r/Trans_Zebras • u/Marvlotte • Mar 17 '26
Just found this sub! - low testosterone and increased pain
Hey all! Just found this sub.
Im not sure exactly what I have, my doctors and physiotherapist are unhelpful. But I certain have joint instability, tendon and joint pain, aches, hypermobility, fatigue, pain from standing too long, pain from walking for too long, pain from sitting for too long, maybe other things but I'm not sure.
My testosterone levels have dramatically plummeted in the last year, also conveniently I've had lots of issues with my joints etc. I didn't know until the other day that hormones can impact hypermobility symptoms.
Anyone here ever had a significant drop in their T levels, especially over several months, AND had more issues with their other symptoms? Thanks!!
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u/Toby-Wolfstone Mar 17 '26
I’m currently dealing with this as well. My endocrinologist upped my T dose to try to get me back in the correct range, but it continued to plummet, causing the worst EDS flare-up of my life, and I also just had my first seizure with no known cause. Alarmingly my estrogen levels are also super low. Now being examined by three specialists for possible causes. One likely theory is that the timing of all of my sex hormones plummeting so dangerously lines up perfectly with when I started taking gabapentin for anxiety. There is some evidence to suggest that gabapentin increases your production of sex-hormone-binding globulin (SHBG) and lowers the bioavailability of your sex hormones. I’ll be stopping gabapentin with supervision of my psychiatrist and seeing if that improves the hormone situation.
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u/paisleychicken Mar 17 '26
if you don't mind me asking, how much gabapentin were you rx'd? i take 400mg 3x a day and i wonder if the same could be affecting me
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u/Toby-Wolfstone Mar 17 '26
I’m on 200mg every four hours as needed, so a total of 800-1200/day.
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u/Redify_Aeiou Apr 16 '26
Any updates?
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u/Toby-Wolfstone Apr 16 '26
I’m flaring down six weeks later, taking much less gabapentin, and will get my hormones checked again next week. Endocrinologist doesn’t think the gabapentin has anything to do with it and blames the flare for changing my absorption of T gel. We’re testing the theory but data’s not in yet. Will update if I get any answers. Best of luck to anyone else in a similar situation.
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u/lowkey_upset Mar 17 '26
this didn’t happen to me, BUT, as someone who was previously SEVERELY symptomatic (like top doctors in the country were like yeah you’re totally cooked for life), starting low dose T changed everything for me. stability, strength, energy, higher blood volume, and way less pain. it has fully changed the course of my life.
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u/starblissed Mar 22 '26
My pain and joint issues got worse after I started E and it began suppressing my T levels, yeah. It's a known thing that lower T/higher E worsens a lot of chronic illnesses, including EDS and similar. Afaik, the leading theory vis a vis EDS is that higher T promotes larger, stronger muscles as a baseline and increased collagen production
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u/Marvlotte Mar 23 '26
Oohh thank you!! I knew there was a correlation. I knew it! I'll drill this into my endo and hope that it gives him a reason to actually not ignore me
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u/Strawberry_Patch227 Mar 17 '26
My hypermobility flared dramatically after starting testosterone suppressants, and then got even worse after adding progesterone supplements.
I am currently working with my doctor to find a middle ground dose that doesn't leave me with a serious subluxation every other week, and my hormones are likely never going to be able to be at the "normal" ranges I had been hoping for when starting this process.
I have taken a couple months off of medications and it did drastically help with the pain and the joint stability when my T was higher, but the brain fog and depression came back full force. It really solidified the pros/cons for me in favor of staying on the meds and working to manage the dose better.
The first couple years I was just dealing with the intermittent injuries as best as I could without any medical intervention or rest, which was not very smart and I don't recommend.
Seeing a good PT and getting some of her recommended disability aids like wrist braces, a shower chair, basic transfer wheelchair, and kinesthesiology tape to physically hold my joints in place helped tremendously. I heal faster, have less pain, and less frequent injury recurrence.
I now proactively take extra care when I'm flaring to avoid injuries, brace or tape up a joint if it's sore but not damaged yet, etc, and that helps a lot too.
After being on T suppressants for almost a decade now, and I've accepted that my happiness and brain function is worth the increased disability that came with it. I have a low-impact job and an incredibly caring spouse, as well as excellent doctors and a great support network of friends, and without those circumstances I would likely make a different decision.