Spiro

[kimdl93]

A close friend of mine is a nurse practitioner. She worked extensively with HIV patients, and has over the past couple of years expanded her practice to include trans (both male and female). She knows my case and has suggested spiro. Being medication phobic and acquainted with the usual side effects, my initial reaction has been hesitance. But I’m teetering on that edge.

For those of you prescribed spiro.... how would you rate the experience on a 10 point scale?

Thanks!

[AllieSF]

It did its job until not needed anymore. It is a diuretic that is called Adalactone and is referred by that when I was in the hospital for surgery for another issue. It creates more urine and thus you tend to pee more often. As far as I know I had no other side effects beside it being an integral part of my HRT. It can have other more serious side effects that a simple Google search can better identify than I can.

[kimdl93]

So, a logical place to start?

[Lana Mae]

I have been on it for 8 months. I have had no ill effects! I just pee a little more(seriously not a lot more!) I take it with my Estriadol patch and my last bloodwork showed me to be all girl! Testosterone and estrogen are both in female range! I actually feel better than I ever have! It is a decision that you and you only can make! I wish you the best and am sure you will make the right decision for you! I would rate it an 11! Hugs Lana Mae

[Laura912]

Depends. What are you trying to accomplish? Hope this is not medical snobbery, but it would be nice to know her endocrine qualifications. Can she order lab tests to see where your hormone levels are going?

[kimdl93]

Not snobbery at all. Good questions. She works under supervision of a very capable IM/ID doc...who happens to be my primary care provider as well. She has had ongoing, post graduate education in the area (which as CEO of the health center I authorized ;), and yes she can order lab tests to see where the hormone levels are. Both she and her supervising physician are people I have confidence in.

[LeaP]

I’ll be on it 7 years in August. Pretty severe dizziness in the beginning, gradually dissipating as I acclimated. It spiked my potassium, a couple of time dangerously, and managing that is an ongoing task.

[Aunt Kelly]

Kim, are you already on estrogen? It is my understanding that abnormal T levels have some undesirable effects if not replaced with E.

[kimdl93]

I’m not on E yet. My provider was leaning towards Spiro first. If there’s an undesirable side effect of suppressing what’s left of my T, I”m totally ok with replacing with estrogen.

Funny how malleable I am. Two years ago, I would have said, no, not gonna happen. Now, I’m thinking....mmm never say never.

[Laura912]

There is another way, a bit more permanent, to decrease the testosterone. Probably should take estrogen if you go that route.

[Richelle]

I have been on it now for close to two years, with the estrogen patches. My Endo just advises to drink lots of water and stay away from potassium high foods. I have not had any unexpected side effects and the have achieved the desired effects of getting my T and E levels in the normal range for a GG.

Richelle

[donnalee]

I've been on low dose spiro for about 25 years after a heart attack in my late 40s. Apart from frequent urination, which is what it's supposed to do, there have been no effects.

[Teresa]

Kim,
The bottom line is if your not happy with your situation at the moment and under the correct supervision it might help then trust her .

I'm perfectly happy at the moment and see no point in going this route but I admit it's not without some outspoken comments from some of my TG friends , They say I'm a natural but also don't see them totally happy with their situation . Some really are on a carousel ride of blood tests and wrong dosage problems with some odd side effects and in the UK some have waited over two years with the NHS to reach this point .

[Pat]

My experience on Spiro was good overall but after 18 months I started having some issues with my bloodwork. Since I knew by that time I wasn't going to stop transitioning, I took alternative actions mentioned by Laura in reply #10 and stopped the Spiro.

The most common issues that I know of among my friends are:

1. Falling over at least once. You have to stay hydrated at all times, or your blood pressure will drop when you stand. It's not hard to remember to stay hydrated since the Spiro makes you pee more, but you have to stay attuned to your body and drink when it tells you to. Usually you need to fall down at least once to learn that this isn't something that only happens to other people.

2. You'll probably never have an unbroken night's sleep while you're on Spiro. For those 18 months I was up at least once a night to pee.

