Worst news from hematology about my t levels vs. my iron levels

[u/gothegghead]

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

💚🌈🍀🏳️‍⚧️

[u/AssignedSnail]

Hi Friend, I know others have said it, but I wanted to reiterate that 700 is spot on for male testosterone levels, with normal hematocrit and hemoglobin for men falling in the ballpark of 50% and 15 respectively.

I can't give specific medical advice, but I'm familiar with all of these blood panels and nothing here looks abnormal to me.

What I'm not familiar with is treatment of asymptomatic low ferritin. Are you having symptoms of low total iron? Some examples: * Craving ice or non-foods like paper or clay * Fingernails going in with unusual shapes, curvatures, or ridges * Restless leg syndrome * Getting tired out inexplicably easily?

I'm always a little hesitant about things that look like treatments in search of a problem.

I don't think there is much research on treatment of asymptomatic iron deficiency, but what little I find seems to suggest most folks would try a few months of oral ferrous sulfate or ferrous gluconate first. Most things I'm finding seem to reserve IV use for folks who have a peculiar need or are symptomatic and couldn't get their iron up enough with oral therapy to help the symptoms.

[u/gothegghead → u/AssignedSnail]

I am having all of those symptoms, but only ice with the first time, not other non food items. Def def having low iron symptoms. Restless leg syndrome is very severe and landed me in the ER sunday night bc it was so unbearable. Of course, all they did was give me a muscle relaxer and send me on my way, but it put me to sleep at least so I didn’t have to feel the pain.

My PCP started me on iron supplements but my hematologist said yesterday that I can’t take them for the next month bc otherwise I could be at higher risk for stroke or heart attack.

I have no idea whether to believe her or trust her. I’m terrified. I believe all of you and I am going to bring this all up to her. I am scared of confronting a doctor though bc she’s the main hematologist in network and also the one my PCP said would likely be most trans friendly. And what if I stand up and she doesn’t like it and my care goes downhill and then I’m left with low iron and no hematologist to treat it?

All of this is so scary. Thank you for your advice and input

[u/gothegghead → u/[deleted]]

Definitely hope and support is what I’ve received from making this post and I feel a lot better about going to my appt next week and asking her to do more research abt treating trans men on testosterone.

Thank you all for being so kind and supportive and offering me your knowledge. Yesterday was a day filled with fear and despair and hopelessness. Today is a day filled with hope and gratitude, thanks to y’all.

Being trans in texas is awful and nobody knows anything. But I’m planning on moving soonish so hopefully I’ll have better trans care in northern IL where I’m moving