Spiro

[Aprilrain]

So I've been on hormones since February of 2011 or was it January? Anyway in all that time I've never taken Spiro.

Originally I was self medicating for 6 months while I waited to get in to see the Endo. At that time I was taking Cyproterone. By the time I got to the doc my T was lower than the normal range for a female.

I stopped taking it for a number of reasons not the least of which was that it made me depressed. My doc said the E and P would keep my T down at that point and I did not need an anti-androgen.

In the last 6 months or so I've noticed things that indicate to me that my T level must have gone back up. I scheduled with my doc and asked for Spiro which he prescribed. I got my hormones tested at that time as well but haven't gotten the results back yet.

I'm curious, what can I expect from Spiro. I know it makes you pee a lot and can really sap your energy by reducing your BP. What else?

[LeaP]

I have had no energy reduction. I have more, if anything. I had severe dizziness problems at first, including an incident where I went out cold and clocked my head on the bed frame. I got used to the effects after a couple of months, but still have minor dizziness issues occasionally. You have to keep your water intake up. My potassium levels are pinned at just above the normal range, so I have to watch that.

[StephanieC]

I don't have any energy reduction either. My potassium tests high but I don't feel any issues...I do try to watch my water intake.

Sometimes I might get a moment of dizziness getting up or bending down/up.

My doctor has recommended doubling my dosage so we'll see if that causes any reactions for me.

-stephani

[crystalann]

I was fine the first few months but started getting leg cramps. It did get better after 6 months or so.

[whowhatwhen]

I'm kinda worried about the getting up and passing out thing too.
I've yet to start taking my spiro but I do have low energy to begin with.

Why didn't you ask for Cyproterone if it worked well to begin with?
The difference as it was explained to me was that it may be slightly harder on the liver.

[Angela Campbell]

At first some dizzyness, and some foot cramps, but that has pretty much stopped. No problems with it anymore. Not much in the way of loss of energy, but yes I do pee a lot. It was Progesterone that gave me depression.

[JohnH]

I had no issues with spironolactone. Then again I have been taking a low dosage of that medication since at my age the testosterone level would be low (I am 61 years of age). Even my potassium level is normal.

As an aside I have not noticed any decrease of my upper body strength from M2F HRT given that I had a low testosterone level to begin with.

Johanna (John)

[Aprilrain]

Why didn't you ask for Cyproterone if it worked well to begin with?

It's not available in the US and it made mr depressed not a road I care to travel again.

[CharleneT]

Spiro is often over done ... you truly do not need much ( if any ). A small dose per day will do all that it needs to do. I would recommend that you investigate adding Avodart -- which will have much more affect on the T levels and more importantly -- what any T in your system can *do* !

I took about 1/4 the norm of Spiro and with Estrogen and Avodart. My T levels were in the basement almost immediately ;)

[Rianna Humble]

Just a reminder folks that we are not able to prescribe medicines, although it's OK to give personal experience without mentioning doses.

[LeaP]

Spiro is often over done ... you truly do not need much ( if any ). ...
I took about 1/4 the norm of Spiro and with Estrogen and Avodart. My T levels were in the basement almost immediately ;)

Mileage varies. I also take a relatively low dosage of Spiro, along with finasteride and E. My T at last test (a year in) was still higher than I would like, but then, my starting T levels were quite high (800 something at nearly 60). Well see next test ... for which I'm overdue.

[gonegirl]

In the last 6 months or so I've noticed things that indicate to me that my T level must have gone back up........
I'm curious, what can I expect from Spiro. I know it makes you pee a lot and can really sap your energy by reducing your BP. What else?

Hi April,

In the past I could feel pretty strongly when my T began to go up. I was like one of those tee shirts that read Instant a**hole - just add beer except beer would be T.

Spiro really walloped me for the first 4 months. I felt very fatigued all the time and exercising became increasingly harder to do. I wasn't sleepy, rather I had zero energy and a dramatic loss of stamina. Even walking from my car across a parking lot made me out of breath. My BP dropped a lot and I got very lightheaded and dizzy when standing up too fast. I only got a few cramps (predominantly in my hands and legs) but that was only when I wasn't drinking enough water. (Make sure to do that!) After about four months all of those symptoms subsided except for the last two.

