PCOS
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Bill the diabetesdoc
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Thank you for starting this forum! What a great heart your have for the needs of others. So many women with PCOS suffer from insulin resistance, weight gain, and eventually type 2 diabetes.
I'd love to open potential discussion with a common rant among us "Cysters" -- weight!
I am a 9-year-verteran low-carber (50 grams or less per day). Low carb took off 150+ lbs and kept it off until recently. Now, even on low-carb the weight is coming back as are all the old "fun" PCOS problems like hirsutism and scalp hair loss.
I'd like to stay low-carb but have type 2 diabetes and not eating carbs is causing my blood sugars to crash a lot. I am interested in hearing how other women have had weight management success (with PCOS or type 2) on a low glycemic or other plan.
I am afraid to add carbs back into my diet because I gain weight rapidly above 50 grams per day. But clearly I am not eating enough to counter the effects of insulin overproduction. (I am on 2000 mg per day of Glucophage and it is not helping.)
Lahle (Comment this)
I can't even look at a carb without my BG going up! I have to stay within 10-15 carbs a meal or I go up horribly. My BG is not incontrol yet - I have been on the Spit for a little over a month and have lost 23 pounds but my BG's have not seen a huge difference. I am hanging in there but watch what I eat very carefully. So I am with you, Sister! (Comment this)
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(Comment this)It is because of PCOS gynecological symptoms that I ended up at an endo several years ago. I have been on metformin since that time.
I've never met the criteria for an official T2 diagnosis. My FBGs are impaired (slighly over 100) but never over 126 and my A1Cs were also creeping up (but have never been over 7).
At my appt. in January, my endo felt that things were certainly NOT moving in the right direction and I agreed. He suggested Byetta as a method of keeping the situation from getting any worse. It took 2 very detailed letters to my HMO to get them to cover. He specifically addressed my PCOS and the need to regulate my blood sugars and lose weight. Of course, the HMO first wanted me to use sulfonylureas which are likely to cause weight gain.
Long story short...I've been on Byetta since January. On my 3 month blood work, my AIC was down and my FBG was normal. I've lost nearly 40 lbs. Regarding the weight loss...my endo and I share the opinion that Byetta helps, but it is mainly my own dietary and exercise changes that have contributed. Also, I am very overweight so at least initially, it's been faily easy to lose. (Comment this)
I started byetta 2 weeks ago and my blood sugar is running under 100 all the time.
My concern - will the byetta cause me to make even more insulin?
Besides the inability to lose weight, the thinning of my hair bothers me a lot. I'm pinning a lot of hope on byetta! (Comment this)
I was diagnosed with PCOS in my early 20's so you certainly can have it and not know it unless you know the symptoms. There is no test for PCOS. I have several very small cysts on my ovaries - hence PCOS and I met all the criteria for diagnosis. I am now 47 and have had to be on birth control ever since diagnosis to regulate my periods. I was diagnosed with Type II in my mid-30's but I believe I had the symptoms in my late 20's. (Comment this)
I might suggest you and your daughter see a endo. I didn't get the proper diagnosis and help until I started seeing my endo. He is the one who explained a lot about the physical changes I had in relation to PCOS. However, I didn't help myself with the T2 (dx 2/06) but for your daughter it maybe able to help her in the long run. My daughter who will be 21 this summer is overweight and I believe to have PCOS. It trying to manage it with weight loss, especially with the diabetes in mine and my husband's family. I told her when she is ready for an endo let me know. I don't want her to wait but she is having denial about PCOS but I know if she can loose weight and cut out carbs that will help her until she is ready. Good luck
Toni (Comment this)
I also would suggest an endo for both you and your daughter.
