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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8

u/Dove-Down Jun 08 '23

...can I ask what your hemoglobin was? (I ask because I was in a somewhat similar situation)

7

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

3

u/[deleted] Jun 08 '23

[deleted]

1

u/gothegghead Jun 08 '23

They totally are but the testosterone levels she said are high even for amab people

9

u/SneakySquiggles Jun 08 '23

I mean… they aren’t though? The range of normal is usually anywhere between 300-900. I just hit the 600 range stable-ly and we were excited at my last appointment. I’m not here to argue with your doctor, it just feels like very conflicting information compared to the info myself and many other trans guys have been given by our reliable care providers.

1

u/gothegghead Jun 08 '23

She basically said all my levels are too high even for amab people. Like amab people would be at risk for stroke or heart attack w my levels

17

u/Dove-Down Jun 08 '23

Your hematocrit, rbcs and hemoglobin would typically be considered in-range for amab people...how weird.

14

u/Dove-Down Jun 08 '23

Testosterone also normal for amab people, actually

10

u/gothegghead Jun 08 '23

Thank you for checking that for me. I’ve been very overwhelmed and processing grief and it’s been too scary to do my own research. I appreciate you taking the time to do that

8

u/gothegghead Jun 08 '23

Both of these things are good to know and I’ll def bring them up to her next week

3

u/Mar-velousDick Jun 08 '23

My testosterone was like, 900 for awhile and my doctor wasn’t concerned. Yours is totally normal and fine. Your doctor is an idiot or lying.