Author Topic: Dumping spiro completely? Thoughts on HRT without antiandrogens?  (Read 1921 times)

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Offline Idaliaylix

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Hey all,

So, recently I've had an epiphany of sorts regarding my HRT treatment.  I've been on HRT for over five years now, which at this time consists of estradiol cypionate injections once a week, micronized progesterone, and spironolactone, both daily.

I've always had markedly low testosterone since starting HRT (and it wasn't exactly sky-high to begin with).  I seem to be extremely sensitive to spiro, as even very low doses in the beginning completely nuked it.  When I say low, I mean low, often single-digit levels, on the very lowest end of the standard female range.  My doctor (who is a good GP, but not an endocrinologist, and with regard to HRT is more-or-less a glorified informed consent clinic) has never seen any issue with this, having the single-minded, simplistic mentality of "testosterone is bad for trans women and the lower the better".  I'm afraid, though, that it has probably been exacerbating my depression symptoms, primarily fatigue.  I suffer from crushing fatigue on every level (cognitive and physical) that I'm prescribed multiple stimulants to treat.  I'm sure that this is mostly a symptom of my severe, treatment-resistant depression, but I have a strong feeling that such low T is and has always been making it worse.  Disconcertingly, I've even been bedridden for long stretches of time over the past several years due to this, even had my thyroid checked to determine if that was the cause (it's not, everything came back normal there), and come to think of it, it started or drastically worsened around the time that I began HRT.  This might sound melodramatic, but it's one of a few factors that has practically ruined my life.  My executive function is totally shot and has been for quite a while.   :-\

Depression is also listed as a potential side effect of spiro itself, and I'm a little uneasy with the fact that, unlike my bioidentical E and P which I just happen to lack ovaries to produce, spiro is an exogenous drug with its own adverse effect profile even aside from the endocrine effects it exerts.  Something else that gives me pause around antiandrogens in general is that these regimens that include them were never really designed for women like me--that is, young, non-op women who never even intend to undergo an orchi.  They were intended for women on a definite path to eventual orchi/SRS, not to stay on indefinitely for life.  The thing is, too, progesterone has antiandrogenic effects in itself, and I take a high dose and don't cycle it (more on that below), so I suspect that might be sufficient.

Said fatigue (especially the demotivational aspect--even on decent doses of an amphetamine-based med I've been unable to get anything meaningful done) has become even worse in the past couple months, as has my overall mental health and general wellness.  My hair is really thinning, suicidal ideation is more intense than it's ever been, and these and other issues I've noticed are likely, as far as I can discern, resulting from a combination of the higher amphetamine doses I've been taking to cope and the endocrine wonkiness and low T in itself.  The last time I had bloodwork done to assess levels, in mid-February, my T was actually undetectable, <3 ng/dl!  Even for me, that's a first, and that can't be healthy or sustainable.

The main thing that has changed, that I can think of, is that my progesterone dose increased by 50% about a month and a half ago.  Given the aforementioned antiandrogenic effect of progesterone, I conclude that this caused my T to plummet even from where it was, leading to these terrible symptoms I've been dealing with.

I've come to the realization that I may need to just totally get rid of the spiro once and for all.  I'm on a fairly low dose as it is compared to most other women in my position, have already decreased it once, and I imagine that just the E (esp. now that I'm on injections) and progesterone (which I take a relatively high daily dose of) should be sufficient to keep the T where it needs to be.  It's occurred to me in the back of my mind before that my T has always been too low, but honestly, I'm a bit scared and apprehensive to drop the spiro from my regimen completely.  The very last thing I want is more body hair growth and such--the mere prospect of that is dysphoria-inducing.  I've been fortunate not to have much body dysphoria since settling into a stable HRT regimen.  Intellectually I realize that it shouldn't be  a problem as long as my testosterone is within the normal female range, but it's an emotional, irrational block that's prevented me from addressing this elephant in the room with respect to my physical health.

I'm also pretty irritated, having finally admitted this to myself.  I'm frustrated that my doctor has let this happen because of a one-size-fits-all approach to HRT, and I wish it would've been more specifically tailored to my needs as an individual patient.  I was 19 when I started, my T levels weren't terribly high even then, and I can't believe they were okay with me having such abysmally low levels forever.  It shakes my faith in their (I see a main doctor and a rotating cast of PAs) competence, which is another reason why I think I've avoided addressing this for so long despite knowing on some level that it could be contributing to my psychiatric problems, a suspicion that has been confirmed in the past month or so.

