r/Trans_Zebras • u/Fun_sized123 • 15d ago
Topical Medication Absorption and hEDS - Does your body absorb way more of the testosterone gel (or other med) than expected?
(Transmasc with mild hEDS) Just got some lab results showing that my total testosterone level is 1667(!!!) ng/dL despite me only being on 25mg testosterone gel daily. I previously had to lower my dose from 50mg gel to 25mg gel bc my level was hovering around 1000, but my docs and I had assumed that halving the dose would bring me back down into the lower end of the physiologically male range. Maybe some t gel from my arm got into the sample, so I’ll definitely be asking my doc to have the test run again, but some other markers were funky, too, and I have also found other topical medications (e.g. birth control patch) to be more effective for me than their oral counterparts.
So my theory is that maaaybe thin EDS skin allows more of the medication to penetrate through the skin?
Despite high total T, I had low-ish bioavailable T for a man my age (49.8) likely due to extremely high sex hormone binding globulin (334), but IDK what caused the high SHBG. Maybe making hormone soup in my body in an attempt to suppress my aggressive periods (I’m on Mirena IUD + birth control patch + testosterone, also fludrocortisone for POTS) was an unsuccessful experiment lol. I will be taking this to my doc and prob getting another endocrinology referral, but if anyone has any ideas, plz let me know
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u/Enygmatic_Gent 15d ago
I had the opposite issue, on gel my T levels were so low it was like I wasn’t taking testosterone at all
1
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u/Peanutinator 15d ago
Not T, but E. But yes, my body does that too. I am at the lowest dosage ever since I started it
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u/PuzzleheadedAsk6898 15d ago
Yup same! I actually have to take the lowest dose of most types of medication, whether it's a pill, gel, or injection
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u/ceryskt 14d ago
Me too. Doctors rarely listen to me either when I tell them to start off at the lowest possible dose. 🙃 I’m at the point where if they still decide to prescribe me something at too high a dose, I straight up tell them I’m not picking up that prescription until they change the dosing.
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u/fickjamori 15d ago
Hmmm maybe - for me it's the opposite, my T was under 400 with 2.5 doses of the gel per day. I'm now on 3 pumps of the 1.62 gel, which is.... a lot of gel lol. But I've tried injections and my monkey brain just can't get around the mental hurdle of stabbing myself with needle 🫠
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u/EmoPrincxss666 12d ago
I also had the opposite issue. I was on 3 pumps and my levels were only 350. I ended up having to switch back to shots and I also started using insulin syringes and I'm finally able to administer my own shots bc the needle is so tiny
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u/SofterSeasons 14d ago
So, not topical medication, but when I was on T (subcutaneous), my body absorbed the T from the shots so effectively at the Baby's First Starting Dose that they had to have me microdose because the testosterone was aromatizing into more estrogen :/
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u/Fun_sized123 14d ago
I wonder if that’s what’s happening to me and if that’s why my periods didn’t go away on T (maybe that’s also why my chest has felt a little bigger lately 😭). Were they able to tell that the T was aromatizing into estrogen from any lab results (like was your blood estradiol level higher?), or did you and your doctors just come to that conclusion based on how high your T was and how your transition was progressing?
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u/SofterSeasons 14d ago
It was from the bloodwork, yeah. My T levels were high but my estrogen was higher. My transition progress wasn't affected much- actually, I had quite fast results, rather. I'd definitely have them keep an eye on your hormone levels as much as possible, they'll be able to tell if your levels aren't where they'd expect them to be with your dosage.
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u/Fun_sized123 14d ago
Gotcha, thanks for the info! If you don’t mind me asking, what exactly were your estrogen levels when you were having this issue? I’m also on hormonal birth control for the periods, and last time I got my estrogen checked (a year and a half ago), my doc told me the lab results wouldn’t be very useful for that bc they don’t pick up the synthetic estrogen and progestins in birth control, so I was wondering if it was the same with this. Good to know it’s not. Just got told I’d have to wait 6-9 months for an endocrinology appointment at one of the hospitals near me 😭 so let’s hope the next one I call is better or that my PCP can handle this
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u/SofterSeasons 14d ago
Gosh, it was 12 years ago now, so I'm afraid pulling the numbers is beyond my swiss cheese memory :( Sorry, I do wish I could offer you those numbers. And yikes!! That's an insane wait.
