Spiro Side Effects

[emeraldmountain]

Hi,

 

I see this topic has sort of been addressed, but I couldn't find any posts about this questions.

 

Does anyone have any advice on mitigating the spironolactone induced dehydration, high levels of thirst, and very frequent bathroom trips? I have tried keeping well hydrated, but it all seems to pass right through.

 

Thanks.

[Carolyn Marie]

Yes, the side effects can be troublesome.  That's a big reason I did an orchiectomy to deal with my T.  The only drug that comes to mind that is often used in place of Spiro is Finesteride.  It's effect on T is not as great as that of Spiro, but it has fewer side effects.  This is really something that you should talk to your doctor about.  There may be other alternatives.

 

Carolyn Marie

[emeraldmountain]

Thank you @Carolyn Marie. Unfortunately, finasteride seemed to have possibly contributed to depression/other issues and my health care providers have not offered any advice when I asked.

[Ivy]

Spiro destroys my sodium levels.  I don't take any T blockers at this time.  I do take Estradiol and recently added Progesterone.  It is my understanding that the Estradiol sometimes represses the T.

I recently changed doctors and she has offered me finasteride.  I'm considering it, but nor sure.  

[KathyLauren]

It is a pity that cyproterone is not allowed in the US.  When the dehydration / peeing effect of spironolactone started to get annoying, I asked my doctor to switch me to cypro.  It is not standard procedure here, but she approved it on an informed consent basis.  It did the job and I was much more comfortable.  For those in other countries, it is a good alternative.

[AllieJ]

44 minutes ago, Ivy said:

Spiro destroys my sodium levels.  I don't take any T blockers at this time.  I do take Estradiol and recently added Progesterone.  It is my understanding that the Estradiol sometimes represses the T.

I recently changed doctors and she has offered me finasteride.  I'm considering it, but nor sure.  

Ivy, yes, you are correct, Estradiol will suppress testosterone in most people if the E levels are high enough. The problem is that most doctors refer to The Women's Health Initiative, a study done over 20 years ago on cis women which linked hormones with health risks, but this study is outdated as it was carried out on synthetic hormones like Premarin and Medroxyprogesterone which do have high risk factors. We almost all use bioidentical hormones now, which don't have anywhere near the health risks (the same as naturally occurring in cis people) so can be used at higher levels. 

 

All anti androgens have negative side effects, and there is a growing trend to avoid using them by increasing Estradiol levels, thereby lowering the overall risks. This is known as Monotherapy. Doctors are slowly learning this, but the majority are still prescribing from the outdated information. A friend of mine had to cease long term Spiro for her GCS, but she had become reliant in the Spiro for control of body fluids, and ended up having extreme edema in her legs for weeks post op. She had to return to using diuretics, but her doctor started weaning her off them so she wouldn't carry such risks into the future. (Caution: you can't just stop using Spiro, and must taper off slowly under medical supervision to avoid similar problems)

 

Hugs,

 

Allie

[KayC]

Hi @emeraldmountain
Well I am at the beginning of HRT and my doctor is still working to get the right levels of my meds.  He started me on Spiro as an anti-androgen (and it also became my new BP med - it works REALLY good for that).  I was already on finasteride on my own (for my hair) and he said I could stay on that.
He has been ramping up my estradiol to try to get all my levels where they need to be.  That is still work-in-progress.

My only complaint on the Spiro is the night-time bathroom trips - usually once or twice a night and sometimes it will wake me up early for another.  I don't feel, or assess I am dehydrated and I try to drink enough water during the day (but taper off at night).
I would prefer options to get off the Spiro, but I want to get my estradiol levels where they need to be first.  So, it's for future discussion with my Dr. 

[Charlize]

I, like Carol Marie, opted for an orchiectomy.  I found the dehydration and cramping i was experiencing to be problematic.

As i thought of the long term a relatively small surgery that my cardiologist might approve seemed the correct alternative.

 

Hugs,

 

Charlize

[emeraldmountain]

Thank you everyone for your thoughts.