I suppose I was just curious if anyone here has had a similar experience with spiro, or any thoughts or advice about managing HRT going forward sans any antiandrogens, as a non-op woman who is retaining her testes.  I know that it used to be common practice just to prescribe high doses of E to trans women, but for whatever reason AAs have long been the standard.  I never even really considered this to be an option, despite staying informed and doing a ton of research on HRT, because spiro was just presented as an inherent element of how things were done.  Thanks in advance.
"…what I seem to be is the monkey wrench in the machinery of everyone’s sexual politics…it gets awfully frustrating at times.  What I really am is a paradox in that “transsexual” just doesn’t fit into my identity, who I am to myself.  In other words, what I’ve been through is terribly interesting, but I have no interest in using it to say who I am."

"The transsexual experience, while a major survival issue, is not the central identity-defining factor in our lives, even though it is seen as what makes us different from other people. Despite its magnitude and intensity, it is, in the long run, merely a preliminary step to getting on with our lives."


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Offline Deborah

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #1 on: March 02, 2018, 04:16:24 am »
Over the past six months I have reduced my spiro by half and my T has stayed at <3 ng/dl.  I am planning on reducing it again after my upcoming doctor’s appointment.  Others here also have written of reducing or eliminating spiro without their T going back up.  There have been two threads on the subject within the past week. 


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Offline PurplePelican

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #2 on: March 02, 2018, 05:08:26 am »
Over the past six months I have reduced my spiro by half and my T has stayed at <3 ng/dl.  I am planning on reducing it again after my upcoming doctor’s appointment.  Others here also have written of reducing or eliminating spiro without their T going back up.  There have been two threads on the subject within the past week. 


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It's generally considered heresy..

That said, a regimen that doesn't include an AA is an option. I haven't taken one in some time. A sufficient E level will suppress T.
This is not medical advice. Always consult your doctor.

Offline Transfused

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #3 on: March 02, 2018, 05:16:10 am »
Idaliaylix : are you me :-0 ??
I could have written every single word of this! We are so much alike, except that you are a lesbian and I’m a straight girl.

Both non-op
Both on HRT without anti-androgens. I took anti-androgens but they made me lethargic so I continued with E only. I had progesterone in my HRT basket but progesterone caused androgenization symptoms in me. Micronized progesterone, not Provera which is a progestin.

I have seen good feminization on E only.
I plan on an orchiectomy eventually but for now I don’t want an orchiectomy. I never plan on SRS.

My T now is 17 ng/dl for Total testosterone
Free testosterone was 0.100 ng/dl
Estradiol was 114 pg/ml.

That is with one transdermal Estradiol patch of what is prescribed to menopausal women. A moderate dose Estradiol patch that is prescribed to cis women in menopause.
That has proven to be enough to suppress my T and to raise my E within female ranges.

I feel much more relaxed with some T and high E in my system.

I feel balanced.
Progesterone never gave me that mental balance. A bit of endogenous T from my testes, aside of my endogenous Estradiol patch, has given me a feeling of relaxation.

Cis women also have some T. It’s good for the mood and the cognitive abilities.

Completely nuking one hormone for substitution by the  other is NOT healthy.
Hormones need to be a balanced mix.

My T was immeasurably low on Androcur and Spironolactone. I begged my doctors to take me off that anti-androgen and to raise my E-levels a bit. High enough E suppresses T on it’s own.

I experienced estrogen dominance which made me gain weight like nothing and made me tired and prone to depression.
No woman, cis or trans, should be androgen-deprivated.

I feel good on T levels between 15 and 30 ng/dl  and on E-levels between 100 and 200 pg/ml.

My skin is pretty, my hair is shiny and healthy and my cheeks are rosy. And I have female orgasms.

I have genital dysphoria so I don’t want anyone except myself to touch my girly dipstick.

If you want to be able to penetrate someone, levels between  50  and 75 ng/dl of T are recommended.

If you don’t want to use it, levels between 15 and 30 ng/dl are great.

This is my experience only.
What works for me, doesn’t necessarily work for you.




Offline KayXo

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #4 on: March 02, 2018, 06:45:15 am »
The thing with spironolactone is that it not only *sometimes* reduces T but also blocks androgens so that if your T is already very low, some of that is also blocked, leaving you with VERY VERY little which however high the estradiol may be, this may not be enough to compensate though some do quite well (and feel fine) on very minute amounts of T, so YMMV.

I am post-op, my T levels also got very low and since reintroducing some T, I feel better and I have written extensively about it in one my posts. This could have been the missing piece of the puzzle, for me. :)

Some things often overlooked, IMHO, when we speak of female range for T are:

- sensitivity to T: as we age, it may well be that we become less sensitive to sex hormones and need more for a similar response, as per one study's suggestions (not proven).
- intracellular concentrations of T: our T levels may be in female range but perhaps because of our age and/or unique circumstances, the levels of DHEA, DHEA-S and Androstenedione may be higher or lower and since these convert to T and DHT in cells, intracellular concentrations may be quite high or still lower than female making serologic measurements of T unreliable. In other words, our T levels may be in female range, but inside of cells, below the typical female because we have less of the androgen precursors such as DHEA.
- T levels fluctuate.
- total T is often measured and may be on par with female levels but if free or bio-available T is measured, it may be lower range or below due to higher SHBG values. Also, if we happen to take an anti-androgen, we may need more T to be on par with women because some of what is measured is blocked.
- female range is still quite wide, from as little as 6-120 ng/dl. Who's to say what level in there is ideal for a given person? The truth is we don't know and aiming for a median level disregards the individual's particular needs as some may need more or less to feel good which ties in to what I mentioned earlier about sensitivity.

