Advice regarding health problems?

[long.897]

Went to the endo today, and I'm hoping to get an unbiased perspective on things.  If anyone could help out with that, it would be much appreciated.

Basically, I've been on spiro for about 3 months, and was set to start E today.  After reviewing all of my medical records, the endocrinologist decided that she was uncomfortable beginning HRT with a patient who has severe nontrans health issues; she says that once I get them straightened out she'd be happy to help, but for now it would be too risky.

I can certainly understand wanting to keep me from being put in a life threatening situation, but my medical issues are chronic; there's no cure, and treatment is supportive (diagnosis isn't definitive, but my specialist is 95% sure that I have Ehlers-Danlos with cervicocranial instability leading to Chiari malformation.)  As such, under her "get it worked out" bit, I'll never be able to start HRT.  I really don't think I can stand to live as a boy forever, and I feel really frustrated about being postponed for estrogen when I'm at an age where a difference of as little of a year could be quite meaningful (20.)  Just not really sure if I should see another doctor, abide by my current one's regimen, or go with the insidious option three...

[Flan]

Go to a different doctor, hrt may require extra monitoring under your circumstances, but an endo familiar with hematostasis disorders should know what to look for.

good luck

[long.897]

Well the concern wasn't so much bleeding, it was the decrease in muscle mass, and the increased ICP brought on by estrogens.  Increased ICP with a Chiari malformation is a very bad thing, but I don't really know how severe the risk would be.  The muscle thing is frustrating because I DO NOT want to be muscular, but it's something that's been pushed onto me by numerous doctors; they mostly feel that I should work to be as muscular as possible so that the muscles support the hypermobile joints. 

[Flan]

Lean muscle shouldn't be too bad I suppose (but then again, I'm just an armchair surgeon at the moment), it's just a matter of finding a PT who knows what they are doing (read: not a golds gym type).

I'm not aware of estrogens increasing intracranial pressure, or anything spiro or in a severe case, use of an osmotic diuretic can't handle.

[Cindy Stephens]

I also have a disease for which HRT is contraindicated.  I had been taking low doses, but increased over the last year with a Dr. who was comfortable with closely monitoring my liver enzyme levels.  They haven't changed (for me, let me stress.)  However, I have decided to have an Orchi so that I can decrease my drug usage.  I agree that it is a difficult place to be put into.  Which one will do the least harm to you?  Your physical problem sound terrible. Just remember that none of us are Drs. even if we say we are.   But it might be to your benefit to be able to present a number of options.  Good luck.

[long.897]

I appreciate the sympathy, but there are others who are far worse off than I am; pain and physical limitations are a problem, but after dealing with one of the original diagnoses of MELAS (really awful disease,) EDS would seem like a walk in the park.  I don't really know about the ICP either, but the muscle thing really irks me; I absopositively do NOT want to be a muscular person, so being contraindicated because of potential decreased muscle mass is just frustrating.  The endo WAS encouraging an orchi (covered by insurance no less!) for an unrelated reason, but I'm not entirely sure about that.  I kind of want to try the HRT thing before going with serious surgical modifications.