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Wednesday, March 27, 2013

New Endocrine Dr Gets Initiated

All that background in the last post was supposed to help introduce this next post... Last Monday, I found myself in the office of a certain Dr. Tourette, my new Endocrinologist. My old Endo Doc is going on maternity leave, and while we wish this could happen, my Adrenal Insufficiency has declined to go on leave simultaneously... so Endo Doc asked me to seek out a new version of herself.

I tried to give an accurate, yet concise history of my adrenal problems to Dr. Tourette's nurse. The nurse
Just a Spoonful! ;)
seemed very sympathetic, smart, and took meticulous notes. I liked her. I also liked Dr. Tourette. Just a few minutes into our conversation, he started making changes that I've been begging my old Endo to make for years. First, he changed my medicine from pill form to liquid form (so I can absorb it more easily). Point #1 for Dr. Tourette! Second, he increased my mineralocorticoid (Florinef, an aldosterone pill that helps with salt and water balance), earning him point #2, and third, he switched me from hydrocortisone, the short-acting steroid that's chemically identical to the cortisol your body makes, to prednisone, which is a longer-acting steroid that has a much greater anti-inflammatory effect (we'll see about a point for that one. It made JP Dr, the Rheumatologist, very happy, though, so maybe he should get a point just for that). He said that since I'm nowhere near ready to taper off the steroids, I might as well be on a steroid that will have a more beneficial effect on my arthritis inflammation. So anyways, these are all good changes.

Since I'm on such high doses of hydrocortisone, he assumed that I had simply never tried to taper off
steroids yet due to my underlying illnesses' need for steroid treatments. He was rather surprised to learn that I have actually been trying (unsuccessfully) to taper off of steroids for over three years. I honestly
don't think he totally believes me. He told me that it's not a hard process and that it should take less than 6 months. He walked me through that types of testing he would do once I tapered to a certain point, in
Sometimes I feel this way...
order to see if it was safe for me to continue the tapering process. I explained that my old doctor wanted to do that testing, too... but I've NEVER been able to get to a low enough dosage to even have the testing done! He said I probably tapered too quickly; I should go as slow as 2.5 mg/month. I told him that I've done much, much smaller and slower changes than that... and still been completely unable to tolerate the change. He said that it was normal to feel bad when tapering, and I would just need to push through it. I told him that I've successfully tapered off steroids a number of times when I had UC, so I know how bad it can make you feel, but now when I taper, it's far worse. It's not simply a matter of pushing through feeling awful... I go into adrenal crisis when I try to taper now! Like I said, I'm not sure that he really believes me. If I were a doctor, I might not believe me, either. ;) It doesn't make sense and it's not what the textbooks and studies show.

Speaking of "not what the textbooks say," Dr. Tourette told me that I should not need Florinef, which helps with salt and water balance, at all. Apparently people with secondary AI still make mineralocorticoids (what Florinef replaces) - they just need hydrocortisone. HOWEVER, my lab work, vitals, and symptoms clearly indicate that not only do I need the Florinef, but I need to be on MORE of it than I'm currently on. Dr. Tourette admitted that he doesn't know exactly WHY I even need Florinef at all... but since I obviously do need it, he's actually increasing my dosage. He told me that people with AI who are not on enough Florinef can present with an adrenal crisis even when they are taking supra-physiologic doses of hydrocortisone. This would completely make sense! So many times, I've felt like I'm having an adrenal crisis and have required IV fluids to get stable, even when I'm on tons of extra hydrocortisone, much to the bewilderment of Endo Doc. Dr. Tourette also thinks it's possible that I don't have POTS at all; my POTS symptoms may just be a reflection of my body's need for more Florinef. I think it makes more sense to say that the POTS is the reason I need the Florinef, but I don't really care what diagnoses I carry or get crossed off my list as long as we can make me feel better!

He also said that it would be extremely unlikely, but there is a very small chance that I have Addison's disease - primary adrenal insufficiency, which DOES require both glucocorticoid and mineralocorticoid treatment. The chances of me developing Addison's at the exact time when I was tapering off steroids seems incredibly, insanely unlikely, and doesn't totally add up with my lab work at the time of diagnosis... but my body typically doesn't follow the rules, and I am sorta the queen of unlikely events, so we can't rule it out.

At this point, however, it is impossible to do any kind of testing to determine what, if any, function my adrenal glands have and what type of adrenal insufficiency I may have, so he felt it was best to try to get my other conditions under better control, then re-address the adrenal issues once I hit a medical remission. I did try to warn him that remission is not really something I've achieved since my diagnosis in 2007... but we can always hope, right? And at that point, I'm not really sure what, if any, magic he has up his sleeve that will somehow allow my body to tolerate tapering off steroids.... but all that is in God's hands and is months in the future! One day at a time!

Salty and Sour Deliciousness!!!
My Rheumatologist, JP Dr, sighed and said, "Thank GOD!" when I told her that we were switching to pred from hydrocortisone. We're going to give the new steroids a spin for a week or so, and if I'm not in a great place with swelling and inflammation by then, we will add in Cimzia, the new treatment she's been pushing since June.

I think that the increased Florinef is helping a little bit with my stamina and dizziness...but the dramatic difference is the disappearance of my bizarre, embarrassingly weird salt cravings... The week before we increased my Florinef, I was engrossed in what my brother refers to as my bulimic behavior: I licked the salt off of salt & vinegar potato chips...one chip at a time, until I'd licked THREE big bags' worth of chips over the span of just a few days. I don't actually eat the chips, because I do not even like potato chips... I just CRAVE the salty, sour coating! I can't even describe how absolutely incredible and amazing that taste is when I'm in the midst of a craving. My tongue just tingles in anticipation of the next chip! I know, so gross. I honestly can't help it. Thank goodness, I have not even had the urge to lick a chip since we upped the Florinef! It's a miracle! ;)

Hannah ;)

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