Anyone have feedback about long term Sprio use?

[Satinjoy]

I just had a therapy session and we ruled out Orchi.  Doesn't work for my case. 
My question is, can you get away with being on Spiro for the next 30 years?  Any life experiences with that girls?

The other thing mentioned, and I don't trust it, is that some people stay preop indefinitely but after growth they stop just the Spiro.  That again is an Endo deal, but my question is, wouldn't that result in at least some detransition?  I feel like sh-- when I have testosterone messing with my head. And forget about the body hair disaster on testosterone.  Testosterone for me is VERY bad.

Meeting the endo next week with a full level check. I have trouble with estro serum levels, we'll see if they have finally become trans normal.

Any thoughts or advice on this?  Time will tell anyway, but I like knowing what I am up against and doing reality checks.  You might say I don't like leaving my two eggs in one basket.... 

Wish I didn't have them.  By now they are probably scrambled eggs anyway.

[HughE]

Satinjoy, I've got no personal experience of using spiro, but there's a facebook group I belong to called "Gender research for all genders",

https://www.facebook.com/groups/GenderResearch/

One of the more important topics of discussion there is whether or not spiro is necessary as part of trans HRT. The consensus seems to be that, as long as you dose with enough estradiol valerate (EV) to bring your estradiol up to female-typical levels, it isn't usually necessary to take an anti-androgen. In most cases, estradiol on it's own is enough to suppress your T production.

It seems that the only reason antiandrogens have become standard fare in TG HRT is that the older forms of estrogen that were used decades ago (premarin and ethinyl estradiol) are quite toxic, so only doses too low to fully suppress T production could be used. This meant that an antiandrogen had to be taken on top, to complete the suppression of T production and allow the E to do its work without interference. Although those more toxic estrogens are (hopefully) no longer being used, the practice of administering an antiandrogen seems to have carried on regardless, even though it's unneccessary as long as you're being administered female levels of E. Most doctors don't have the first clue when it comes to hormones, and they're usually just following guidelines without having any understanding of the rationale behind them.

One of my facebook friends is a TG who's been on hormones for over 25 years, and she swears by a combination of EV and progesterone (both by IM injection) as her sole HRT. She says it's easy to do the injections yourself once you get used to it.

Another thing to come out of that group is that taking a bit of progesterone concurrently with the estradiol helps to reduce side effects and improve breast development. The reason progesterone's got a bad name among TGs, is that most of the stuff doctors hand out when they say they're giving you progesterone isn't actually progesterone at all, it's one of a number of progestins (which are a type of synthetic hormone designed to target the same receptors that progesterone does). Like most synthetic hormones, progestins have all kinds of adverse side effects associated with them, and in addition, most progestins are actually derived from the testosterone molecule rather than the progesterone one. That's probably where the stories about hair growth and other undesirable androgenic effects come from, they don't appear to be a problem with progesterone itself.

I saw a couple of cautionary tales in the group from Tgirls whose endos had kept them on spiro for years, and they'd started developing all sorts of health problems that miraculously cleared up once they stopped the spiro.

This is all just stuff I've seen others talking about. In my case, I don't identify as a woman, so I'm not taking female HRT. My innate T production has shut down though, and I'm currently taking fertility drugs to artificially boost it (so basically the exact opposite of what you're trying to achieve!).

[Satinjoy]

I appreciate the feedback my friend.  And also your support on the DES mess.

I am completely convinced that is the root cause of me being mtf trans, although in some measure an incomplete one.

We'll see what the endo says.  If my levels are solid on oral estradiol and finesteride and spiro, I will probably want to stay that route for a while.  I cannot afford estradiol valerate and I know they will go that route if my numbers are too low this time out.  And if it aint broke I won't want to fix it.

You are basically born intersex?   I know you are a DES son, maybe less exposure than I had though, but greater physical consequences in other ways than mine.  I am pretty sure it got my endocrine receptors and central nervous system womb transitioned.  And I have a node in the thing I don't like to discuss below my waist and thats DES caused.

Was thinking about you earlier, and I appreciate that you are contributing to the forum, especially on the DES issues which I feel very strongly about.  Controversial, yes, but it explains so much, it makes so much sense to me.

Testosterone makes me very nuts and makes the compulsivity side too hard to handle.  Fetishism begins to come into play as opposed to a more healthy transsexualism, if I can say it that way.  More healthy because its more about a physical and mental state as opposed to a craving for a feeling.  Not to judge anyone, but to be clear on my own needs, which is peace with my body and mind, and honesty, and not being driven by anything.

I really fit the old benjamin stage 4 models in a lot of ways.  I know its outdated but it is interesting nonetheless.  And I appear to be following those older treatment guidelines.

