PCOS CHAT LOG - JUNE 7, 1998

Pcosupport "How is everyone tonight?"

Guest2 "Fine thank you."

Guest2 "Just read the ob-gyn-l posts and they are talking about ovarian drilling for PCO."

Pcosupport "<---Rochelle has had ovarian drilling."

Guest2 "Did it work, and for how long??"

Pcosupport "Nope, it didn't work for me. But, it does for a lot of other people."

Guest2 "What finally did work for you??"

Pcosupport "Guest2, do you mean what did work as in pregnancy success?"

Pcosupport "So far, nothing in regard to pregnancy."

Pcosupport "The website changes look great. I've gotten several nice emails about the discussion board. It looks great."

Pcosupport "I really like it this time around. :)"

Webmaster "Thanks! Been working hard on it and taking people's suggestions"

Pcosupport "Yep, and your hard work shows. Thanks by the way! I know when you are moving, etc. that taking the time to do all the catch up work hasn't been easy. It looks great though."

Camilla "I have something else to share with all of you....."

Mary "Yes Camilla...?"

Pcosupport "What's that Camilla?"

Camilla "Last August 25, when I started my low carb diet, I bought a pair of jeans a whopping 4 sizes smaller than I was wearing at the time. I'm happy to report that this coming Wednesday, I'll be wearing those same jeans to the James Taylor concert in Virginia. I'm actually proud of myself!! And the only place that's still a little tight is right across the tummy (naturally)..."

Mary "Way to go Camilla!!!!!"

Camilla bows gracefully.

Pcosupport "Wow! That's wonderful Camilla."

Camilla curtseys demurely.

Pcosupport "Bet you'll be singing....~~~~~~~I FEEL GOOD~~~~~~~~~"

Camilla "Me and Aretha..."

Camilla "Wait, was that Aretha or somebody else..."

Pcosupport "lol..."

Pcosupport "Camilla, Webmaster was at the conference last year also."

Camilla "Thanks, but I owe it all to...Adkins and Metformin..."

Webmaster "Yes, it was great"

Camilla "Oh yeah? Did she raise a ruckus, or was she overewhelmed, like me??"

Pcosupport "Vic, Camilla and I tried to figure out whether we could remember each other from the conference or not one night in chat."

Camilla "And did you??"

Pcosupport "Oh, she raised a ruckus...especially at the banquet."

Pcosupport "LOL~"

Pcosupport "Right, Vic?"

Pcosupport "Yes, Bfulton, we're talking about PCOS. I'm the moderator. Its open chat about PCOS."

Bfulton "Hello, my RE said Friday that Rezulin and Glucophage have caused sudden death & liver problems. Anyone else heard this? She wouldn't let me on it."

Pcosupport "Bfulton, there have been some reports of problems with liver profiles while taking Rezulin."

Pcosupport "The drug manufacturer put out a warning several months back (November maybe?) indicating that anyone taking it should be monitored closely."

August "Isn't Glucophage Metformin?"

Bfulton "I just joined PCOSupport and am interested in attending any future conferences. When will the next one be?"

Pcosupport "Most of the docs that are prescribing it do baseline bloodwork and then monitor the patients monthly."

Camilla "Bfulton...I hope not. I've been on it since February, and have had no trouble...and it works for me."

Pcosupport "Yes Glucohpage and Metformin are the same. I don't know of any reports of fatalities from Metformin though."

Pcosupport "Well, welcome and congrats on joining PCOSupport! :)"

Bfulton "Camilla: Which one are you on and how is it working for you?"

Camilla "Metformin...it works great on me...no side effects, the liver's fine and it sure is doing what it's designed to do. I can see a difference in the tummy diameter after only 3 months"

August "Camilla, how did you get to be prescribed Metformin?"

Bfulton "Forgive my ignorance, I only just heard of it. What exactly does it do for you? Are you losing weight on it?"

Pcosupport "Bfulton, metformin is an insulin sensitizer. It is usually prescribed to those PCOS patients who are insulin resistent."

Camilla "My doctor recommended it, and I jumped at the chance. we started off on 500 mg /day, and utlimately increased it to 1000 mg/day. I don't think it needs to be any more. Bfulton...it causes/teaches/allows your body to utilize the fat it stores due to the overproduction of insulin."

