I want to talk about Spironolactone (effects, symptoms, experiences)

[AoifeJ]

Hi everybody,

Just a heads up this will probably be a long post.

I want to have a conversation about Spironolactone. I have some questions and concerns about being on it, and have unpleasant side effects that I think are related to it. I next see my PCP on October 7th, and I am planning on talking about these things with her, but I want to figure out exactly how and what I want to say, and want to hear from others about this. Yesterday at my local trans support group, the older trans woman who facilitates recommended I talk to my doctor about finasteride; she said that she was similarly on Spiro for a little over a year (she is 9+ years on HRT, post-op), and didn't feel too awesome on it either. To clarify, I'm a little over 8.5 months on HRT (started Spiro & E on Dec. 30, 2015). She said that while I probably wouldn't be able to go off Spiro entirely, I may be able to reduce my dose and combine with finasteride, which might help negate some of the more negative effects. I'm very interested to hear if others have done something similar to this, and how you felt! (Remember, no discussion of doses! I made that mistake the other day )

So, as most of us probably know, using Spiro in a feminizing HRT regimen is an off-label use. So, it's not what the drug was designed for or intended to treat. It functions as a potassium-sparing diuretic, and suppresses androgenic hormone activity by blocking testosterone receptors.. this to the best of my knowledge. We often hear to drink lots of water on Spiro, so you don't get dehydrated. That's great, and I do, not so worried there.

The trouble is that because this is an off-label use, lots of the effects that we experience would be at least undesirable in others, if not outright red flags. According to https://www.drugs.com/spironolactone.html :

Common spironolactone side effects may include:
mild nausea or vomiting, diarrhea;
breast swelling or tenderness;
dizziness, headache, mild drowsiness;
leg cramps; or
impotence, difficulty having an erection.

I don't experience vomiting or diarrhea, but I do experience mild nausea. Breast swelling and tenderness, 100% check. Dizziness, yes, standing up. Mild drowsiness and feeling to have less energy, vitality, focus.. check. Not often headaches for me, but rarely. I don't really experience leg cramps but I have lost muscle in my legs and experience soreness, aches, fatigue, joint pain. Impotence, difficulty getting and achieving erections, check.. I can still get one but I need to be aroused by my partner, and it isn't as full.

So, okay, these are probably OK, uncomfortable but not the end of the world. To be expected for feminizing HRT, I knew what I was getting myself into. The worst feeling is definitely the having less energy (it's a very noticeable effect) and getting dizzy standing up.

So, here's where it gets tricky. There are more severe side effects - for these, one is supposed to contact your doctor right away, red flag. These include:

increased thirst;
signs of kidney problems (changes in the amount of urine);
mental/mood changes;
unusual fatigue/weakness;
muscle spasms;
breast pain, breast enlargement;
sexual function problems;
signs of infection (fever, persistent sore throat);
severe abdominal pain;
persistent nausea/vomiting;
dark urine;
yellowing of eyes/skin;
easy bruising, bleeding.

Also, serious side effects related to high levels of potassium:
slow/irregular heartbeat;
muscle weakness.

So, just for me personally, I put strikethrough on the side effects that I don't experience; all of these other ones, I do experience to some degree or another. Now it seems to me that especially being supplemented with estradiol, all of the effects pertaining to mood changes, breasts, and muscle weakness/fatigue make sense. Muscle is atrophying and melting, so it makes sense that there will be intense weakness and aches. Mood changes, again, makes sense, this is estrogen we're talking about and also we're suppressing the action of testosterone in a body that's run as normally male for decades.. it makes sense there will be some moodiness, mood swings, depression/anxiety on and off, at least to me.

I find the acute muscle weakness, fatigue, to be by far the most upsetting and undesirable effects. I don't like having so little energy and stamina; it's so hard to get myself to exercise and when I do I cannot push myself nearly as hard as before. I understand part of this is letting go of the testosterone and its influences, and partly because I exercised and played sports all the time as a way of getting away from my loneliness, dysphoria, depression, angst, before coming out or starting HRT.

I've been told that after a couple years of HRT, when the changes are not happening at such an rapid rate, energy levels are better and strength has leveled off, so while we won't have male strength/musculature of before, we can at least feel stronger and more stable than the "active transformation" phase. Intuitively, makes sense, since so much energy now would be going towards the growth, shifts, and changes that are taking place, and there would be more to spare when they are mostly complete. My question related to this is, can you still get to this place of feeling stronger and more stable while on spiro? Or is this linked to bottom surgery of some kind, and no longer having to take Spiro?


