Stopping HRT for a diagnosis

[Stephenie]

thanks for this forum. It is a great support for me to have it, to be able to see this community grow, change and as always be extremely supportive. 

i wanted to ask if there is research out there on immediate adverse reactions (physical) reactions to spirolactone/ anti androgens when taken orally? I have done a small deep dive into the internet and have not found anything that fits my query other than some studies regarding cancer. 
I have groin pain a few hours after I taking Spiro   As prescribed; the pain grows and remains consistent unless I stop taking the drug. I also question if I am having a physical  reaction to stress, that I am feeling unsafe and that I really don’t fit my environment despite feeling authentic, happier and free. 

A quick disclaimer I have had groin pain since the pandemic with no medical diagnosis that could be found by doctors only possible nerve entrapment and muscle disorders. I will be making appointments to recheck all my labs and to check with my provider if I should fully stop HRT until I can get an answer to my problem.

 

This situation makes me depressed that I have to take a pause and reassess my physical mental state. Also the possibility that there is an epic medical problem is really beginning to sink into me. 

If you have any information that you can share. I would appreciate it.
Many Many thanks to all you.

 

[VickySGV]

Spironolactone/Aldactone (Spiro) is a diuretic for its first "on label" use, and it can affect your body's Potassium Levels.  Potassium can cause muscle cramps if it becomes too concentrated.  I would call you doctor for an urgent care blood test to see what is going on there.  Do not worry about going off of Spiro for a while, if you are getting "E" from any method it will still work just fine.  Drink plenty of extra WATER,  and cut way back on caffeinated liquids and alcohol while getting the Medical Opinion.  I am not an M.D. but have been part of this community for over a decade.

[Ivy]

For myself, I tried Spiro (twice) and both times it tanked my sodium levels.  The first time I was very bad off.  The 2nd we closely monitored it and caught it early.  I know most people don't have this problem though.  As I remember, someone else here had a similar problem, but I forget who.

[Susan R]

8 hours ago, Stephenie said:

i wanted to ask if there is research out there on immediate adverse reactions (physical) reactions to spirolactone/ anti androgens when taken orally?

I can only speak for myself but my very first HRT prescriber gave me too high of dose too fast. It’s so important to find a doctor that has as much experience with these regimens as possible.

 

I had never had kidney issues until being immediately put on an oral dose much higher than should’ve ever been prescribed by any doctor. My eGFR (Estimated Glomerular Filtration Rate) for the first time dropped below the normal range of 60+. Anything above that is considered somewhat normal for my age of 56 (at the time). I was having all my levels tested every 6 weeks as it was the beginning if my HRT regimen and after the first 6 weeks my eGFR dropped to 58. While not serious, it was an indicator something was affecting my kidneys. My dose was NOT changed and that was a mistake by that first doctor according to my current internal medicine doctor. Then 6 weeks later, it dropped again to 52. That doctor finally took me off Spiro immediately. I changed PCP’s the very next week. I remained off Spiro for 3 months but was kept on only Estradiol and my eGFR eventually returned to the normal range. I started back on Spiro but this time at the very lowest possible dose. I was kept on that dose until I had my GRS at which point T-blockers we’re no longer needed to control my T.

 

I wish you the best on your situation. it sounds like you under some good care and they’re just be cautious. It doesn’t mean the end of your transition by any means. Keep your head up as I’m sure this setback is only temporary. As @VickySGV mentioned, you can be very successful with a medical HRT regimen without any T-blockers at all. You can probably do well just relying on the E alone to do the job, but of course, your doctor must determine what’s best for you specifically. One example of that success was my roommate back in the 80’s. She successfully transitioned MtF at a time when all that was ever prescribed for hormone replacement therapy was E. Her hormone levels eventually stabilized within the female range in a little over a year and she had a great physically feminizing outcome.

 

Hope this helps a bit,

Susan R🌷

[Ivy]

9 hours ago, Susan R said:

As @VickySGV mentioned, you can be very successful with a medical HRT regimen without any T-blockers at all. You can probably do well just relying on the E alone to do the job, but of course, your doctor must determine what’s best for you specifically. One example of that success was my roommate back in the 80’s. She successfully transitioned MtF at a time when all that was ever prescribed for hormone replacement therapy was E.