This is why trying to match cisfemale levels can be tricky. I personally base myself on my well-being and physical response to gauge whether I'm getting too little, too much or just enough T. I'm trying to get my doctor on-board as well as she tends to rely a lot on levels.

I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005

Offline flytrap

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #5 on: March 02, 2018, 08:23:41 am »
There have been two threads on the subject within the past week.

I saw the one you started at;
https://www.susans.org/forums/index.php/topic,234787.msg2098989.html#msg2098989

Harkey Quinn just posted this yesterday:
https://www.susans.org/forums/index.php/topic,234858.0.html

If there is another one I missed, would you mind posting the link?



Offline Deborah

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #6 on: March 02, 2018, 08:26:40 am »
I saw the one you started at;
https://www.susans.org/forums/index.php/topic,234787.msg2098989.html#msg2098989

Harkey Quinn just posted this yesterday:
https://www.susans.org/forums/index.php/topic,234858.0.html

Would you mind sharing the link to the other related thread?
Those are the two I was referencing.  It’s a topic that has only recently been discussed and I don’t recall any earlier threads within the past several years.


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Offline flytrap

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #7 on: March 02, 2018, 09:35:00 am »
Thank you, Deborah. I am terrified of the my dysphoria returning, but can't help wondering if at 58 and my testicles being like completely gone after 8+ years of spironalactone and estrogen whether I really need to continue taking an anti-androgen. My energy level seems so low and I'd love to eliminate the concerns of potassium overdose

Offline Deborah

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #8 on: March 02, 2018, 10:09:13 am »
Thank you, Deborah. I am terrified of the my dysphoria returning, but can't help wondering if at 58 and my testicles being like completely gone after 8+ years of spironalactone and estrogen whether I really need to continue taking an anti-androgen. My energy level seems so low and I'd love to eliminate the concerns of potassium overdose
What I did, with my doctor’s approval, was to begin reducing it after my last appointment while she still left the prescription at it’s former level.  That way I could monitor myself and if I began feeling bad I could increase my dose back to its higher level.  I never did start feeling bad and the latest blood tests confirmed that the T did not increase.  After my next appointment next week I’m going to reduce it again and see what happens.  Like you, my only real fear is the old dysphoria returning.


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Offline flytrap

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #9 on: March 02, 2018, 01:19:57 pm »
One thing no one is mentioning is the benefits Spironalactone has for the skin. They talk about it like a miracle drug for acne in the fashion magazines. I understand there may be good reasons for stopping or not taking the medication, but good skin is a pretty nice perk!

Offline KayXo

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #10 on: March 02, 2018, 01:38:34 pm »
I believe the reason Spiro is good for skin/acne is because of its anti-androgenic action (i.e. reduction in skin sebum/oil), hence if T is low, the same benefits should be maintained although personally, since adding some T to my regimen, I find my skin is actually nicer, not as dry, plumper and softer but if it goes to high or unchecked by estrogen, I get pimples. :(
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005

Offline flytrap

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #11 on: March 02, 2018, 01:43:41 pm »
I am thinking it may be more complicated than that because girl's testosterone levels are so low compared to a guys to begin with?

Offline KayXo

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #12 on: March 02, 2018, 01:56:19 pm »
I am thinking it may be more complicated than that because girl's testosterone levels are so low compared to a guys to begin with?

I believe rather than absolute levels of T/DHT, relative levels seem more important as far as skin oiliness/sebum goes so that, at a certain point in time, in a woman's life when for whatever reasons, T/DHT levels increase relative to E, skin will become oilier and acne will become a problem. The addition of spironolactone helps as it lowers/blocks T/DHT.

I take only a little T post-op, get oily skin despite levels significantly lower than a man's (around 37 ng/nl, within female range but free T still very low) because of the RELATIVE increase. An increase in estrogen helps counter this and so on.

Relative sometimes matters more than absolute.
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005

Offline SammyHatesGreenEggs

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #13 on: March 02, 2018, 02:41:52 pm »
I started HRT about a month ago, and my doctor prescribed bicalutamide instead of spiro as an anti-androgren.  Given that I'm new and not a doctor, is that a viable alternative to spiro?

And as others have mentioned, if you have an orchi or srs, wouldn't that eliminate the need for an anti-androgen?