Webmaster "It helps with making your body more sensitive to your insulin"

Pcosupport "Some PCOers find it does help with weight control (weight loss)."

Pcosupport "Camilla - good explanation! <applause>"

Webmaster "I want to try Troglitazone"

Camilla "I am now convinced that low carbing and metformin are the keys to my personal success with this syndrome."

Webmaster "If I can get a doc to give it to me"

Bfulton "Do you have to also be diabetic to get it prescribed? My RE wouldn't give it to me unless I was also diabetic."

Pcosupport "Congrats Camilla. Do you mind sharing how much weight you've lost since low carbing and Met?"

Webmaster "No, you don't have to be diabetic"

August "Camilla, what kind of success have you had?"

Pcosupport "Vic, you could go see Dr. Nestler, couldn't you? or Dr. Legro..."

Camilla "Absolutely not..as a matter of fact, if you're not diabetic, it will not lower your blood sugar simply by taking it."

Webmaster "Are they in Maryland?"

Pcosupport "Nestler is in Virginia (Richmond area I believe) and Legro, well you know, he's in PA."

Camilla "Let's see...since last August, I've lost 45, but 16 has been since april (second month on Metformin)."

Camilla "Webmaster, are you in Maryland??"

Webmaster "If anyone wants to print out some medical journal articles to take to their doctor regarding Metformin or Troglitazone, go to http://www.pcosupport.org/pcosinfo/treatments.html"

Bfulton "Congratulations on your weight loss. Quite a feat with PCOS!"

Webmaster "Yes, I'm in Baltimore"

Camilla bows gracefully.

August "Yes, congrats Camilla - inspirational!"

Camilla "I'm in Jarrettsville"

Webmaster "Where is that? I'm new here"

Camilla "Just northeast of Baltimore, in Harford County"

Webmaster "I'm near Pikesville"

Camilla "That's not far at all."

August "I'll have to remember to have a US map to hand in future!"

Bfulton "Is Metformin FDA approved?"

Webmaster "August: are you in MD?"

August "MD?"

Webmaster "It's approved in treatment of diabetes but not pcos"

Webmaster "Or I should say, it 's not normally used for that"

Camilla "Maryland, August"

Bfulton "First I've heard of Troglitazone. What does it do for you?"

August "Sorry to be dim, but I live in the UK :)"

Webmaster "Makes your body more sensitive to its own insulin"

Webmaster "Being resistant to insulin is a leading cause to many pcos symptoms"

Webmaster "Metformin and Troglitazone basically do the same thing"

Bfulton "Are folks having better luck with Rezulin, Metformin or Troglitazone?"

Camilla "I've only taken Metformin, so I can't really speak to the issue..."

Webmaster "Rezulin IS Troglitazone.....I haven't tried any of them yet tho"

Bfulton "Thank you, I'm learning."

Webmaster "I get confused with the generic name vs brand name, too!!!"

Bfulton "Have any of you been to a PCOS conference?"

Webmaster "I was at the conference last year"

Bfulton "What was it like?"

Camilla "I was at the first one last year..."

Webmaster "IT WAS WONDERFUL"

Camilla "What she said..."

Bfulton "Did a lot of women show?"

Webmaster "Seeing so many women there was a real emotional high"

August "I'm so jealous!"

Camilla "more than I'VE ever seen!!"

Pcosupport "<---attended the conference last year in MD"

Bfulton "How do I get notified of an upcoming conference if I'm a new PCOSupport member?"

August "I've never met anyone else with PCOS - sob!"

Pcosupport "The conference was wonderful. Learned alot and met alot of wonderful women and

Pcosupport "Bfulton, if you are a member of PCOSupport, you'll receive conference announcements via the mail."

Pcosupport "Also all conference announcements will be posted on the website. http://www.pcosupport.org"

Camilla "Neither had any of us...I went for almost 20 years believing I was the only one with pcos..."

Pcosupport "And there will be announcements to the PCOSA listserv and usenet boards."

Bfulton "I'm 43 and was told by my RE Friday that because prednisone made my periods regular for the first time in my lfe, I could try to get pregnant now. I thought I was too old, gave up on the dream long ago. What do you think about trying at my age?"

Camilla "GO FOR IT!!!"

Webmaster "My mother just had a baby at 43"

Bfulton "Really? I'm so glad to hear that!"

