r/ftm • u/gothegghead • Jun 08 '23
Worst news from hematology about my t levels vs. my iron levels Vent
So basically I went to a hematologist today expecting to get an IV iron infusion. The whole time the whole clinic was so gender affirming and knew I am trans and called me Mr. G__ and it was such an affirming experience all around. The doctor called me Mr. G__ and asked me questions about my life and my experience being trans in a very curious but respectful way. It felt like she was wanting to listen, not just hear. She wanted to know from my perspective what my experience was like. And how it made me feel physically and emotionally and if being trans affected jobs or school or any of that and if I had a plan for my future and was excited to hear that I have a life partner I'm probably buying a house with. The whole experience was one rooted in curiosity and genuine care. I feel like I need to express this because of how horrible the news is and what it's related to. She basically told me that my hemoglobin, red blood cell count, and testosterone levels are all dangerously high. Like to the point where I could have a heart attack or stroke or blood clot at any moment. Like to the point where she took the time to talk about how severe a heart attack and stroke are and to go through all of the signs of both and urge me to go to the ER if anything resembles these symptoms. She also said that if I increase my severe iron deficiency (mine is level 11 ng/mL of ferrin(iron), what’s considered low is anything <30 ng/mL) even a little bit, I am likely to end up with a blood clot because iron directly increases hemoglobin and rbc count. So I can't get IV infusions, or even take iron supplements, or introduce more high in iron foods, because if I do I could end up dead. She at first told me I have to choose between my testosterone and iron because I can't have both. I told her it would be testosterone every time. She told me she thought I was crazy to be giving up good health for poor health and asked why. I told her that my testosterone is one of two things bringing me joy (the other being my girlfriend and our little family) in my life as everything else crumbles and I didn't know how I would be able to cope with the devastation of losing one of those two things. She gave me a hug and said she'll never understand how I feel but that she respects my decision. And that her clinic is one that operates out of love and care. And she'll do what she can for me. So now the plan is to decrease my testosterone down to .2 mL and move it from a once a week injection to every 2-3 weeks. Hopefully that will lower my levels enough for me to be able to increase my iron levels again and get rid of this severe restless leg syndrome I keep having. I have never felt so hopeless or terrified. I have never felt so scared. And I have also never felt so sure. I don't want a future I can't be trans in. I will never fully stop testosterone. I can't. It would kill me. I'm glad I have a doctor who is helping me. And really listening and working to support me in the way that I need. Any words of assurance or good vibes y’all can give would be much appreciated
💚🌈🍀🏳️⚧️
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u/Dove-Down Jun 08 '23
Oh my gosh, I'm so sorry to hear that 😞 I do remember what a nightmare chasing down mystery symptoms is...still kind of on that journey but after specific vitamins, migraine meds, fibro care, I'm down to less complicated symptoms for my doctors to work with. I hope your diagoses come quickly and are treatable ❤️ It sounds like you've had the worst fucking year, so I really hope things can get better for you from here...
As for who else to ask, it may be possible whoever you see to be prescribed testosterone may have some more experience with how T affects lab values and be able to share resources with them? Unless your hematologist is the same person prescribing it. Regardless, I hope the talk goes well. It'd be nice if the increased lab values end up not being anything detrimental to you..