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Great, so spiro doesn't work on me.... [venting]

Started by girl you look fierce, February 04, 2013, 04:06:00 PM

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girl you look fierce

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SamiT

I too had this issue. Then he went old school and persrcibed Ethinyl Estrodiol. Within 6 months my t levels had dropped below 30 and now at 18 months on im below 20. YMMV is ALWAYS a good thing to remenber here.. Hopefuly you have an Endo thats willing to reach out and try a few things..
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MyKa

My endo has me on a cocktail of spiro and finest erode. Use together is works well! Might want to check into it
Dream as if you'll live forever, Live as if you'll die today.....J.Dean
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Sarah Blomsterhatt

I'm currently on Cyproterone Acetate as my antiandrogen. I belive it to be the most common antiandrogen used outside of the US. Might be worth looking into/suggest/ask about.
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kathy bottoms

Give the spiro a little time to work.  My T levels dropped rapidly also after 6 months.  There are a few meds that inhibit the T receptors, without significantly reducing T levels.  But I have no idea if they are even prescribed anymore.  I stopped using the one I had, and I'd never want to be put on that stuff again because of the side effects.

Good luck, Kathy
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kinz

i had levels above 300 ng/dL for almost a year and a half, after having taken spironolactone for the duration and estradiol for about one year.  it honestly took until i had surgery to honestly solve it in its entirety, since the levels were still languishing in the high 100s range right before surgery, and that was after about 27 mos. on spironolactone and 22 on estradiol.

but it turned out fine, to be honest.  it didn't stop me from having a reasonable outcome even before surgery.  basically, the numbers are just numbers, and the results that you see in your physical embodiment may or may not reflect what the numbers "should" suggest.

if you're concerned that spironolactone isn't doing anything, you can look into alternative drugs and ask your doctor about them.  cyproterone acetate isn't prescribed in some areas—for example, in the states they flip out about potential for liver toxicity since it is more taxing than spironolactone—but there are others like finasteride and dutasteride (5a reductase inhibitors), or flutamide and bicalutamide (nonsteroidal pure antiandrogens), which have different responsiveness profiles from the more typical progestogenic steroidal therapies like spiro or cypro.

the moral of the story is that Everyone Is Different.
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muuu

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kinz

Quote from: girl you look fierce on February 04, 2013, 04:15:04 PM
Humm yeah, isn't ethinyl estradiol really dangerous though?  Also how did that lower your T more than normal estradiol??

it's a much more potent estrogen than the endogenous 17b-estradiol, which could account for that (i believe what makes it potentially hazardous is that the carbon-carbon triple bond can become an ethynyl radical, which is dangerous?  i can't remember exactly, but i think that might be the hypothesis of some studies that correlate it with a modest increase in risk for breast cancer.  take it at face value though).  it could also be coincidental.

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I suggested finasteride and she was about to prescribe it BUT decided that just increasing the E was better before adding new meds...

finasteride has more side effects than the steroidals, so this makes sense.
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MyKa

Op, what's the time frame you've been on spiro? My endo said 6 months is around the period for the mess to fully work.
Dream as if you'll live forever, Live as if you'll die today.....J.Dean
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MaidofOrleans

"For transpeople, using the right pronoun is NOT simply a 'political correctness' issue. It's core to the entire struggle transpeople go through. Using the wrong pronoun means 'I don't recognize you as who you are.' It means 'I think you're confused, delusional, or mentally I'll.'. It means 'you're not important enough for me to acknowledge your struggle.'"
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muuu

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kinz

Quote from: girl you look fierce on February 04, 2013, 05:01:42 PM
I could handle 100 or even 300 ng/dl... that's different... at least it would be on the low/abnormal side of the male range... whereas my levels would be a goal to shoot for to a lot of men....  my levels are also still levels which people masculinize normally at and I'm kinda at that supposedly critical age range :(

sure, i gotcha.  i was 17/18 when this was happening so i was beside myself with fear that i was going to sprout a cleft chin and my shoulders were going to go from (in my perception) merely wide to titanic.  i'm just saying, i started out with seriously high levels (if i recall correctly i was somewhere in the 800s as a baseline) and it took me a year just to get to 300, which is still muuuch higher than most cis ladies and can still dish some damage.  so chin up!  it's not the end of the world.  it *will* get sorted out.
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Zumbagirl