Barbaran "My mother was 45 when "Our Roberta" was born"

August "My uncle became a father at 52 - why should it be any different for women?"

Bfulton "I'm going to try it."

Camilla cheers enthusiastically.

Bfulton "Does anyone here take Spironolactone?"

Barbaran "How old are you B?"

Webmaster "I use to take it"

Camilla "I do...200 mg/day"

Webmaster "But I'm trying to get pregnant and had to discontinue"

Webmaster "But I took it for about 5 yrs"

Pcosupport "Bfulton, can you explain how prednisone helps? some of us may not know."

Bfulton "I take 100 mg and have for 20 years. It cleared up my roaming acne from my thighs, face, back, and upper arms. It reversed the hair growth in the order it appeared from my chin, neck, toes, chest, stomach, abdoman and ugh, buttocks."

Webmaster "Has anyone taking Troglitazone or Metformin noticed improvement hirsutism?"

Bfulton "The only area I still have hair is my chin. I have to pluck. I recently began laser hair removal and will continue trying that supposedly permanent solution."

Mary "Wow B - I didn't know it worked that well!"

Camilla "No, but I'm taking saw palmetto and should see some kind of change in the next month or so...at least I hope so."

Bfulton "It took six months to improve the hair, but it does work. (Spironolactone/Aldactone)"

Camilla "Cool...in between the Spironolactone, Metformin and saw palmetto, I should be hairless in no time!!!"

Bfulton "Webmaster: since stopping Spironolactone/Aldactone, has your hair/acne come back?"

Webmaster "YES!!!!!"

August "A real smoothie in fact!"

Webmaster "My face is worse than ever"

Bfulton "I'm sorry. Having a child is much more important of course, but I was always so embarrassed by all my hair growth."

Mary "Have any of you ladies read Geoffrey Redmond's book "The Good News About Women's Hormones"?"

Camilla "No..."

Mary "He's an endo-guy."

August "There's good news?!"

Camilla chuckles in amusement.

Pcosupport "lol"

Mary "I didn't find any good news but I learned alot about the various hormones, tests, meds, etc.."

Mary "It was a good starter book."

Camilla "Mary- would you recommend the book to someone who needs to know the proper tests to have run to find a diagnosis?"

Mary "Yes. It tells what it means if a certain hormone level is too high or too low, how to interpret test results, conversions for lab units of measure..."

Pcosupport "Others have told me that this is a great book for PCOers to read."

Camilla "I'll tell my cousin about it...thanks."

Mary "It was a good read.....but not a wealth of good news."

Webmaster "Anyone trying the herbal route"

Mary "He advises shaving facial hair....."

Camilla "Just cause he does???"

Mary laughs hysterically.

Mary "He says its easier on the skin than plucking, electrolysis, depilatories.."

August "I'm also laughing, but haven't quite worked out the nifty on-screen thingy..."

August "I always thought shaving was *the* big no-no"

Bfulton "What is the latest in make-up cover-up? I've used the same pancake make-up for 20 years."

Camilla "I have another question....does anybody know a source for Splenda?"

Pcosupport "Splenda?"

Bfulton "What is splenda?"

Pcosupport "Make-up cover-up, I use Clinique."

Camilla "The new "sugar" that has just been approved by the FDA...you can use it in cooking, and it is not absorbed as glucose by the body..."

Pcosupport "Camilla, I haven't heard of it. It probably takes longer to get the news down here. lol"

Camilla "It has been available in Canada for some time...I sure wish I could get a handle on it.."

Bfulton "Does this chat occur every Sunday night?"

Camilla "Rochelle...Dothan is not yet off the map....but it is close!"

Mary "Bfulton...yes, it is every Sunday."

Mary "I called my RE's office Friday (looking for answers) and was told PCO was not officially diagnosed."

Pcosupport "Camilla, you are right about Dothan but I'm in Auburn now...which is way smaller."

Pcosupport "Mary, why's that?"

Mary "Because I had gone there 8 weeks preg for an ACTH Stim test - which was negtive or normal."

Camilla "Why the Dothan on your e adress?"

Pcosupport "Mary, did they do any other bloodwork or anything?"

Mary "My OB had said that since the Stim test was normal that I had PCO."

