My most recent labwork results from my endocrinologist are alarming...
Despite my spiro and estradiol patch,
my testosterone is very high: 886 ng/dL
Has anyone ever had a problem of their testosterone going up while on spiro and E?
Does anyone have any explanations or theories or guesses for how this could happen?
History and more information/context:
I am 33 years old. I started my transition with herbal supplements (many different ones) about a year ago because I could not find a therapist (for the HRT letter) that accepted my insurance.
Then 6 months ago I finally got a letter and my endo to prescribe the first step, spironolactone. She started me at a very low dose of spiro, and no estradiol at all, so I continued the herbal supplements.
Then 3 months ago (the first follow-up after starting spiro) my testosterone was tested and was found to be 34 ng/dL (despite the very low dose spiro, and maybe because of herbals?). So my endo finally prescribed me the estradiol patch, and also raised my spiro dose even though my T was already acceptably low on the low starting dose of spiro. With the addition of E and the increase in spiro, it seemed wise to stop my herbals and allow the prescriptions to do their work. I stopped all of them but licorice root and saw palmetto.
So 3 days ago was my second follow-up, and the lab results show that my estradiol is 54 pg/mL, and my testosterone is 886 ng/dL. My endo has accused me of not taking my pills, but I have never missed even a single dose! I am very distressed and totally confused. My endo is not very friendly or open-minded at all, and I don't know how to convince her to believe me. I can hardly believe it myself.
She won't consider alternatives to spiro, and it seems like spiro has stopped working. I think it would be very difficult and possibly expensive to try to change doctors.
I appreciate any/every kind of explanation or advice.
My T went up on Spironolactone, too. Chopped the nuts off, now I'm at perfect female ranges.
Hugs, Devlyn
Spiro doesn't always cause a drop in Testosterone levels. In those cases it still gets in the keyhole and keeps Testosterone from getting in there. Often when this happens another blocker is used but sometimes the doctor just stays with Spiro because the Testosterone isn't able to do anything. If you have a routine where you take both pills at the same time, mention it to your doctor and explained that a missed dosage should be reflected in your estradiol levels.
Thank you for the responses.
It is interesting the way you describe the blocked but not suppressed testosterone.
If that is what is happening with me, then I might actually consider that to be an advantage. Because that way, perhaps the testosterone which cannot be used may be aromatized and help with my innate estrogen production. Although, I guess I shouldn't actually make that assumption since my estradiol level is still lower than it needs to be, even with the patch.
One other potential advantage to that particular situation is the way in which it sounds similar to bicalutamide. I realize all of this is barely covered by sufficient scientific research, but bicalutamide describes something similar in the Wikipedia page. It says it blocks the androgen receptor, but not the androgen production. And that as a result of this, fertility is not harmed despite feminization of the body. This would be my ideal solution, at least for a few years, but I haven't been able to get my doctor to consider bicalutamide because she says it is not in the "standards of care." I would be happy if it turned out spironolactone with a high level of testosterone was creating the same condition in me. But I guess I'd have no way to know if that was true.
While, I don't dispute one possible explanation being that, as in the explanation above, the testosterone is still being produced but it's not able to be used....
In my case I don't believe that is so. The one immediately noticeable symptom I have noticed in the last couple of weeks, and especially in the last few days, is that my libido and spontaneous erections have been increasing a lot. Which, even if that was the only change, it is an unwelcome one.
I tried to research this phenomena of spironolactone seeming to work in reverse, and although Google primarily gave results of completely generic explanations of spironolactone, I did find at least one article where the doctor at a transgender clinic frequently encounters this problem.
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For me, removing the source of the T produced a result I could feel almost immediately. Blocking the T had not produced that effect.
Quote from: Dena on May 14, 2018, 05:54:04 PM
Spiro doesn't always cause a drop in Testosterone levels. In those cases it still gets in the keyhole and keeps Testosterone from getting in there. Often when this happens another blocker is used but sometimes the doctor just stays with Spiro because the Testosterone isn't able to do anything. If you have a routine where you take both pills at the same time, mention it to your doctor and explained that a missed dosage should be reflected in your estradiol levels.
My doctor wanted to see my T numbers down and suggested the orchi. Neither she nor I put much stock in the "Blocked is fine" mindset.
It seems to make more sense that spiro doesn't work for some people. If it was doing its job by simply blocking the keyhole, why do some people see a reduction in levels?
Quote from: Devlyn on May 18, 2018, 11:25:39 AM
It seems to make more sense that spiro doesn't work for some people. If it was doing its job by simply blocking the keyhole, why do some people see a reduction in levels?
Because they have adequate E levels to suppress T production and don't actually need the spiro.
In many cases, spironolactone does not reduce T levels or to any significant extent. This has been reported in two recent papers on transsexual women taking spiro + E. It will however block androgen receptors and as a result, if not much E is taken, increase LH and T production, much like bicalutamide. The thing to focus on is symptoms...if you notice things like skin becoming oilier, hair still growing fast and thick, testicle size not shrinking, libido still raging, ejaculate thick and white, then you know your T is still too high.
Quote from: PurplePelican on May 18, 2018, 12:56:53 PM
Because they have adequate E levels to suppress T production and don't actually need the spiro.
I suspect this in my case. My Dr. still wants me to take the Spiro though. I may reduce it on my own by half again to see what happens.
A few years ago when I was DIY I took E with no spiro. During that time my dysphoria reduced just the same as with spiro. Unfortunately, since I was unsupervised I don't know what my hormone levels were but physical symptoms suggest that the T was reduced a lot.
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I guess I was lucky. Mine dropped from 14.8 (app 450) to 7.4 (app 235) from October to March.
Thanks again for everyone's responses.
It's kind of an odd feeling, but I appreciate it for its scientific and medical puzzle, while also despairing a bit at the complication in my own treatment.
Indeed, the quickest and best treatment would be the orchiectomy, but I've read about some SRS surgeons that prefer you not to have an orchiectomy before SRS. That's the main reason I'm going to try to wait, too keep my SRS options open.
As for watching symptoms to figure out what's really happening, it may be too early to tell, and it may be paranoia or confirmation bias of some kind, but I seemed have more loose hair in my hairbrush this morning, after having noticed a reduction in loose hair in my brush over the last couple of months. The one thing I'm sure of is that my libido seems to have come back with a vengeance after being zero for a couple of months.
As an update in the communication with my doctor, the good news I finally convinced my doctor to write me a prescription of finasteride, which she had disregarded in previous discussions because she said it was unnecessary to combine it with the more effective spironolactone.
The bad news is the planned increase in my estradiol dosage has been delayed until another blood work can be done to check my testosterone again in 2 months. That doesn't make sense to me. I sort of casually mentioned that we could add progesterone because I had read online that it may have some anti-androgen effect. She said she would look into it.