Thankyou so much for all that info Roz. I am beat right now but I will get into it tomorrow more. It mentions more than once about the cyclic method of taking it but my Dr didnt say anything about having a break. It might be a good idea. I really dont want to have spotting throughout the month.

Yes, I will get my potassium levels checked. The warning level that came with the meds mentions it more than once and in bold type I guess its a blood test?

Lesley

You're welcome, matey!

Yep!

One more thing (can't remember if Tanya mentioned this), Aldactone has a slight diuretic effect so if you seem to be peeing a bit more than usual....I don't think I need to tell you what to do! Just something to watch out for.

Sleep well!

Roz

I take 25 mg, once a day. That is it. I can't imagine taking it more than that. Diuretics are rarely administered any other time than in the morning because you don't want to disturb sleep by taking it later in the day. I would really double check with the doctor on that. Call the nurse at the office, and say you want to be sure you are taking this correctly, give the info you have on taking it on cycles and ask for a call back on recomendation of how to take it.
I had my first potassium level about 2 months after I started the meds, but I'm on such a low dose that I doubt it was going to be that much of a problem before that. You are on a much higher dose and I still question that, because with everything else I have taken in the past they always start low and work up.
Definitely ask when your doctor wants to check your levels. Mine checks mine now everytime I go in and that is anywhere from every 4 to 6 months.
Tanya

I actually asked the Pharmasist about the doseage when I picked up the prescription and she said that was completely normal for what I was being treated for. I also saw that doseage on a web site re: hirsutism. I have been on it for a week and no side effect at all so far Havent noticed any difference in peeing either, even with taking the last one at dinner time. I will get my potassium levels checked within the month.

Thanks for your concerns in this, so far everything is going fine.

Lesley

[QUOTE][I have already looked into PCOS quite throughly and seem to have alot of the symptoms but since nothing showed up on the ultrasound {cysts} he said I dont have it. Thats why I went on to have further tests done {thryoid, insulin} and all came back normal. {results posted in thyroid forum} Only my hormones {male} were out of wack.

Akiwican [B][QUOTE]

Cysts on the ovaries are only one symptom of the condition. In fact many PCOS experts would like to rename the syndrome for this very reason. You have excess androgens, insulin resistance and hirsutism alonhg with skin problems. I would bet all my wordly goods that you have PCOS. Please try to find another doc or give your one articles on PCOS so that he becomes informed.

One does not have to have all the symptoms to suffer from it. I was not dx for years because I was skinny and it was not till I reached 168lbs that I was dx. Also, my severly carb intolerant friend who gained 90lbs in two months does not test as having PCOS, even though she clearly does, and has lost tone of weight since doing Atkins and being on medicine. Moral of the story, keep fighting for that dx

Could well be that I do have PCOS despite the fact that I dont have cysts.

I have always had a weight problem {from childhood} so its not like I just gained a huge amount in a short time frame.

I am not insulin resistant.

I have read that you can gain some control of PCOS symptoms with diet i.e. low carb. Since starting l/cing I have cleared up my acne, regulated my periods and lost 27 lbs.

So for now I am going to continue on as is. Thanks for the input though.

Lesley

Hi, I was on spironolactone and it didn't help me. I still have excess hair growth and thinning hair on my head. I keep telling my husband, "I'm going to be the weird bald lady with the mustache and beard that all the kids will point to and laugh at".

I don't know what to do about it and neither do the doctors, so I quit going to them.

If you or anyone else finds a solution, please keep me in mind.

Thanks and good luck. :-)

(brief introduction: I am 33 years old, first diagnosed with PCOS when I was 14 because of irregular periods. I didn't have a weight problem until pregnancy (gestational diabetes), and since then have been up and down on the scale. Sept 28th of this year I decided to take some drastic measures. I was tired of my primary care doc saying, " You need to eat less and exercise more..." without offering any help beyond that. He just couldn't understand it wasn't about my lack of self control or deficient will power. He could not comprehend anything beyond ,"its all in your head - you just have to make up your mind to do it. Try some slimfast." I am a cancer research nurse and I work in an oncology group. We give slimfast to patients to help them gain weight. So I ordered phentermine on the web to help with my appetite, and while I don't recommend it for everyone, it sure works for me.)

Sorry to ramble on... ANYWAY - how wierd are your hormone levels? About 5-6 months ago I started to notice my hair thinning and light facial hair - a little more than usual, anyway, so I made an appointment with an endocrinologist, did a bunch of lab work thinking this is classic PCOS with some insulin resistance - all I need is some BCP and spironolactone.