Pcosupport "Camilla - originally I am from Dothan. get it?"

Camilla "ahhhhhh!"

Pcosupport "I'm not real creative. lol"

Mary "Rochelle, the only thing elevated is my DHEAS..but that was from a blood test 6 mos prior."

Pcosupport "Mary, that is my situation right now, my only elevated hormone level is my DHEAS. I do have the cysts in my ovaries though and I don't ovulate."

Mary "I didn't have the cysts. The RE said to come back for more tests when in a non-pregnant state. He meant not lactating too."

Pcosupport "Yeah, I forgot about that. You need to have the tests repeated after you quit b-feeding."

Mary "So I guess I won't *know* if I have PCOS till next year!"

Pcosupport "There are probably tests the docs can do now to help with symptoms (if you are having any) like excess hair, acne, etc."

Mary "The RE said they wouldn't be completely accurate with the breastfeeding hormones."

Mary "Ladies, meet Dr. Flavio from Brazil!"

Pcosupport "Nice to 'meet' you Dr. Flavio."

Flavio "I have a LAG here! Hello, everybody!"

Camilla "What is your specialty, Dr?"

Mary "Dr. Flavio, do you treat women with PCOS? And if so, what do you prescribe?"

Flavio "Usually I work more with pregnant women, who doesen't need treatment to PCO :)"

Flavio "But sometimes I use the old oral anticoncepcional, if she doesen't want to be pregnant"

Camilla "what percentage of your patients have pcos?"

Flavio "Camilla, I am working on obstetrics and seldomly I have gynecologic patients, therefore my percentual in PCO is small, maybe 1% or less"

Camilla "Oh."

Camilla "We're sure international tonight!! August in the UK and Dr, Flavio in Brazil...and me in little ol' Jarrettsville..."

Pcosupport "And don't forget me in Auburn, Aalabama. lol"

Barbaran "I'm in Texas and it's another country!"

Pcosupport "Welcome to PCOS Chat Fiona."

August "Camilla, if I'm looking at the US, are you top, left, right etc?"

Mary "And of course Minnesota may as well be Canada!"

Camilla "Baltimore is on the same side as New York(eastern US) and just south of there."

Barbaran "August it's on the east coust"

Barbaran "Fiona where do you live?"

August "How embarrassing - I actually spent a year in Mass. - I should know better!"

Flavio "I think my falls will begin... :("

Fiona "I'm in Sydney, Australia"

Camilla "WOW!!!"

Camilla gives a crisp military salute.

Pcosupport "We are quite diversified tonight."

Camilla "THIS IS REALLY NEAT!"

Pcosupport "Yes it is."

August "Well thank-you-very-much - I dont remember the UK getting a WOW (sniffle of self-pity)"

Camilla "OF COURSE I MEANT THE UK AS WELL!!"

Pcosupport "August, WOW!!!"

Barbaran "Hello Fiona, I was in Australia for 6 weeks about 5 years ago. Sdyney is Beautiful!"

August "Thanks for the WOWs - I am somewhat placated (stiff upper lip in place) ;)"

Pcosupport "LOL August."

Camilla "Ah, you Brits...ya gotta love 'em!"

Pcosupport "August, what time is it there?"

Lucy "Hi everyone-I just got here and I'm new ;)"

Pcosupport "Hi Lucy. Welcome to PCOS Chat."

Pcosupport "Where are you from Lucy?"

Pcosupport "We have people from several different countries here."

Lucy "I'm in san diego....orig:New York"

Pcosupport "A west coaster - its early there. :)"

Barbaran "Dr. Flavio are you in Rio? I forgot"

Flavio "Yes, Barbara. Rio de Janeiro, Brazil."

Lucy "Hi Camillia and PCO..I'm lost don't know what I'm doing"

Camilla "So far, you're doing fine.."

Pcosupport "Well, just join right in. You can ask questions, talk, comment, etc."

Pcosupport "We are having an open chat tonight about PCOS (and a few other things here and there)."

Lucy "I am very hungry right now...trying to stay with the protein diet thing, but it's not working keeping me full ;("

Camilla "Are you doing protein power, or another diet?"

Pcosupport "Lucy, what are you eating?"

Barbaran "Can anyone explain what "drilling" ovaries means?"

