What is going on here?

[Tony2727]

51 yr old male. Diagnosed with SAI 2 years ago. Result of a previous tumor on my pituitary gland from 15 years ago (empty sella) that first affected my GH and Test. levels (low). Developed osteoporosis and multiple spinal fractures. Paralyzed off and on for 7 years. I was told at the time that there woud come a point when my ACTH would be affected and that would be when the really bad stuff would begin. Little did I know! Anyway, have tried HC three different times, but my cortisol levels are not affected at all no matter how much HC I take. 3 separate Stim tests confirmed it to be between "miniscule" to 1.5 (supposed to be >18). Can't tolerate prednisone. For 18 months my endo (excellent by the way) kept me on .25 Dexamethasone. The idea was to give me a dosage that would keep me alive, but not allow me to function. The hope was that my pituitary would recognize the "crisis" and start producing ACTH. Didn't work. Now I am at .75mg, but that isn't enough. Just like the HC, for some reason my body is not absorbing my meds like it should. I read about people who take their steroid dose and wait for it to "kick in" before they start their day. I have never, ever felt them 'kicking in."  Weight gain, sweats (mostly daytime with minimal efffort), cognitive fog, muscle pain, joint pain, stomach and intestinal problems, depression, etc. I was a pastor, but now I can't get out of the house much and sermon prep is a waste of time and effort. I want my life back, but I am not sure that is going to happen. Sorry to be so long.

[rumpled]

I use natrol - I can get it on sale or on line pretty cheap. One site has 2 bottles of 180 for $18.25, another 300 tabs for $22.99 - so shop around just get a decent brand.

You could probably still call the bone endo - I know my friend with FD calls them and they are helpful - there are studies as well and it may help.

I don't know the name of the med - just that it exists LOL... although it does seem at times I am a walking PDR...

I just try - people helped me so just paying it forward!

[Tony2727]

what kind of dhea do you use? Where do you get it? How much does it cost?  There are some meds I am supposed to take but cannot afford. So maybe its a moot point. But I sure would like an improved sense of well being.
No bone endo anywhere close. Will ask my endo about the IV biphosphonate when she comes back from maternity leave. What is the name of the one you referred to earlier? Side effects?

BTW, thanks for your help and encouragement. You are a blessing from God and I thank you so much!!

[rumpled]

Re bone endo - look for docs that write papers on hyper or hypo-parathyroidism, paget's disease, fibrous dysplasia, etc - I know they are in NIH, west coast and NY - there are studies you may be able to get in for treatment... or at least talk to them.

Uh sounds like you tried them - spine I think is a bear... I take replacement hormones - so far (knock on wood) growth hormone restored my bone density pretty well. I have a friend with FD - so that is how I learned about some of this. There are nasty side effects.

DHEA is over the counter. If you google pubmed and AI and dhea  you can find papers -
here is one http://www.ncbi.nlm.nih.gov/pubmed/18000094
I take 25mgs (10-50mgs is the range, 25mg being average - your doc should test your dhea sulfate levels) but it will convert to estrogen and or testosterone. With your T issues, not sure this is an option for you without a doc consent - but I was told to take after adrenal removal as some studies find it helps us for well being and other things.

[Tony2727]

No on the bone endo - never heard of it, but will check and see.

I will ask my endo at next visit about the Vit D. I do get out in the sun about 1 hour a day.

IV bioiphosphanates? Part of my treatment when my bone issues were the worst was 3 days of IV Pamidronate every 3 months at Emory U. in Atlanta. Bone density in my hip returned to normal, but by spine is a different matter. Really they can't tell what it is due to scar tissue! PCP has mentioned trying the IV bioph (can't remember the name) but I am concerned about side effects. I just don't do meds very well. Which one do you take? Any problems?

No DNA testing for coumadin. INR checked every 2 weeks. Try to stay around 2.5. OK so far.

What about DHEA? What is it? How does it help? Side effects? What kind and where to find it.

Thanks!

