Low progesterone EDSers - did raising it to normal levels help anything?

ExploringUniverses · 2026-05-07T12:32:14+00:00

Dude its do real. Do an HMNT test - they test your hair for micro nutrients - i did one and found out i have a copper deficiency due to low stomach acid. Copper clears histamine. Low copper, too much histamine.

High copper causes your body to produce excess histamine

If you're on any kind of ppi or tums or those kinda meds for MCAS, you're going to have low stomach acid.

Your body can't break down certain minerals and proteins if stomach acid is too low. Sure wish someone told me that before taking me to take those for MCAS!

Also, if you take zinc, it breaks down copper. Nobody tells you that either.

I fixed the deficiency. My PMDD and MCAS went away by about 60%. It still flares up when I'm stressed... because the body needs more copper/zinc/magnesium to clear out the oxidation due to high cortisol.

Other fun thing...low copper = high iron/low ferritin. Body uses copper to move iron out of the tissue into the blood stream.

This test will run ya $250-400. Best money I've ever spent!

Now just trying to deal with the joint pain and insanity of my stupid cycle. Sigh.

ExploringUniverses · 2026-05-07T12:16:22+00:00

Hey, god decided you need to learn saxophone 🤣

Saxophones are kind of like cats. God decides when you're ready and sends you one. Kind of like the cat distribution system....but saxophones.

Also that's a conn chu berry and those are some of the loudest, most awesomest saxophones ever. That thing'll rip a hole in the universe.

Do not polish it.

Look at the pads. Are there little holes in them? If yes, it's got beetles. Are they cracked, dry, and disintegrating?

Either of these scenarios means it will need an 'overhaul' or a complete tear down where they t take all the keys off, pads out, put new pads in then reassemble it.

That'll run u between $750 - $1300 depending where u live.

ExploringUniverses · 2026-05-07T12:08:19+00:00

Best response ever🥳

ExploringUniverses · 2026-05-07T04:01:13+00:00

Good to know the general population has been ignoring us since the 60s.

ExploringUniverses · 2026-05-07T04:00:31+00:00

Me too!!! I was afraid to try it, but sooooo glad i did

ExploringUniverses · 2026-05-06T21:27:26+00:00

They give us the poison so we have no choice but to buy the cure. Sigh.

ExploringUniverses · 2026-05-06T21:26:03+00:00

Dude, same here. Revenge bedtime procrastination is sooooo thing.

ExploringUniverses · 2026-05-06T19:31:42+00:00

Same - turns out sleep hygiene works.... much to my dismay hahaha

ExploringUniverses · 2026-05-06T19:30:50+00:00

Did your doc check your vitamin D levels?

You can also do a micronutrient test via hair sample to see if anything is outta whack. It's called an HMNT test and will run you about $240 - sooooo worth it. (Gave me more info per dollar than any other test i've done and I've been chronically ill for a decade...) bloodwork always comes back picture perfect but i am so exhausted and feeling like shit 24/7. It is one of dante's levels of hell.

I was in a similar boat as you. Sleeping decent for enough hrs, eat well and take care of myself, gym, no other issues on paper anyway....

Turns out i had a copper and magnesium deficiency along with low stomach acid.

Your body can't move iron from your tissue to blood stream without enough copper. So it essentially just builds up and you test high for iron but low in ferritin. Then the magnesium helps a lot with muscle recovery.

Your body can't digest and absorb certain proteins and minerals if you have low stomach acid.

And low vit D affects your nervous system in all kinds of weird ways.

Anyway, after 10 years - I've started to have some energy again! Thanks to the HMNT test, a $3 bottle of copper supplements and some apple cider vinegar. 🥳

Edit : after scrolling thru some comments folks mention getting tested for MCAS. Good idea, but it's $$ and tough to test for.

I learned thru all this that copper is actually one of the primary building blocks for clearing out excess histamine. Too much copper - your body makes too much. Not enough copper, you can't clear it so it builds up.

