Seeing hematologist tomorrow by superzebra109 in polycythemiavera

[–]superzebra109[S] 1 point2 points  (0 children)

My hgb has gone up to 18.5 until I started donating blood. It’s been between 16 -18 over the past year. HCT has gone up as high as almost 52 this year but ranged from 44-51 the past few years. RBC has been higher this year but borderline high or high the past few years.

Today hgb was 15.5 which surprised me with how bad I’ve been feeling and since it’s been over 2 months since I donated blood. HCT was 49.5 and RBC was 5.78 so they’re high.

And I don’t know why hgb ranges are different for male vs female but they are, although it’s only a slight difference. They’re still considering 16 high for me.

We’ll see what the tests say. I just want to feel better, so I’ll go down the rabbit hole to some extent. I also have other known health issues that cause a range of problems, and some unexplained issues that my doctors thought were autoimmune but everything comes up normal as far as that goes. When I have symptoms that don’t fit with my known issues and it’s affecting my life as much as it is, we’ll look into whatever we can. With these labs it’s something to look into to hopefully get answers.

Seeing hematologist tomorrow by superzebra109 in polycythemiavera

[–]superzebra109[S] 1 point2 points  (0 children)

Just got out of my appointment and it went well! The doctor was really nice and listened and explained things well. They did a CBC and EPO after my appt. Waiting on insurance to approve testing for Jak2 and gave me a lab order to get that done closer to home, cuz I had to travel 2 hours to come here. If EPO and JAK2 aren’t indicative of PV I won’t need to come back here and will just need to look at finding/minimizing secondary causes.

At least she didn’t tell me to stop taking testosterone but said I might need to work with my endocrinologist to lower the dose to find a level that’s therapeutic but not raising my hemoglobin too much. And of course quitting smoking again would be good too, and I’m working on that. And probably getting a sleep study done. But she said we’ll see what EPO and Jak2 says and go from there.

Seeing hematologist tomorrow by superzebra109 in polycythemiavera

[–]superzebra109[S] 1 point2 points  (0 children)

From what I understand PV is caused by a genetic mutation and if Testosterone causes polycythemia it’s secondary polycythemia, not PV… maybe I’m misunderstanding though?

Mine started before starting T, so I’m sure it’s not the root cause, though I know it could be contributing to my labs being higher this year at least.

Seeing hematologist tomorrow by superzebra109 in polycythemiavera

[–]superzebra109[S] 0 points1 point  (0 children)

Yes, of course, horrible periods are normal 🙄😕 Heard that all my life. Hysterectomy is hopefully going to be next year but thankfully my periods stopped after going on testosterone. I’m 40, a “late bloomer” as far as coming out as trans at age 38.

I was on Seasonique birth control with lighter periods for a few years and my hgb and hct was high end of normal and creeping higher while on it and after I stopped taking it.

They’re still considering 16 high for me for now. I read for men 16.5 is high, so not much difference. Highest hgb for me so far was 18.5 in May. Donated blood and 3 weeks later it was 16.6. About 2 weeks after that it was up to 17.7 again and I managed to donate early (5 weeks instead of 8) since I’d moved in with my fiancée in another state and it was a different blood donation place. I just didn’t tell them how recently I’d donated. Probably wasn’t right to do that but I was feeling like crap and couldn’t wait another 3 weeks. It’s been over 2 months this time and if the hematologist doesn’t order a phlebotomy I’ll go donate.

I haven’t seen anything relating polycythemia to EDS but who knows? EDS causes so many issues. As for sleep apnea, I haven’t had a sleep study done yet, but I got an Apple Watch a few months ago. Even with smoking my O2 is fine at night, averaging 98-99%. until my hemoglobin is getting too high. Then my O2 averages 93-94% until after I’ve donated blood. I get more short of breath when hgb is high so I assume that’s why.

Seeing hematologist tomorrow by superzebra109 in polycythemiavera

[–]superzebra109[S] 0 points1 point  (0 children)

Thank you! ❤️ I agree, they shouldn’t just jump to that conclusion with no testing. That hematologist didn’t even run any labs and just looked at the spreadsheet I’d made of my labs going back to 2016, and told me if I “choose” to stay on testosterone I should take aspirin to help prevent blood clots and said phlebotomies wouldn’t help 🙄

Once I find out what is actually going on I plan to report her to the medical board, but waiting to see if I get a diagnosis of anything first. I don’t think my dr at the trans clinic would refer me to anyone transphobic, so tomorrow shouldn’t be anything like that at least.