Looking back, it is now clear that my PCOS symtoms began during my teen years. However, it was not until my late 20's that I was diagnosed. By then, my fertility was gone and other body systems were already being impacted. It was easy to ignore throughout my teens and early 20's because I had no acute problems. Weight was always an issue for me, but became more so during that time. I never had regular periods--and as a teenager and young adult, I surely didn't miss them! I wasn't about to go to a doctor to find a way to get something I didn't miss. By the time I sought treatment, my body had been too out of whack for too long to regain fertility without very invasive procedures.
It's a matter of utmost important for her general heatlh and her reproductive health if she wishes to have children in the future. (Comment this)
Back when I was first diagnosed with T2 in 1999, my endo said they were just starting to put their PCOS patients on Glucophage even though they were not testing out in the diabetes range. Today, they are putting a number of them on Glucophage and Byetta. I wish I had those two drugs in my arsenal all those many years ago. (Comment this)
I'm on Byetta, Glucophage and was just put back on Aldactone after a 5 year hiatus because of recurring PCOS symptoms like hirsutism and hair thinning. I have just gone through menopause but still have PCOS, confirmed by my lab tests. I was wondering for those on Byetta and Aldactone, if there was a suggested timing for when to take them. Is an hour apart enough? I used to take the Aldactone in the morning.
Anyone else on Aldactone for hirsutism here? (Comment this)
As I mentioned on the Byetta Blog, I moved my Aldactone and other meds to lunch and late night snack, I've been taking Aldactone for 10+ years, and it's helped with hirsuitism and other side effects. I've used electrolysis for years, but once I started on Aldactone, I found I only needed to go twice a year. The recent weight loss with Byetta is beginning to significantly lower my testosterone level, too, which helps reduce the side effects of PCOS. (Comment this)
I really appreciate your responding.
Aldactone worked great for me for over 10 years too, but when I went on Glucophage, my gyno insisted that I wait and see if that would take care of the PCOS hirsutism. It didn't. I had laser treatments to deal with the facial hair, but when my hair started to thin, I just went through menopause, I figured I'd get back on it and give it a try. My labs showed that my testosterone was in normal limits, but I am just very sensitive to it. My last lab also showed that despite menopause, I still have PCOS because my DHEA levels were high. That's great that you only need to go twice a year for electrolysis. I went for years, but really like the laser treatment much better. (Comment this)
There are some effective treatments for PCOS which can help resolve a number of the problems you're experiencing. When I was first diagnosed at age 18, the endocrinologist put me on the birth control pill and a thyroid medication. For the first time in my life, I actually got my period and it was regular. I immediately started to lose weight, the weight I could never seem to shed although I never overate, was an athlete, etc. Those two meds kept me in good shape for about 15 years. Now, I take Aldactone which helps to lower my level of testosterone and prevents the problems with acne, excess hair....but not weight. Byetta and Glucophage are doing the trick for weight control so my weight is in the normal range, my blood sugars are in the low 90s when fasting, low 80s two hours after meals, and I have none of the frustrating symptons of PCOS.
There are medications out there to help you. You shouldn't have to go through all you're experiencing now. (Comment this)
I see an endo and started seeing a nutritionist in July. My Nutritionist recommends I eat 62 g Carbs, 16 g Fat, and 25g protein at every meal. So far since starting this on 7/18/06 I have lost 12 lbs. This was a huge change from my low carb or even regular diet eating habits. And I found that I am less hungry throughout the day. I just started Byetta on 8/3 and am struggling to even eat as much as they've recommended. My weight started at 276/ current 264 so your needs may be different. In the past I lost 60 lbs doing the low carb diet (lost to below 200lbs, but gained all that back and more when I started eatting more carbs.) I found that while doing the low carb I was exhausted all the time and my hair fell out, and just said I wasn't going to put myself through that anymore.
Hope this helps. Summer in TN
By the way, I am also taking meds for my PCOS and TYpe 2 DM. Metformin 1000mg am and 1500mg pm, 100mg Spironolactone BID, Yaz, and 5mcg Byetta. (Comment this)
I was finally diagnosed with PCOS and just recently Type 2 Diabetes. (I am in my late 20s.) I have been connected with a great endocrinologist and nutritionist who just started me on a healthier diet and Byetta. It's only been a couple of weeks since the new nutrition, but I have lost weight and am very hopeful.