The last part that bothers me a lot is the changes in amount of urine, signaling potential kidney issues. Now for even a couple years before HRT I would often have small urinations, just a couple of seconds, less often would I have long streams. Never was one of these people who would pee for like a minute straight. Sometimes my streams would be really strong, but often they'd be weak and short. However, I feel like on HRT it's more frequent for me to have really small urinations. They're not consistent; sometimes I will have a stream that's longer and stronger, but at least a couple times a day I have streams that are very small and weak. There is also the pretty frequent issue of 'leakage'. It's just really hard for me to discern what's okay, and what's concerning.

So, this is where I turn it over to you. I want to hear about your feelings, experiences, symptoms. If you felt similarly, or different. If you reduced spiro and added finasteride, how did you feel? If you've gotten bottom surgery and stopped taking spironolactone, how did you feel? And if you've been on spironolactone for years, do you feel like some of the negative effects dissipated, or got worse? Let's talk Spiro... I'm very interested in what people have to say and hope this is a fruitful discussion.

If you made it this far thanks for reading my super long post! 

[RobynD]

First: sorry you are having these issues and definitely agree with the advice on talking to your PCP about them. Next, like you say some of these effects are likely change related and should be expected with feminization. You are changing a fundamental of your body medically, so i would think fatigue of some sort goes with the territory and that perhaps you have not yet got used to it, or exercised all of the coping strategies.

I did not notice much fatigue on spiro and my dose doubled six months ago - still no noticeable daytime fatigue. BUT and this is a big but, my need for sleep and desire to sleep longer hours has definitely been a part of that. Had I not went from an average of about 6 hours per night to maybe 8, i wonder if i would not have been experiencing more fatigue.

Also i would not put too much importance into Spiro's off label status as a treatment. It has been used for HRT a long time and even it's Wikipedia article mentions it. I have had docs look at my med list and not even question why i was taking it, because along with the hormones it is obvious to them I'm sure. I've never had a medical professional suggest that i shouldn't be or that there is a better option.

Muscle loss and weakness can be mitigated with more working out and exercising. I have increased my workout because i wanted to continue to do the sports i like etc. Had i not, i expect my weakness would have been more noticeable by now.

Sexual function - Yeah totally get that. Erectile ability even with arousal is fairly weak but also to be expected and there are strategies such as Viagra that can give you temporary performance. Urinary changes - yes a lot more frequent urinations and the flows vary from a trickle to strong, i have not seen leakage to speak of. I suspect we have to get use to more female bladder function, but definitely something to ask the doctor.

More sleep, exercise and eating right (why not throw that in there too) i think are important if any of those are lacking in our daily lives.

Hope this resolves quickly for you !

[Michelle_P]

One big step you can take for yourself is to get a good home blood pressure cuff.  The automatic ones are getting fairly cheap, and will let you track changes easily.

Some of the symptoms, from dizziness, to drowsiness and loss of energy, can be related to low blood pressure.  I have tracked mine for years, initially because of pre-hypertension and the need to adapt a very low sodium diet.  On spiro, I suddenly found myself looking at hypotension, gettin BP readings of 85/55 (pulse 55), which were a little too low.  Once I knew what was going on,  I raised my water intake beyond what I had already done, and adjusted my sodium intake from extremely low (700 mg/day) to 1500 mg/day, and then to the normal max of 2300 mg/day, getting my BP up to a whopping 95/60 (pulse 55).  It may sound like a small change, but at that end of the BP range it makes a big difference. 

Your doctor can check creatinine levels as part of the regular blood tests to see if any kidney issues are creeping up on you, and liver enzymes to see if any damage is occurring there.

We are relying on these external mechanisms to nudge our body functions towards what WE want, and it's a good idea for us to supervise the process fairly closely to make sure we don't create new problems.

[Rachel]

I have been off hrt for almost 3 weeks for an operation and can not wait to get back on HRT after the plain lands.

I stopped taking finasteride because the side effects of finasteride seamed to be effecting me. Also my t was less than 3 ng/dl so I chose to eliminate finasteride.

Spiro and high levels of e reduced my T significantly. Spiro is a diuretic so you need
to drink water. It is potassium sparing at the expense of sodium so you need to eat salt.

Spiro tells your brain you have too much t and to reduce production. My gonads are 1/4 the size they once were. I take great happiness in having the gonads turned off and to be removed in 5 weeks. Spiro may require you to take a stool softener like colase.