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Finasteride effects & post finasteride syndrome (pfs) *possible trigger warning*

Started by Melody.T, July 17, 2016, 08:17:21 AM

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Melody.T

First off let me state that I am a 33 year old non-op transsexual woman both by choice & underlying medical conditions. I already had a boyfriend pre-HRT (I'm bi anyway), and I am a firm believer that genitals do not equal gender. I have very minimal bottom Dysphoria, but if you wish to think of me as non-binary that's fine by me but I do itentify as female.

So the meat and potatoes of this discussion.
I've been on Finasteride for 13 months as a supplemental T blocker in addition to my normal T blocker which was originally Spiro & later changed to casodex/Bicalutamide. I have Dysautonomia, which my doctor was fully aware of before prescribing finasteride to me. She said it was a DHT blocker, and that it couldn't hurt. I have no male pattern baldness, practically zero body hair and have already had facial laser. Why I was put on this drug I don't really know but I trusted the doc and rolled with it.

Well long story short, I have have been absolutely bedridden since after so many months on HRT. I can't sit or stand for very long periods at all without fainting, but I was much better before. I thought it was just progression of my prior health condition. I went from being able to walk around a few hours a day to not being able to get out of bed unless I need to use the restroom and bathe. I was completely unaware that a common side effect of finasteride is postural Hypotention (a condition that I already had).

2 months after starting HRT I had massive depression and couldn't figure out why considering that I was so happy to finally be on HRT. I was happy and excited with my body changes. Out of the blue I attempted suicide (a pretty serious attempt), I was so depressed and don't know why I did it. I didn't know that depression was a side effect of this drug either.

Lastly, I of course now have zero libido, have major hypogonadism, shrunken genitals, ED, atrophied prostate and even if I can ejaculate by practically forcing myself to be in a sexual situation I find that there is little to no sensation.

Personally I wasn't too concerned about genital shrinkage etc, but I 'be been telling the doctor about 6 months after starting HRT that my libido is far lower than any cisgender woman that I've ever known. My 63 year old mother has a higher libido than I do. My doctor prescribed me progesterone to try to help my libido. She's been aware of my blood pressure getting worse and made no mention of the drug that she'd been prescribing me.

So I played around with different dosages & types of T blockers so I could try to retain some libido at all. It worked temporarily for a few weeks many many months ago, but it just eventually went void. However, I never once discontinued the DHT blocker Finasteride.

I leave this as a warning to anyone considering finasteride, whether your problem is low libido, brain fog or worse orthostatic Hypotention, i'd avoid this particular drug at all costs if you're non-op and don't have MAJOR concerns about male pattern baldness or have prostate cancer.

I admit I should have researched the drug before taking it, but I trusted the doctor and since they knew both my full medical history & non-op status there was no reason at the very least to worsen my chronic health conditions.


Please stay safe and healthy, everyone. Wish me luck, I've been off finasteride for 2 weeks now but have had zero changes so far in libido or blood pressure. I'm hoping to be able to have a better life than being bed ridden. I just want to be able to go out in the world again on my own two feet (and *any* libido wouldn't hurt either).

I have no plans to detransition and I'm just going to try to make the best of a bad situation that was made worse.


Lots of love and support,
-Melody
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Ms Grace

I hope you start to feel better. I've heard of a number of finasteride horror stories, both through this forum from other members and from elsewhere of issues that cis/genetic men experience on the stuff. I'm glad my endo steered me away from the idea of taking it.
Grace
----------------------------------------------
Transition 1.0 (Julie): HRT 1989-91
Self-denial: 1991-2013
Transition 2.0 (Grace): HRT June 24 2013
Full-time: March 24, 2014 :D
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Melody.T

Thanks for the kind words, Grace. I'm very happy that your endo steered you away from this med.
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Mariah

So sorry that your not feeling well Melody and I hope that you get to feeling better soon. I have been on the stronger version called dutasteride and lucky haven't had issue, but has happened to you will certainly make me take note. Thank you for the warning and heads up. Get well soon. Hugs
Mariah
If you have any questions, please feel free to ask me.
[email]mariahsusans.orgstaff@yahoo.com[/email]
I am also spouse of a transgender person.
Retired News Administrator
Retired (S) Global Moderator
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Melody.T

Quote from: Mariah on July 17, 2016, 09:27:06 AM
So sorry that your not feeling well Melody and I hope that you get to feeling better soon. I have been on the stronger version called dutasteride and lucky haven't had issue, but has happened to you will certainly make me take note. Thank you for the warning and heads up. Get well soon. Hugs
Mariah

I'm glad you're well, just take note if your blood pressure starts getting low, orthostatic Hypotention is no laughing matter and it's a relatively common side effect. Thank you so much for the kind words. :)
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Megan.

