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SunnyKay

Struggling With Spironolactone/Diuresis

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SunnyKay

Hello Everyone! I started HRT on October 26 of this year and I couldn't be happier! YAY!!! So I'm well into my second full week of hormones, but I find I'm struggling with the diuretic effects of spironolactone. I'm 38, and 144 lbs normally but within 24 hours of taking my first dose(s), I experienced 4lbs of water loss, and since have gained back half that at best, usually hovering around 140. An uncomfortable weight to be for me at 5'7" Last night I ended up I the ER due to severe pain while urinating, cloudy urine, and blood in urine. OMG!! UTI's are SO, SO, SO PAINFUL! To keep it short, the doctor said I had a raging UTI, and was super dehydrated. I really have been chugging water, but maybe I have no conception of how much I need to drink to offset spironolactones diuretic effects. Taking a day off this stuff today.  And BTW, caffeine and alcohol are dead to me until I can manage this better. The best possible health while on HRT is my complete focus right now.

 

So I'm asking if anyone has advice for dealing with this. Maybe I have no idea of the quantity of fluids I need right now.  It would be super helpful if someone who has dealt with this could share their experience. Grateful for any replies and advice! 

 

Fuzzy Hugs,

 

Sunny 

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VickySGV

My big guess is that the UTI was starting before you got onto the Spiro, but you do have to be careful about how much water you drink and what the Potassium levels are while on it.  Two 8 oz glasses of water at meal time, plus non-sports drink stuff as you want it. A rule of thumb my doctor gave me, was input and output should be about equal.  My doctor actually had me do a 48 hour test using a special toilet insert while I was home to measure the output. Do be careful about Potassium in such things as sports drinks, since your body does not get rid of the potassium as fast as it used to, and too much can affect other organs and make you feel weaker.  I am post op and get UTI's a couple of times a year due to my new plumbing, but I had them before as well.  Just be sure to keep your lab appointments and take other drugs on schedule.  Knocking off the drinking and caffeine will help generally in so many ways.  It will be several months before you get completely used to the HRT.  I have 9 years if experience with the stuff and it still pull surprises on me, and not all perfect and fine.

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Carolyn Marie

Hi, Sunny.  Sorry to hear about the UTI and your other effects from Spiro.  Obviously, I'm not a doctor, so I won't be offering any specific medical advice.  That said, I suggest waiting until your UTI is gone, and go back to whichever doctor prescribed the Spiro and discuss it with them.  They may be able to change your dosage, or offer an alternative, such as Finesteride.  Spiro is not the only way to go to get results.

 

I hope you feel better.

 

Carolyn Marie

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Kenna Dixon

Hi, Sunny...

 

I also had difficulty with spironolactone (although I can no longer recall what they were).  I was switched to finasteride and have had no issues at all with that.

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Jani423

Hello Sunny, Yes the Spiro will dehydrate you if are not careful about keeping a positive fluid intake.  That and as mentioned your Potassium levels can go into the bad range too.  I used to drink a gallon of water a day.  That may seem like a lot but once you get used to it, its fine.  I also get leg cramps if I don't stay hydrated.  Now that I'm just on E, I still drink a lot of water each day.  As to your weight, I am taller than you but have been at 140 for a long time so I wouldn't worry about that too much except to say listen to you body.  It will tell you what is working and what isn't.  My weight fluctuated a little at the start of HRT but then settled back to my norm.  As suggested, you can talk to your doctor about an alternative to the Spiro and see what they say.  I'm glad you went to the hospital and got the UTI looked into.  They are no fun.   <Hugs>

 

Jani   

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SunnyKay

Thank you all so much for your quick replies and support. This group is really amazing! It really helps to get feedback from individuals who gave been down this path before....

 

I'm up and about now, and drinking soooo much water. I feel better already! But, I will stay away from sports drinks, since I don't need the extra potassium.....

 

OMG Vicky! You must know how painful these things are. Not fun!

 

Thank you all again!

Sunny Kay

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VickySGV
2 hours ago, SunnyKay said:

OMG Vicky! You must know how painful these things are. Not fun!

 

Not so much pain all the time, but when I gotta go, I really really gotta gotta go or there have been wet underpants.  I came down with one at a convention in Atlanta GA and was in ATL airport getting ready to come home cross country and the urge hit in the TSA Screening line.  Thank heaven I had a spare pair of undies in my carry-on case which got used there in the airport.  I was making one trip to the head on board the plane every 1/2 hour for 4 hours and a bit more.  UTI's are NOT FUN at all!!

