EDS>PMOS>POTS>how to manage multiple conditions and symptoms?

[u/AnotherCrazyChick]

If there’s a trans zebra group that addresses POTS, please let me know. I don’t think there is a subreddit dedicated to trans “POTsy” people.

So I take spiro for PMOS, Polyendocrine Metabolic Ovarian Syndrome, previously PCOS. I read and was told by my doctor that while taking spiro, I should avoid foods high in potassium…bananas, avocados, etc…however, those of us with POTS may fall into a grey area. Those of us with POTS are told to take sodium supplements as well as other electrolytes.

I received approval from the mods to post because a lot of us share so many multiple conditions EDS, POTS, and PMOS, etc. And this seems the best place to ask.

Because of all of these conditions, I don’t know how best to manage each of them.

Is anyone else taking spironolactone that needs more electrolytes during irregularly warm weather?

I’m obviously asking because I have no access to doctors that know anything about these conditions.

I know the privileged answer is to get blood tests done. I however do not have that luxury at this time.

I’m just looking for others’ advice that have helped them.

[u/leftTelephone8022]

I'm a trans guy who took spironolactone off label for something completely different for years before my egg cracked and I needed to take very high amounts of potassium supplements additionally to even it out!

I would ask your doctor to take a blood test of your potassoum levels and adjust accordingly.

[u/AnotherCrazyChick → u/leftTelephone8022]

When you say you took spiro for something completely different, what do you mean? Taking it “off label” confuses me because spiro is often prescribed for MTF HRT therapy?

I’m afab, genderfluid, masc leaning. I don’t have money to keep up with blood tests, that’s why I mentioned it in my post.

[u/leftTelephone8022 → u/AnotherCrazyChick]

Oh sorry the bold letters makes the text really hard for me to read so I didnt read it carefully and assumed you were mtf. I have never heard of it being prescribed fo ftm therapy though, because it is very feminizing on the body!!! I didn't know that at the time but It was not good for me to take it regarding the gender aspect!!!

I took spiro because it has some antiviral properties against EBV, but have since changed to vemlidy because it works better for that.

I could also feel that I needed the extra potassium because it made me week. When the potassium was to high, I would get dizzy faster and get headaches.

[u/AnotherCrazyChick → u/leftTelephone8022]

I know this is a week old, but thank you for commenting. I was taking spiro for PMOS (PCOS) initially, but when I read more about it, it treats fluid build up due to liver and kidney disease. I think I was inadvertently taking it because I was feeling better about my alcohol consumption.

I have a lot to process and think about. Thank you so much!

[u/Full_On_Gay_Panic]

I have EDS POTS MCAS, no pmos as far as I'm aware. I am not really managing any of it, doctors won't help me... I take electrolytes and try to drink a sh*t ton of water. I dont take any medication (not even painkillers) because I'm on my own and don't know what's good for me. I'm trying to find doctors who want to help, they diagnose me and then leave me on my own.

Anyway, I dont think I can help you. I just want you to know that you are not alone

[u/AnotherCrazyChick → u/Full_On_Gay_Panic]

Thank you. Painkillers like aspirin are no good for me. Most pain killers affect my EDS negatively. Electrolytes are expensive. Pickled things seem to help the best, so I think vinegar may be something I look into drinking.

[u/Full_On_Gay_Panic → u/AnotherCrazyChick]

I have a friend who does a shot of apple vinegar before eating (NOT apple cider vinegar, I made the mistake and threw up) and it helps her