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Polycythemia

Started by TransAm, July 30, 2017, 08:18:03 PM

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TransAm

So yeah... I'm fairly positive I have polycythemia, or at least that's what my current symptoms are leaning towards.
When I first started T, I started out at twice the dose I'm currently at. My Hematocrit and Hemoglobin became quite elevated (Hemoglobin: 52.2 / Hematocrit: 19.1) even though my baselines were pretty low to begin with. This occurred over the ten month period I was on the initial dose. All my other levels were very much within the optimum male range and no other problems arose.
She immediately halved my dose and I've been at that one ever since. It's been fine for the most part even though the changes have slowed. My hematocrit has now leveled out at 16.3 but my hemoglobin is still pretty **** high at 50.3.

Here are my current little nagging string of symptoms I've only recently put together:
- A vague, fleeting feeling of 'pressure' in my head.
- Skin redness in general, but especially during periods of physical exertion.
- Tons of sweating.
- Constantly hot no matter what.
- Awareness of heartbeat (feels like it's beating harder even though my BP stays around 105/65 / 110/ 74).
- Random tingling in my extremities.

I'm calling the clinic tomorrow (closed today) and finding out if I can get a blood dump and possibly switch my prescription to a gel or patch as I've heard those are less likely to elevate RBC levels.

Has anyone else struggled with this or experienced these symptoms? I have to admit to being a little anxious. There's no history of blood clots or other blood disorders in my family so I'm not freaking out or anything, but there's definitely a nervous edge.
"I demolish my bridges behind me - then there is no choice but forward." - Fridtjof Nansen
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Kylo

I use gel and I also have it mildly. They've asked me to reduce the dose.

I did have a few sensations of pressure at one point but it only lasted a couple of days. I used aspirin as a blood thinner in case.

I haven't noticed any changes in the other symptoms. Always been aware of my heart beat all my life, haven't noticed it 'labouring' any more than usual, not feeling temp changes or sweating changes. I do exercise a lot more now than I used to, I guess that's much better than being sedentary with polycythemia. I do try to stay hydrated and take aspirins if I feel "off".

I can tell my aerobic capacity has increased with it though, it takes longer to tire me out as well. Not sure if I could 'judge' the relative level of increase by such a thing, but it's noticeable. This reminds me, I'm due for another hematocrit test myself.
"If the freedom of speech is taken away, then dumb and silent we may be led, like sheep to the slaughter."
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jagfel

I'm on gel and my hemoglobin has lowered slightly but is still within the normal range. I've definitely had the pressure in the head, tingling, and skin redness issues though but it was all mostly present pre-T as well.


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FTMax

Everything but the first one, yes. My lab work always comes back good for RBC though.

Have you had a hysto? The sweating and temperature could be symptoms of chemically induced menopause if you haven't had one.
T: 12/5/2014 | Top: 4/21/2015 | Hysto: 2/6/2016 | Meta: 3/21/2017

I don't come here anymore, so if you need to get in touch send an email: maxdoeswork AT protonmail.com
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TransAm

Quote from: FTMax on July 31, 2017, 08:05:57 PM
Everything but the first one, yes. My lab work always comes back good for RBC though.

Have you had a hysto? The sweating and temperature could be symptoms of chemically induced menopause if you haven't had one.

I haven't, but after today's appointment, I'm seriously considering it.
I was told they want to halve my dose again. I'm already at a piddly little dose in the first place. My T count mid-cycle came back 760, which is all right, but she said halving the dose would likely "still make the readings come back between 300-350".
Yeah... I'm not sixty and not interested in my changes going completely stagnant. I'm less than two years in.

Honestly, this is pretty ******* depressing and I feel like ****.
"I demolish my bridges behind me - then there is no choice but forward." - Fridtjof Nansen
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TransAm

Screw it. I'm going to get real for a bit, so -insert trigger warning here-. Only 50% sure I think I know what a trigger is, so that's included just to be safe.

The last time I recall feeling this miserable and hopeless was pre-everything.
There's not a single part of me that's ready for her to slash my dose in half again. It's physically worrisome, emotionally repugnant and mentally terrifying.
Doses can't be posted here but if anyone's curious what it may end up being, message me.