I have no idea if you are paying for your hormone therapy on your own, or if it's covered under insurance. That being said, when I was going through my transition and talked about anti androgens, my endo suggested Nafarelin (aka Synarel) as basically the most powerful therapy that could be had. I went the spiro route because Nafarelin wasn't covered under my insurance at the time and also because it was about $400 a month for the prescription if I paid for it myself and I needed the money for electrolysis otherwise I would have used it. Basically what my endo said is that it was the best stuff to shut down the gonad production altogether. I wouldn't have a drop of T in my system if I took it, and the estrogen would work just as easily as if I had an orchi. That might be an option to discuss with your endo if he or she is willing to prescribe it. I know a few girls who go way out of their way to see my endo, JUST so that they can get ths one med prescribed.
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kinz

Quote from: girl you look fierce on February 04, 2013, 05:21:34 PM
Yeah she seemed almost fine with my E level (66 pg/ml) which I thought was a little conservative... like just cause it's in the range doesn't mean it's ideal.  So I am definitely glad about the E increase.

Not sure on too high E levels either I think it's just an issue of blood clot risk I guess. ???

idk what's with some endos, my first one seriously underprescribed me.  i think it's bc he has experience working with trans women that are, like, in their fifties, and not a lot of young kids, so when i came around post-op at age 19 he figured i could just get the same dose as someone who's of menopausal age.  and i'm like, i don't want to be hitting menopause at the same time as my mother, who's 30 years older??? (also unrelated but my face when people are grateful for having low sex drive??? i'm like that's my bane, yo, i wanna be in the mood!)

younguns are sexual beings.  i hope endos figure that one out eventually.

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Yeah my levels started ridiculously high... over 1000... I cannot believe I had levels that high all that time, I didn't think I had a lot of T effects and actually I thought my T would come up low for men, so it was a shock, I'm pretty glad I didn't find out until later cause it would have devastated me, I had to wait 3ish years to start HRT in the first place.

I know it should be okay eventually, it's just hard, but thank you :) I'm trying my best to stay positive.  Just sometimes need to vent because seriously wtf :(

yeah, of course!  it can be tough, but it's good to keep in mind that levels aren't always the right indicator of what's going on.  hell, for people who are androgen insensitive or have 5a-reductase deficiency, there's free t like everywhere and the levels are off the charts, but nothing really happens/none of it's really converted into dht so it doesn't mean much as far as masculinization.  i know it can be frustrating, but don't worry, your body will catch up eventually!
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muuu

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kinz

Quote from: muuu on February 04, 2013, 05:48:16 PM
I don't think 66 pg/ml is in the right range really... I was at 81 pg/ml pre-hrt, though obviously still with normal male T levels (605 ng/dl).
Well, apparently everyone's different, so there's no correct dosage.

So, really... ask her to be more aggressive on your treatment, only if you want her to be obviously.

i never got higher than around 70pg/mL before surgery, and i was hovering around 35pg/mL afterwards since i last checked.  i might be heading for inevitable osteopenic catastrophe, but i feel ok, at least.
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muuu

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muuu

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SamiT

Quote from: girl you look fierce on February 04, 2013, 04:15:04 PM
Humm yeah, isn't ethinyl estradiol really dangerous though?  Also how did that lower your T more than normal estradiol??

I'm on a closely monitored regiment. I know he keeps close tabs on the Free Androgen Index, testosterone, estradiol, and prolactin. To date I have not had a shift in my last 3 blood draws, the first year they were done every three months and now im on a 6 month cycle. He did do some extra work with an EKG and a Sonagram of my heart but other than that. It was his normal regiment for his MTF patients for many years. Only recently had he moved over to the anti-androgens. He only perscribes it as an alternative to those who dont react to the Anti-A, he also told me that he would only keep me on it a max of 4 years at that point I needed to get an Orchi or GRS. My understanding is this is still a very comon regiment in many parts of the world. All of the information I have been given is that DVTs are the most serious risk.
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