Multiple Sclerosis (MS) Support Group

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brianap 02/04/2010

I"m looking for any information on if/how MS has affected your hormones. I'm 32. Found out I had MS when I was almost 14. Seemed to be regular as far as menstruation and such. Never been on the pill. Had four pregnancies- no trouble conceiving or carrying to term. I started losing the hair on my head like crazy about 2 yrs ago. My youngest was 2 so it was not due to pregnancy or nursing. I was on Copax then, now Rebif. Not much difference in the hair loss. I lost about 2/3 over the last 2 yrs. It is not stopping. Dermatologist said I ckecked out ok. I've had all my hormones checked multiple time during the follicular and luteal phases. Levels showed normal. Ocassionally I would find I would not be able to detect and Lh surge or ovulation. But onset of menses was still on time. Just wondering if anyone has any experience/knowledge in how/if MS can influence hormones. Naturopatth also had no answers. Nero said not a side effect of drugs or due to MS.
Thanks for sharing.

deleted_user 02/04/2010

EPagain has some great stuff on this, shout out to her. I am going to the neuro tomorrow and I will be asking MUCH about this. I also started losing hair, but on my legs as well, around the age of 27, two years after the birth of my son. I have a little hair growth on my chin, no, I do not look like the bearded lady, but I notice it. I had my hormones checked when i was about 35, but since I was self-pay, the ydecided to save me money and just checked male to see what was going on. Normal. But I need to have it all done again. I am also having a problem with elasicity in my skin, or rather, the lack of. Ths is new. But the up side is that I haven't had to shave my legs in years, no hair.

smathie2 02/04/2010

I'm kind of curious as well. for the past month or so I have been losing hair by the handful and my neuro said it could be caused by a ton of things but that my medication isn't causing it nor is MS.

deleted_user 02/04/2010

I am just going ot say....there is something going on. I just know it.

deleted_user 02/04/2010

well glad I am not alone in this one. Started with hair loss on the insides of my legs many years ago (10) and then a few years ago my hair on my head began to thin. Now NO armpit hair at all. I used to have straight, thick dark hair and now it is thinner and, drum roll, curly on one side only! I swear it is the Copaxone which I have been on for 8 years. Alters DNA so I am thinking there is nerves which are dead on my legs so no hair production and the blessed Copaxone screwing with my head hair! Now if I could just channel the hair from the mustache area - there it seems to go gangbusters (have to depilitate every other day). If you find a cause let me know. My neuro is of no use at all. told me to go to a dermatologist!

brianap 02/04/2010

Thanks. Its good to know I"m not alone, even if we don't know why. I did see a dermatologist too. He said my scalp and folliciles were fine. Said I could try upping my iron, which was/had not been radically low.

deleted_user 02/04/2010

I have seen dermas and gynies and neuros and gps, LOL. For me this all starrted before Rebif. And I have more hair loss on the right side. I also have no hair under my arms to speak of, some on the upper lip, and the eyebrows are thinner. I really used to dull razors shaving my legs, and now there is just nothing. I have had problems with anemia on and off, do not eat meat or fish, haven't much of my life, but I have it under control, no problems with iron for years. I am really focused on this right now, and I am determined to get to the bottom of it. THat could either be a good thing, or a real case of frustration. Which you know is supposed to cause....hair loss.

deleted_user 02/04/2010

Make sure you have your thyroid checked -- TSH, T3, T4, etc. And make sure you're getting enough biotin (a B vitamin), zinc, & folic acid.

MS does affect thyroid, as well as other hormones; Rebif does too (not sure about Copax).
Rebif can also cause hair loss (see the tiny print in the drug info) -- usually temporary.

And it certainly seems that hormones & MS are related: twice as many females as males get MS; it's usually manifested post-puberty; changes course after menopause; usually gets better during pregnancy, relapses after childbirth, etc.

You'd think some researcher would connect those dots! I did read recently that there's suggestion that Estriol can be beneficial, but still early in that study...

deleted_user 02/04/2010

I saw that as well, made a note to keep watching the news on that.

EPagain 02/10/2010

Studies with estriol and testosterone (sex hormones) have been done and when SOME with MS are given these hormones they seem to do BETTER. See research being done at UCLA now by Rhonda V., and recently Colleen Hayes (sp?) in Wisconsin.

Best wishes,
EP

PS My idea is that metabolism upstream causes problems with different hormones (depending on subtype of MS you have) and myelin.

deleted_user 02/10/2010

Here's a study looking for participants:
"Copaxone plus Oral Estriol: The Rocky Mountain MS Center at Anschutz Medical Campus (Colorado) is looking for women with relapsing-remitting MS for a 24-month study to see if there are fewer relapses with the treatment of Copaxone injections plus oral estriol as compared to the treatment of Copaxone injections plus oral placebo."

More info at MSCenter.org

deleted_user 02/10/2010

I've known a couple woman (not with MS) who have had fairly sudden and progressive hair loss on the head. One of them had a new house and new copper pipes that were giving her too much copper. The other was under a great deal of stress and the only thing that was ever figured out is that the stress caused it (?). So anyway, besides what you have already heard from others. It might not be likely, but I just thought I should mention it. Maybe it will get you thinking of something that might of changed in your life recently. Have I have watched too much Mystery Diagnosis (: . I do hope you figure out what is causing the hair loss.

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