Pcosupport "Camilla has been sharing with us her success with low carb dieting and Metformin. She's lost alot of weight and is down 4 sizes in jeans. Way to go Camilla!!"

Camilla curtseys demurely.

Camilla "Barbara...I have no clue. Maybe Rochelle can explain. I never had that done."

Pcosupport "Ovarian Drilling is a procedure where the ovaries are drilled with a laser."

Pcosupport "I've had it done (December 96)."

Camilla "Youch!!!"

Pcosupport "The docs do it via a laparoscopy, under general anesthesia, and they basically 'burn' holes in the ovaries to destroy some of the ovarian tissue."

Camilla cringes in terror.

Pcosupport "This procedure is the 'newer' version of what many docs did years ago called a wedge resection."

Barbaran "Why is this done? And what does it do for you"

Pcosupport "Except this destroys less tissue and is supposed to be less invasive and hopefully leave fewer amounts of scar tissue, etc."

Pcosupport "The idea behind this procedure is that it will help PCOers by giving them a temporarily 'fix' for the ovulation problems."

Pcosupport "Sometimes it works and sometimes it doesn't."

Pcosupport "In my case, it didn't."

Pcosupport "Some women will spontanesouly ovulate on their own following the procedure and will subsequently conceive."

Barbaran "I have never understood the procedure..thanks for the explanation"

Carlita "I've had the Lapaoscopy done..it really wasn't that bad."

Pcosupport "And, some will be able to get better responses to the fertility meds following the drilling."

Fiona "Did it work for you Carlita?"

Pcosupport "One thing it did seem to help with for me was that my hormone levels have improved. The only thing that remains elevated with me is my DHEAS. The other things like testosterone, etc. seem to have balanced out."

Pcosupport "I'm thankful for that part."

Camilla "Do you take any meds?"

Angela_b had her ovaries drilled in November of '96, and conceived next cycle.

Carlita "I only had the Laparoscopy done..they didn't do the drilling."

Fiona "I was only recently diognosed, but all my doc said was you have this, you wont be able to fall pregnant, come back in 3 months and we will put you on a fetility drug, should I change doc's?"

Pcosupport "Camilla, are you talking about fertility meds after the drilling?"

Camilla "yes"

Carlita "I am wanting to be put on the Metformin, but my Dr is the old fashioned kind and says that since I didn't have high insulin or blood suger then I doubt he will even consider the Met."

Angela_b "What were the 3 months supposed to do?"

Carlita "I am wanting to be put on the Metformin, but my Dr is the old fashioned kind and says that since I didn't have high insulin or blood suger then I doubt he will even consider the Met."

Camilla "Fiona- what kind of doc is this one? A reproductive endocrinologist is your best shot for fertility, I think."

Pcosupport "Congrats Angela."

Barbaran "Dr. Flavio just emailed me that he crashed and sends his apologies to all of you..."

Pcosupport "Fiona-yes. Or, alternatively, you can take an aggressive approach to your healthcare and help educate the doctor."

Pcosupport ":)"

Pcosupport "Camilla, yes I did another 2 cycles of Metrodin with IUI, following the drilling without success."

Fiona "He was just a gyno, he is supposed to be very good"

Pcosupport "Carlita, my docs said the same things initially. Then I did the homework. I found the research and medical journal articles and took copies to him."

Fiona "That's a good idea"

Pcosupport "That seemed to 'open' his eyes and he became more open to the use of Metformin."

Camilla "Fiona- gyns are great, but in my opinion, a RE would be better.. this is an endocrin problem that causes a gyn problem. you have to start at the source of the problem, which is with hormones."

Fiona "Oh , thats interesting"

Camilla "Fiona- if this condition is not frustrating on its own, most doctors have no clue how to treat women with PCOS...and are not particurarly interested in being aggressive in any kind of treatment. at least with an endo doc, the whole endocrine disorder is addressed, which helps the fertility problem once it levels out."

Carlita "I want to go to an RE, but my insurance is HMO and there are no RE's on the plan."

Fiona "Thats interesting Carlita"

Fiona "I wouldnt even know how to find one in Australia"

Camilla "Rochelle, are there lists for PCOS docs in Australia via PCOSupport??"

Pcosupport "Camilla, PCOSA is compiling a Phycisian List of "PCOS friendly/knowledgable" docs."