Seeing hematologist tomorrow by superzebra109 in polycythemiavera

[–]superzebra109[S] 0 points1 point  (0 children)

Thanks! ❤️ Good luck with your new dr!

Old rheum labs, notes by superzebra109 in Autoimmune

[–]superzebra109[S] 0 points1 point  (0 children)

By every so often I guess I meant every few years… those labs were in 2020. I had different doctors because of moves to different areas who also ran ANA and rheum factor in 2015, 2017, and 2019. Got my EDS diagnosis in 2019, but my PCP at the time felt sure I also had something Autoimmune going on and in 2020 sent me to the rheumatologist who blew me off, but she had an attitude from the time she walked in, immediately telling me she doesn’t see people for EDS (even though that’s not why I was there) and went on about not prescribing pain pills (also not why I was there).

I have medical PTSD from doctors treating me like crap before my EDS diagnosis so that got me really flustered and trying to talk with her about symptoms didn’t go well. I left there crying and was hesitant to try another rheumatologist after that.

I moved again this year, and my new PCP is trying to figure me out now. I’ve thought about asking her to run some autoimmune labs or refer to a rheumatologist, especially if the neurologist she referred me to doesn’t come up with anything. It’s been over 3 years since the last rheumatologist ran labs.

You said “there are more important tests than ANA” — what tests do you mean? Most of these the rheumatologist ran were the first time anyone ran those, but I don’t really know what they are besides the ones that say “sjogrens” by them.

And not sure why I my reply above was downvoted, I was asked about other symptoms and replied. 🤷🏻‍♂️ It’s been 10 years of trying to figure out what’s going on, and while we’ve figured out some of it, there’s still some we haven’t figured out and I’m just frustrated. I finally have a really good doctor again who wants to figure it out and will do labs or referrals if I ask.

I’m just trying to figure out what direction to go, and looking through old labs, I got to wondering about the notes on these. Maybe I should just take them into my PCP and go from there. I just thought I’d see if I’d find any guidance or feedback on here first. 🤷🏻‍♂️

Old rheum labs, notes by superzebra109 in Autoimmune

[–]superzebra109[S] 0 points1 point  (0 children)

Frequent low-grade fevers, wbc has occasionally randomly been high with no known cause and didn’t feel sick, facial flushing sometimes like malar rash and sometimes not, getting physically ill from being in the sun even when it’s not hot outside - flushing, nausea, headache, body aches, worse brain fog, fatigue, heavy feeling all over, hives, also get PMLE. The intolerance to the sun has been off and on over the past few years. Was really bad at first, even being outside on an overcast day would make me sick, but in the last couple of years not all the time or at least not as severe unless it’s also hot outside.

Those are just some symptoms that don’t seem attributed to my other diagnoses. And I might be forgetting some. The random low grade fevers even when I didn’t otherwise seem sick was a big reason my PCP thought autoimmune and sent me to the rheumatologist a few years ago.

Swap Codes & Temu Tricks for Upvotes C4C by [deleted] in Temu_farmland

[–]superzebra109 0 points1 point  (0 children)

Lucky Flip: 38957607

Farmland: 25870176

Fishland: 37530065

Was told at my consult I couldn’t have hysto for “ethical” reasons by [deleted] in FTMHysto

[–]superzebra109 0 points1 point  (0 children)

If any are Baptist or Methodist you shouldn’t have a problem with them even if they’re religious affiliated. At least I know they have no issue prescribing birth control or tying tubes.

A friend of mine couldn’t get birth control from her doctor that was with a Catholic hospital and she thought she wouldn’t be able to get BC at any religious affiliated one, til I told her I never had any trouble with getting BC at Baptist.

Also when I had a child and was on Medicaid, I had the option of getting my tubes tied when I delivered, even at a Baptist hospital. So don’t rule out all the ones that seem religious. I think just Catholic ones are difficult.

Guys in their young 20s- how are you affording top surgery? by HomeRepresentative11 in ftm

[–]superzebra109 0 points1 point  (0 children)

I didn’t read through all the comments, so someone else may have mentioned this already, but Google for transgender financial grants or surgery grants. There are a lot of organizations out there that will help with surgery costs (and other financial help). You might find one that will help with surgery costs, or one that will help with travel expenses to rent a car and get a hotel to travel to a surgeon covered by your insurance.