The other thing to consider is that dosage will probably play a big part in the effects you feel. My Dr. started me at a low dose and worked up to a pretty high one in order to do what we needed it to do. You might not need a lot.

Sincerely,
Simone.

[TeresaL]

"I'm curious, what can I expect from Spiro. I know it makes you pee a lot and can really sap your energy by reducing your BP. What else?"

Add to Simone's reaction; cold sweats and nausea. I disregarded my assigned prescription and cut it to 1/4 of the original dosage. My T is in the basement, and I'm taking the smallest pill, 1 per day. My starting T was 300, at 65 yo. It's a whole lot lower now. Our individual reactions are all over the place.

Along with taking estrogen, my GD is virtually non-existent.

[Angela Campbell]

Well no one has mentioned the obvious but you probably already know...very quickly the "problem" of that thing you wake up with in the morning goes away.

[Nigella]

Angela, do you mean the "missus" :p

[Angela Campbell]

I wouldn't think of "the missus" as a problem....lets just say it is "hard" to describe nicely.


then again from what I have seen it can run her off too sometimes.

[gonegirl]

I was just thinking the same thought as Nigella. :-)
Unfortunately that did actually happen to me :-(

[Aprilrain]

in my case the missus is long gone

[stefan37]

that's funny Nigella, but so often true.

[TeresaL]

My missus is there, but "that problem" doesn't come up anyway. We do hugs n cuddles instead. Neither of us have libido, so it's a non-issue. ;-/

[Rachel Smith]

I was started with the same dosage AM and PM. After about 6 months endo wanted me to take a double dose in the AM. I became totally lethergic wanting to do nothing but sleep. I ask if I could take the double dose at night because who cares if you are lethargic while you are sleeping, lol. Endo agreed so that is how I do it now. I now remember dreaming more now not that I can remember a specific dream but just that I had dreamt, before the spiro I wouldn't ever remember dreaming. Dizziness which was worse when I first started but never passed out. I still do have some dizziness but not as bad as when I first started.

[Leah Lynn]

Spiro is a potassium retaining diuretic. Makes you pee, but retains potassium. It also is used as a blood pressure reducer. So, I'm on two B/P meds. It works for me! Being 62, I haven't noticed excessive urination; I go a lot anyways. I've also had problems with the dizziness before, so no noticeable difference. I'm naturally lazy, so I can't remark on lack of energy. As far as potassium, I can't have bananas, and have to limit potatoes and tomatoes. And I can't take a multivitamin either.

Leah

[whowhatwhen]

No bananas or potatoes?
C'mon, stop posting scary stuff!

[Leah Lynn]

It seems I run high on potassium normally, so the doc said NO bananas (well, okay, they are rather fattening), small amounts of potatoes (they're carbs, I don't need them), and small amounts of tomatoes. That one is the killer. My wife was Italian (granddaughter of a mob boss!) and I attended a cooking school in Livorno, Tuscany, Italy. I can't cook without tomatoes! Or onions, or garlic, for that matter.

Leah

[sandra-leigh]

Last night at a good friend's place, spiro happened to get mentioned in conversation (with regards to blood pressure.) My friend just happens to work for a company that markets an electronic medication resource for doctors, so he looked it up.

The list of known side effects for spiro are extensive. Malaise is apparently very common. Depression is not uncommon. And a host of physical effects.

The resource also had the ingredients of the pills, including the non-medicinal ingredients. My friend kept saying, "Oh my God!" as he realized what each ingredient does to people.

I am off and I am glad I am.

[whowhatwhen]

You can say those things about almost every other prescription medication in existence though.
Some people will have bad side effects while others will be perfectly fine and vice-versa for another medication in the same class.

In the end you need to measure the potential quality of life increase the medication may provide against the negative side effects that can occur.
For example two of the meds I'm on can cause cancer but compared to not taking anything the quality of life increase is worth the risk.

[I Am Paula]

I'm on Cypro, and my Doc is worried that my T is a little low. He has suggested I don't need an AA, and that scares the hell out of me. Even experimenting with going without an AA, the first sign of T returning will freak me out. I listen to and trust my Dr., and he's certainly a better endo than I am, but I'm still taking the cypro, against his recommendation cause I don't want to turn into a hairy beast that wants to go into the forest and shoot animals.
I'm sorry that this veers from the OT a bit in that it's not about spiro, but the rest is on point. Anybody on a E only regimen?

