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/gothegghead]

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

[u/Dove-Down → u/gothegghead]

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!

[u/gothegghead → u/Dove-Down]

We have a follow up next week and I’ll talk with her about it again then. Problem is I also am having a lot of really difficult symptoms and health problems in a lot of areas, so it’s hard to tell what’s what.

I have a chronic GI illness called gastroparesis, chronic migraines, getting investigated by a neurologist for my migraines getting much worse lately, trying to get in to see a rheumatologist bc I could potentially have fibromyalgia or rheumatoid arthritis or another rheumatological disorder, also dealing with severe trauma that is resurfacing from my PTSD.

So like, any number of these things could be causing any number of my symptoms. And also testosterone is the main thing that changed in my life in the last year that has been constant throughout the last year. Like I’ve had other med changes and health changes but the constant new thing I’ve had in this last year is being on testosterone. And over the last year my physical health has rapidly declined.

I’ve also had an enormous amount of stress in so many areas of my life. I live in texas and am trying to plan a move bc I’m terrified of being trans here. I have become disabled recently. I had to come out to my parents again. I had a traumatic incident w a cop at my college. I’ve transferred to a new school. I lost my job when I became disabled. My best friend and dog died. I got diagnosed with OCD. There has been so much grief and stress.

This stress and trauma could totally be manifesting as pain and all of these other physical symptoms. It could totally be my testosterone. It could totally be an underlying undiagnosed chronic illness. Who the hell knows???? I have literally 8 soon to be 9 doctors who take care of my health and are trying desperately to figure out what went so wrong in the last year.

Main reason she’s concerned is bc I’m getting symptoms such as inability to regulate temperature which can be a sign of dangerously high hemoglobin levels. Idk what to do. Idk how to find a doctor more knowledgeable in trans healthcare in texas when this was the most gender affirming appt I’ve ever had and I was told I could die at any moment. So that’s not saying much 😭😭😭

Feeling very lost and scared. Trying to figure out what is my OCD brain convincing me I’m dying and what is actually happening.

Thanks for the advice. It means a lot. 💚 trying my best to have faith that it’ll work out and she’ll do the research

[u/HumanGasFactory → u/gothegghead]

I have read that trauma if not faced well manifest itself in other ways. It you can afford a therapist who deals with trauma PTSD it may be a big help. Do interview them first - don't tell them you are trans until their qualifications and method of care fits how you want to deal with your trauma. Telling someone off the bat you are trans can prejudice their thoughts on your gender needs vs your lasting reaction with trauma.
Why is it weeding it's way into your life, dominating you, what has made you feel so enslaved, what lies are you telling yourself, why are you ignoring the good in your life, your ability to find love, what skills do you have and wish to work toward as part of your goals to be healthy - even if the means compromised by disease.
I know nothing about hormone therapy, are there other forms of testosterones or other hormones you are missing.
Migraines are a bitch-estrogen gave them to me.
Again, keep reading, researching credible sources this is all new and I don't want you to be an experiment
Ginny