3. You'll suddenly start eating pickles. Your body craves the brininess of pickles, capers or olives. I didn't even notice that I had started buying a jar of pickles a week until I got off Spiro.

4. I and many of my friends noted the decreased libido as a positive thing. I felt less like I was being run by my body and more like I was in charge. YMMV

[LeaP]

Usually you need to fall down at least once to learn that this isn't something that only happens to other people.


Yes. Early on I went out cold getting out of bed and clocked my head but good on the bed frame. While I don’t usually have that level of dizziness anymore, I’ve learned to sit down in a hurry!

Funny thing about pickles. I bought several jars a few weeks ago. Then ate an entire jar between the grocery store and home ... approximately 10 minutes. I’ve always consumed a lot of salt, though, and my blood sodium levels are quite low, even before the Spiro.

[Nikki.]

when I stopped spiro for a month i couldn’t believe how salty my food had gotten!

[kimdl93]

Ok, downsides noted. In your experiences, what were the benefits, if any, and were these sufficient to compensate for dizziness and a craving for salty foods?

[Nikki.]

After about two weeks off it, I started getting really irritated at things- stuff not put away,’chores not done, crappy self centered driving around me, etc. Normal irritating stuff in the course of life. And it would really piss me off, and I would complain about it and be grumpy. And then I realized that was my normal state of being as a dude, before hrt. No thanks. So I started back up around the first of July. It’s taken 2-3 weeks, but I can tell my mood, attitude or whatever isn’t as reactive towards anger. Unless otherwise dictated by health concerns, I don’t plan on going off it again :)

- - - Updated - - -

This may not apply to you Kim, but i was moderately dysphoric; kinda miserable all the time with some occasional bad periods. HRT took the edge off that. Most days now I do fine.

[Devi SM]

I'm so far 15 months on HRT with spiro.
Cons: need to pee very often. Driving for Uber is a complication but I lear that Starbucks are all around.
At night I avoid drinking liquids 4 hours before going sleep but need to pee 2 times during the night.
Craving for salt made me eat so many lemons a day that destroy the enammel of the 3 front teeth, now I'm needing crowns.
At the beginning had to get used to stand up slowly to ot get dizzy but that pass long ago.
What I know that with the long term side effects would be dangerous so I'm thinking on orchiectomy because, any way, no erections needed.
Testosterone is reduced and a lot of loss of energy. Need to learn to do things no hard but wise.

Pros: zero libido but still having sex with wife when needed but less often.
Erections just when needed, no morning woods..
Estrogens had worked miracles without the presence ce of testosterone.

[LeaP]

I started with Spiro only for the first few months. Dropping T levels made a huge improvement in mood. Irritability went down rapidly. Temper flare-ups (which were hair triggered and titanic) dramatically improved and occurred less frequently. All this before reaching target levels or full dosage, which took a year or so due to my potassium levels.

I experience T as a very powerful irritant. Life is much more pleasant with it held at a low level.

[Teresa]

Nikki/Leap,
That's one benifit I could live with , being grousy and picky and temper flares in male mode . Saying that if I'm totally left alone by my wife as a reminder of things as they use to be I'm very much calmer and less prone to those problems . OK my wife called it burying my head in the sand but I've now found excluding some people or situations from my life does help , all to do with brain chemistry I guess .

[Jeri Ann]

I have never heard a suitable explanation for starting Spiro in advance of Estradiol. Only on this forum have there been a few reports this. Of the many TS I know, S and E were started simultaneously. It seems simple. Increase Estrogen levels as you decrease Testosterone. That exchanges one primary sex hormone for another. And as Aunt Kelly mentioned, and I understand as well, a primary sex hormone is necessary for optimum health.

As for scoring Spiro? For suppressing Testosterone it works well. Tens of thousands have used it successively. Maybe give it an 8 in that respect. That is, if you don't mind your male functions to diminish over time. A good side effect that has already been mentioned is the suppression of aggression.

