New endo appt went great

Hi--

I've been suffering so much and really need to get back on prednisone, I'm so much worse than before and now am turning yellow.  I need to check and make sure they tested me for Primary Biliary Cirrhosis, I can't believe they wouldn't have.  Anyway, I saw my new endo and while she didn't put me on prednisone, she spent 45 minutes listening to me and checked me out all over and got the results of my cortisol test and based on it she is ordering a 24 hour urine test and an ACTH stim which will see if my adrenals and pituitary are working.  She is great and people travel from all over to see her.  Her husband is a nephrologist and is great too.  Anyway, I still am suffering through without the prednisone, but hopefully she will get this polyendocrine dysfunction situation under control.  My thyroid is swollen again so I sound like a frog.  I want to talk to her about just zapping it and putting me on a constant dose once she gets all her data together.  With my problems, the up and down of a dying thyroid just adds to the confusion.  I am hopeful I may get a constant dose of prednisone for cushings or at least cortisone.  I know I sound crazy wanting to be on pred all the time, but it actually does the opposite of the bad side effects for me, I get less facial hair, less red face, lose weight, less cravings, and all, probably because I need it.  And I don't usually get sick until I taper off, once I stop using it I always get a UTI and all the rest of the crap comes back.  Well, I'm excited that she's doing additional endocrine testing and I think she is really nice and I hope I didn't overwhelm her, I've been neglected in this area for so long, well she will make a start and that is so important.  I'm just so happy to finally get the endocrine care I so desperately need.  I wonder how much surgery could have been avoided with this very complex problem treated appropriately years ago.  It's ridiculous it took me thirteen years to get a referral to an endocrinologist when I met the criteria for polyglandular deficiency 13 years ago.  So much suffering could have been avoided.  Well, I hope everyone is doing well, I feel like crap but not depressed since I know an end is in sight!

Hi Marji . . . Wooo Hooo !!! a doctor who took enough time and interest to hear you out!! I hope she orders all the right labs and gets things figured out for you. I hope you don't have PBC . . . ughhh!! But if you do, best it gets treated right away. That's interesting about the pred . . . keep us posted . . . when do you see her next? Blessings!

Thanks, now i just got to make through two or three weeks till the tests get done and I see her again. I'm really getting worse and I picked up a sinus/ear infection thing somewhere now, and my throat is acting up and my lungs are starting in again and if they give me pred, it will mess everything up. Why does everything always have to happen at the worst times? Oh well. At least I have pain meds and I will just have to try to tough it out. I see my PCP today for labs and have to ask to get my bilirubin checked, turning yellow and feel like utter crap, so maybe she can help me some way. Well thanks for the replies I was really happy too. about time. I'm just so happy that this is potentially going to get treated, so many of my problems may then get better.

Hi Marji, well like everyone said it's half the battle to have a doctor you can work with. It seems like PBC is being diagnosed with A/I more and more. In fact the group I found for PBC is all caused from A/I with other A/I diseases.Somtimes I wonder if the doctors all get the memo at the same time!!!!!!!!! Anyway my rheumy called yesterday late afternoon (the nurse). Of course the answering machine picked it up . Anyway she said they sent the report to my doctor yesterday So I am just waiting for a call from my PCP. Usually they try to find me the right doctor before they call that way they can tell me where they want me to go and who they want me to see. My lungs have been giving me alot of trouble and my throat actually my esophogas makes me choke sometimes which is scarey being alone here. I truly know how you feel about not getting the help you needed 13 years ago. That's how I felt when after 6 years of wasting time they said I didn't have asthma when all along they could have at least helped me with meds to slow down the COPD. It's enough to loose faith in doctors. Anyway please keep us updated and I hope they get you the help you need to get feeling better.

God Bless

carol

Carol,
The throat problem you mention is scary to me. Do you have GERD--gastric reflux or a hernia? One very dangerous complication of PBC is ruptured esophageal varices (the blood vessels in your esophagus blow up like balloons because the scarring in the liver won't let the blood through and the blood vessels rupture and that is how my grandmother died suddenly, doing housework, not even knowing she had enlarged esophageal varices or that her esophagus had eroded enoughthat they would rupture). That's why I freak out about my neck. If you have reflux or any heartburn or hiccup acid or anything like that you need to get it treated and keep it under perfect control and you need to get an endoscopy to check to see how bad the erosion is if there is any, if you have this problem. They just put you on prilosec, but you need to know how bad it is because if its really bad there are other things they need to do as well. That is really scary, and being all alone, been there not too many months ago. You need to get the esophagus taken care of as a major priority, it can be life threatening. I sleep with my head elevated, which helps. My boyfriend cuts my food into tiny pieces for me so I don't choke, that is one nice thing he does and it really helps me alot. Please get the esophagus thing taken care of and get an endoscope and have them look down there and figure out whats wrong and get it treated. You do not want to have problems like my grandmother. It was not a nice way to go.

I've started my 24 hour urine and the lab tech that gave methe jug didn't put the boric acid in it because they didn't have any in the cabinet and she didn't feel like going upstairs to get more. She said, its no big deal she'll just put it in when I bring the urine back. I asked her what the purpose was for it and she said it was a preservative. Then I said, won't the urine I bring in be useless and spoiled since it didn't have the preservative? And she said, oh no no its fine. So now, who knows if the test will even be accurate. Well, I got more labs today and got my liver done and bilirubin so that worked out and now I will know on that side if I'm getting worse. You will find it comes in waves. Like you feel cruddy but stable, then all the sudden for a few months or even a year, all this bad stuff happens, like you get sick with weird stuff like the pneumonia and other serious stuff, then it goes away for a while,though you still feel cruddy, more cruddy than you did before, and so it goes. That's if you don't get it treated right. Hopefully your docs willget you on the right meds finally and you will start really getting better. That's what I'm hoping for too. Let me know what the doctor says about the esophagus and I will keep bugging you until you get it done unless they have already done it, because it is very very very important. The lungs are too, but believe it or not, the esophagus with liver problems is really really maybe more serious. (((((hugs))))) and take care and know you are not alone, we are here and I will be thinking of you and praying for you.

I will pray with along with you, Marji!