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Stopping Spiro Years After Orchiectomy

Started by AutumnLeaves, May 01, 2017, 11:37:01 AM

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AutumnLeaves

I had an orchiectomy about 13 years ago now, which I had intended to be my final step when it came to genital surgery, since I did not want to take anti-androgens and thought I would be able to get by on less estrogen. It turned out the latter was not the case, and while I did notice a lot of positive effects after a few years I was still struggling with more unwanted body hair than I would have liked and my doctor and I decided to try me on a normal pre-op dose of spironolactone. To my surprise adding the spiro reduced my body hair above and beyond what had been achieved with the orchiectomy itself, possibly as it also has an effect on DHT. I've stayed on it now for years up until about a month ago. I had noticed that I was feeling low sex drive and was quite weak, and when they tested my blood they also found that my potassium levels had started to "creep" up, not enough to be in the danger zone but enough that it needed to be monitored and was approaching a level of concern. When I switched to Planned Parenthood for my HRT and got back on Delestrogen injections, they also gave me the OK to taper back and stop the spironolactone, which I did over about a week.  I've now been completely off of it for about 3 weeks, though I had been sporadic about getting my full dose in for a couple of months prior.

So far so good. I do feel like I am noticing a few more terminal hairs on my face that HAD been blonde but have gotten darker, and I feel like I am needing to shave my legs a bit more often. I definitely puffed up with some fluid retention but that seems to be doing better.  However, I also feel like my sex drive is returning to normal and orgasms are easier to achieve. In addition, my skin seems less "dry" and it's nice not having to go pee every five minutes like I had been for so long. I'm just wondering what I will do if I start to develop excessive body hair growth or any other signs that my remaining androgens are having an adverse effect. I am hoping that being so far past surgery and on a healthy dose of injectible estradiol will prevent this from happening. If not, I may need to talk to my doctor about going back on finasteride or something. Be that as it may, I am really hoping that I can get by with just my bi-monthly shots and can say goodbye to taking daily pills or anti-androgens at all. Has anybody else been on ant-androgens for this long post-surgery or had a similar experience?
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Dani

#1
I had genital surgery about 15 months ago. I am still taking finasteride. I am doing this mainly for male pattern baldness, which as a late transitioner, I have a minor problem with.

Testicles are only one source of testosterone. The other sources are the adrenal glands and the metabolic breakdown of other sex hormones. These other sources account for much less testosterone than the testicles produced.

How it affects you will be determined pretty much by your own personal body chemistry. Some of us will have no visible effects and others will have a slightly more pronounced effect. But in no case, will it be as pronounced as when you had testicles.
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AnonyMs

This is Dr from Suporn's post-op care book

In most cases, post-operatively there is no need to continue anti-androgens post-operatively.However, in some cases (about 5-10%) patients find that unwanted male characteristics can return immediately post-operative. ... The solution is simply start taking anti-androgens again at the same rate as one was taking pre-operatively for at least 3 months, and then gradually and steadily reduce the dosage of anti-androgen until at 12 months post-operatively the dosage can stop. This gives the body's adrenal system toadjust slowly to the changes, until at 12 months it can quite happily sustain a very low testosteronelevel.

I edited it down a bit.
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KayXo

Upon switching to a high dose of estradiol valerate taken IM from oral estradiol, I noticed a significant reduction in body hair growth, thickness and overall density. I was post-op. The resurgence in androgenic symptoms is most probably due to stopping Spiro. It might be temporary and a high enough dose of Delestrogen (while keeping health risks to a minimum) prescribed by your doctor should probably help.
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
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AutumnLeaves

Right now I am taking a "wait and see" approach. I definitely think I feel way better off the spiro; I feel like it made my skin dry, and since I am so many years post-op (in a sense) I am sure it was pushing my androgens down to undetectable levels. My skin looks and feels healthier and my sex drive is WAY up, which my husband and partners appreciate. Plus, as I mentioned, my potassium was starting to creep up so it might have been time for a break anyway. I'm undergoing electrolysis again after a decade away in preparation for SRS next year and have decided to have pretty much all my unwanted hair removed (working on my underarms, bikini line, lower tummy, etc as well as genitals) so it's easy to have the occasional rogue hair on my lip or what not zapped away since I am going to be there anyway. It will be interesting to see how my blood work looks a few months from now when I have been off the spironolactone for a while. I get my hormones from Planned Parenthood now, and they want me to come in for a blood test soon to monitor my levels since this location apparently doesn't often prescribe injectibles.
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AutumnLeaves

