It has been awhile since I posted, but I am hoping for some advice from some veterans of PCOS. My 19 yr. old daughter has been diagnosed and she went to an endocrinologist who put her on BCP's and synthroid told her she was insulin resistant (because she had 2 skin tags on her neck) and pretty much told her to watch her carbs and live with it. Well, she did horribly on the BC's (Yasmin and Ortho Evra Patch - weight gain, moodiness and elevated cholesterol levels). In April, she went off the BC Patch and started the South Beach Diet. Over the past 3 months, she got one period, and lost maybe 5-7 lbs. She was only about 20 lbs. overweight to start with. Anyway,we finally got into see a reproductive endocrinologist last week, Dr. Brinda Kalro - Magee Women's Hospital, Pittsburgh, PA. She was very thorough and extremely knowledgeable about PCOS (spent over an hour with us). Anyway, the first thing she did was check Kayleigh's progesterone (something the other doc never did). It was very low .42. She then ordered about 20 other tests (9 tubes of blood) to check for every hormone , thyroid, cholesterol, glucose, etc. We are still awaiting the results. In the meantime, since Kayleigh stopped the pill, she has lost alot of hair and she is freaking out. The doctor feels the results will show very low overall female hormones and high male levels which is the reason for the thinning. As much as Kayleigh does not want back on the pill, the doctor feels that the BCP and either Spiro or Flutimide would be her best option if the tests come back the way she thinks they will. Also, she will take her off the synthroid because she feels that Kayleighs levels were still normal, but on the low end. She mentioned lower dose bills than used before like, Alesse, Mircette or Lo-Estrin.
We are so confused. We asked about natural treatments and she said there is no evidence that they work and if we want to get this hair loss under control and periods back this is the way to go. She said her glucose test (from about 2 months ago) was completely normal, actually low and that gluophage was not an option because it would make her hypoglycemic.
Any advice. She doens't want to take BCP's, but we are afraid that if she doesn't do something soon, she is putting her reproductive health in jeopardy and of course, her usually full head of hair.
First I wanted to commend you for being such a caring mom,who wants to find the best for her daugher! Your daughter is
lucky to have you!
Regarding the BCP'S,There is no evidence to suggest they balance hormones at all,in fact many health experts believe
they make the situation much worse.With PCOS its going to be allot of trial and error,it takes most of us years to find
things that work,and everybody is going to be different.
I personally would never take BCP's because they are simply masking the problem instead of solving them.
Look in to Dr John Lee's work about progesterone cream.And for natural medicine find a liscensed naturopath,
osteopath or homeopath in your area who can guide you in the right direction.
Do not count on the Medical doctor who was trained in standard drug based care to support you in natural medicine,
most do not!!!!
Here are a few things currently being used for PCOS in natural medicine
Thanks for your reply "journey of lotus". Kayleigh has already been trying some natural supplements that I have researched on my own and from this message board.
Multivitamin with Chromium Picolinate
Chrominium Picolinate
Biotin
Calcium/Mag/Zinc
Fish Oil Supplements
I have read Dr. Lee's book and myself have used natural progesterone cream. I have Meneiere's Disease and my symptoms are always worse before my period so I tried the cream since I am peri-menopausal. Unfortunately it made me worse. I am going to mention this option to the doctor when she calls me with Kayleigh's test results. I have also just recently read about Saw Palmetto on this board and was going to look into that.
The problem is this-we had to wait 5 months to get our appt. with this new reprod. endocrinologist and now Kayleigh leaves to go back to college in two weeks, out-of-state. I want to take her to see a naturopath, but we are running out of time. And also, when she is home, I have to remind her every day to take all the supplements and when she is busy at school. she will definitely forget. When she is around here I can keep an eye on her, but at school, I never know what she is doing or how she is really feeling. It is so scary because in a matter of a month, she has lost a so much hair, especially by her temples. Something has to be done soon.
Anyway, I thank you again for you advice & hope we make the right decision on which route to take. I have alot of praying to do.
Hang in there Debbie,I also lost allot of hair between age 19-21....I know exactly what she is going through..Its like I mentioned it takes time to find things which will work.Im still searching.For the hair loss I reccomend your daughter switch to all natural shampoos and conditioners.And massage her scalp daily.Its hard to stick to routine,im in my twenties and I still have a hard time sticking to routines..but its the only way,shes got to get her mind focused,it will come in time....I will be praying for you :-)
This is actually the first time I am posting on this forum (just diagnosed 1 week ago), but I wanted to respond regarding BCP. I started on BCP when I was around 18 the first one I was on (can't remember name) was killing me ie: giving me horrible mood swings and severe depression. I made my doctor switch my pills back then and he put me on Alesse and from the time I was 19 til now (24) I haven't had any problems like that at all. They are very low dose so she should be fine on them. I have also started spiro for my wonderful hair problem, but I wanted to give you a heads up that it most likely was just too high of a dosage for her.