[Liz-Liz]

I had a similar experience with spiro. At first, I was having to pee pretty regularly about every hour. In time my body did adjust to a manageable degree. I also talked with my doctor about its. They had me start a lower dose of spironolactone but increase the frequency of estrogen to find a good balance that worked for me.

 

I strongly preferred bicalutamide, prior to orchiectomy. I didn't have to take it as frequently, I didn't notice any negative side effects, and it worked wonders for clearing up stubborn acne which was a nice bonus.

 

It was also explained to me that mono- estradiol treatment has shown positive results with their patients that have had problems with blockers. I elected not to go this route, but I'm glad it was presented as an option.

 

Best of luck on your journey! 

 

 

[emeraldmountain]

@Liz-LizThank you for this info!

[Owly]

On 10/25/2023 at 4:07 AM, Liz-Liz said:

I had a similar experience with spiro. At first, I was having to pee pretty regularly about every hour. In time my body did adjust to a manageable degree. I also talked with my doctor about its. They had me start a lower dose of spironolactone but increase the frequency of estrogen to find a good balance that worked for me.

 

I strongly preferred bicalutamide, prior to orchiectomy. I didn't have to take it as frequently, I didn't notice any negative side effects, and it worked wonders for clearing up stubborn acne which was a nice bonus.

 

It was also explained to me that mono- estradiol treatment has shown positive results with their patients that have had problems with blockers. I elected not to go this route, but I'm glad it was presented as an option.

 

Best of luck on your journey! 

 

 

Hi @Liz-Liz 

May I ask what are (if any) side effects of the bicalutamide. A friend asked me why they didn't just start me on it instead of spiro. He works with trans folks. 

[Lorelei]

I have been on spiriolactone for two months and have noticed any increased amount of urine. During the day, I pee like once every five hours and sleep through the night, I sleep like 9 hours a night. I drink like 3 quarts of water a day. It has definitely killed my testosterone levels and my blood pressure is more stable and normal. 

[Owly]

On 2/8/2024 at 5:27 AM, Lorelei said:

I have been on spiriolactone for two months and have noticed any increased amount of urine. During the day, I pee like once every five hours and sleep through the night, I sleep like 9 hours a night. I drink like 3 quarts of water a day. It has definitely killed my testosterone levels and my blood pressure is more stable and normal. 

 

I was taken off the spire and started the E alone: . Per my gender care doc, l can stop taking the spire when I start injections because high enough E levels will surprise T altogether

 

[Liz-Liz]

On 1/27/2024 at 4:14 PM, Owly said:

Hi @Liz-Liz 

May I ask what are (if any) side effects of the bicalutamide. A friend asked me why they didn't just start me on it instead of spiro. He works with trans folks. 

Sorry for the delay, life's been crazy lately. Tbh I totally forgot about this site while I was sorting things out. Anyway,

 

To answer your question, I personally didn't notice any serious negative side effects from it. My skin may have been a dryer but since mine is naturally oily, that was a welcome change. I liked that I only had to take it twice a week. Between bicalutamide and spironolactone, I'd personally recommend bicalutamide every time unless the person has other medical concerns.

[Ashley0616]

I haven't had any negative side effects other than having to use the bathroom a lot. It has given me softer skin and my leg hairs don't grow as quick. It even makes me feel more like a female than male and I love that. Hormones on the hand made me understand that I'm bisexual I see guys in a different way. I would be happy with either one. 

[Owly]

So I wanted to share that I had a consult with a gender care specialist. He told me that if we get the E levels high enough, the T will be suppressed without the use of Spiro. He said the day I start the E shots i can stop both the oral E and the Spiro. My journey is unique in that I am not at a point where I want to transition but be more androgynous appearing/feeling. I told him I'd prefer not to take pills.  He also asked if I was letting the E pills dissolve under my tongue as much as I could. I was like "nobody told me to do that". He said it helps with absorption by bypassing the gut/liver processing of it.