Thank God I don't have to FTE to have hormones, it would have destroyed me and my marrage.  I can't handle FTE.  I admire anyone that can.  I did the therapy for 3 month deal, actually 4 in my case, to make sure I was totally ready.

[TheQuestion]

I'm recently 26.  My skin is still in what I'd call great shape, no real wrinkles or anything.  The only thing with me is that I've lost essentially all of the fat in my face over the last year and a half-or-so.  Has made me look far more masculine.  I definitely feel like my skin is sagging a bit as well, but just from the loss of fat and resulting volume loss.  Doesn't look awful, but obviously it isn't what I want.  I know this is easily fixable with fat injections and all, but does hrt usually build up fat in the under eye area, chin/sides of mouth, and forehead, or is it usually just the cheeks?

[HughE]

"Satinjoy", I'm certainly getting the impression that there's a strong link between DES exposure and transsexuality among members of susans.org (and in every other trans forum I've raised the issue on). Most of the mothers who were given DES were given the same "Smith and Smith" treatment protocol, so it seems reasonable that the entire population of 2 to 3 million DES sons worldwide has been similarly affected. DES has been shown to cause female development in genetic males in a wide range of animal species, so no surprise that it has the same effect on people. It's just because of the level of disquiet people have about intersex conditions and the fact that several million people were exposed to DES, that nobody wants to admit what happened. That's the way I see it anyway.

In my case, I'm suffering from secondary hypogonadism and, with hindsight, there's been something wrong with my hormones all my life. I was born with a genital abnormality, and as a teenager, had the same pattern of behavioural problems that have been documented in DES sons too. My life experiences as a whole are very similar to a lot of the life stories of DES sons I've read: knowing I was somehow different from other boys from a young age; being bullied mercilessly as a teenager and learning to create a fake male identity; leading a very self destructive lifestyle as a young adult; settling down into a relatively normal life in my 30s (but never feeling very happy without being able to put a finger on why); then having my life abruptly fall apart in my early 40s (which I now know was triggered by the onset of acute secondary hypogonadism).

It also seems very much like the parts of my brain that handle body language, the physical process of arousal and orgasm, and my instinctive social behaviour, have all developed as female, while the rest of my brain has developed as male (I actually score as quite strongly male on all the "brain sex" tests I've tried).

As to what caused all this to happen, it doesn't match any conventional intersex scenario. The parallels to what I've seen with DES are so strong that it's got to be some kind of exposure to synthetic hormones, but I don't think DES itself was the culprit. There was absolutely no reason for my mother to be prescribed DES, and I seem to be a lot less female psychologically than most of the transgender (natal) DES sons.

I'm unlikely to ever know for sure what happened, but for a variety of reasons, the conclusion I eventually reached is that it was probably an overdose of contraceptive pills.

https://www.susans.org/forums/index.php/topic,84224.msg1377983.html#msg1377983

If that's what it was, then it means that the problem isn't limited to DES, but can be caused by exposure to other synthetic hormones too. That's why I've been trying so hard to get people here and on other trans forums to look at the link between DES and transsexuality. If other synthetic hormones can produce similar effects, then given how widely these drugs are used (and how few mothers know what drugs they're given during pregnancy), this could be the real reason why transsexuality and gender variance have become so much more common in recent decades. Given the high suicide rate, and how badly being trans tends to affect someone's overall quality of life, that's something that needs to be addressed!

[Satinjoy]

I'm recently 26.  My skin is still in what I'd call great shape, no real wrinkles or anything.  The only thing with me is that I've lost essentially all of the fat in my face over the last year and a half-or-so.  Has made me look far more masculine.  I definitely feel like my skin is sagging a bit as well, but just from the loss of fat and resulting volume loss.  Doesn't look awful, but obviously it isn't what I want.  I know this is easily fixable with fat injections and all, but does hrt usually build up fat in the under eye area, chin/sides of mouth, and forehead, or is it usually just the cheeks?

I am on hrt only, since late May of last year.  It takes a lot of time, but my face is filling out, and the area around the eyes was what "healed" first.  Not an expert here but that is my experience.  That is an estrogen result.

Hope it turns out as you desire.

[Satinjoy]

Hugh we would need not to disrail our thread here on the DES issue and possibly take it back to the DES thread we have both posted on again.  I had suspected something of what you said would pan out here.  My core identity physically is female, I have many, many of your characteristics although I don't know what the Hypogodnad thing means.

I am dead positive its all DES.  Explains why transexuality is so physical for me and how the male in the higher thought processes may still be the way they are.  They can't even diagnose me with a label.  My journey is to find peace with my body, soul, mind, and God.