On the other hand, Spiro can have very negative side effects in some people. The diuretic effects are the most obvious in the vast majority of people. These diuretic effects, while annoying, can be only the tip of the iceberg. It is common for dehydration to spurn leg cramps, some of which can be serious. In the past 1 1/2 years I have had a lot of problems with my legs. Cramps, circulation and muscle weakness are what I have dealt with. I am convinced that Spiro either caused some of the problems or, at least exacerbated them. After quitting Spiro and twelve weeks of Physical Therapy, my legs have greatly improved.

Leg problems are actually so prevalent that, among the transwomen I know, many have have had their Testosterone producing parts surgically removed. I couldn't wait until I got close enough to surgery to stop the Spiro. When I got within six weeks of my surgery I quit, threw the rest away and told my pharmacy to remove it from my medications. Now, two weeks post op, I have been Spiro free for two months.

I know some here have reported no issues. Their experience with HRT amounts to minutes when compared to the rest of your life. I was on Spiro and Estradiol for 19 years. Also, I did some checking. The dehydration thing is more serous the older you are. So, if you are serious about suppressing Testosterone production for the rest of your life, then move toward a surgical solution as quickly as possible. If you are not that serious, don't screw up your body by messing up your hormones. Get another hobby. Just sayin.

[Nikki.]

Nikki/Leap,
That's one benifit I could live with , being grousy and picky and temper flares in male mode . Saying that if I'm totally left alone by my wife as a reminder of things as they use to be I'm very much calmer and less prone to those problems . OK my wife called it burying my head in the sand but I've now found excluding some people or situations from my life does help , all to do with brain chemistry I guess .

If the only desired outcome was the reduction of temper et al, there are better ways. Mindful Meditation aka Vinpassana comes to mind. It’s free with no negative side effects :)

[Heidi Stevens]

After getting several low readings on my T levels and having really low blood pressure, I weened myself off Spiro earlier this year. My T levels are steady and my BP is up. I was experiencing dizziness when I stood up quickly or made a quick spin.
Two years ago I suffered a bad fall when I passed out from turning quickly and bounced off a desk. After a year of testing, we deduced it was the Spiro, so I took 6 months and worked my self off and now I feel great.
306039

[Teresa]

Nikki,
Taking away the stressful parts of my life gives me enough of a balance , male mode just pushes me back , I know it's going to take time .

Heidi ,
In that case does Spiro reduce BP in most people ? At the moment I'm experiencing dizzy spells but I'm told it's vertigo but I know my T levels are normal to high and BP is OK , I donate blood twice a year so I'm certain if I had any problems I would have been notified .

As many have said in the past it's not something we should play around with , I am concerned with some of my TG friends who are self medicating and often sharing or swapping hormones .

[Lana Mae]

It could be dangerous if not under a doctor's care! Labs have to be drawn to determine if the dosage needs to be changed! A drastic change in potassium level can possibly cause death! Dehydration is a problem and can be life threatening! Spiro is nothing to be messed with without supervision that only a medically qualified person can do! Just my nursing kicking in! Hugs Lana Mae

[Jeri Ann]

For those of you prescribed spiro.... how would you rate the experience on a 10 point scale? Thanks!

This is the question asked in the original post. Respond if you have been prescribed Spiro. If you need to discuss other things, start another thread.

[Sarah Doepner]

I have a difficult time rating Spiro for it's own impact since I started E and S at the same time. I'm fine with the reduced libido, shrinkage and I don't have a problem with dehydration and frequent urination only because I've been taking finisteride for a few years longer. I have had some problems with leg cramps, but diet and hydration seem to have helped. It's not that I don't have the problems associated with taking Spiro, I'm just used to dealing with them. I'm not so pleased with the loss of upper body strength as it's showing up more and more all the time, I'm almost at the 11 month mark. I'm still having problems with my foot, so part of that might be the sedentary life I've been living.