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SunnyKay

Carolyne and Kenna, thanks for the heads up on finasteride......If Spiro continues to not cooperate I will bring this up with the Endo. I'll look into it a little more to see what it's liver tox profile is as well....

 

Sunny

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Charlize

I made a point of looking up the potassium levels of certain foods and modified my diet a bit.  i got into drinking an amazing amount of unsweetened green tea either hot or as iced tea.  Even though surgery makes the need for a blocker no longer necessary i continue to drink more than i ever did before but also enjoy coffee in the morning.  One thing to watch for is cramping.  that is another sign that your not drinking enough and have high potassium.  I had leg cramps on occasion that were pretty brutal.

 

Hugs,

 

Charlize

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SunnyKay

Thats a good idea. I'm in the process of realizing I need to do some housecleaning with my diet, and lifestyle to make sure it works with my HRT. But seriously.....I can't even drink 2 cups of green tea in a day though without it drying me out, sometimes even forcing me to take out my contacts! I think I'm going to stick with LOTS of water right now.

 

And yes, I take my water straight.....No chaser......:blink:

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Jani423
10 hours ago, SunnyKay said:

water straight.....No chaser

Yes This^  I used to drink a lot of seltzer water, and I still enjoy it but the vast majority of my drinking water is plain old filtered tap water.

 

Jani

 

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Kenna Dixon
16 minutes ago, Jani423 said:

the vast majority of my drinking water is plain old filtered tap water.

 

 

Aren't you concerned about hydric acid (dihydrogen monoxide)?

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Cerise

I dunno but I always thought finasteride is more associated with correcting hair loss.

I brought up my issues with spiro last week with my transition doctor and she said that there were other blockers that I could go to.

I had corrected the problem with diet and so I stayed on spiro.

Water is so important and like was said above potassium is really something to look act as a no fly zone.

Bananas I just don't eat and will stay away from dates now because of it.

There is a boat load of bad stuff out there in things like maltitol which is now used in a lot of things as sweetener but it also is a constipator.

Water and diet and let your trans doctor figure it out.

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Kenna Dixon
2 hours ago, Cerise said:

I dunno but I always thought finasteride is more associated with correcting hair loss.

 

 

That's true, but my prescription states that it's for prostate enlargement (which I don't have).

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Dev

Welcome to the world of off-label prescriptions.

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SunnyKay

Ok, so since I posted last I've been drinking SOOOOO much more water, and my weight has now gone back up closer to where it should have been. Back up to 143 ish instead of 140ish. AND....I feel much better overall. I am surprised how much water it takes to rehydrate! Back to the full dose of Spirolactone, and handling it in fine form. Still, it's a very serious drug with serious effects and I have alot more respect for it now. Going to the bathroom so much is an inconvenience at times, but a completely acceptable trade-off for my goals.

 

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Cerise

Hi again, one thing I noticed is that you basically just started spiro and I had a few problems at the beginning with it that I posted under Spiro Giro.

I basically had clashes with a few things that I was ingesting but with a little help from this forum and personally nailing down what was clashing with the spiro I kept on it.

My first issues was a general lightheaded feeling after taking it and sometimes feeling a slight loss of strength.

All this has gone away and most noticeable reaction was when I forgot to take it one day before going to work.

Basically it is a blood pressure med that happens to block T and thus it is used for that and other medical issues.

Your right ....it is a serious drug!

I have been taking it for 14 months and I would say it is pretty much transparent in side effects now.

i have had the water issues and when I get up in the middle of the night to go I drink more before going back to bed to keep hydrated perhaps out of fear of getting blocked up but also out of respect for the unwanted possibility of gallstones (shudder).

One other thing is sometimes there are shortages of the drug , at least there are in Canada.

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Jani423

Sunny, I'm glad to hear you're finding balance now.  Keep up with the water intake!
 

Jani

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Charlize

I got into the habit of drinking a great deal when i was taking Spiro.  That has stuck with me even though after an orchi T is no longer a problem.  I've found i still have to get up once every night.  Ugh..... that may also be of my getting a bit older......double ugh.  Anyway i ended up having to take a pill to lower my water intake as my body had become used to the effects of Spiro and i was retaining water and my ankles and legs were swelling.

This brings to mind one of the reasons this site has been so stringent in not allowing dosages and plans for self medication to be posted.  As both sunny and Cerise have noted this is a serious drug and can cause major health problems.  Any of us who travel this path have to remember that and get the best medical care that we can.

 

Hugs,

 

Charlize

 

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