They'll never prove it though scientifically, maybe in Europe they would, but here in the states there is too much liability involved.  It is easier to turn your back on it.  Wish they had done a study on gender dysphoria instead of sexual preferences though so we would have better percentages.  Folks want to hide anyway.  They think its a defect instead of a characteristic, or a birth anomoly, which is my view of it.  It's just different.

[HughE]

Sorry, I didn't mean to hijack your thread, it's just that this whole business of what happened with DES (and the fact that high doses of other artificial female hormones are still being given to pregnant women) gets me quite wound up!

Anyway, returning to your original question, my personal opinion (based on what I've seen the ladies in Gender Reasearch saying, and on what I know about synthetic hormones), is that going on spiro long term is a very bad idea. Spiro's primary function is to block mineralocorticoid receptors, and it's only commonsense that having a long term, heavy blockade of your mineralocorticoid receptors for no good reason is likely to cause problems.

In addition to its antimineralocorticoid action, spiro is also a progestin, which is a type of synthetic hormone that's well known for causing harmful side effects in transgender HRT. Even spiro's antiandrogenic effects aren't necessarily a good thing when carried on long term and to the point where your testosterone is driven to very low levels. In addition to estradiol and progesterone, women ordinarily do have some testosterone in their systems, it's needed to maintain muscular strength and a healthy sex drive.

In my opinion, the aim of any type of HRT should be to drive your blood levels of hormones as near as you can to those typically found in healthy people of your chosen gender who are in their late 20s or early 30s (after the pubertal hormone surge has passed, but while they're still near their peak physical condition). To me it makes sense to try to produce a state close to what's found in people in the prime of their lives, not when they're elderly or sick!

According to Rachel Fracon (who runs the Gender Research group):

"Over the past couple of months, we have presented dozens of pieces of research showing how common sense and basic facts of medical science strongly implicate Spironolactone use (and especially extended use over years) as likely related to depression, dysphoria, ADHD like symptoms, fatigue, insomnia, weight gain, adrenal exhaustion, thyroid dysfunction and metabolic difficulties. "

Apparently, if you take sufficient estradiol to raise your blood levels of up it to GG levels, that on its own will usually suppress your T down to GG levels, so an antiandrogen might not even be necessary at all (even without an orchi). The only reason antiandrogens have become a standard part of MTF transgender HRT is that doctors used to always prescribe premarin or ethinylestradiol as the estrogen, both of which are so toxic that the dose has to be kept quite low (too low to fully suppress T production on its own). Hence an antiandrogen was needed to further suppress T production down to GG levels.

[Satinjoy]

Useful, but a bit scary.  I will keep all of this in mind, its filed in my brain under "important".

Thanks HughE.

[nanjana]

Well this is worrisome. I'm about a week in of spiro and estradiol daily. Should this thread even concern me? lol

[Jennygirl]

Apparently, if you take sufficient estradiol to raise your blood levels of up it to GG levels, that on its own will usually suppress your T down to GG levels, so an antiandrogen might not even be necessary at all (even without an orchi). The only reason antiandrogens have become a standard part of MTF transgender HRT is that doctors used to always prescribe premarin or ethinylestradiol as the estrogen, both of which are so toxic that the dose has to be kept quite low (too low to fully suppress T production on its own). Hence an antiandrogen was needed to further suppress T production down to GG levels.

This closely parallels what my endo has said to me in the past... that only in extreme cases where the person has very high testosterone or very sensitive testosterone receptors is spiro a good idea. He said otherwise it is "very bad for you". I trust him. He also says the same thing about premarin / oral administration of any hormone and only offers shots, creams, and mostly pellets.

[KayXo]

One of my facebook friends is a TG who's been on hormones for over 25 years, and she swears by a combination of EV and progesterone (both by IM injection) as her sole HRT. She says it's easy to do the injections yourself once you get used to it.

I just switched to EV IM injection and I'm feeling much better than I was on oral (sublingual) estradiol. Seeing positive results physically as well. I do have some concerns though about where it's injected but will bring it up in another thread.

I take progesterone orally instead of intramuscularly because its half-life, even when injected into the muscle, is quite short, only lasts 1-2 days so requires frequent injections. Can be quite painful to inject so often and is inconvenient. There is however another progestin that can be injected that is quite safe, devoid of androgenic effects and any other side effects usually associated with progestins and that only requires monthly to bi-weekly injections. It's called 17-alpha hydroxyprogesterone caproate (or Proluton-Depot). It's not available where I live. I must admit though to really liking the sedative/calming effect associated with the intake of progesterone orally which would be absent with the other progestin or much less with IM administration of progesterone, unless injected at very high doses. 