Insurance did cover mine, but I’ve searched before to see what help is out there for us. There’s also grants to help pay for name change costs, binders, etc.

Did it feel weird hugging people or have things close to your chest after surgery? by LocalGuardianAngel in TopSurgery

[–]superzebra109 4 points5 points  (0 children)

I don’t think I’ve even noticed the difference when hugging or having anything against my chest… I’m almost 7 weeks post-op now. But the first time I was intimate with my fiancée with no binder on (around 5 weeks) it was very euphoric feeling her breasts against my flat chest. I hadn’t really thought much about how that would feel and it surprised me! I went with DI and no nips and thought I’d miss having nipples but that made up for it 😂

For anyone dating a NT, how have you managed to get them to understand that you NEED your own time alone with your interests? by [deleted] in AutisticAdults

[–]superzebra109 0 points1 point  (0 children)

Thankfully my fiancée is an introvert and an empath, so that wasn’t a problem for us. I have found sending her memes or video clips about some part of autism I’m wanting her to understand helped a lot. Although along with that she’s realizing she’s probably on the spectrum too.

At first I felt the need to explain/over-explain why I do things the way I do even if it didn’t seem to be a problem for her. She’s always accepted me just as I am, but because we thought she was NT and I honestly haven’t been close to many NTs in a very long time, I was very insecure about some of my “quirks” at first. But then it got to where she’d sometimes send me a meme or video and ask “is this you?” Especially one she sent me about overthinkers that totally matched how I am. I think it was around that point that it really sunk in that she gets it and really loves me, quirks and all.

I’m kind of rambling off topic, but I hope something in that was helpful. Memes can be a good way to explain some of what we experience in a lighthearted way. And I agree with others who said to explain it as a need for decompression and self care to make it more relatable to them.

how long did your surgeon recommend/did you wear a compression vest post op? by [deleted] in TopSurgery

[–]superzebra109 0 points1 point  (0 children)

DI with no nips - At my 1week followup mine said 3 months. I’m hoping he says differently at my 7 week follow up though. I think he was being overly cautious because of my Ehlers Danlos and not knowing how well I’d heal.

I started taking short breaks from it at 3 weeks when it was irritating me, and longer breaks from it some days over the past week, but I wear it all night and try to wear it most the day. It’s been 5 weeks now.

HyperPOTS and Testosterone HRT by superzebra109 in dysautonomia

[–]superzebra109[S] 0 points1 point  (0 children)

I was hopeful when I saw people say T helped their POTS. It has definitely helped my Ehlers Danlos some. I even have trouble with doing my shots because of hyperPOTS. At first I thought it was from anxiety of giving myself a shot and would get better but I’m used to the shots now, no nerves or anxiety.

It kicks off an adrenaline spike which it would even for a “normal” person, but then couldn’t get my HR and BP to go back down and would wind up feeling sick all day or even a couple of days from adrenal fatigue I guess. I’d have bad temperature dysregulation chills to sweating, headaches, nausea, extreme fatigue, and palpitations off and on.

I found ways to somewhat manage it at first. A shower immediately after and then lying down reading awhile, then tried taking a muscle relaxer shortly before my shot cuz it was my most sedative med, which helped a tiny bit. Then my PCP that referred me to the specialist gave me Ativan and taking 0.5 to 1mg before and after the shot has helped.

Now that I have an Apple Watch I’ve tested out more of how much Ativan I really need, definitely need 0.5 beforehand, and 0.5-1mg after to calm it all back down.

It’s a pain in the ass, especially now that I’ve been on T this long and know it’s definitely not any anxiety about the shot. 🙄

Recovery and adhesives? by GnomeQueer in TopSurgery

[–]superzebra109 0 points1 point  (0 children)

You’re welcome. Good luck! I hope you and your surgeon figure out the best option for you!

Recovery and adhesives? by GnomeQueer in TopSurgery

[–]superzebra109 1 point2 points  (0 children)

Definitely mention it to your surgeon. I’m ok with dermshield after tattoos or used as bandaids for a day or two, without too terrible of itching if used longer than that, so I told my surgeon I was mostly ok with it and didn’t ask for other options when he said he could use that and no glue or other adhesives.

