Monday, February 25, 2013

Wasn't This An Episode of Golden Girls?

Ze German was right about my neuroimmuno issues and he did me a huge solid by referring me to the reproductive endocrinologist. Not only did the RE identify my tremors but he also discovered that for whatever reason my body is not producing nearly enough estrogen or testosterone. So, at the ripe age of 26, I am beginning hormone replacement therapy. My cycles are like clockwork, they've always been extremely regular with the exception of last October. That month I had four different episodes of bleeding, almost like short periods. Four in one month! I half-hoped I was pregnant and experiencing implantation bleeding. Ha! Fat chance. I went to see my gyno, was told to wait it out and see if they returned to normal, and they did. Despite my seemingly-regular cycles, I'm being told that I could have pre-Menopause. Did I mention that I'm 26?!

I've learned to find the bright side of my health problems, and this case is no different. Turns out that having wonky hormones can wreak havoc with your metabolism, and low estrogen and low testosterone can make it almost impossible to lose weight. Your body starts wasting muscle and storing fat, and you turn into a fat old dried-up blob. I've been eating sensibly (maybe even taking my healthy eating overboard) and have been unable to lose weight. For a former Eating Disorder patient, that's very very disappointing and makes it very very tempting to fall back into self-destructive behavior, even when I know (in the part of my brain that still works) that bulimia doesn't really result in fat loss. So I'm hoping that balancing my hormones and getting my estrogen and testosterone back to where they should be will result in the loss of some major poundage. I lost about 20 pounds over the course of my bulimia. Once in recovery, I gained most of it back (duh, it was almost all due to dehydration). Then I was put on Adderall, lost 50 pounds in about 8 months because I was eating nothing but amphetamines and Power Bars, washed down with coffee. When I chose to stop the Adderall treatment in order to be evaluated for my worsening neurological problems (assuming that being off all meds would make it easier for doctors to correctly diagnose me), I gained about 40 of that back. Probably because I was eating over 500 calories a day, and because my fatigue was (and still is) almost impossible to overcome. Now that my heart problems are being addressed and monitored, I have been cleared by my cardiologist to go back on Adderall. Ze German gave me a prescription, though I'm now taking it for fatigue since it's clear I don't have ADD. So the silver lining on this ovary-shaped storm cloud is that the combination of Adderall and HRT should mean that I'll finally see some results from my new lifestyle! And I see an orthopedist tomorrow to have ankle braces made so that I can continue the jogging program I started. I may have a malfunctioning brain, but I shall have a hot ass!

1 comment:

  1. Hey! I stumbled on your blog when I searched Polyclonal hypergammaglobulinemia! lol Small world...Really...Really...Really small world, esp since you have EDS, heart issues, and undiagnosed Chiari. Did I mention how small it was? I'm sure you're like me and are reading every medical journal you can get your hands on while cross referencing diagnoses most drs can't even spell, but I thought I'd pass along some information...just in case you haven't happened upon it yet! I'm in the process of checking into it now, but it'll take a bit to get money put together. If you haven't joined any EDS/Chiari groups on FB, I encourage you too. Some of them have been my Saving Grace, and they're Full of helpful tips and how to live with all this crap! Dr. Fraser Henderson is know as the Wizard in the groups and is famous for dealing with the same exact things you're talking about! Also, The Chiari Institute is something you could try. You can send scans in, and they'll evaluate them and tell you if they think they can help. They told me mine wasn't bad enough yet...which I beg to differ considering I'm the one to have to live this way, BUT I'm told Dr. Henderson is Really the one I need to see because he takes into account Upright MRIs and orders more testing appropriate for EDSers you can have done there. Hope it helps! Also....What The Heck is hypergammaglobulinemia? I got my "diagnosis" at Mayo in Jacksonville. They couldn't even tell me. They told me to tell the hematologist when I went for my iron infusions. I did, and she laughed and blew it off. Totally different from Mayo who basically said...yeah, you should get this checked out. I think it was her code for I have no freaking clue, but I'm not going to tell you that lol. So I'm always curious if anyone else even has an estimated guess!

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