I so wish I had gotten the right information in my teens and I would have spent the last 10 years overweight, having poor body image, and building to type 2 diabetes. There are so many health risks if the PCOS isn't treated. Not to mention the infertility. Now my doctor says if I can lose the weight The may be able to safely do fertility treatments and I might be able to get pregnant.
Just don't take no for an answer with your doctors and get her the help she needs.
My Dr. Said with the PCOS you can't do it with Diet and Exercise alone and that everthing feeds on itself. The more you weight the more Insulin Resistant you are to more you'll weigh. Not to mention the increased testosterone and all the other side effects.
Written by Summer in TN. Taking meds for my PCOS and TYpe 2 DM. Metformin 1000mg am and 1500mg pm, 100mg Spironolactone BID, Yaz, and 5mcg Byetta. (Comment this)
"Anyone else on Aldactone for hirsutism here?"
I am on Aldactone/ Spironolactone 100mg BID, it helps with the chest, but not with the face for me.
By the way, I am also taking meds for my PCOS and TYpe 2 DM. Metformin 1000mg am and 1500mg pm, 100mg Spironolactone BID, Yaz, and 5mcg Byetta. (Comment this)
Rezulin was a miracle for me, but they pulled it. Metformin/aka Glucophage helped in the beginning, but the dose gets higher and it has less help.
Yasmin is a miracle, but not covered by insc <grrr> and few samples to be found these days.
Lost 50lbs on Atkins, but then 20g/carbs/day didn't even work at 1200 cals... just 'maintained' for 18 mos or so. Then started realizing how cranky/tired/angry I was all the time. Upped the carbs by just whole grains/fruit adn gained back 10lbs--enough to scare me. 50 more to loose. :(
Started Byetta three weeks ago, seems to be helping the fasting blood sugars/dawn effect. Definitely helping the appetite. Some weight loss, but vuuuuury slow. (1.5 lb/week?) not the 'miracle' of some others. BG's are GREAT though.
Happy to help anyone I can... became a bit of an armchair expert, and have worked with some excellent Docs.
Met & Yasmin are amazing... byetta could be the final link, but too soon to tell. (Comment this)
I'm already on 2000 mg. of Metformin and Yasmin for the PCOS. Too, am on various meds longterm for persistent acne (since teen years)...two different antibiotics (one oral and the other topical) and Finacea. The Yasmin helps with my skin, too. However, I *might* be interested in some other treatment for my skin other than antibiotics. I've been on them pretty much consistently since I was thirteen. Tried a couple of bouts with Accutane, but it didn't work for me. Have some concerns about possible antibiotic resistance, but *every single time* I go off of the antibiotics, I have *huge* flares of cystic acne...very, very troubling and invasive in my life. *Might* want to try some Spironolactone or another approach to the acne.
You mention that you have a great endocrinologist and nutritionist. I am interested in learning the names and locations of both.
Thank you,
Jen (Comment this)
Your experience sounds exactly like mine! I was on the induction phase of Atkins for 5 years and had lost 80 pounds, and then it just stopped working! I slowly gained about 25 pounds back, so I tried and tried for the next 2 years to eat NO carbs, and was at one point down to 300 calories a day for about 3 months, and doing 3 hours of aerobics a day...just to show my snotty unhelpful doc just how hopeless I had become at losing weight, even with extreme dieting and exercise. He just said "try harder!!!" I finally became so depressed that I gave up because friends convinced me that Atkins destroys your metabolism. (also the book The Swartzbine Principle 2 says this, and it is written by an endo who seems to know her stuff)
Later I got a weird lung illness and they put me on Prednisone and I gained 50 pounds in 4 months! I was on Atkins the whole time too! I am now going bald, and had once had beautiful long blonde hair. My skin is covered with warty things and gross bumps, and I have acne and super bad hirsutism. After I had lost the 80 pounds I was soooo happy and wa myself agin, but the magic ended. (I am 5'9 and back up to 265) I almost never leave my house anymore. I feel like my life is over and have been this way for the past 2 years. I am 45.