I'm sorry you've had a bad experience with Finasteride. I've been using it for more than 18 months and have luckily had no noticeable side effects, but only at typical hair-loss prevention dosage. I know others have also had bad reactions, it seems like a lottery
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hotmomma

just want to chime in on Finasteride - I love it _ can't imagine not having it - best thing since coming out and beginning hormones for me was beginning Finasteride.

been on hormones for 7 years before starting finasteride - can't believe I wasn't taking it the whole time :(   I take spiro in a split dose and E

I highly recommend Finasteride for anyone who wants to get rid of the T and effects of T in their body.

My Doc started me with <removed>, it had such a profound effect at blocking my T, it made me feel incredible, profound even....  so I up'd my own dose and got my doc on board to prescribe that.

may not be for everyone, because yes, you will lose any ejaculate if you still have any left from spiro and trying to ejaculate or orgasm as a phalus oriented being may not be possible, you will lose the rest of your muscle mass and any ability to hold your arms in the air for any length of time etc... all the effects of having no testosterone - again best stuff ever :)

sorry it didn't work for you


Mod Edit:Dosage
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Thessa

I'm taking finasteride now for 7 months and had no negative side effects, I and also others notice regrow of some top hair.
Still I want to try dutasteride because of the reported better results with hair regrow.

The only downside with dutasteride is, that it will have to be approved by social security (4 times the price of finasteride), still waiting for their decision.
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Dena

I have looked into this as the result of another issue and sadly I wasn't able to come up with anything in the way of a treatment. Don't be put off by the title because both substances seem to act on the human body in a similar method. The information in the thread may give you some form of starting point.
https://www.susans.org/forums/index.php/topic,195367.0.html
Rebirth Date 1982 - PMs are welcome - Use [email]dena@susans.org[/email] or Discord if your unable to PM - Skype is available - My Transition
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Mariah

Thanks and totally agree with you on that too. Hugs
Mariah
Quote from: Melody.T on July 17, 2016, 10:04:20 AM
I'm glad you're well, just take note if your blood pressure starts getting low, orthostatic Hypotention is no laughing matter and it's a relatively common side effect. Thank you so much for the kind words. :)
If you have any questions, please feel free to ask me.
[email]mariahsusans.orgstaff@yahoo.com[/email]
I am also spouse of a transgender person.
Retired News Administrator
Retired (S) Global Moderator
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Melody.T

Everyone is entitled to their own opinion about the drug, but one of the common side effects was completely unacceptable for my past and current medical history, nor did I desire the complete loss of function and my doctor knew that. Each to one's own, but I wish that I was still attracted to my boyfriend (or anyone for that matter). It messed me up.

I've discovered that I've been on MUCH higher doses than that typically used for preventing hairloss and I don't think any medication should ever be given to a patient without explaining the risks vs rewards.

It was pretty much explained as "just a DHT blocker and it will reduce facial hair growth and prevent make pattern baldness. It may lower libido a little but it's just supplimental to my T-Blocker."
Two complete non-concerns in my situation.

The ONLY warnings on my medication bottle is:
"If this medication is crushed prior to administration, it must not be handled by women who are pregnant or who may become pregnant.

Pregnant women should avoid contact with this medication.

This medicine may be taken with or without food."

I don't & won't endorse Finasteride, as it's currently ruined my life and I hope that I can somewhat recover. I had to quit spiro for dehydration complications with my health and thus my change to Bicalutamude, and the # finasteride has done on my pre existing heart syndrome due to my doctor's negligence to care about my very disclosed health conditions is IMO unforgivable. I will not return to my doctor and will be getting a referral to a new Endo.
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Thessa

Quote from: Thessa on July 17, 2016, 01:08:17 PM
The only downside with dutasteride is, that it will have to be approved by social security (4 times the price of finasteride), still waiting for their decision.

Today I picked up my estrogen suppositories from the pharmacy and they told me that Dutasteride was not approved. So I paid out of pocket. I will try for the next couple of months but I have the feeling that I will give in and submit to biology anyways.
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LilDevilOfPrada

I stopped using fin years ago and thankfully I had no side effects. Sorry to hear about your experience and I hope you get better soon.
Awww no my little kitten gif site is gone :( sad.


2 Febuary 2011/13 June 2011 hrt began
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V

I have been taking a low dose of Finasteride daily for the past 12 years (self-medicating). I have not noticed any side effects. I am 13 years post-op though.
The effect on my hair loss has been worth the risks to me. But I am in no way recommending that anyone do what I do.
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J2J

Kind of concerning, I take <dosages not allowed> of Finasteride daily for Male Pattern Baldness, I haven't had any side effects... I also didn't know that some people take <dosages not allowed> as a medication for transitioning? I tried to read more on that but couldn't find any... kind of odd how originally a prostate medication has all these other uses?