[sandra-leigh]

I am not taking any anti-androgens these days. When I remember to take my estradiol patches regularly, my T levels stay low. When I skip patches for long enough, I can feel my T level climb again. The effect is not immediate for me: it can be several weeks. Sometimes I have noticed my T levels climbing shortly after I resume patches; about a week later it heads back down again.

A number of people here have reported noticing if they miss even one dose of their estrogen; I am much less sensitive than that.

[LeaP]

... A number of people here have reported noticing if they miss even one dose of their estrogen; I am much less sensitive than that.

My wife is more sensitive to my missing doses than I am.

Androgen receptors down-regulate in the presence of sufficient E. But I would be concerned about eliminating AA's also. My E is right on target with low doses of both AA's and E. My T is still too high. I would likely have to take a larger E dose to stop the AAs, which would increase E-related risks. No free lunch.

[Linda St. John]

Really interesting thread you have here. I've been on Spiro and E since 1998 and pretty well experienced most of the effects mentioned , especially the low BP and the ensuing dizziness ....in fact : it was this danger that made up my mind to have an orchi in 2004. I was advised by my GP and a specialist at the Clarke Inst. here in Toronto: that would mean "less drugs". Anyhow, my adrenal glands still produced plenty of T, and so ..I'm still on Spiro 10 years later.
I'm not complaining at all....I 'm in good shape for a 59 year old ...
No regrets, Linda

[Aprilrain]

That's interesting Linda, one of my concerns is that after SRS my T will be too low. I know lots of TS women regard T as Satan but a little bit is good for you. I know everyone is different but Your experience gives me hope that my adrenal glands will produce just enough. I know a post OP lady who's SRS dr prescribed her a T cream and our endo was very skeptical, he too think T is evil.

[danielleb]

I've been taking Spiro since I started and for me it is almost more important than E. The first dose made me woozy and knocked me down, but it evened out. Two years later I'm still on a high dose. I have low energy of course, but it's a small trade off for a diminished sex drive. I don't have none, but I was way out of control before. Now i't s just in my head and not in my pants ;) . I'm also on finasteride. It's not just for hairloss, it blocks DHT, the most nasty testosterone. To me it kind of takes place of some of what cypro would do. My T levels a below measurable and my doc wants me up a little but I don't care.

[celeste26]

The use of spiro as an anti androgen is on off label use. Its primary use is as a potassium sparing diuretic for those with congestive heart problems. According to long term studies there is only about 5% of the users who get any anti androgen action from this drug, and there are many downsides to it as the posts here have proven. Great attention must be paid to make sure the potassium does not go over the limit.

There are other anti androgens out there without such dangerous side effects. Until an orchi or GRS is done some sort of anti androgen will be needed and I dont even want to think about taking such a drug as Spiro for the rest of my life.

[gonegirl]

Hi Celeste,

Can you please provide links to these long term studies of spiro you are referring to?

Sincerely,
Simone

[sandra-leigh]

celeste, my T levels were just fine without any anti-androgen, when I take my estradiol. As LeaP indicated, with enough E, your T will stay low... or at least that's how it goes for some of us.

[LeaP]

Please do - I've been reading and searching. The only such references I can find are related to gymecomastia rates in patients taking Spiro for things like chronic heart failure (CHF) and acne. One such is the RALES study (http://www.nejm.org/doi/pdf/10.1056/NEJM199909023411001), which is frequently cited. It reports 6.9% of male patients developing gymecomastia, for example. Dosages are much lower than taken by TS, though. And to the point of risk, death from all causes in this population (CHF patients) was 30% lower than the control group.

[Ariamythe]

According to long term studies there is only about 5% of the users who get any anti androgen action from this drug,
I'm not sure which study you're referring to. There hasn't been a study of sprionolactone use alone done at HRT levels that I've been able to find. There haven't been good, double-blind experiments done on HRT generally; only observational studies by those who run the clinics who prescribe HRT, and that means almost never having long-term data on patients *just* receiving high-dose spiro.

A lot of research has looked at spiro in on-label use cases, which means they've been looking at dosages up to 10x lower than those taken for HRT. And in those studies, the most common side-effect was altered potassium levels and lowered libido.