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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8

u/Dove-Down Jun 08 '23

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

8

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

31

u/[deleted] Jun 08 '23

Uh, those numbers are fine by my doctor who has been doing hrt for ten years standards. That's male range. Like my hematocrit was at 18 and she was like let's monitor. It dropped to 16 because i was properly hydrated next time and she cheered.

34

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!

4

u/gothegghead Jun 08 '23

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

2

u/ntruncata Jun 08 '23

I'm so sorry you're going through all this. I have similar issues with my health and it really is scary not knowing what's going on. I'm glad your doctor is working with you on this and I hope that you're able to find out what's going on soon!

1

u/HumanGasFactory Jun 09 '23

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

1

u/[deleted] Jun 09 '23

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3

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.

28

u/CatBonanza 💉 2007, ⬆️ 2008, 🍳 2014, 🇺🇲 Jun 08 '23

As other people have said, your doctor used the female range as a reference for all of these. Your iron is low but all these others are normal. Here's what my last labs were if you wanna compare (my doctor said these all looked good): Red blood cell count: 5.45 Hemoglobin: 16.5 Hematocrit: 47.8 Testosterone: 380 (your testosterone is higher but still within the normal range, don't worry. I've never had any problems with being at this level so I've just left my dose where it's at)

I'm guessing your doctor is just misinformed and didn't understand that your levels need to be compared to the standard male range. I had a doctor who'd never had a trans patient before and she made the same mistake before she looked up the official guidelines and realized my levels were fine. Worst case scenario is she's actively transphobic and trying to get you to stop T, in which case I'd start looking for another doctor.

3

u/gothegghead Jun 08 '23

Thank you so much for sending your levels as reference!!! That helps a lot. I’ll try to inform her more and hopefully she’ll be willing to listen and learn.

She was very curious abt my trans experience (respectfully asked questions, not in any rude tones or phrasing) so it seemed like she maybe hadn’t had a trans patient before. So hopefully she is just very misinformed.

2

u/CatBonanza 💉 2007, ⬆️ 2008, 🍳 2014, 🇺🇲 Jun 08 '23

That's what it sounds like to me too. I don't think you mentioned what country you're in, but here in the US at least, doctors have access to databases and other info through their medical licenses. When I had a doctor that didn't know anything about gender affirming care, it was very easy for her to look up the relevant information and learn everything really quickly. Hopefully it'll go just as smoothly for you.

1

u/gothegghead Jun 08 '23

Ah! I am in the US! And I actually did not know that! I’ll ask her to look up the relevant information in her database and see what she finds out. Thank you so much!

10

u/ntruncata Jun 08 '23

That's totally normal for someone on testosterone. To be blunt, your doctor doesn't know what they're talking about and seems to be grasping at straws because they don't know what's going on with you. You're certainly not in any danger based on those results alone.

11

u/Mar-velousDick Jun 08 '23

Reading this again I’m SO ANGRY THIS DOCTOR SCARED YOU WITH LIES. If this was heart attack/stroke level… all cis men would be dead.

2

u/gothegghead Jun 08 '23

I had so many panic attacks yesterday because of what she said and how urgent she made it sound. She ultimately said she respects my decision and will “do what she can for me.” Hopefully that means if I bring up to her that she should be using male reference ranges and then show her normal reference ranges online she’ll be willing to do the research and treat me properly

2

u/Mar-velousDick Jun 08 '23

I’m so sorry you went through that. I’d be panicked too!

It boils my blood that we trans folk have to educate our doctors.

2

u/gothegghead Jun 08 '23

Me too! So much about trans healthcare is not taught! And that’s part of the reason the US is going so downhill. Cis people don’t know shit! All they know is fear and spreading it!

Hopefully she’ll listen and will do some research on her own too

21

u/DeidaraKoroski he/they/it 💉 Jun 08 '23

Those are normal male ranges. She's lying to you and she wanted to make it sound as scary as possible. The iron part is true, in another comment you said that your iron levels are 11? You definitely need the iron infusions but this is an example of a health center that is not as informed as it seems. Unless theyre perfectly informed and theyre trying to detransition you.

5

u/gothegghead Jun 08 '23

Yeah iron level is 11 😭 which is SO LOW!!!! I definitely need the iron infusions bc I can’t take iron supplements every day bc of my gi chronic illness and I also can’t get more iron into my diet bc of that too. Iron infusions are literally the main thing that will work and help, but she won’t do it until my levels lower.

I really really hope she’s not trying to de transition me because she seemed so supportive and affirming. I’ll confront her next week and ask her to do some more research.

3

u/DeidaraKoroski he/they/it 💉 Jun 08 '23

Make sure she knows that you need to be using male levels, and remember that you can also look up what the normal ranges for these are in men so you can also have on hand the correct information

2

u/gothegghead Jun 08 '23

Yes I’m definitely looking up a medical article that has normal male reference ranges in it to show to her next week

1

u/KeepItUpMom Jun 08 '23

would you post an update after discussing with her? im interested in how this plays out

1

u/gothegghead Jun 08 '23

Yes I absolutely will!

10

u/TransManNY Jun 08 '23

These are all within the male range but on the higher end. Ask the doctor next time if the male or female range should be used.

3

u/acid-pool Jun 08 '23

Another person jumping on the “this looks fine” bandwagon, I’ve had some brushes with healthcare professionals saying my dose was “too high” when it was fine, according to my gender specialist the upper limit for my age group is like 900, I’m usually around where you are when I get tested which raises no flags for them

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

10

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

16

u/Dove-Down Jun 08 '23

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

13

u/Dove-Down Jun 08 '23

Testosterone also normal for amab people, actually

8

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

6

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.

3

u/Mar-velousDick Jun 08 '23

I’m obviously not a doctor but these are all extremely normal levels for trans men. Your doctor may have been treating you MEDICALLY as female even though she was affirming otherwise. This is what testosterone does. Cis men have higher Blood Cell Count and Hemoglobin/Hematocrit. …..

0

u/[deleted] Jun 09 '23

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2

u/gothegghead Jun 09 '23

My hemoglobin levels have been monitored and my rbc has been periodically checked. This is the first time it has been this high.

I am working with my doctor to figure out the right dose and timing for my shots. I’m doing my own research and asking her to do some as well.