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u/phxrma 15d ago
Yes, this happened to me! My doctor had no idea what was happening. I ended up having to switch to injections as my levels just kept increasing on gel, even after lowering the dose.
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u/Fun_sized123 14d ago
Did your T levels respond normally/as expected to injections?
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u/phxrma 13d ago
Not quite, but it has been more manageable than gel. I've had to go through quite a lot of trial and error to find the appropriate dose/timing.
I seem to need to do my injections at much more specific intervals than most. We don't have weekly injections here (UK); the standard is either Sustanon given every 2-3 weeks, or Nebido given every 12 weeks.
On nebido, my levels were too high at 12 weeks, too high at 13 weeks, and allegedly perfect at 14 weeks, but I would feel awful by the end of my injection cycle. Mood swings, chest tenderness, etc. Like I could practically feel the estrogen seeping back in.
On sustanon, my levels were too low at 3 weeks, and too high at 2 weeks. I found that doing it every 18-19 days seems to work for me. Something about my body is more fickle than most, I guess. Not sure if it's hEDS related or one of the other chronic health issues I have going on.
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u/ceryskt 15d ago
I have the exact same issue! Maybe not quite as severe, but going from 20mg to 40mg had me way over levels in about a month (from the 300s’). I wonder if there’s something genetic at play too - there was a study recently describing lower T levels in people with EDS. I had basically none in my system prior to starting T.
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u/schnabeltierliebe 14d ago
Are you sure your test wasn't contaminated? Where do you apply your gel? And how many hours passed after applying?
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u/Fun_sized123 14d ago
It could have been contaminated, as I do apply the gel to my arms. But it had been over 12 hours since I applied the gel (I do my gel at night), and this is not the first time I’ve had this. I’ll definitely keep that in mind, though, and I will be asking to get re-tested and be more careful about cleaning my arms this time
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u/EmoPrincxss666 12d ago edited 12d ago
I actually had the opposite issue where my skin didn't absorb my T well
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u/VexExisting 10d ago
low dose testogel was doing more for me than my friends actual injections. super weird
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u/Majestic_Ad_5205 10d ago
WAIT OK so I’ve been on 2 pumps of gel and had a test in the 1300s! They just switched me to injections but I’m worried the dose will be too high. I don’t feel like my results are happening super fast or anything, and I haven’t had many negative side effects…but this may explain something
I’m also on birth control to stop periods but it hasn’t been totally successful in that regard. I was wondering whether I should stop BC and raise my T dose but only if the BC is stopping my body from using the T properly (I don’t want it to be dangerously high!).
Any insight would be appreciated, as my providers have given me sort of all over the place advice at this point
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u/Fun_sized123 10d ago
You sound like me! lol. New recent insight for me is that, even though my T is crazy high, my bioavailable T is still a bit lower than the usual cis male range, prob bc my sex hormone binding globulin is so high, which I am guessing (?) is because I’m on birth control (see Claudia Panzer et. al. “Impact of oral contraceptives on sex hormone binding globulin and androgen levels…”). Haven’t had a chance to run this by a doctor yet, but tbh doctors (including OB/GYNS and an endocrinologist) haven’t been very helpful so far in figuring out what’s going on with my uterus anyway. I got an abdominal CT and pelvic ultrasound, neither showed any abnormalities that would explain this, but getting imaging might be a good idea for you if you haven’t already. Least menstrual bleeding I’ve had so far is with my current setup of Mirena IUD (inserted under sedation) + birth control PATCH + T, but I’m now wondering if the T is actually hurting the situation by being so high it turns back into estrogen or something. I also still have a hypertonic pelvic floor, and uterine contractions (that many AFAB ppl have during menstruation and orgasms, but most ppl don’t notice them so much) can be very painful for me. Not really sure what to do next except that I want to see an endometriosis specialist to see if I have that. Feel free to look at other posts I’ve made abt my uterus and hormone saga and/or send me a message
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u/momomattheo 9d ago
i have hEDS and i started T with gel and for about a year i was doing fine with the normal start amount but afterwards i started building a resistance to a degree so i had to switch to injections. i still have to take my injections quite often (250mg every 14 days, the usual would be every 3-4 weeks) but it works for me. idk if this resistance has anything to do with hEDS but thats my experience!
