teapot

I am currently experiencing the worst hairloss of my life. I want to cry every time I run my hand over my head. I think I'm gonna be bald in a month at this pace.
I'm making a thread cos, I don't know, I need an exchange, some communication, I guess...?

I've been shedding hair for 7 years, but trying different medication sometimes it was more sometimes less. I've tried Diane35, Yasmin and Yaz, but none helped the hairloss.

Then I was on flutamide for 2 years and it was miraculous. All my hair came back, all the acne was gone, it was like a miracle drug.
But the reality check is that really are no miracles. After 2 years it started damaging my liver and I had to stop taking it.

Now I'm only on Yaz and 5% minoxidil, and it's like nothing. I think at this pace I'll be bald in a month. I don't know what to do. My gyno has told me that we exhausted all options and he was sorry but sometimes medicine can't help everything??? He told me to seek help for hair with a dermatologist!?

Well I'm thinking of seeing an endo now. Maybe I can get spiro (although in Croatia, where I live, this isn't prescribed for hairloss and I don't know where to find a doctor who'd prescribe me it), or metformin, although I don't think I have IR. I don't know.

The thing is, whatever else they may give me... how long will I actually be able to take it before it starts damaging my liver or kidneys or something else? What good is another miracle drug that gives me 2 years of nice hair and skin and then it's all back to square one?

So my question to you all is - what's the longest you've taken any of your pcos meds for, which are not birth control? I know bc is usually well tolerated for long periods of time, so all that other stuff, spiro, metformin, flutamide, propecia... whatever else is there? Your experiences?

moondust52

Dear Teapot,

My heart goes out to you. I do not know the answer to your questions but surely someone will reply. How long have you been on the Yaz and Minoxidyl? Maybe it is too soon for them to take effect?

teapot

Oh. I've been on more than that. I've been on different kinds of b/c since 2002. No birthcontrol alone has helped any of my PCOS symptoms much. I've been using 5% minoxidyl for 4 years now. I was on flutamide for 2 years. During those 2 years I did a 2 month test when I didn't use any minoxidil, and the hair started falling out more. So it was the combination of b/c+flutamide+minoxidyl that worked. But as I said I can't take flutamide anymore. I was on Yasmin for 4 years, on its own it was like nothing. Now my doc prescribed Yaz instead, I'm not exactly sure why, it's even lower on hormones than Yasmin. Been taking it for 2 months now. I highly doubt it will help my hairloss, in fact this hairloss began when I got off flutamide and got onto Yaz.

moondust52

Dear Teapot,

If you do not receive any responses to this post check out a website "her alopecia

as there are many women on this board who are quite active and post regularly. (Please note that I had to break the website name apart as this site as it would not post--do not put a space between heralopecia).

With regard to the spirolactin maybe you can find enough information on this website and the one I just suggested by using the search function. You could then take that information to your doctor. You would be best off seeing either a endocrinologist who deals with PCOS or a dermatologist who has an interest in hair loss. How you find that dermatogist in Croatia I have no idea. What kind of doctor prescribed the flutamide? How did you realize you were having trouble with your kidney/liver? Had they been doing tests of your liver and kidney on a regular basis?

From what I have read it is not uncommon to start shedding hair 2-3 months after a change in medication that was supporting hair growth. So, it could be that it is not the Yaz causing your loss but the effect of no longer being on the flutamide.

On the heralopecia website there are a number of women using herbal remedies such as saw palmetto extract in place of spirolactin. Of course this could not nearly be as powerful as the flutamide but might be a bit helpful until you can see a doctor. Ask your gynocologist if this would be ok for you as this you can get without a prescription.

I am hoping someone on this site responds to your questions as to how long they have been on spiro or any of the other meds you listed and if they have helped with hairloss. I would like to know too.

teapot

Gyno. And yes. Liver tests every 3 months. My bilirubin was high.

That is exactly what I said. It's not from Yaz, it's from lack of flutamide. I'm desperate because I can't take it anymore.

Thanks for heralopecia, I'll check it out!