Offline Harley Quinn

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #14 on: March 02, 2018, 03:50:24 pm »
I started HRT about a month ago, and my doctor prescribed bicalutamide instead of spiro as an anti-androgren.  Given that I'm new and not a doctor, is that a viable alternative to spiro?

And as others have mentioned, if you have an orchi or srs, wouldn't that eliminate the need for an anti-androgen?
it is a good option.  Spiro is generally prescribed because its dirt cheap and has very mild side effects in the grand scheme. 
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Offline KayXo

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #15 on: March 02, 2018, 04:40:49 pm »
I started HRT about a month ago, and my doctor prescribed bicalutamide instead of spiro as an anti-androgren.  Given that I'm new and not a doctor, is that a viable alternative to spiro?

Bicalutamide blocks but doesn't reduce androgens, spiro can do both. It seems to be a potent anti-androgen, commonly used in men with prostate cancer. It seems to be relatively safe too but as always, serious side-effects can rarely occur. 

Quote
And as others have mentioned, if you have an orchi or srs, wouldn't that eliminate the need for an anti-androgen?

Yes, it should as the major source of testosterone is now gone.
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005

Offline Quinn

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #16 on: March 03, 2018, 11:39:18 am »
Idaliay,

I wanted to tell you my experience with spiro, i am very medication sensitive and always have been. Seems like most everyone tolerates Spiro very well , i did not.

I started estradiol in may last year on a really low dose just to see how i felt and how well i tolerated it. I felt wonderful even on the low dose, when i started it my thoughts were just to be on low dose and did not have any real timeline at that time to go any farther. Im 51 by the way. I started at with my T at 526 at the three month my T had fallen to 346 which was great and i was feeling so good i decided to double the estradiol. This is all with my endo's approval.
     I Actually had been feeling so much better right before i doulbled th dose what i noticed is over the next few months i was angry all the time again, snapping at everyoen around me , just like before i started HRT. at the 6 month my T at risen to 758 . I was really upset about that and talked to my endo and i added another 1/3 amount to my estradiol which it at the top where they are confortable for safety very high dose, and also added spiro . This was at the beginning of Dec Last year , i actually spent about 3 weeks getting my estradial dose to what the endo wanted raising it slowly. About 3 weeks later i started the spiro and it was a 3 week process to get it to the required dose. Toward the end of that time i started having anxiety and panic attacks , never had them before this and at the end of the three weeks i was having staggering depression that i have never felt in my life. I ended up in the hospital getting iv fluids because of dehydration. That i should have watched myself, but i decided to drop the spiro and let my endo know. She told me that the estradiol will eventually push the T down to female levels, it just takes time. About 2 weeks after i stopped the sprio i decided that maybe i just tried to get the dose up to fast for me. So i cut small amount off one spiro tablet so it was a really small dose and took that. About 12 hours later the depression, panic attacks all started again, i had forget that i even took the dose, it was about a week until the depression and anxiety went away again. That was the beginning of Jan and i have not had any depression since. Im not saying this will be the case for you but it was for me
          When i started having the issue of depression with the spiro i started researching it and found out im not the only one, seemed to be a more common side effect  than i thought it was. Ended up on a bunch of support sites for young women with alopecia and acne and there was alot of discussion of depression being a side effect with them.
Mid Januarary my T was 428, my next blood work is next next wednesday and have to tell you im a bit worried to find out which way the T is going. Been 9 months for me trying to get T down .

Your T is already down and has been for a long time , not sure how often you have your T checked but maybe ask your doctor to take you off for a short test period and see what happens with it and if your depression lessens

Best of luck

Paige

Offline Dani

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #17 on: March 03, 2018, 07:50:00 pm »
I stopped taking Spironolactone right after my GCS. Without testicles, I get all the Testosterone I need from my adrenal glands. Even though I reduced the Estradiol dose post GCS, there is still plenty of Estradiol to suppress what little Testosterone I have. I do not have any problem with excessive Testosterone as measured by blood levels.



Offline luna nyan

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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #18 on: March 06, 2018, 10:31:17 pm »
I’ve been off Spiro for more than 2 years.  Pellet E and T has yet to rise back to any meaningful level - it’s actually lower than most natal females and I’ve had no surgical interventions
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Re: Dumping spiro completely? Thoughts on HRT without antiandrogens?
« Reply #19 on: March 07, 2018, 11:51:26 am »
I’ve been off Spiro for more than 2 years.  Pellet E and T has yet to rise back to any meaningful level - it’s actually lower than most natal females and I’ve had no surgical interventions

Luna - may I ask how long you were on Spiro before being off for 2 years? How old are you? Did you taper off Spiro or just drop it? Are you still on a low/mid dose of E?

Sorry for peppering you with questions. I'm really interested in getting off of it but, like you, do not want to do any surgery unless I have to.
Thanks!