Have you tried the Byetta? I just want to know if it really helps...is the weight loss from lack of eating, or does it actually change something in the metabolic process with the IR? I hardly eat as it is, so I'm afraid it will be more of the same. I don't know when your letter was originally posted, and hope you can answer my questions. Thanks so much! Andrea
(Comment this)
I have PCOS, only found out b/c I oculdn't get pregnant... although signs were clear no one bothered to tell me... anyways... Did the pregnancy thing with Metformin and now have a healthy boy of 15 months. Good luck with that :) (Comment this)
I was dx in my 20s with PCOS. At 40 I had a complete hysterectomy (including both ovaries)due to having a period for a full year. Silly me - thought that would solve the problem of PCOS. Not quite. At the age of 52, i'm still dealing with hirsutism, increasing weight, acne, increase in testosterone levels. Was dx with Type 2 diabetes 5 years ago.
Started Byetta back in July but came off of it due to the nausea and heartburn even though bs were really good - between 80 and 110 consistantly and A1C dropped from 7.4 to 6.1 in 6 weeks. Tried Januvia and Symlin and bs started climing to over 200. Started back on Byetta a couple of weeks ago at the 10 level and having no side effects (strange) but not seeing as good results as before headed down the road of adding metformin in a couple of weeks if the numbers do not come down.
As far as weight loss is concerned, I did have some luck with Symlin - lost 12 lbs in 6 weeks but I have not had any luck with Byetta or Januvia. Very disappointing.
Taking 120mg Sprinolactone 2x a day for the facial hair growth and it has helped - hasn't stopped it completely but it has diminished it.
I am not taking HR since I was not going through any of the menapausal symptoms after surgery - guess I was one of the lucky ones.
I wish you well. Let me know what issues you are experiencing.
(Comment this)
How long did it take you to get pregnant once you started taking the Metformin? My endo put me on it a while back and just increased the dose as he noticed my testosterone levels were responding well to the lower dose. He put me on the XR version - and it seems I'm having nausea every morning now. But I take my night dose with food, so I don't know why 8 hours later I'm feeling sick. I'm secretly hoping it's morning sickness, LOL! Did you ever have this problem?
My sister's friend got pregnant on Metformin after only 6 weeks. I'm sure that's not how it works for everyone.
Thanks! (Comment this)
Thanks, you can email me or post responses here! (Comment this)
I think there is research going on to find solutions but it often takes a lot of time to find them. For a long time they thought that PCOS was a gynacological problem. That is why the name. Since then they have realized it is a much bigger problem and has to do with insulin. Medications like Metformin often help a lot. A lot of people can not tolerate it though. Mostly they treat the symptoms. A low carb diet is very helpful. No carb in not really good as our bodies get a lot from Carbs also. Energy is one of them. Do all you can to stay as healthy as possible with diet and exercise. Some feel that going as natural as possible with getting organic foods really helps also. Your risks of other illness is greater with PCOS. I've become diabetic in the past 5 years or so. Good Luck with finding help for what you have going on. A good endo can help alot. (Comment this)
Metformin helps with the insulin resistance often connected with PCOS. If you can take it it will help your insulin work more efficently. I don't know much about helping with your kidneys functioning but if it keeps the insulin working better then it will help in many areas. Low carb diet is also very helpful with regular periods. Diet, exercise and the metformin can help you to stay healthier. PCOS has a high risk of diabetes and diabetes can cause a lot of problems with kidneys and other problems. Best to keep that off as long as possible. Make sure you have doctors that you are comfortable with to discuss what all is going on. Take care and good luck with all of this. (Comment this)