In my opinion, the aim of any type of HRT should be to drive your blood levels of hormones as near as you can to those typically found in healthy people of your chosen gender who are in their late 20s or early 30s (after the pubertal hormone surge has passed, but while they're still near their peak physical condition). To me it makes sense to try to produce a state close to what's found in people in the prime of their lives, not when they're elderly or sick!

The only problem with this is that women have menstrual cycles so that levels go up and down constantly each month, the range being quite wide. Taking an average could perhaps solve this problem but what about individual sensitivity/variation, some may need more. Also, one must consider that women feminized at a time when growth hormone levels were much higher than ours so that we are lacking in that respect and perhaps, one may need higher levels to achieve similar results.

I think the only thing we can really do is go by how we feel and respond to a certain dose. Doctor will then decide if dose needs to be adjusted for optimal well-being and feminization.

[Satinjoy]

I may need to double down on the thread and ask if anyone has been on it for a long time and remained ok.  This has got me nervous now, orchi is out, I do not qualify under the standards of care for srs and frankly it's not a good idea for me due to other consequences I do not wish to face.

Facts first, 2 days to meet the endo.  Probably most folks orchi out of spiro...

I'd jump at EV but the cost is very troubling.  I make crap for money.

[KayXo]

I heard generic EV is quite cheap in the States and this alone will bring T levels down to female range. EV can be prepared by compounding pharmacies at very little cost. Pellets can also do the trick but they may be more costly, I'm not sure.

[Jennygirl]

Let's keep this thread clean of any talk about herbals and self medication please!

Thank you much!

8. The discussion of hormone replacement therapy(HRT) and it's medications are permitted, with the following limitations:
A. You may not advocate for or against a specific medication or combinations of medication for personal gain. This is strictly prohibited.
B. You may not discuss the means to acquire HRT medications without a prescription. The discussion of self medication without a doctors supervision is prohibited.
C. The discussion of recommended or actual dosages is strongly discouraged to prevent information obtained on this site from being used to self medicate.
We can not in good conscience condone the self administering of these medications. Not only may self medication be illegal, but HRT medications can cause serious health problems, and many have the potential for life-threatening side effects that can only be detected and prevented with proper medical supervision.

[AnneB]

:x

[dling]

I had to go off Spiro after about 1.5 years because I just couldn't stop peeing! 

[Satinjoy]

Endo tomorrow.  I don't do anything without the endo and the shrink involved.

Another thread motivated in me by fear.  Fear of repercussions of Spiro, and fear of the cost of injections, which the Doc had said might be necessary due to my low serum levels.

I agree with the moderators on staying "in bounds".  That being said, I like going in to the doc appointments with straight up facts.  It just seems common sense to know your body backwards and forwards on something as dicey as transition, and to bring as much to bear on it as you can, to stay safe and have an intelligent conversation or understanding.  I also am quite clear that "physician steering" is another problem to be avoided and is an easier trap to fall into.  I should trust my endo He has been working with trans for decades.

Our desire for hormones in general clouds our reasoning sometimes, at least it does mine.  Which is why I was willing to lose everything to get on them.   Fortunately that did not happen.

[Jennygirl]

Endo tomorrow.  I don't do anything without the endo and the shrink involved.

Another thread motivated in me by fear.  Fear of repercussions of Spiro, and fear of the cost of injections, which the Doc had said might be necessary due to my low serum levels.

I agree with the moderators on staying "in bounds".  That being said, I like going in to the doc appointments with straight up facts.  It just seems common sense to know your body backwards and forwards on something as dicey as transition, and to bring as much to bear on it as you can, to stay safe and have an intelligent conversation or understanding.  I also am quite clear that "physician steering" is another problem to be avoided and is an easier trap to fall into.  I should trust my endo He has been working with trans for decades.

Our desire for hormones in general clouds our reasoning sometimes, at least it does mine.  Which is why I was willing to lose everything to get on them.   Fortunately that did not happen.

If there is a way your endo can avoid spiro, I would recommend it. Speaking from my own experience, I haven't taken any antiandrogen except for bioidentical progestins (injections & eventually pellets). My endo would not prescribe me spiro unless I had overactive t receptors or an abnormally high t level- which I obviously don't.

Obviously all endocrinologists are somewhat different, but some go by the older ways which aren't necessarily ideal for our bodies- although the old ways may be easier on the wallet. It's definitely something to keep in mind. In the end you just have to choose what is right for you... as long as your body and mind are happy, you're doing it right

[Satinjoy]

Two hours to the doc and I am nervous as heck.  I purposely dressed andro - I'll change to stealth at the doc office before walking into the construction office and getting crushed... and I feel like a little girl emotionally.  All scared, I never had boobs before or looked like this and now I am self conscious.

Joys of transition lol.

I'll see what he says.   Board has provided a great reality check here.