I posted earlier that after I started HT I became much less anxious and more comfortable in my choice and place in the world. There is disagreement as to the cause of that. The hormones aren't known to have any kind of direct psychological effects so it may have been the benefit of finally making the choice and getting that weight off my mind. Others suggest the reduction in Testosterone in the system can have a calming effect.

Overall I'm still all in and rate the whole package at 8-10, I just can't tell you which is which because of the way I got started.

[AllieSF]

It lowered my T level to almost zero and then upped itself a little to a woman's level. I rate that a 10, it did its job. It increased the number of times I had to urinate, which, since I was also incontinent from prostate removal many years ago, it cause several very embarrassing accidents and ruined one very nice brown suede skirt. That rates a 2-5, depending on accident or no. Now that I had an orchiectomy, I am off spiro. I rate that a 10+!!

[kimdl93]

Wow, a lot of real world experience and clinical knowledge to digest here. I have another thread in mind.....but thank you all! This discussion has been very helpful! More comments welcome ;)

[Jin Xer]

I've also had a lot of the experiences and side effects shared here, but probably the best one was the shedding of body hair. From having a hairy chest and legs, it's now more sparse, with a fine, short, almost vellus-like quality, even on my arms. Gone from my back are those odd patches of longish, curly hair. I even quit shaving for several months just to observe the changes. It's been a wonderful experience. My facial hair also grows slower and is all white now. No more 5 o'clock shadow if I choose not to shave. I'm also on E, so I can't vouch this is all due to the Spiro.

As Jeri Ann mentioned, I've never seen from any authoritative source that mentions an anti-androgen for transwomen hormone therapy w/out also initiating estrogen. From what I understand, the main reason for the anti-androgen in the first place is to lower the amount of estrogen necessary to achieve female hormone levels. But Spiro is also used outside HRT for hair loss and high blood pressure, too. So, as Laura said, I guess it depends on what you want to accomplish.

I can't give a rating, really, and I haven't been on HRT as long as a lot of girls here, but I consider it a success thus far.

Now, if you'll excuse me, I have to go pee. :)

[Anne K]

Been on Spironolactone and Estradiol for 18 months. T level went from 140 to 4. E level is in normal 35 year old range.

Pros: Completely eliminated the gender dysporia stress. I'm very comfortable however I present.
I I love pickles, olive, etc but salt craving has increased.
Cons: Complete evaporation of libido. I never even think about sex and I really like not having that T driven background chatter. I do make an effort to satisfy my wife, though ZI haven't had an erection in 15 months.

Overall, been very satisfied with the journey.

[JaytoJillian]

My first provider put me on spiro and held estradiol hostage until I agreed to family counseling (I said no way). That crap wracked my body--I am an athlete. I workout hard 6-7 days a week. Spiro killed my endurance caused grotesque swelling in one leg and made me overall unwell. I personally give it a 1 on a 1-10 scale.

Current provider says up-to-date doctrine is to let estradiol alone tamp down testosterone levels, That practice has worked like a charm for me. YMMV.

[MiraM]

I would have to rate my experience with Spiro as a 10. My T level is almost non existent, and it has helped get my blood pressure under control (BP meds alone were only partly effective). As others have said, functioning of the boy bits has diminished greatly, which is a wonderful thing on it's own.

[jentay1367]

I'm not sure what you mean by "rate it"? For what? Efficacy? Grief? General feeling? Your question is pretty subjective and you probably need to be more specific?

[Nikki.]

I would explore starting E with your provider and see what happens to your T and E levels. I stopped taking spiro at the end of august and feel much better. I?m doing blood work in a couple weeks to see how much my T levels have come back up.

You really need to understand what your goals are with changing your hormone levels- mood, some feminization, transition, experimenting to see what it?s like, etc.

[AllieSF]

Kim, with your contacts just find the right endocrinologist and follow their recommendations. If you want slow tell them, same if you want fast. There are several different alternate approaches that to me just complicate the process and may delay any desired results. Good luck and enjoy the ride. It is wonderful and fun!