New endo lied to me about my test results, urologist can't help me

Hi-

I went back to the new endo and she told me all the results from my tests were fine, which was disappointing because I still hope for them to treat some of the obvious physical symptoms, like hyperpigmentation, low temp and other stuff.  I felt sort of weird about it because I do so much better on lupus and I clearly meet the criteria for polyendo def and have for years.  My other endo was more agressive about my situation.  Anyway, she told me that I have to be really careful on pred because with my labs and stuff I would definitely be prone to pred diabetes and my dose of metformin would not be enough.  I explained to her that with my recent development this year of the unexplained bladder symptoms that improved during my ACTH stim test when they gave me the shot, that without steroids, I couldn't urinate properly.  She said it was AI disease.

So now I get my labs and they are clearly abnormal, my blood cortisol was high and my urine cortisol was low, and my urine output for twenty four hours was only 600 ml, which if you know what a 100 ml syringe looks like, only six of them.  So maybe my blood cortisol is high because I can't clear it by urinating?  Sounds like a possibility.

Anyway, I go to the urologist and he feels its clearly an endo problem and possibly ai problem because there was clearly irritation that was not caused by infection.  He said there was no way I should only be going 600ml a day and gave me some more detrol and said to come back in a month and talk to the rheumy.  I think he is right, because there is no clear explanation why I can't produce urine and go properly and it improves with steroids, so that kind of explains it.

So I called the rheumie and pleaded for another 20mg taper which, probably due to the holidays, he finally agreed to give me.  After all these docs and copays, I still have no idea why I can't urinate, no one has ordered any more tests to find out why, and the endo won't do any tests to check my other hormone levels, which they are supposed to do, to see if there are problems there. 

Not being able to urinate is really affecting my sugar.  I'm really having trouble keeping it stable.  I'm disappointed with the endo, I expected more from her and I think my other docs did as well.  But she goes strictly by bloodwork and not at all by symptoms, even obvious physical ones.  I feel like I'm working up to being really sick from the urine problem because its starting to affect my bloodwork I think.  My cortisol is always low.  I'm eating beets and melons thanks to the tips here and maybe that will help.  I'm just depressed and almost scared to start the pred, but will feel better I know, esp. if it helps me go, but the endo really scared me. 

Well, at least I'll have a glimpse of my normal self during the holidays and hopefully have energy for turkey day to spend with family. 

Thanks, hippimom,
I haven't started it yet because I've not been feeling very well and my sugar's been all over, and I just want to get it steady before I start it. Besides, I might as well time it near thanksgiving anyway so I don't feel like a wet rag on that day. The doctors just don't understand how hard it is for patients to see glimpses of their former selves from time to time and not be able to sustain it. And how much we pay for these glimpses. And I've just lost patience with docs that lie. I think they should lose their licenses. I know my other endo would have been concerned and done something, even if it was to rerun the tests again later.

Oh well, more wasted money, more running the same tests over and over instead of running some different ones once in a while. They're supposed to be testing all my endo glands, but they only ever test my thyroid because of meds and my cortisol, because when my adrenals its like a last stage thing. I'm sorry, I'm just so disappointed. I thought she might be different. I may try an alternative doc, there is supposedly a good one. I'm a little afraid because of my liver and herbals are often unreliable but at this point, I don't have a lot of options. I've been to four endos and travelled up to 150 miles to go to them. Maybe I can go back to my old one and just pay her cash. It's like 150 dollars on top of what she takes from my medicare, which is over even the medicare 25% that I'm supposed to pay. I think this is illegal what she is doing, but who wants to fight with your doc. It's really sleazy, but she's good.

((( Marji ))). I'm sorry the results from that appt. were not what you were expecting. I know you were finally hoping for some answers. I know the prednisone will have you feeling better for the holidays, but I do hope they will continue testing to determine your urination problem. Take care and keep us updated,

Marji, I'm so glad you are getting some relief. I know what you mean about wanting to use the pred sparingly over a longer period. I wondered if that would work too. But I've only taken a pred taper for poison ivy, many years ago and I never felt better in my life!! I dug all my flower beds that week and did a ton of yard work. I had never even heard of Lupus, but I suspect I had been dealing with it way back then. Now I've never asked for pred because I don't have organ involvement and I can't justify the potential side affects . . .but at times I'd really like to try it to see if I could feel better. I'll be watching for your updates. I'm sorry you have so many issues to tangle with . . . A doctor does NOT have to accept Medicaid. The way I understand it, they have a choice of requiring full payment. The patient then decides if they will use that doctor or go to another. I'll be watching for your updates. Blessings!

Thanks Rosie, Redrose, I don't get medicaid, I get medicare, well really humana.

My doc wanted me to go to emery in atl which is 6 hours away. It would be good, but I couldn't do it in a day. We have a mayo at St. Lukes and I believe St. Lukes will take my insurance. That might be an option. I'm just getting to the point I would like to have some comprehensive care in a way.

I think whatever is wrong with me,like liver or something because that is a sign of advanced/advancing liver disease (water retention), maybe the extra pred is causing some kind of swelling to go down? Maybe for you too? I have still been in terrible upper and lower abdominal pain this time, but I'm still in the beginning of the taper. With my liver the way it is, if my kidneys go, I'm really sunk. They did a catscan but they said everything is normal. Everything is always normal, always until another scan at another place comes out abnormal, then they change there tune. One doc thought I may have a problem with my tubes coming out the kidney. That they might be rough and causing problems. I couldn't tolerate the med for it. I have detrol and that helps with night time sometimes but can't take it much. My stomach feels like a sore sack of nasty pills all the time. Need to changemy sig,not on all that anymore, just 6 or 8 meds.
Thanks you guys for always being there.