Update: I am back on the spiro. After cutting the dose and then stopping completely all was well at first, but then I noticed I was having to shave my legs more frequently, I got a few new darker, longer hairs on my arms, and the "peach fuzz" on my tummy (which I've been having electrolysis on) become coarser, darker, and grew faster. So I am proof then that anti-androgens can suppress hair in some people above and beyond what years of estrogen and orchiectomy surgery can do. I am not thrilled about having to take spiro for my whole life, but until something else comes along I'm sticking with it.
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KayXo

I wonder if perhaps your E levels are not sufficiently high to oppose androgen action. Something to go over with your doctor, maybe?
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
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Dena

You should be asking the doctor to test your T levels in the blood test. Tests for T are more common that the estrogen test so if you lab and check your estrogen levels, they should be able to check your T levels. If your T levels are excessively high, it might be something the doctor should investigate. By testing the T levels, you also might be able to get by with a lower dosage of Spiro and have fewer side effects.
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KayXo

Even with low T levels, tests don't measure sensitivity or the levels in tissues so that the T level may be low but your sensitivity to it high (i.e. genetics) or in certain tissues, concentrations might be particularly high. There is only so much this sort of test can tell you and I don't think it would be useful in this context. She stopped Spiro, hair regrew, end of story...but it is also kind of expected due to the rebound effect...maybe wait it out and eventually it gets better is another option...but yea, I wouldn't be too happy either to see hair regrowth, yuk!  >:(

Btw, bi-monthly injections might lead to PMS as usually with Delestrogen, levels fall quite rapidly and people feel best injecting every 5-10 days. Just something to look out for if you feel unwell, the last few days. Let your doctor know!
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
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AutumnLeaves

They have tested my testosterone levels and they were negligible, which is one of the reasons I wanted to get off the spironolactone. I don't want to get into "levels" too much, but my estradiol also was relatively high so no deficiencies there. Don't get me wrong; the orchiectomy alone radically reduced the amount of body hair I had, which was very welcomed because I was moderately hairy prior to transition. I don't think stopping the spiro would ever cause me to regrow TOO much. However, it seems that I am unfortunate enough to be hyper-sensitive to even small amounts of androgens. There have been multiple studies on cis women with idiopathic hirsutism who responded very well to spiro or other anti-androgens despite having had normal androgen levels, so it's clearly blocking something (DHT?) from working on the hair follicles themselves, not merely just lowering production of testosterone. So I am back on my usual dose indefinitely until things settle down again.
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KayXo

Quote from: AutumnLeaves on May 17, 2017, 08:31:35 AMHowever, it seems that I am unfortunate enough to be hyper-sensitive to even small amounts of androgens. There have been multiple studies on cis women with idiopathic hirsutism who responded very well to spiro or other anti-androgens despite having had normal androgen levels, so it's clearly blocking something (DHT?) from working on the hair follicles themselves, not merely just lowering production of testosterone.

Spironolactone blocks ALL androgens and reduces T (and thus DHT) production. Reduction in T also tends to cause a reduction in conversion, I *think*.

You are indeed hypersensitive or it may be also that injecting every 2 weeks, E levels drop so that by the second week, T is less inhibited. When was estradiol measured? Also, rebound effect from stopping Spiro which would probably be temporary until things settle down. Hairs that have been destroyed by electrolysis will never come back, no matter how much T there is in the blood.
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
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AutumnLeaves

I actually was injection once per week; I never liked the two week schedule because I could tell by the end that my estrogen levels were too low. At any rate, I am off the injections now and back on compounded transdermals. I like the shots, but they just cause too many side effects in me.
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KayXo

Quote from: AutumnLeaves on May 19, 2017, 08:54:13 AMAt any rate, I am off the injections now and back on compounded transdermals.

Do these absorb well enough? I doubt you'll get the equivalent strength on them vs injectables.

Quote from: AutumnLeaves on May 19, 2017, 08:54:13 AMI like the shots, but they just cause too many side effects in me.

What side-effects?
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
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AutumnLeaves

Quote from: KayXo on May 19, 2017, 11:38:28 AM
Do these absorb well enough? I doubt you'll get the equivalent strength on them vs injectables.

What side-effects?

Mine absorbs well enough. My compounded gel keeps my levels above 300, which is about where I want to be. The shots caused excruciating migraines that nothing, and I mean nothing, would help except for high-dose steroid injections. I always suffer from migraines, but these were out of this world and would not respond to my usual medication. I also had nausea and problems with my vision. We tried decreasing the dose but it didn't help. I was on a once-a-week schedule.

Unfortunately, stopping the spiro, combined with the steroids and possibly stopping the high dose injections, has led to real problems and the return of some masculine features. I am back on the spironolactone as well as finasteride and oral progesterone. If I don't see a rapid reduction in the unwanted hair growth and other issues, I am going to ask my doctor about switching me to (or adding?) bicalutamide because it's said to have a rapid effect. I am feeling very discouraged right now.
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