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Gwen

Spiro woes :(

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Gwen

I just passed the 3 week mark on HRT and can't believe I'm moving towards my gender goals. This makes me tearful just thinking about it. But ... I've hit a wall. I've had neuropathy in my feel for a year or so, and the Spiro appears to be making it much worse. I now have new burning and new pain and know I can't stay on the medication. I'm waiting for my endo to get back to me with a solution, but having to wait over the weekend leaves me filled with worry. Does anyone know of other alternatives? Is there hope?

 

Gwen writing on a cold rainy morning.

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VickySGV

Spironolactone (Spiro) / Aldactone is primarily meant to lower the blood's water content to help with high blood pressure issues.  The effect on Testosterone is a side effect that for us is desirable, and other natal males quite a disaster.  The other thing it can do is make your potassium levels rise which can affect nerves and muscles.  The resulting muscle pain does happen but in time does subside as your body gets used to it.  It does require monitoring by blood tests and handled as soon as it becomes a problem.  If it is seriously making pain worse, get the doctor to act NOW.  No waiting!!  There are other medications that can lower your T, and I do have friends who have never had Spiro, only Estrogen who do splendidly.  If you are stopping the Spiro it is important the doctor knows immediately. 

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Jani

Yes to what Vicky has said.  Also you MUST stay hydrated to the point where you think you've had too much, particularly as you start.  My Potassium count went up and my doctor warmed me that I needed to keep up with fluids.  The good news is that eventually your body will acclimate and you won't need to run to the bathroom as frequently.   

 

Jani

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Gwen

Thanks Vicky and Jani for this sound advice. I find myself drinking water 24/7 and have come to enjoy it!

It will be nice to get this resolved, because I seem to be facing my primary fear in deciding whether to begin HRT - problems with medication. I'll be switching to the patch soon too, so I won't have to worry about clots so much.

 

Hugs

Gwen

 

 

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Rachael

Hope you can get it straightened out soon. 

it’s interesting you mention the foot pain, I seem to have more foot pain. Thanks for the info. 

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VickySGV

I still take the Spiro even after GCS because of my blood pressure (another diuretic crashes my potassium) and part of the label reads "take for swollen ankles" which does give a hint to the foot thing.

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jae bear

Hi Glenn, I have neuropathy in my right leg as well as sciatic nerve pain from the old motorcycle accident, and I can very much sympathize with your issue. I did notice a rise in pain but drinking enough water and staying away from salt has kept the pain to a minimum, and I don’t plan on stopping since it does help greatly with my blood pressure. I would definitely talk with your doctor but you may want to take time with this as there was a bit of a learning curve for me, my water intake, and my dietary habits, there may be a way to make this function for you but  talking with your doctor about it will be the best first step. 

Hugs,

Jae

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jae bear

Oh my gosh stupid auto text I am so sorry Gwen! Of course just trying to write this it then tried to change your name to Nguyen!

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Charlize

 I suffered from some massive leg cramps when using Spiro.  I got into the habit of making a gallon of green tea every night and having it the next day as a cool drink.  My fluid intake went way up which i think is overall a good thing.  It did help with the cramps as well.  I also did some research on the potassium content of various foods and made some effort to limit some with very high levels.

 I certainly understand your desire to be on a patch.  Topical E is much less likely to cause clotting.  I've always been using a topical E and am quite satisfied with the results.

Please do keep in contact with your doctor and make sure you have blood tests on a regular basis usually more often in the early years.

 

Hugs,

 

Charlize

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Gwen
12 hours ago, Rachael said:

it’s interesting you mention the foot pain, I seem to have more foot pain. Thanks for the info. 

You are welcome, Rachael. My foot pain/burning issues were minor before starting HRT and they got much worse within a few weeks. It wakes me up at night. I've been stretching more and hope my doctor has an easy fix. It's a long journey. I want to be ready for it :)

 

3 minutes ago, Charlize said:

 I suffered from some massive leg cramps when using Spiro.  I got into the habit of making a gallon of green tea every night and having it the next day as a cool drink.  My fluid intake went way up which i think is overall a good thing.  It did help with the cramps as well.  I also did some research on the potassium content of various foods and made some effort to limit some with very high levels.

 I certainly understand your desire to be on a patch.  Topical E is much less likely to cause clotting.  I've always been using a topical E and am quite satisfied with the results.

Please do keep in contact with your doctor and make sure you have blood tests on a regular basis usually more often in the early years.

 

Thanks, Charlize. I'm expecting a call from the nurse tomorrow and see my doctor in one month. I love green tea! I'll consider your idea. After doing reading here and elsewhere, I was surprised my doctor didn't prescribe a patch from the beginning. I'm 61; it seemed to be the wisest way to start. So I just asked for it and now don't have to worry so much.

 

Hugs from icy Michigan

Gwen

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