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.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments