advice please....

unlucky · 12-14-2006, 09:15 PM

Hello everyone. After a year of many Dr. visits, we have determined that I do not have PCOS. You would think that I would be very happy to hear that, unfortunately for me, I have the three worse symtoms. Hair loss, acne and some excess hair. My dermatologist said it is most likely sensitivity to testosterone because all my hormone levels are normal.

So she went ahead and prescribed 100 mg Spiro for me to see if it will help. She would like for me to try it for 2 months and follow up with any changes. I also asked her about Nizerol (sp?) because of all the posts I have read on here about it. She went ahead and wrote me a prescription for 2% as well to try.

My problem? I am a little nervous about taking Spiro. I have never taken any medications other than BCP's. I don't even take vitamins or Advil. Just not a pill person. Now she wants me to take a pill that is not even for hair loss and I have to avoid potassium. I asked her do I have to have my liver checked and she said no. But I am still really nervous. I wonder if I should try natural first, but at the same time I am tired of breaking out and the hair loss. I have been dealing with this for 20 years.

So if you don't mind, may I have your thoughts and opinions on this? Has anyone had any real success with just vitamins? Has anyone found out Spiro is realyl bad for you? Should I just try the Nizerol first?

Very frustrated.

Eva37 · 12-15-2006, 12:07 PM

hi

ive been on spiro about 5 years now. It has really helped with my hair.
eva

Julius · 12-16-2006, 12:51 AM

Hi unlucky,

I was on 100 mg of Spiro for a while too. While I don't suffer from hair loss (yet, anyway) I do have the dreaded excess hair issue. Spiro took a while (about 6-7 months?) to kick in but I saw great results.

You will have to watch your potassium intake though. I had to stop taking it because my potassium levels were too high. I didn't feel bad or have any reactions too it though. My only "side effect" was having to pee a lot, since it is a diuretic.

I can't comment on vitamins helping since I've never tried. Maybe someone else will know!

Good luck!

unlucky · 12-16-2006, 01:50 AM

Thanks guys. I got the stuff tonight, I guess I will go ahead and try it. I'm wondering what would be safer to take, BCP's or Spiro? Oh well, I will give it a try.

Thanks again!

Allison. · 12-16-2006, 07:58 PM

Quote:

Originally Posted by unlucky

Hello everyone. After a year of many Dr. visits, we have determined that I do not have PCOS. You would think that I would be very happy to hear that, unfortunately for me, I have the three worse symtoms. Hair loss, acne and some excess hair. My dermatologist said it is most likely sensitivity to testosterone because all my hormone levels are normal.
My problem? I am a little nervous about taking Spiro.
So if you don't mind, may I have your thoughts and opinions on this? Has anyone had any real success with just vitamins? Has anyone found out Spiro is realyl bad for you? Should I just try the Nizerol first?

Very frustrated.

You probably have traditional PCOS. That's what I have. If my Testosterone runs above 22 or so, my symptoms increase. I am not yet insulin resistant or Diabetic. I take Metformin and Spironolactone (been on this combo for three years). They helped all of my PCOS symptoms except for the hair loss. My endocrinologist prescribed Flutamide this past June and the hair loss has stopped! I am so amazed. I see a lot of regrowth. Flutamide works differently on the Testosterone. (something about DHT)
I can't believe that your doctor told you that you don't have PCOS, well yes I can. I wasn't diagnosed until age 35. I have labs drawn every three months and have never had any adverse reactions to Spironolactone.

Here's some info to share with your doc and a source link:
Types of PCOS

Traditional PCOS -- anovulatory, increased androgens, no insulin resistance

Endocrine Syndrome X -- anovulatory, increased androgens, insulin resistance or type 2 diabetes

Non-Traditional PCOS --anovulatory, normal androgens, obese, insulin resistant or type 2 diabetes

Non-Traditional PCOS -- ovulatory, increased androgens, mild insulin resistance

Idiopathic Hirsutism -- ovulatory, increased androgens, no insulin resistance

SOURCE: http://www.wdxcyber.com/dxinf001.htm

Here is some more info, there is so much out there:
There are two criteria that must be fulfilled in order to make a diagnosis of PCOS - the woman must not ovulate (or ovulate very infrequently) and she must have either clinical or laboratory evidence of increased androgen (male hormone) production. The two most common manifestations of increased androgen production are either hirsutism and/or acne.
Source:
http://www.infertilityphysician.com/...ovulation.html

unlucky · 12-17-2006, 03:52 AM

Thanks Allison!

Unfortunately, I have had my GP, my OB/GYN, three different Endocrinologist's, and my dermatologist run tests. All of them have come out completely normal.

I do ovulate (I have three children with no problem conceiving), no increased androgens (my testosterone was only 14) and no glucose problems.

But gosh darn it, I have lost what seems to be half of my hair, I am 35 and can't stop breaking out (cystic acne too), and the excess hair is getting worse.

The only time in my life where I didn't lose hair or break out was when I was on Ortho-tri-cyclin, or pregnant. It stinks. I am hoping that this will help some, I am ready for this to be over.

Allison. · 12-17-2006, 12:59 PM

Have you had your adrenal glands checked? Problems there can also produce your symptoms. Mine were checked during the long process of diagnosis. Good luck, I hope you find you answers soon.

locagirl · 12-18-2006, 12:08 AM

Hi unlucky,

I'm nervous abou taking Spiro as well. I was dx'ed when I was around 18 (I'm now 23). I just had a bit of excess hair under my chin and weight problems - this continued on for four years up until October last year when my weight was much worse and the hair probs spread to my sideburn area. Now a year later, my temple hair is starting to recede/thin out a bit as well *cries*

I've been on the BCP all throughout this time (was skeptical about taking that too, but I haven't found any probs there). I read these things about spiro causing tumours in some test lab rats and it freaks me out (though having said that, they haven't proven this as any kind of link to humans at all and I've read up about it as much as I can, and there have been some awesome results in women who have used it). My endo has offered Spiro to me and I'm still weighing up whether I want to take it or not.....I told her I'd think about it for 6 months and get back to her.

I've tried B Vitamins for metabolism boosting, Evening Primrose Oil for skin, something like horsetail?? for skin/nails/hair and black cohosh for hormone balance - I'd like to think they have all helped a little bit, but to be honest, I really don't think they're doing that much. I have high testosterone levels and have heard Saw Palmetto can help (but I don't know if that would help you much if your problem is not a hormone-related issue). I'm surprised they'd only try you on Spiro for 2 months cos apparently it takes at least 6 months for hormones to adjust properly to medication....

unlucky · 12-21-2006, 04:41 AM

Quote:

Have you had your adrenal glands checked?

Allison, I have had my Adrenals, Pituitary, Thyroid and iron levels checked. Also, I have had a CBC done. All normal.

Loca,

She said 2 mos to start, that you should see some kind of change. If not, then she will up the dosage. I thought 6 mos to a year as well. But as we know, every Dr. believes and says something different. I still haven't started taking it. I'm a big chicken.

locagirl · 12-22-2006, 03:24 AM

OK, well if you start taking it - let me know - it would be good to hear your experiences given I'm worried about spiro as well. I have until April 23 2007 to decide whether I want it or not (although, if I decide before then of course I can make an earlier appointment with my endo...I somehow don't think I'll be much more decided unless my symptoms take another turn for the worse....)