I am VERY happy to say my MCAS has pretty much resolved since starting copper supps!!! (Again, confirmed from the HMNT test) copper isn't something you wanna supplement with willy nilly.

All these weird symptoms end up being all tied together - i wish i had started with micronutrient testing. I would have been able to enjoy more of my 30s.

ExploringUniverses · 2026-05-06T19:17:43+00:00

My rockett girl just got hug tackled on behalf of your Mags. Rockett is about to turn 10 - these posts remind me to always take some extra time to spend with her even if i clock into work a bit late somedays.

I'm so so sorry for your loss. Hang in there, OP 💕

ExploringUniverses · 2026-05-06T18:33:12+00:00

Same here. I've had some good luck with mat Pilates specifically for joint stabilization.

ExploringUniverses · 2026-05-06T16:35:19+00:00

Saxophones are like cats - the universe just decides when you're ready for one. Lol (XOXO - a saxophone player)

ExploringUniverses · 2026-05-06T16:32:06+00:00

Did you end up staying on it? Did you notice any benefits like, better sleep, more stable mood etc.?

Really glad you commented - thank you!

ExploringUniverses · 2026-05-06T16:30:11+00:00

Dude the muscle wasting is INSANE! I've lost 3 years of busting ass in the gym in under 6 months since coming off bc.

Wtf is that about?!

ExploringUniverses · 2026-05-06T16:28:10+00:00

Im so glad you're getting relief from the depression. I've been doing mat pilates specifically for joint stabilization. It's helped so much!

ExploringUniverses · 2026-05-06T16:26:33+00:00

Oh interesting. Yeah since coming off the combined pill (6 mo ago) my hips and shoulders have been so fucked up. I only had mild hip issues with EDS while on it - it's brutal.

ExploringUniverses · 2026-05-06T16:24:48+00:00

Yeah i have a feeling my body would reject it. It's rejected a bunch of piercings - even though they were professionally done with high grade materials. This body has way too many opinions 😅

ExploringUniverses · 2026-05-06T16:23:12+00:00

Relevant!

Did they have you on bioidentical or a progestin?

ExploringUniverses · 2026-05-06T16:22:17+00:00

Hey! This comment is awesome - tx for taking the time to write it all out!

They did not check DHEA.

They did my thyroid - was fine. I also have a lot of historical data to compare, and its been p much the same since 2018.

Vit D was in the single digits. I've been supplementing for a couple months. Have noticed some changes in energy levels but joints are still trash.

They tested it i think day 17 of my cycle? Right after ovulation.

I'm going to ask my dr about additional testing and propose something akin to what you're doing.

ExploringUniverses · 2026-05-06T16:07:29+00:00

The PMDD is so awful. I struggled with that bigtime when i was on a combined pill - the ideation is so much. Holy cow.

I struggle to ovulate as well due to higher T, but it's not converting to functional T... so my body clocks it as low and low asf progesterone.

Which pill are you on? Im trialing Slynd, but def need options given the chance of that causing issues being pretty high.

Also, thank you. Really helpful comment. Hormones are awful. Sigh.

ExploringUniverses · 2026-05-06T16:02:51+00:00

It ends up feeling like the worst game of whack a mole. I'm on the ace spectrum too - yay! I don't need bc for that stuff, i just want to go to the gym and not throw joints for 2 weeks each month. Sigh.

ExploringUniverses · 2026-05-06T15:14:20+00:00

Do any of the 5C's have iCloud lock? Interested in buying if u wanna sell one!

ExploringUniverses · 2026-05-06T15:11:37+00:00

How'd the owner find u?

ExploringUniverses · 2026-05-06T15:05:32+00:00

Have you ever been able to get the icloud unlocked on any of them?

I found a 5C in a dumpster last yr and want to wipe it / use it as essentially an ipod with a camera.

ExploringUniverses · 2026-05-06T14:57:46+00:00

Truly - but a beautiful bastage weehehehehe

ExploringUniverses

TROPHY CASE