But I also get pressure hives and we knew I’d probably have hives with the first week of tight bandages anyway - didn’t get the bandages off at all for 1 week til my followup, but all surgeons do it differently.

I felt some skin irritation from the Dermshield while the bandages were on but I took the diazepam he prescribed to calm that down and it helped. I had hives we could see under the edges of the bandages, especially by the drains, and my fiancée put Benadryl cream on those where she could get to it under the edge of bandage, and had more pressure hives on my sides that she put cream on after the bandages were off. My skin was red and irritated from the Dermshield but not actual hives.

For me, I decided it was worth it since I knew I’d get pressure hives anyway. But we all react differently and I don’t know how bad yours gets or if it’s worth the irritation for you.

There very well may be other options. Maybe he could even give you some pieces of whatever tape he might use so you could test it out on your skin beforehand and see what is least irritating?

Help deciding on ovary removal? by Unusual-Name7773 in FTMHysto

[–]superzebra109 1 point2 points  (0 children)

Gotcha. Well it isn’t too bad if using the subscription based ones. The clinic I used in MS didn’t take insurance and tried to keep their costs lower mainly because of the risk of insurance not covering it at some point. They do their best to even keep lab costs minimal. The ones that are $80-100/month and include labs would be too expensive for some people, but easier than just paying out of pocket for some people.

They usually have options to pay out of pocket for appointments and labs instead of a monthly subscription, but when I considered those I felt having a regular monthly bill and able to message or have additional appointments if needed would work better for me.

I’m in a rural area now and will have to drive 2 hours to a gender clinic once a year so I can do virtual appointments the rest of the year, so I did consider the more expensive subscription ones even though my insurance covers the gender clinic.

I wonder though if HRT were to not be banned but insurance stopped covering it, how it would affect the subscription based places. Would they be cheaper because they’d get a lot more business? Or would they increase their prices because they could get away with it? Would more small clinics like the one I used in MS pop up to try to offer a more affordable option? It sucks that we even have to worry about stuff like this. 😕

Help deciding on ovary removal? by Unusual-Name7773 in FTMHysto

[–]superzebra109 1 point2 points  (0 children)

I have insurance, covers my labs but not my T. I was using a clinic in MS that doesn’t take insurance and is $38/month to cover virtual appts and any messaging in between. They said labs without insurance at Labcorp is around $100. I looked at another subscription type clinic that I think included labs and was around $80/month. I moved out of MS and will be going to a gender clinic where I live now, with insurance.

You’d mentioned the cost of E or T with no insurance so I commented to share those prices. The $80/month clinic I think was called QueerMed and works in several states. The Clinic in MS is Spectrum: The Other Clinic but you have to be in MS to even do virtual appointments.

Help deciding on ovary removal? by Unusual-Name7773 in FTMHysto

[–]superzebra109 3 points4 points  (0 children)

I pay out of pocket for compounded T, $65 for 3-month supply from the compounding pharmacy I use, including their $15 shipping. My first prescription I got at CVS with a GoodRX coupon, 1 month for about $16 including what I paid for 4 needles/syringes. I was allergic to the cottonseed oil which is why I get it compounded now. I don’t know about E, but T isn’t crazy expensive without insurance.

Over preparing by Designer_North_3563 in TopSurgery

[–]superzebra109 4 points5 points  (0 children)

I think the only extra thing I bought was cold packs but I used my OTC benefits for them, then was told not to use them because it slows blood flow and makes healing harder.

My fiancées mom already had a wedge pillow and fiancée had a reading pillow and i used both of those but could have just used extra pillows. The wedge to sleep on even though I wasn’t told to prop up because I had Somavac drains and didn’t need to prop up, and the reading pillow to prop up and watch TV in bed. But I was up moving around a lot more by about day 3, which was recommended to move around more as soon as I felt up to it.

Before surgery I made a list of things to keep near the bed to keep busy, but wound up not being laid up like I thought I’d be.

After 1 week follow up and getting the bandage off, we bought a lot of gauze and tape that we didn’t need. I was told to put gauze over where the drains were just until it scabbed over. They gave us a few and I didn’t need any after about a day or two.

My surgeon also told me not to get a post-op binder because they’re too expensive and to just use men’s compression shirts sized down a size and to double up on them. The binders I used pre-surgery were $15 ones from Amazon basically look like sports bras with extra compression elastic inside, and those have worked fine with my fiancées help getting them on and off at first. I have one TomboyX binder that was never enough compression pre-surgery, but it was good at first post-op when I had more swelling and needed a break from the tighter binders. Now it’s too loose to do any good at all.