Moderator edit: It is against the site's policies to post dosages of prescriptions.
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Michelle:)

Thessa, you mentioned estrogen suppositories.......is that a joke or euphemism for something else?  I never heard of estrogen suppositories before.  I take my pills sublingual.
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Dani

Quote from: Michelle:) on November 13, 2017, 09:29:26 AM
Thessa, you mentioned estrogen suppositories.......is that a joke or euphemism for something else?  I never heard of estrogen suppositories before.  I take my pills sublingual.

Estradiol can be absorbed through any tissue with a good blood supply nearby. It must first be in a liquid state for absorption to occur. Sublingual dissolves under the tongue. Topical and patches are already liquid mixed in a gel or cream and absorbed through the skin. Suppositories that contain Estradiol are first inserted rectally and then melt under body temperature to produce an absorbable liquid. Take your choice. They all work.
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Chloe

This is a rather old thread . . . taking finasteride is totally *redundant* as Casodex is an excellent DHT blocker as well!!! Why would OP's doc even suggest it????

Studies on bicalutamide have been done with dosing up to 5x 'standard'/day with no serious adverse effects (unless allergic which is rare) effective dosing for a non-cancer subject (achm ie: such as rest of Us!!) is 1/2 to 1/3 'standard' very nominal at best!! And, by colliery, that applies to 'cost' as well.

Mods 'ok' with 'standard'? ???

Sorry just thinking of another, more recent thread . . .  8) rant over am *not triggered* any more To Each Their Own!!!
"But it's no use now," thought poor Alice, "to pretend be two people!
"Why, there's hardly enough of me left to make one respectable person!"
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josie76

So finasteride has some risks. It is too bad the OP was not warned but their doctor. It has about a 1% bad reaction rate. For some of the 1% it has been known to cause a permanent drop in the production of the alpha5-reductase enzyme. This permanent effect is extremely serious for cis males. For those suffering with it even adding T hormone therapy would only provide a short relief cycle. It was found that DHT conversion was nearly zero. Add to the loss of masculinity, alpha5-reductase type 1 is needed for conversion of base chemicals into the neurotransmitter allopregnalone.

For 99% of patients finasteride works as it blocks production of type 2 and type 3 alpha5-reductase. This will stop most male pattern baldness and does cause muscle loss. It has 100 times less effect on type 1 alpha5-reductase production. So for most it works and is safe. However that still means for 1/100 people it should not be used and for about 1/100 of those people it may be permanent even after stopping use. For them it is something eve ethic that turns off another gene expression.


As far as brain fog and depressive side effects, if the person has a naturally low allopregnalone level then even the smaller effect finasteride has on the a5-reductase type 1 production can have a significant effect on them. Certain other chemicals involved in the neuro chemistry can be factors. For instance the phsyc drug Sertraline is the chemical that causes gene expression for the building of precursor chemicals for allopregnalone. However allopregnalone does also require progesterone to be made. In a cis male the brain glands can synthesize small amounts of this for this very purpose. Having a female blood circulating level of bioidenticle progesterone will greatly increase the availability and therefore remove one potential issue by making of the largest limiting reagents needed in surplus availability.

Duteraside is far more dangerous as it blocks production of all three types of a5-reductase enzyme production. Duteraside will lower body DHT by 99%.
04/26/2018 bi-lateral orchiectomy

A lifetime of depression and repressed emotions is nothing more than existence. I for one want to live now not just exist!

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josie76

Quote from: Kiera on November 14, 2017, 04:20:47 AM
This is a rather old thread . . . taking finasteride is totally *redundant* as Casodex is an excellent DHT blocker as well!!! Why would OP's doc even suggest it????

Studies on bicalutamide have been done with dosing up to 5x 'standard'/day with no serious adverse effects (unless allergic which is rare) effective dosing for a non-cancer subject (achm ie: such as rest of Us!!) is 1/2 to 1/3 'standard' very nominal at best!! And, by colliery, that applies to 'cost' as well.

Mods 'ok' with 'standard'? ???

Sorry just thinking of another, more recent thread . . .  8) rant over am *not triggered* any more To Each Their Own!!!

Very true Kiera. Biculatamide has proven to effectively block a higher amount of the body's androgen receptors than Spironolactone with zero other endocinological effects. It has a 1% user risk of elevated liver enzymes and about a 0.3% rate of needing to stop usage due to liver hepatic effects. If the androgen receptors are effectively blocked then there should be no need to limit alpha5-reductase production in the body at all.

Unfortunately doctors like mine will not prescribe it. He has never used it and has no experience with its cancer usage so the answer was no just Spironolactone.
04/26/2018 bi-lateral orchiectomy

A lifetime of depression and repressed emotions is nothing more than existence. I for one want to live now not just exist!

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