RLS and hormones

[QyX]

I wonder what the general experience of people taking any kind of hormones has been for their RLS.

In May I am about to start hormone replacement theory to transition from male to female. My psychotherapist who has like 30+ years experience treating transgender people thinks it is quite possible that my RLS symptoms could reduce.

I've always been wondering in all those years why my RLS is so much worse than most other patients. Being transgender could explain some of the symptoms. I also met one cis-female who had too high testosterone and her RLS massively improved after starting to take hormones.

[Rustsmith]

I am not transgender, but last fall I realized that the methadone that I take for RLS was causing my free testosterone level to drop to about 50% of the low end of normal. I started testosterone supplementation and two days later I felt better than I had for years. Not only did the depression that had been haunting me disappear, but my energy levels increased and I suddenly realized that my mind had been rather foggy.

The testosterone dose that I was given turned out to be too large, so both my total and free levels went way too high. I am now on a reduced dose and waiting to see how much they come down (I have to wait for a month).

But throughout all this, my RLS has stayed under control and hasn't bothered me. I take methadone, gabapentin and a bit of pramipexole each day, so my therapy is more than most people take, but without these meds my RLS is also much worse than most others.

One final note, the correlation between methadone and testosterone was done on patients being treated for addiction, which means that they methadone dose was much higher than for RLS. And those studies were not limited to just males, but they did not see a reduction of testosterone levels in females.

[badnights]

I wonder what the general experience of people taking any kind of hormones has been for their RLS.

In May I am about to start hormone replacement theory to transition from male to female. My psychotherapist who has like 30+ years experience treating transgender people thinks it is quite possible that my RLS symptoms could reduce.

I've always been wondering in all those years why my RLS is so much worse than most other patients. Being transgender could explain some of the symptoms. I also met one cis-female who had too high testosterone and her RLS massively improved after starting to take hormones.

Well we know that hormones are involved somehow, simply from the increased incidence of WED in pregnant women. But as far as I know, no one has a clue what the relationship is. Your cis-female friend's experience also suggests the importance of hormones, but perhaps also underlines how complicated the relationship must be. It would be awesome if your WED/RLS got better!! but who knows what will happen. I hope that happens!!

[Oozz]

According to the research there seems to be a relationship between changes in hormones and RLS. However, that relationship is not well understood. I think Brian Koo’s current clinical trial is investigating this relationship.

[QyX]

The situation is complicated. Overall the estrogen does not affect my RLS but my emotions do. It is very complex. I will get back to this once I have the time.