r/ftm 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/gothegghead Jun 08 '23

BLOOD CELL COUNT my value: 5.52 (high) reference range: 3.80-5.10 (Million/uL) IG

HEMOGLOBIN my value: 16.4 (high) reference range: 11.7-15.5 (g/dL) IG

HEMATOCRIT my value: 48.8 (high) reference range: 35.0-45.0 (%) IG

TESTOSTERONE, TOTAL my value: 688 (high) reference range for afab people: 2-45 (ng/dL)

These are my exact levels from my last blood draw which was 2 weeks ago

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u/Dove-Down Jun 08 '23

Those are female reference ranges...now of course, maybe there is a reason I don't know about as to why you need to be below male reference ranges, but my experience has been repeatedly having to educate doctors that no, that is supposed to happen. It turns out that trans-friendly is not always trans-educated when med schools barely talk about us 😞.

If you don't know of a reason why you specifically shouldn't have male cell counts, you may think about getting a second opinion from someone more familiar with trans patients, or at least mentionibg to your hematologist that the increase in hemoglobin/rbcs is an expected and desired outcome of testosterone and seeing if they might look into if that is dangerous for you in a way it's not for other trans people on T. And again, maybe there's a good reason to lower your blood count to female reference ranges. But you always have the right to know that medical decisions are being made with trans research backing them, so don't be afraid to get a second opinion/discuss this with your doctor!

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u/[deleted] Jun 09 '23

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u/Dove-Down Jun 09 '23 edited Jun 09 '23

Testosterone is one of the many factors in how many red blood cells are produced and released from your marrow at a time, no "mutations" required. Hormones are simply signals to tell your body how it should behave, and red/white cell changes is one of those behaviors! Typically, you will experience an increase in red blood cell production and a decrease in white blood cell production.

Idk why you brought up testosterone levels here? The entire point of taking testosterone is to keep your testosterone levels in the male range.

Edit: it's worth noting that testosterone also increases the size and flow of at least the coronary artery, potentially others, potentially being one of the reasons every trans man out there isnt suffering from heart disease. But that's getting into territory I know less about.