormones, I guess.

Now back to the hydrocortisone dosage (finally :)  The 30 mg split into 2 doses really nailed me badly, so I backed off to 15 mg for a bit and figured I'd work my way back up to 30 mg.  Looking at the "stats" on "normal" levels, it seems that the peak times are 8 am through 4 pm and "low" is during the night with ramping up starting around  6 am.  I'm thinking of taking 15 mg at 8 am, 10 mg at noon and 5 mg around 4 pm.  Since hydrocrotisone is an "instant" thing, does spreading it out in decreasing amounts during the day sound reasonable to you guys?  I'm really hoping that the hydro will help me with my inflammation and that, in turn, will help with the pain in my joints.  Thanks for all your input so far.  I'm good at scientific research, but that doesn't really apply to real life applications.

[rumpled]

Too much may also make the muscles, well, get damaged but that is long term - look up steroid myopathy. It is important that steroids IMHO be taken carefully. I say that as I come to AI from Cushing's, and my body is severely damaged from the steroids my own body produced. So now without adrenals now, I take what I must, but suffer still from the hidden damage from before.

30mg may give you the buzz - the Cushing's buzz. It may feel ok for a while for some (and get a lot of housework done!) however every body is different, and some will tolerate the steroids differently - some bodies hold up better.

[KimQ]

I started out on 30mg/day of HC.  It took me a few months to feel truly well again.  I figured that my muscles and stamina had gotten so run down while I was sick and not getting diagnosed that I had to build up again.  Plus, I had to address a zero Dhea level and some female hormone issues.  

[rumpled]

30mg total is  high. 20mg is a suppressive dose. Somewhere around 20 or so, give or take some is a normal dose for most - depending on if you have other things going on and need more, or just taking it for replacement, then you are on the lower end.

HC has a short half-life, so basically, once you take it, that is it. That is the treatment. Instant.

As for improvements, if you body has been beat up, it takes a while to start feeling a bit alive again.

As well, HC alone may not be it - you may need other hormones - florinef in particular, dhea if your androgens are off, salt to help the sweating, and fluids.