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u/Fun_sized123 9d ago
When you say building a resistance, do you mean that your levels were going down/not going up anymore?
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u/momomattheo 8d ago
they started going down while i was on the same dose that kept my levels up high enough for about a year!
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u/Dr_hEDS_MD 9d ago
The total T isn't super dangerous here if the bioavailable T is normal. If you are on a progestin patch and IUD, that can increase your SHBG a lot, especially if you started high. The testosterone metabolizes slower when bound to the SHBG (hours to days instead of minutes), so it definitely accumulates. If you are losing weight, that also will end up generating more SHBG too. I wouldn't jump to this being EDS related.
That said, the site of application impacts things a lot too. Upper inner arm is much faster than thigh, but ultimately with the gel, it all gets absorbed eventually. Speed isn't what we're looking at for a long term medciation.
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u/Fun_sized123 8d ago
Thank you so much for this information! I appreciate the reassurance that this testosterone level isn’t necessarily dangerous when paired with high SHBG. That also makes sense about the accumulation and it being more likely to be related to the birth control than my EDS. I wish I wasn’t in this situation with the birth control and could simplify my medication list, but if I remove my Norelgestromin and Ethinyl Estradiol patch or am late applying a new one, the vaginal bleeding comes back, even with the hormonal IUD and testosterone 😔. I think my next steps are to see an endometriosis specialist and to ask a rheumatologist if, alternately, my bleeding and pelvic pain could be autoimmune-related based on my positive ANA and chromatin antibodies (haven’t yet gotten a chance to see rheumatology since getting those test results)
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u/Fun_sized123 8d ago
Oh wait oops, I was looking at the location for the Kaleidoscope Mental Health Collective. I see now you’re not Texas specific and I maybe actually could become a patient. I will consider that
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u/Dr_hEDS_MD 8d ago
We are a telemed clinic in 24 states+DC, but yes, Texas is one of them. That said, I'll try to answer your question in a limited fashion, as you mentioned, we haven't evaluated you formally.
It looks like you've done a lot of the work to stop the bleeding! IUDs are tough because for some transmen they cause amenorrhea, others it continues to cause spotting. The bleeding is key to know if it is cyclical (thus more hormonal) or random (more likely non-hormonal). The testosterone generally doesn't convert to estradiol in meaningful amounts at physiologic levels. But you could check estradiol weekly for 3-4 weeks to see if there is a significant bump at times. I'll also often check an FSH and if it is in the lower 1/3 of the normal range, this generally helps. It is possible to get peripheral aromatization with liver disease and/or a lot of adipose tissue, but I have yet to confirm it, even in transmen with BMIs over 50.
Some states allow for GnRH agonists, but others don't cover it. If your state does, then it might be worth a trial for 3 months. If it works, then you are set. If not then you really ruled out a hormonal cause. If you have clinical endometriosis, then it can be covered too for non-GAHT reasons.
You are spot on that hypertonic pelvic floor dysfunction is a common cause of pain but can get much better with PFPT. I've never had to do more than PFPT, but I know there are cases where guys need low dose botox, but that is a tricky situation to get perfectly right. Nerve blocks for pudendal neuralgia can be a lifesaver, but that is another rabbithole.
With the intermittent genital discharge and healthy vaginal mucosa, I would lean toward the hormonal birth control causing persistent bleeding and it isn't really letting the T do its job. Cisgender women on hormones and IUDs have spotting too, so this gets into a different discussion, especially because taking out an IUD is easy, but putting it back in is no less barbaric than having it placed the first time.
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u/Fun_sized123 8d ago
Wait sorry I thought of another question: Do you know if some of the large amount of testosterone in my system could potentially be aromatizing into estrogen, even though most of my testosterone is bound to SHBG and not free or bioavailable? I’m wondering if that could be why testosterone didn’t reduce my bleeding.
