The spiro is kicking my ass

[Myojine]

omfg this crap is like.. awngkjanjwabfhawbgfhwafbwafwagwa

its kicking my butt like srsly.
I heard "being a girl is pain" but im so sleepy... and i already had low blood pressure...
is it normal for your joints to hurt a bit?
dahell...?

[Aprilrain]

the blood pressure thing is why I skipped Spiro and went for Cyproterone instead. I hear you get used to it after awhile though.
good luck

[sandra-leigh]

I never had joint ache problems myself on spiro; I do not recall anyone mentioning that, but I would not rule it out.

The introductory acclimatization half-dose was okay for me at the beginning; it was went I up to the regular dose that I really got hit. Even after I backed down to the half-dose, it took months before my sleep recovered. It wasn't until close to 11 months in that I was feeling that perhaps I could try the regular dose again. It happened, though, that by then I effectively no T left, so my doctor took me off spiro.

What surprised me after I got off of spiro was how within a week, confirmed within two weeks, I stopped feeling short of breath with just fairly small amounts of movement (such as one flight of stairs). I had thought that was due to having put on notable weight, or due to the estrogen, and had no idea that it was related to the spiro.

I gather that the majority of people are able to tolerate moderate to high doses of spiro, but I have encountered a few who (like me) are fairly sensitive to its effects and never really adapt to it, and I have encountered a small number who (for whatever reason) cannot take spiro at all.

The cyproterone that April mentions is not available in the USA, due to concerns about liver damage. I am being monitored in case of liver affects, and the intro dose for it was no problem for me, but it is something that has to be continually monitored. I am now on a larger dose of cypro, and it seems to me that has disturbed my sleep patterns, making it difficult for me to get a deep sleep and difficult to sleep more than 4 or 5 hours at one time. (Some of the other medications I have taken have affected my sleep quite dramatically; I am more sensitive than most in that regard.)

[Niya W]

Form me it was the leg cramps from hell. Bartender get me a bottle of vodka.

[Jorja]

Joint ache problems are common when beginning Spiro as well as many other medications used to reduce blood pressure. Give it a couple of week and you should get used to it. If the problem persists or gets worse contact your doctor.

[Myojine]

we figured out the joint pain is coming from the cold weather. going from daily temps of above 70F to and enviroment of 33~36 is giving me joint pain.
i hate the cold....or some of it at least.
this stuff is making me really sleepy..

[abigailf]

I have experienced the loss of breath. I haven't noticed the being tired part. I also noticed that my normal 5 mile runs have been reduced to 5K runs.

[Stephenie S]

Warning. Dosage discussion.

This is a common problem.

Often physicians fail to explain medications fully. Actually, it is the nurse's job to explain the medications prescribed by the doctor. But there is not always a nurse involved at a doctors office.

But to get back on track, spironolactone is NOT a transition drug. It is a BLOOD PRESSURE medication. It does have the fortunate side effect of blocking testosterone. However, always remember that spironolactone is primarily a blood pressure medication. Here's the rub and here's the important thing to remember about spiro. The normal dose for lowering blood pressure is 25mg to 50mg per day. This dose is quite effective at lowering blood pressure.

Now, to effectively block testosterone in a human male, we need much higher dosages of spironolactone . I have friends who take more than six to eight times the most common dosage a day. If the normal dose of spiro is x-mgs per day, can you imagine what eight times that per day does to your blood pressure? Yup, your blood pressure falls right through the floor. And what happens when we experience a drastic drop in blood pressure? Right again. You can pass out. You feel weak. You feel faint. You feel tired all the time. If you stand up too quickly you can fall right over.

Had enough? Well there's more. Spiro lowers your blood pressure by reducing your fluid volume. How does it reduce your fluid volume? It makes you pee. Spiro is a diuretic. Diuretics make you pee. So, what do you think happens in the middle of the night when you have to get up to pee? You've been lying down all night. Now you get up to pee, in the dark, after lying down. Guess what happens to your blood pressure. It drops drastically. And then YOU drop drastically right to the floor. ALWAYS hold onto something when you get up at night to pee. ALWAYS stand up slowly when you first start taking spiro.

Spironolactone is a dangerous drug when taken in the amounts and dosages needed to be effective in blocking testosterone. The good news is that your body can and does adjust to this quickly. In two or three weeks you will be back to normal and feel just fine. You just need to be careful during those first 2 to 3 weeks while your body adjusts to this new medication.

Hormone therapy is dangerous. This is why we always take it under a physician's care. Unfortunately, many doctors just don't explain all the side effects of all the medications they prescribe. Hormone therapy has many dangerous side effects. Just be careful out there.

Auntie Stephenie

[Niya W]

When I first start spironolactone I could not drink. If I did I felt it in my stomack like I just tried to sprint a 5 k.