This is what I'm on now.  It seems to be working, if slowly.   But I'm in my early 70's so I expect things to be less dramatic.

[Charlize]

When i was on Spiro i did my best to drink lots of extra water or when possible iced green tea.  Any time i got a bit dehydrated i'd get cramps.  I had to quit at times due to heart problems so i remember the feeling of disruption and reassessment you shared.  Eventually i got an orchiectomy which solved that problem.  

Sorry you are going through this!  It can be very upsetting!   Fortunately we are able to support each other.

 

Hugs,

 

Charlize

[Stephenie]

On 5/15/2022 at 7:48 PM, Susan R said:

I can only speak for myself but my very first HRT prescriber gave me too high of dose too fast. It’s so important to find a doctor that has as much experience with these regimens as possible.

 

I had never had kidney issues until being immediately put on an oral dose much higher than should’ve ever been prescribed by any doctor. My eGFR (Estimated Glomerular Filtration Rate) for the first time dropped below the normal range of 60+. Anything above that is considered somewhat normal for my age of 56 (at the time). I was having all my levels tested every 6 weeks as it was the beginning if my HRT regimen and after the first 6 weeks my eGFR dropped to 58. While not serious, it was an indicator something was affecting my kidneys. My dose was NOT changed and that was a mistake by that first doctor according to my current internal medicine doctor. Then 6 weeks later, it dropped again to 52. That doctor finally took me off Spiro immediately. I changed PCP’s the very next week. I remained off Spiro for 3 months but was kept on only Estradiol and my eGFR eventually returned to the normal range. I started back on Spiro but this time at the very lowest possible dose. I was kept on that dose until I had my GRS at which point T-blockers we’re no longer needed to control my T.

 

I wish you the best on your situation. it sounds like you under some good care and they’re just be cautious. It doesn’t mean the end of your transition by any means. Keep your head up as I’m sure this setback is only temporary. As @VickySGV mentioned, you can be very successful with a medical HRT regimen without any T-blockers at all. You can probably do well just relying on the E alone to do the job, but of course, your doctor must determine what’s best for you specifically. One example of that success was my roommate back in the 80’s. She successfully transitioned MtF at a time when all that was ever prescribed for hormone replacement therapy was E. Her hormone levels eventually stabilized within the female range in a little over a year and she had a great physically feminizing outcome.

 

Hope this helps a bit,

Susan R🌷

 

On 5/15/2022 at 10:35 AM, Stephenie said:

thanks for this forum. It is a great support for me to have it, to be able to see this community grow, change and as always be extremely supportive. 

i wanted to ask if there is research out there on immediate adverse reactions (physical) reactions to spirolactone/ anti androgens when taken orally? I have done a small deep dive into the internet and have not found anything that fits my query other than some studies regarding cancer. 
I have groin pain a few hours after I taking Spiro   As prescribed; the pain grows and remains consistent unless I stop taking the drug. I also question if I am having a physical  reaction to stress, that I am feeling unsafe and that I really don’t fit my environment despite feeling authentic, happier and free. 

A quick disclaimer I have had groin pain since the pandemic with no medical diagnosis that could be found by doctors only possible nerve entrapment and muscle disorders. I will be making appointments to recheck all my labs and to check with my provider if I should fully stop HRT until I can get an answer to my problem.

 

This situation makes me depressed that I have to take a pause and reassess my physical mental state. Also the possibility that there is an epic medical problem is really beginning to sink into me. 

If you have any information that you can share. I would appreciate it.
Many Many thanks to all you.

 

 

I have some updates on possible causes of what I am experiencing.
 I spoke with a member of my health team today. 

As mentioned, I have had groin pain issues prior to this. What I did not mention was that I have had Covid with symptoms for the last week. Her theory is that the inflammatory effect of the virus on body could be the thing that is causing my pain and not a reaction to a diuretic. She  suggested to see if pain goes away after a week. It feels that this can be  possible characteristic of Covid so I am holding onto it but I am still having blood work done. Thanks VickySGV for pointing out that Spiro is potassium sparing and that it can cause muscle cramps. I really believe that I was not hydrating enough on my shifts, and I eat many bananas, they are one of my favorite foods.
Anyway, there is some Relief!