Pcosupport "We have a few from Australia on the list currently I believe."

Camilla "Maybe it would help fiona find one..."

Mary "That will be very helpful Rochelle."

Pcosupport "If anyone wants a copy of the list, they can write email to info@pcosupport.org"

Fiona "Yes, very"

Fiona "Ok, thank you"

Pcosupport "Fiona, hold a sec and I'll check my listing for Australian docs."

Fiona "Thank you"

Pcosupport "Fiona, yes, there is one on the list. If you give me your email address, I'll give the info to you via email."

Pcosupport "Where in Australia are you located?"

Fiona "I'm in Sydney"

Fiona "Or 1 hour from it"

Pcosupport "Also, FYI, there are other PCOSupport members from Australia that are interesting in forming a chapter (local support group) and you might be interested in that as well."

Pcosupport "This doc is in Murdoch. Is that close?"

Fiona "Hmmm, I've never heard of that"

Pcosupport "Well, give me your email address and I'll send it to you anyway. I have name, address, phone number and even a website."

Pcosupport "You can check it out and find out more about the location and distance. He might be able to refer you to someone closer if he's too far away."

Fiona "Great thanx"

Barbaran "What a group you have here tonight Rochelle."

Fiona "Is this going to be a regular thing, chat on Sundays?"

Camilla "Hi Debbers and Rrl...you're awfully quiet tonite..."

Pcosupport "Barbara, yes, I'm glad to see a nice size group. I truly believe that as the word spreads about these chats, we'll have even more."

Pcosupport "Before when I held chats on AOL on a regular basis, I would between 20 and 30 people each time."

Pcosupport "Yes, Fiona, we have the PCOS Chat each Sunday night from 7pm to 9pm Central Standard Time."

Camilla "And then Rochelle's slim fingers will be smokin on that keyboard for sure!!"

Pcosupport "Also, FYI everyone, the PCOSA Chat Room on the PCOSupport website is supposed to be back up and running as of today. So, feel free to utilize it by going there and chatting 24 hours per day."

Rrl "This is the first time I have ever done chat and I have a question--took me awhile to get the download! I have just started taking metformin 850m 2x day and my question is how do you know if that dose is okay--my doc is not an RE. Any ideas?"

Pcosupport "You may be the first one in the room, so wait a few minutes when you get there for others to join you."

Camilla "Are you having any side effects? And how long have you taken it so far?"

Pcosupport "Also, the PCOSupport online Discussion Board is back and running. It looks great and is a great way to communicate and share information. You can find it on the website as well."

Rrl "No side effects whatsoever (I must have an iron stomach). I have been taking it for 2-1/2 weeks."

Pcosupport "Rrl, I took 500mg 3x day first month, then moved to 1000mg 2x day. Your dose sounds okay according to other things I've read."

Camilla "I've been on 500 2times a day since late February. I've had no side effects at all, and have dropped 16 lbs since the first week of April. I am really pleased with the stuff!"

Rrl "So how do you know its working? Should I be doing BBT, too?"

Pcosupport "Rrl, that's great. I had side effects the first two weeks, then tapered off."

Pcosupport "Rrl, I didn't do BBTs but I did do a pregnancy test every two weeks. My doc recommended this since I wasn't doing anything to 'prevent' pregnancy. He was concerned about my taking the Metformin if I conceived."

Pcosupport "So, I took a HPT every two weeks while taking Metformin."

Pcosupport "I did ovulate twice while I was on Metformin."

Pcosupport "Rrl, I felt better, had the ovulation I mentioned, lost weight, didn't get the 'jitters' as often, and all of my bloodwork came back normal except the DHEAS. the insulin, testosterone, LH-FSH ratios were all normal."

Rrl "Thanks for the info--I don't remember what my levels are; I'm asking for a copy tomorrow."

Carlita "Are you still on the Met?"

Pcosupport "Well, ladies, I have to run. But, I've enjoyed this chat tonight. Please join us again next Sunday night. Same time, same place. And remember, if you have PCOS questions or would like more information on PCOSupport, feel free to email or call me anytime. The email address is: info@pcosupport.org"

Pcosupport "Goodnight everyone. :)"

Camilla "Night all!!"

Mary "Goodnight, Thanks Rochelle!"

Rrl "Goodnight all."