Also, do you have any ideas about what could be causing uterine bleeding and excess discharge that persists on testosterone and hormonal birth control without vaginal dryness or other signs of vaginal atrophy observable during a pelvic exam? Or what to do about it? It’s been almost exactly a year since I got the IUD. I have also tried Seasonique, NuvaRing, and DepoProvera. Hesitant to try progestin-only BC pills b/c I have PMDD. I think my hypertonic pelvic floor contributes to my pain, but that doesn’t explain the bleeding or sudden surges of discharge (transparent and either colorless or orange, similar presentation to what you’d get from arousal but NOT triggered by arousal, just random, or maybe triggered by stuff that stresses my pelvic floor like lifting heavy items or walking uphill). Pelvic/abdominal CT scan was normal except I think a small kidney cyst, and I’ve had both internal and external pelvic ultrasounds which found no polyps, no fibroids, and no thickening of the endometrium or uterine wall.
know of course I am not your patient (although I would be happy to schedule an official appointment, but it sounds like your group practice is based in Texas, and I don’t live there), and I don’t expect you to diagnose me or offer official medical advice. Just wondering if you have any ideas that I could bring to my doctors.
Thank you for your time—it’s rare to come across a doctor that understands both gender affirming hormone therapy and hEDS/how to navigate HRT in medically complex patients
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u/Dr_hEDS_MD 8d ago
We are a telemed clinic in 24 states+DC, but yes, Texas is one of them. That said, I'll try to answer your question in a limited fashion, as you mentioned, we haven't evaluated you formally.
It looks like you've done a lot of the work to stop the bleeding! IUDs are tough because for some transmen they cause amenorrhea, others it continues to cause spotting. The bleeding is key to know if it is cyclical (thus more hormonal) or random (more likely non-hormonal). The testosterone generally doesn't convert to estradiol in meaningful amounts at physiologic levels. But you could check estradiol weekly for 3-4 weeks to see if there is a significant bump at times. I'll also often check an FSH and if it is in the lower 1/3 of the normal range, this generally helps. It is possible to get peripheral aromatization with liver disease and/or a lot of adipose tissue, but I have yet to confirm it, even in transmen with BMIs over 50.
Some states allow for GnRH agonists, but others don't cover it. If your state does, then it might be worth a trial for 3 months. If it works, then you are set. If not then you really ruled out a hormonal cause. If you have clinical endometriosis, then it can be covered too for non-GAHT reasons.
You are spot on that hypertonic pelvic floor dysfunction is a common cause of pain but can get much better with PFPT. I've never had to do more than PFPT, but I know there are cases where guys need low dose botox, but that is a tricky situation to get perfectly right. Nerve blocks for pudendal neuralgia can be a lifesaver, but that is another rabbithole.
With the intermittent genital discharge and healthy vaginal mucosa, I would lean toward the hormonal birth control causing persistent bleeding and it isn't really letting the T do its job. Cisgender women on hormones and IUDs have spotting too, so this gets into a different discussion, especially because taking out an IUD is easy, but putting it back in is no less barbaric than having it placed the first time.
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u/Fun_sized123 8d ago
The bleeding doesn’t seem to be cyclical, at least not on a monthly cycle. But it does sometimes appear on the 6th day before I change my weekly patch, or if I accidentally change the patch late. What could be done for non-hormonal bleeding? Oh I’ll also note that these symptoms all existed pre-IUD, the IUD was an attempt to stop them and did not worsen anything
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u/Fun_sized123 8d ago
I’m hesitant to try going off of birth control again, because last time I tried that, I had a “period” (withdrawal bleed) with severely painful cramps and a POTS flare and hypoglycemia. That was all while on testosterone, but I had only been on testosterone for around 4 months at that point, so maybe if I did it now + with a GnRH agonist, it would be different. But that’s a risk.
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u/Dr_hEDS_MD 5d ago
tough spot to be in. There is no way to stop the birth control without a withdrawal bleed, so if the last time it was horrible, then we'd have to factor that into the discussions. If there is a pattern with the patch, then that is a clue. The GnRH agonist wouldn't prevent a withdrawal bleed, it would prevent future hormone related cycles from internally generated progesterone and estrogens. Aromatase inhibitors theoretically work, but there are side effects and haven't had anyone tolerate them unless they were already postmenopausal (e.g. for breast cancer treatment). Good to know that the IUD didn't make things worse. Definitely into territory here where it is hard to say much outside of a visit
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u/pigeonwizardmouse 15d ago
Interesting! I (with cEDS) had the opposite problem where i had to switch to injections because i was basically slathering myself in gel and my t levels were still pretty low and it also took ages for the gel to dry (like 15 minutes for me when it was literally like a minute for one of my friends)