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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: EDS and hormones – am I damaging myself?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › EDS and hormones – am I damaging myself? › Reply To: EDS and hormones – am I damaging myself?

July 14, 2013 at 10:30 pm #3901
Corvus
Participant

Thank you for the reply, and I’m so sorry I haven’t wrote back earlier, I have been so distracted and scatterbrained lately. To clear up any confusion: I was born female, but have been taking testosterone for 2 years to live as a guy. This has effectively stopped my ovaries from producing hormones normally, so I have normal hormone levels for a guy. I hope that is clearer.

I have heard about injected testosterone affecting collagen synthesis negatively, but I don’t know much at all about that. From my own experience I just know I feel like I have less “padding” around joints now, and that I feel more brittle, while oddly also being much more stiff when it comes to normal movement.

I have filled out and sent the symptoms form to you, and I have also written my own list to show to my doctor when I see him in a few weeks from now.

According to the 5 regular tests on the Beighton scale I would not seem that hypermobile at all, I can currently maybe get a 2 (knees) or 3 if I stretch a bit (palms to the floor). Historically I could maybe get a 4. My hypermobility is seen in other places that the Beighton scale does not check. My sister gets the full 9 points though.

Also, I’ve recently been paying more attention to my actual heart rate, and it turns out I often have a rate of 140bpm when I get up in the morning, and throughout the first 2/3rds of the day the difference between laying down and standing is about 40bpm, and then the difference shrinks and seems more normal as it gets closer to bedtime. Maybe this ties into all the heart/chest unconfortability and breathing trouble I’ve been feeling.
Thinking about it I believe I have always had this kind of heart rate differences, because I used to get easily dizzy and sometimes almost faint when I stood up. Now I do not really get dizzy anymore, and I’m wondering if that has anything to do with the fact that my blood count and blood pressure both shot up a LOT compared to before I was taking testosterone, if they get any higher I’ve been told something needs to be done, emptying out some blood being one thing. But if my body is struggling with this and making my heart race it sounds like it would not be a good idea to empty blood?

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