Instead, it turns out that my estrogen is normal, my androgen level is normal, but my testosterone level is three times what it should be. This explains my symptoms, but where is it coming from? More tests to schedule. Does anyone else have this problem? Could it be just PCOS? My doc and I discussed possibilities - none of which I liked - an ovary acting like a gonad, or a stray gonad (ack!) or a tumor that secretes testosterone, or a pituitary tumor. I would really appreciate any feedback.

I also have unusual levels of testosterone and found the following in a website (http://www.gynob.com/pcos.htm):



Recent advances in understanding this disorder have demonstrated other problems besides alterations in the menstrual cycle and ovulation. For one thing, there's a certain tendency toward diabetes with a phenomenon called "insulin resistance." It's not that there's too little insulin, but that the insulin made is not as good. Therefore, handling sugar is impaired. The body responds by making even more insulin, and the extra insulin tends to stimulate other tissues that normally aren't particularly responsive to insulin. One of the tissues is the ovary, which is stimulated to make extra androgen (testosterone). Other effects on other tissues include:

stimulation of the lining of blood vessels, causing hypertension;
effects on the liver and on cholesterol metabolism, contributing further to heart disease;
and a decrease in sex hormone-binding globulin (SHBG), which means less sex hormone is bound ("tied up") and therefore free to act.

The "bound up" testosterone is fairly unreactive. The free testosterone is what has the classical male hormone-like effects, like hair growth, acne, and disruption of the normal ovulation and cycling. There accumulates a collection of early follicles that don't go any further. (An ovary in such a state is, however, "loaded" such that there is an exaggerated response to induction of ovulation with a greater risk of twins and triplets from multiple simultaneous ovulations.)

The "full-blown typical" PCOS patient has a history of only occasional ovulations (<8 per year) and prolonged cycles of greater than 35 days, male-like hair distribution or hair loss, obesity, multiple ovarian cysts, acne, and laboratory assessment demonstrating too much testosterone. But there are varying degrees of PCOS, and many women with it have only few or isolated aspects of the disorder.

Hope that helps!!

Thanks so much for the info. It really helps just knowing I'm not crazy or alone in this. What has me worried is that my doc said that usually if it were the PCOS - other hormone levels - particularly androgens and adrenal related stuff - would be out of whack, too - but they are not. He couldn't - or wouldn't speculate on the likelyhood that it's a mass (cancer) that is producing testosterone - which happens with some kidney cancers, or something wrong with my pituitary gland, or PCOS that just isn't behaving like most other PCOS cases.

This disease is SOO complicated and everyone's case is different from another. Try not to get too worried about cancer - it could just be the PCOS.

Keeping my fingers crossed that your tests come back good.

Take Care!

It would be easier to dismiss if I didn't work with cancer patients 40-60 hours a week. I guess I am so accustomed to seeing the worse case scenario - I expect it for myself. Thanks for the positive vibes.

Hi!
I'm on 100 mg Spironolactone & ortho tri-cyclen because of all the PCOS symptoms.. irregular heavy periods, acne, hirsutism, etc. My doctor told me I can wait to see if I have PCOS until I want to have chitlins, but I am tired of taking Spironolactone... I haven't noticed any lightening or lessening of body hair (however, I've had a lot of it lasered off). I don't know what effect it has had on my acne (I know it didn't stop it because I take minocycline for that, and tried to stop taking it and it came back) Do you know of anyone who has stopped taking Spironolactone and taken L-taurine instead? If I take that instead will a fresh crop of hair sprout up? Will it be bad for my (possible) PCOS?

since taking Spironolactone & ortho-tricyclen I started getting cavities (never had any before in my life) and gained weight.. I have NO IDEA what it's doing to my bones!

Sheri

Sheri,

You might want to talk to your doc about the bcps - Ortho Tri-Cyclen are triphasic, which tend to be the worst for PCOS, as they don't usually contain enough hormones on a constant basis to keep our own hormones in check.

From the INCIID PCOS faq page:


Which also makes sense - more follies sitting around, the more testosterone they're putting out.

You might be better off with a biphasic pill, like Desogen or Demulin. Or, for that matter, monophasics like Yasmin, which is supposed to help with hair growth & skin issues. For what it's worth, my acne and hair growth literally exploded when a new GYN changed me to the Ortho Tri-Cyclen. Most docs simply aren't up enough on the research to know which pills work best for women with PCOS.

Hope that helps a bit.

Mara

Hi Mara!

I went for my follow up appointment today and did an ultrasound (to see if there were cysts on my ovaries) and she said they looked normal. There was an average amount of follicles! Even so, I asked to be switched to Yasmine rather than Ortho-tricyclen. Thanks for the advice!
I'm going to try and stop taking Spironolactone since the Yasmine has a similar substance in it. I asked about taking L-taurine instead and she didn't even know what it was.
We'll see what happens! thanks!

Sheri

ps- you should go introduce yourself in the new member's area!