[Jordie]

I could not tolerate spiro - I am now on Finasteride. It's much better in my opinion. Not sure if it is strong as the spiro but it does the work and it also helps with hair growth.
How many of you use It?

Jordie

[CharleneT]

Just to add a little to Steph's great reply: the high doses used by so many docs for transition are not needed in most cases. When I was on HRT, I took a dose around the std used for lowering blood pressure. Not the hundreds of mg's used normally. My Testosterone levels were in the basement in 3 weeks flat and stayed there till I had SRS. Between estrogen and a low dose of Spiro, you will have plenty big changes in your hormone balance. The low dose route is especially good when combined with Finasteride or Dutasteride.



I could not tolerate spiro - I am now on Finasteride. It's much better in my opinion. Not sure if it is strong as the spiro but it does the work and it also helps with hair growth.
How many of you use It

Jordie

It is not a matter of strength, they do different things. Although in both cases the result is a lowering of testosterone.

[abigailf]

Of course, not everybody reacts the same to medications, however ...

Let's look at this from the other side.

A common problem with Spiro is it is not a very effective medicine for lowering blood pressure. It does not work for many patients, especially at the recommended dosage. So why not prescribe more to blood pressure patients? Is it because they do not want to lower those patients testosterone levels too much?

BTW: I'm on a higher than average dosage a day and my BP has not been noticeably effected (although the occasional shortness of breath when exerting myself does concern me).

One last thought. Who on this forum has been on Spiro the longest? Has anyone been using it long term and are there any noticeable long term effects?

[Stephenie S]

Dear Abby,

Please remember that we are NOT supposed to discuss dosages at all in this section of the forum. I asked for (and hope I get) special dispensation for my post.

You are right. Spironolactone is NOT the drug of choice today to treat high blood pressure. There are many other more modern drugs available now. HOWEVER, this does not change my point. I am very concerned that many doctors are not explaining the serious side effects of taking a normally low dose blood pressure med in the sometimes HUGE doses needed for adequate testosterone suppression.

There are other meds you could take in other parts of the world. Some may seem to be more effective. But if you live in the good old USA, spiro is what you will get, and it is VITAL that you understand that spiro is primarily a drug designed to lower blood pressure.

Finasteride or it's twin dutasteride are far milder and work slightly differently. If they work for you, you probably should be taking one or the other. But most will find they need the stronger action of a more powerful anti-androgen like spiro. One distinct advantage of finasteride is it's anti-alopecia effect. It is a good drug to treat MPB (male pattern baldness). Many TG women add it to their hormone therapy regime.

Stephie

[Zenith]

Hey Steph, quick question. Do post op TS women use Finasteride or Dutasteride?

[Hephaestus]

Is the shortness of breath supposed to go away? I've been suffering from that since I started taking it.. though I just only realized this may be related... I used to be able to run around and fence, now I'm getting short of breath just doing chores.

[ameliabee]

I just took the lowered blood pressure effect as an excuse to drink more coffee! :D

[Traci Elizabeth]

I am on mega doses of Spiro & have been so for over two years. I have constant leg cramps, some days worse than others especially when they are multiple cramps at the same time starting in the toes then the arch of your foot and moving up into your legs & sometimes both legs at the same time....goodie goodie! And shortness of breath...well that has been normal for me the entire time I have been on Spiro.

But before anyone panics, here are some facts about me:

1. I have a GYN, Endo, & GP doctors managing my HRT & I get full battery of blood work every 3 months.
2. Prior to HRT, I had BP so high I should have been on the "cold slap" (talk about the silent killer and widow maker).
3. I need the very high dosage of Spiro & two other BP meds to keep me in the "normal" range. (it's heredity & we are all thin lean family members....go figure!)
4. I am taking other prescribed drugs to manage the leg cramps.

So YES! I know all to well the side-effects of Spiro....BUT I would not stop taking Spiro as it is keeping my T-levels FAR BELOW that of natal women.

[abigailf]

Please remember that we are NOT supposed to discuss dosages


Yea, I got dinged for that. Silly me, I read your comment about that in your post and made a mental note not to specify amounts and low and behold, what do I do.... I wonder, does the spiro cause one to lose focus ... oh wait, that would be the gender dyphoria :)


... HOWEVER, this does not change my point. I am very concerned that many doctors are not explaining the serious side effects of taking a normally low dose blood pressure med in the sometimes HUGE doses needed for adequate testosterone suppression...
Stephie

Quite true. Too often people take medications without understanding the side effects. Pharmacies will often give a list of side effects with the medications. Doctors often don't understand the side effects themselves. Ironically, we take the spiro for the side effect so warning about the primary purpose of it may not be a common practice.

My doctor clearly outlined and detailed everything I may experience with the medicine (including possible spontaneous shortness of breath). As she has many HRT patients, she has seen a spectrum of effects on people. That is why I use her, she has a good sampling of patients that have or are going through the same things I am.