[rumpled]

Mass went away = apoplexy? You do have a lot going on.
Have you consulted a bone endo? There are not many - but maybe that might help...
Alas, from what I know, replacement dosage is not something that can really be tested - as the tests are not perfect. So it really has to be somewhat how you feel and weight gain.
If your BP is ok, then florinef not needed (mine is low, I need extra) but DHEA helps mood etc - but it converts to T and E so that may be an issue for you - it is a precursor androgen.
Only 2000iu of D? I take 5k of D3... I have a PTH issue and my bones are much less beat up with the GH and estrogen issues. Those meds can make you brittle - ask about the IV biophosphates - once a year and no stomach issue just have to watch the jaw and other things.

Did you do DNA testing to know dosing of coumadin? Just curious...

[Tony2727]

empty sella due to an mass on pit. that went away but damaged the sella. Pit. is 1/8" thick and flattened against the back wall. Found this out after 5 unsuccessful spinal fusions. Panhypopituitarism. Low GH and low T had caused osteoporosis. Fusions would not fuse. 7 years in bed (1994-2001) with on and off paralysis. At the time, other pit. hormones were normal.
2009 diagnosed with SAI after 3 separate stim tests. Cortisol between .6 and 1.5 (supposed to be >18). Tried HC 15mg am, 10mg lunch, 5 mg afternoon. No improvement at all. Upped dosage to 20/20/10, still no change. Bloodtests showed that after 2 hours of taking HC, cortisol still 1.0. Body not absorbing HC at all. Went into crises for 4 months. Lost 60 pounds. Almost died 3 times. Low BP and Blood sugar. Couldn't get out of bed. Can't take pred. Switched to Dex (.25) at first. Very little change. Upped to .5mg and noticed a little improvement. Now .75 and a little better. Endo thinks that my body is not absorbing meds properly. Need higher doses of all my meds than are usually required. So, how do you know what the replacement dosage should be? Standard dosages do not apply in my case. Even at .75 my bp is excellent 120/78 and blood sugar is as well.

Weight gain due to 28 spinal injections last fall to help repair damaged nerves in my spine from so much inactivity and bed rest. Gained 40 pounds. When I am just on Dex, I tend to lose weight.

Depression has been an issue since my 7 years in bed and the accompanying chronic pain. SAI certainly doesn't help.

Sweats were due to chronic prostatitis that had flared up. Much better the last couple of days.

I take 2000 iu Vit D and 1200 calcium daily for bones. Can't take any of the osteo meds (stomach). Ride recumbent bike 3-5 miles day. Get out in the sun as much as I can. Begun light weight and resistance exercises to further help my bones.

My previous endo was at Pit Ctr @ Vanderbilt. Dr. UTZ. She is top notch, but I live 125 miles away and cannot afford to drive that far any more. Now have a new endo 15 minutes away. She is awesome. Knows her stuff. First blo0dwork she did was 2 months ago. T was a little low, GH was very low, ACTH was really low, Prolactin levels were high (never high before). Liver enzymes were also high.  Also, IGF1 levels were really high (over 500). 5 of last 6 times it has been checked it was high. MRI of pit showed no tumor. I have to wait a few weeks until my endo comes back from maternty leave to see what we do now.

Don't take florinef or salt. Asked about DHEA but did not get a positive response.

BTW, also have Stage saroidosis in lungs and several enlarged lymph nodes that my PCP keeps a close eye on. One thing I have wondered -- I didn't develop SAI until after I nearly died in early 2009 from 25 bood clots in my lungs. Doctors have no idea where the clots came from. On Coumadin (7.5mgXday) for the rest of my life. It seems to screw up meds more than anything. Can't do T replacement because of prostate problems and history of PEs.

[rumpled]

Wow... Did you have pituitary surgery? Or was it empty sella - after apoplexy or something?

At .75 dex, it sounds like your doc has pushed you into steroid induced Cushing's - hence the weight gain, depression, sweats etc.

HC is most like what the body makes - and has a very short half life... how were you taking it? How much? Pred and dex have long half lifes - so doses tend to stack - and that can aggravate your bone issues.

Is your endo a neuro-endo? Are you at a pituitary center? Do you take florinef, dhea, salt? How about other replacements? Other testing?  I am also SAI and panhypopit.