Thanks to both Maggie and journey-of-lotus. It really helps to hear what other people have gone through (the pros and cons). The BCP is such a big thing. Kayleigh has been on and off them for 4 years. Iniitally for acne, then to shrink an ovarian cyst which eventually had to be removed (never any mention of PCOS through all of this). It wasn't until last December, when she was diagnosed and placed on Yasmin and then The Patch that she really had some problems. I really like the new Reproductive Endo and want to follow what she says, but it is always in the back of my mind that something natural must help this. All I know is that this is all way too much for my 19 y.o. to handle. She is afraid she is going to end up fat, bald and unable to have kids and it just freaks her out. She has been on this message board and she just gets upset. She is supposed to be enjoying college and having a blast instead of worrying about periods, pills and hair loss. So, as you can see, I do the worrying -- isn't that what Mom's are for?
with having pcos comes the male hormone and because of that little guy the hair starts thinning. it is depressing. but there is nothing to do about until you get pcos under control. i was told by my gyno that if i was not trying to get preggers that i would have to be on bc's to help regulate me. i know from coming here i can get a lot of support. i have only been dx with pcos in the last year. so im still learning things about it. i hope this littleinfo helps you. good luck. any time you need someone to talk to you we are here.
I have just started a natural vitiamn call glucabetic you can get it at flourishwellness.com it helps with insulin resistance, I have also starte the Progesterone cream. I do not reccoment to many medication for they have all cause me to be very sick. I took glucaphage ( a diabetic drug to help with IR ) and it made me so sick I couldn't eat. I also suggest low carbing. Good luck to your daughter and may God bless and heal her!
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Lady Wolfe, will you let me lknow how the glucabatic is working for you? Are you IR only? Or do you have sugar problems too? Thanks So Much!I was looking at buying it but, I wanted to see how it worked for someone else. I was on Met & I don't have sugar problems only Ir & it made me sick plus pharmacist said it was really to reduce sugar not for IR.
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Kays Mom, I am taking progesterine cream & vitamins from http://www.womentowomen.com/LIBpcos.asp see the link there is a article about PCOS and how this program helps with it. I am feeling more eneergetic no more hair loss, I think I can count on one hand in the last 2 months how many cysts/boils on skin I have gotten so less than 5 which is amazing to me, More energy, no afternoon slump, less edgy ah ..and sleeping better! I do not have evidence about IR because I don't go back to dr. for about a month or so. I thouhgt about getting a glucometer like diabetics have but I think it only measures suger & problem is insulin.
oh and I wanted to say after being on and off Birth control for oer 10 years that I am having hemoraging problems now for past 10 months.
also wanted to mention that even dr's agree that BCP's should NOT be used long term you can not stay on them forever So if I knew what I know now I would especially when I only had such a small amount of weight to lose like your daughter I would have pursed a lifestyle change.... (this is what I am doing now) It doesn't get better over night but met doesn't work right away either it takes months for some. If I had an overnight solution I would give to you. But the women to women program I did notice a difference in 2 weeks. It is money back guarantee and comes with the Schwarzbein Principal Book which is a great read & has a samle menu & recipes.
whole grains verses refined
more protein & vegies less fruit & carbs
low glycemic eating
lots of water, green tea w/cinnamon
a regular exercise program/class
side note the program Super Size me mentioned that as Mcdonald's expand all over the world so does PCOS. They also mention heart disease diabetes etc..I am not saying Mcdonald's causes PCOS But an interesting coralation between refined foods and PCCOS diagnosis.
oh and try to have her stay away from corn syrup...which is really har cause it's in everything from Ketchup ( i get ketchup at tradeer Joes Now no corn syrup) to which I was amazed by some frozen Burritos that had steak & green chile in them really homemade looking and there it was corn syrup. well my daughter is potty training got to run quick e-mail me if you have questions anytime. I am pretty new at this been doing lots of research.
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Canistars,
your last post i must say was one of the most helpful post I have read on line!! thanks so much. I too am trying the cream and keeping my fingers crossed my husband and i have been ttc since 2003.
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Hey quick update...I had a friend who started a NP cream and used it one time a day for 3 weeks as soon as she went off the cream she started her cycle!!
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Need Advice 