My personal feeling is that a doctor with experience with HRT patients will have more valuable knowledge for me than doctors without (no guarantee of course). There is a reason why it is called a "Practice" in medicine. Because, really, that is all they are doing, practicing ... on us.

[ReneeT]

For the record, spiro is a CRAPPY antihypertensive (bp medication). There are are very few patients who take it as afirst line medication, and not that many who take it as a second line. Why? Because it is not that effective at lowering bp. Your body's compensatory mechanisms easily overcome its effects. Even on hi doses, you will likely find that your bp is in the normal range

[Zenith]

For the record, spiro is a CRAPPY antihypertensive (bp medication). There are are very few patients who take it as afirst line medication, and not that many who take it as a second line. Why? Because it is not that effective at lowering bp. Your body's compensatory mechanisms easily overcome its effects. Even on hi doses, you will likely find that your bp is in the normal range

True dat. Estrogen raised my BP. Spiro lowered it but not much. I had to take Lisinopril too...which worked very well for BP.

[Stephenie S]

Dear Zenith,

Dutasteride and finasteride are nearly identical medications. It matters not which one you take. There has been more research using dutasteride for MPB, so you may find some recommending one over the other. Bit they are VERY similar.

And the pictures? I PROMISE!!!! I am just so computer naive that I can't do it without help. Want to run through it again for me? Be careful and tell me EVERY step to take.

Lovies,
Stephenie

[Melody Moore]

Finasteride or Dutasteride is not a replacement for drugs like Spironolactone or Cyproterone
(Androcur). As others have mentioned here, Spironolactone is a blood pressure medication.

Finasteride is a synthetic 5-alpha-reductase inhibitor, an inhibitor of the enzyme that converts testosterone
to dihydrotestosterone (DHT). Dihydrotestosterone (DHT) is what causes Male Pattern Baldness (MPB)

Source: http://en.wikipedia.org/wiki/Finasteride

Spironolactone has anti-androgen activity by directly binding to and blocking androgens from interacting with the androgen receptor (http://en.wikipedia.org/wiki/Androgen_receptor), by blocking androgen production, and by increasing estrogen (http://en.wikipedia.org/wiki/Estrogen) levels. Production of androgens is decreased by inhibiting 17α-hydroxylase (http://en.wikipedia.org/wiki/CYP17A1) and 17,20-desmolase (http://en.wikipedia.org/wiki/CYP17A1), which are enzymes (http://en.wikipedia.org/wiki/Enzyme) in the testosterone biosynthesis pathway. Estrogen levels are increased by enhancing the peripheral conversion of testosterone to estradiol (http://en.wikipedia.org/wiki/Estradiol) and by displacing estradiol from sex hormone-binding globulin (http://en.wikipedia.org/wiki/Sex_hormone-binding_globulin) (SHBG).

Source: http://en.wikipedia.org/wiki/Spironolactone#Mechanism_of_action

Cyproterone on the other hand suppresses both testosterone and dihydrotestosterone.

http://en.wikipedia.org/wiki/Cyproterone

[sandra-leigh]

Somehow the warnings about shortness of breath had never made it through to my consciousness before I stopped Spiro and things got better quickly. I don't know whether I had simply never happened to see it mentioned, or if it was so far down on the list of possibilities that I promptly forgot about it after I read the patient information sheet. Interesting to see that it was been a notable problem for other people as well.

One of the reasons I had not connected spiro to my shortness of breath was that when I was tested within the last two years for heart / stamina, I had no difficulty in reaching the top level they measured. I asked myself what has changed, and I answered myself that I put on close to 20 pounds; it did cross my mind to wonder why I hadn't had the same problem when I was once before the higher weight, but I told myself the weight had gone to a different place. The mind has amazing powers of rationalization...

Anyhow...

So, now that I am off spiro, and have been long enough to get breath back -- does that mean I can start eating bananas again?? I've had this 11 month-long craving for them!

[Stephenie S]

Go ahead, dear. Eat all the bananas you want. Bananas are actually not all that good a source of potassium. Potatoes contain far more potassium than bananas.

Anyway, a healthy human digestive system will excrete all unneeded potassium. Mostly it's a non-issue.

S

[stephiny10]

For me realization that the spiro has effected me more than I thought it did was last September I played in a weekend hockey tournament and the following Monday I felt really cruddy so I made a appointment the next day with my endo thinking that something was wrong with my dosage she gave me a big smile after I explained my concerns about being tired and had no energy, and told me welcome to womanhood,and that she wasn't surprised at all at how I felt,she assured me that everything was ok but that I can't do physical activity like I could as a man and after all those games in such a short time (7 in about 36 hours) she probably could kick my butt

[Niya W]

Few things Dr will tell you to watch you potassium in take if you are on spiro. you are not suppose to take salt substitutes as most are KCl either You can over do it on potassium. The end result is your sodium levels can drop. What you wind up is with and electrolyte imbalance.