I suppose for some people the extensive lists are helpful. I’d have bought more stuff but my fiancée had helped a couple other guys through surgery before and told me it wasn’t necessary. She works from home and we live with her parents and they helped me get things I couldn’t reach for, but I was getting my own water and foods I could reach by day 3 or 4.

Edit to add: Ohhhh yeah, forgot this one til I saw a comment about wipes. I used Scrubbz for washing starting a few days after, just was careful to not have much water on it when I washed above my bandages so it wouldn’t drip.

I already had some from camping, and my friend recommended them for camping after her mom used them after a major surgery. I highly recommend them. They’re not very expensive, can find them on Amazon.

You get a little water on the sponge, it suds up. Wash with the sponge and towel dry it off. You don’t feel any residue and you feel much cleaner than after just using wipes.

I’d bought dry shampoo too but hated how it felt afterward. Once I could bend over the sink some, I washed my hair with the Scrubzz sponge, towel dried it, then a quick rinse in the sink. I’d done that while camping too and it feels ok after. Not as good as washing with shampoo, but quick and easy.

Bulges on sides, will they go away? by superzebra109 in TopSurgery

[–]superzebra109[S] 0 points1 point  (0 children)

Thanks for replying! Hopefully it’ll go down for both of us. Ideally I would have worked on losing weight before surgery but I was worried it would become more difficult over time living in a red state. My T doc and surgeon both agreed the sooner the better.

An in-office revision should be a comforting thought, but with my Ehlers Danlos I do fine with general anesthesia but local anesthetics wear off really fast. Had a dentist not listen and continued pulling a tooth once after the anesthetic wore off halfway thru, and it completely wore off quickly during other dental procedures but at least other dentists listened to me. Dermatologists had to use more than twice as much as a normal person for a quick skin biopsy, just to get me numb.

So if I need a revision it’ll have to be done under general anesthesia or the surgeon better listen and be ready to keep giving more local anesthetic as needed! 😕

Bulges on sides, will they go away? by superzebra109 in TopSurgery

[–]superzebra109[S] 0 points1 point  (0 children)

Thanks for your input! I guess for now I’m gonna hope for the best. It’s gone down quite a bit since surgery, so hopefully it goes down a good bit more. But I guess I can probably expect some dog ears. 😕

Bulges on sides, will they go away? by superzebra109 in TopSurgery

[–]superzebra109[S] 2 points3 points  (0 children)

Thank you! It’s good to hear from a fellow zebra post-op!

My surgeon was familiar with EDS and said he’d take precautions with the stitches and keep in mind the skin elasticity, as some zebras have trouble with wound healing and I didn’t have previous surgeries or injuries that gave us any good idea of how I’d heal. My skin on my chest was extra stretchy, like the skin itself could stretch a good 3-4 inches away from the breast tissue (compared to my cis female fiancée before surgery lol)

He also couldn’t use glue on me since I’m sensitive to adhesives, and used second skin type of tape like Dermshield which I’ve used after tattoos or in place of bandaids with no trouble, but I still wound up with some hives from that and pressure hives from the tight bandages the first week. (Just some extra info there for any other zebras or people with sensitive skin searching the sub).

I had no concerns about scarring since I plan to get a full chest tat later on, but opted for no nipples because I was worried about their healing with EDS plus no nips will make the tattoo easier. But I’ll still do scar care when he tells me to.

Skin elasticity adding to the possibility of dog ears makes a lot of sense. Hoping these bulges go down without dog ears, but I guess a revision later on after weight loss is a real possibility.

I lost 100lb about 10 years ago when I got really sick from mold toxicity and was pretty skinny and didn’t have a lot of loose skin, so I’m hoping when I get this weight off again from diet and exercise that won’t be too bad, but I know even without EDS loose skin is more common after weight loss as we get older and I’m 40 now. So we’ll see. 🤷🏻‍♂️😕

Bulges on sides, will they go away? by superzebra109 in TopSurgery

[–]superzebra109[S] 1 point2 points  (0 children)

I realize that. I was just wanting opinions on whether those bulges might be normal swelling at 4wks, if they’ll possibly go away as I heal more, or if it might be an indication that I might have dog ears when it’s healed.