She told me after she halved my dose the first time that the treatment would be having my blood donated every 3-4 months if my levels didn't decrease. Though I wasn't too jazzed about it, it didn't really matter because I was prepared to move forward and do just that if necessary.
Now that the time has (apparently) come, the treatment has suddenly turned into giving me what equates to be a starter 'let's make sure you aren't allergic' dose indefinitely.

I don't want to do this. I can't do this.
I'm pissed, nervous, frustrated and feeling a little irrational. Is it even possible to just say no if I offer what equates to be a reasonable alternative (IE: the blood donation route)?

She informed me that the biggest complaints she hears from guys whose doses get dropped so drastically are 'emotional fluctuations' and 'their periods returning'. Yeah, those are two pretty ******* large complaints, neither of which I'm prepared to handle dealing with again.
This isn't anywhere near where I thought I'd be at this stage and I'm starting to feel like there's something inherently wrong with my genetics. At nearly two years in, I should be settled into a 'business as usual' dose, not scrambling around trying to figure out why my levels aren't responding appropriately.

Here's where the irrational part is really coming into play:
If I knew she was going to suggest another huge dose drop, I'd have never mentioned the physical manifestations in my original post to her.

****. This is suffocating.
"I demolish my bridges behind me - then there is no choice but forward." - Fridtjof Nansen
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FTMax

I would be proactive and tell her you want to see if blood donation will help. And if she insists on dropping your dose without trying it, I would look for another doctor to take over your care.
T: 12/5/2014 | Top: 4/21/2015 | Hysto: 2/6/2016 | Meta: 3/21/2017

I don't come here anymore, so if you need to get in touch send an email: maxdoeswork AT protonmail.com
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jagfel

Seconding seeing another doctor, or even more until you find one that actually knows what's happening. I keep a different GP for each specific issue (T, mental health etc). A big hassle but it keeps me going.


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TransAm

I do agree with both of you; switching doctors may be a necessity depending on how tomorrow's appointment goes.

That being said, does this sound anywhere near standard to either of you?
I've been on T for under two years (couple months shy). My current levels in the middle of my cycle are in the mid 700's. That seems a little low to me but she expressly told me that anyone coming back in the 850+ range is 'not being treated appropriately' and that those levels were not target levels. That's when she launched into the spiel about putting me on a 'maintenance' dose with the goal of getting my T around 250-300 because 'once all the changes have occurred, you're just looking to stabilize'.
What?
If I were three or four more years into this, I might not be so resistant to a slightly lowered dose but I haven't even gone through the full puberty mode yet. 
If I'm being unreasonable, someone chime in.
"I demolish my bridges behind me - then there is no choice but forward." - Fridtjof Nansen
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FTMax

Yeah, no. Definitely not standard.

If you look at the male reference ranges for T, anywhere from 280 to 1100 ng/dL is within the normal range. Obviously there is high normal and low normal. With HRT, we're ultimately looking to maximize T while simultaneously minimizing conversion to estrogen. So the goal really, especially in the early years or post-hysto, is finding the dosage that is getting you masculinized to your liking but also not creating unwanted side effects. I have never once heard a doctor say that getting someone to the lowest possible end of the reference range and then maintaining that is their professional standard.

The only two times I've seen someone shooting for the lower end of the reference range have been (1) non-binary folks, and (2) older transitioners. Older men naturally have lower T, so at a certain age it does make sense to taper it off. But you and I are pretty similar IIRC, so neither of those apply to you I think.

My first few sets of lab work came back pretty high (900+). My doctor did want to reduce my dose, but I reasoned that I wasn't experiencing any negative side effects and my E had lowered (though it was still outside of the reference range - this is fairly common though). So we ended up leaving my dose as is until my hysto, despite it being high for my doctor's liking. She understood what my goals were (I'm binary, I wanted a full medical transition, etc.) and knew that it would take really solid T levels to make that happen.

I'd just be really frank with her. Tell her you want T levels that are typical for natal men your age and that you're very willing to try blood donation to improve the RBC. If she's not willing to play ball, time for a new doctor.
T: 12/5/2014 | Top: 4/21/2015 | Hysto: 2/6/2016 | Meta: 3/21/2017

I don't come here anymore, so if you need to get in touch send an email: maxdoeswork AT protonmail.com
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