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Old 08-03-2004, 12:51 AM   #1
 
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Default Web site for PCOS sisters...

okay girls I have to spread the word..there is hope and there is medication for PCOS. There is a reason for hair loss and its not stress! stress shedding is minimal and temporary but if its coming out all the time and your seeing bald spots or areas that dont look thick as before its not stress...its PCOS and extensive blood work must be done to confirm it. PCOS is a hormone inbalance in the endrocrine system. Most often its in the pancreas where it is not producing or over producing insulin. Diet and exercise helps but many women and girls are put on either Metformin or Glucophage and work up slowly to 1000/2500mg a day. Its not a condition you want to be ignoring for over a long period of time it can cause the lining of your uterus to harden and that means the nest phase is cancer. A web site devoted to talk, questions, and helpful topics is ....Soulcysters.com..if anyone has question concerning the condition feel free to contact me..Im a PCOS cyster whose lost hair and knows the heartache and the emotional pain that comes with it. I also found a great book related to treatment of hair loss...I responded to one womans letter and listed it in my post...read it! (waves bye to all)
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Old 08-03-2004, 02:50 PM   #2
 
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Are you taking Metformin yourself, vampirecurls?

My sugar levels are actually normal (I was tested)... I don't think it would work for me like it'd work for a lot of Cysters who are IR, etc.
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Old 08-03-2004, 04:38 PM   #3
 
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A word of caution about metformin/glucophage......

Generally, I have no interest in medications, but a few years ago I'd switched endocrinologists and the new one was jumping for joy about putting me on metformin. I was at a low point, and feeling desperate about food cravings, weight, etc., and decided to try it out. Things were fine for 3 months, then I ended up flat out with lactic acidosis for 4 days. It was horrifying - couldn't eat, move without a massive effort, put together sentences, or focus my vision, along with some other lovely stuff. I had no pre-existing anything that should have brought it on.

And the best part - the doctor swore up and down that I must've had a bout with low blood sugar! She wouldn't admit it was the med, and actually wanted me to start taking it again. Since people die from lactic acidosis, I decided she was far from what I was looking for in a doctor and never returned to her.

The guy I go to now is fantastic - totally supportive of my alternative/natural healing methods. Oh, for what it's worth to anyone - the ONLY way I've every been able to get a handle on PCOS is through dietary changes, exercise, and vitamins/herbs.
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Old 08-03-2004, 04:45 PM   #4
 
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Quote:
Originally Posted by jabby
Oh, for what it's worth to anyone - the ONLY way I've every been able to get a handle on PCOS is through dietary changes, exercise, and vitamins/herbs.
Talk, talk! I'm especially interested to hear more about which vitamins and herbs you're finding helpful.

I already eat rather healthy and exercise regularly - despite what the ol' bod might lead everyone to believe!

Thanks for the warning on the Metformin, too... Scary!
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Old 08-10-2004, 10:59 PM   #5
 
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Default Metformin

Yes, I am on 1000mg daily of Metformin. I have rarely heard of any life threatening side effects from the drug. However some women do experience a drop in blood pressure if they attempt to increase the dosage to fast without slowly and gradually up'ing the dosage so that the body can effectively adjust to the increase. Plus there are accounts of women refusing to follow a strict diet of cutting out alchol, caffine and high intakes of sugar while on it. There are some limitations when taking it your doctor can best advise you one them. I tried to jump ahead thinking if I upped my dosage fast Id get ahead of the game and found myself having some pretty scary side effects from my blood sugar dropping at an alarming rate. Once I cut back and began to slowly introduce it to my system I was fine. Its worked for me and many others like me for a long time now. (read web site soulcysters.com) Its the same drug given to people who are diabetic and if PCOS is not treated many woman face a life time of heartache for you will become diabetic in the end and then face taking the drug for the rest of your life. The condition with drug therapy can be assisted by diet and exercise but alone the natural approach will not combat the condition for is hormonally based and needs to be rebalanced. Its like a clock that is off by a few hours, it needs to be reset to run correctly and give you the correct time. As the drug therapy begins to work and your body begins to rebalance itself many of the distressing conditions you may be experiencing such as male pattern baldness or thinning will correct its self. Many PCOS sisters include natural therapy along with our Met/Gluc. I take saw palmetto for its a natural DHT blocker and the number one ingredient in men's hair loss pills. I also take prenatal supplements to give my body an extra boost for the stress of hair loss alone can be hard to deal with and we loose vital nutrients when we "stress out". I cant begin to tell you all how vital the web site is to those of us who have once had a full lush head of curly hair only to suddenly find it thinning out at an alarming rate and no one professionally has anwsers. It saved my peace of mind to be able to talk to others like me and I found some great advice and suggestions...I encourage all to visit it.
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Old 08-11-2004, 02:13 PM   #6
 
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Vampirecurls: I totally agree that metformin is a good alternative for lots of women, and can be helpful for them. And I'm glad it's working so well for you. I'm just passing along my own personal experience with it, as a word of caution to anyone who hasn't tried it yet but is considering it. Armed with information is always a good way to go. Unfortunately, when I had my awful reaction to it, there were no precipitating circumstances. I didn't increase my dose, my doc didn't increase it, I wasn't drinking caffeine or eating much sugar, there was no drastic change in diet or exercise, and I wasn't combining it with any other meds or herbs at all. It was a full-on assault of lactic acidosis without much warning. The diagnosis was confirmed by another doctor, but the endo I had at the time wouldn't accept it.

I completely disagree about the natural approach. I've seen amazing things happen with dietary changes, exercise, and supplements. Like I said in my previous post, the only time in my life that I've ever had even close to normal cycles and body functioning has been when I was eating a very healthy diet, exercising regularly, and taking specific vitamin and herbal supplements. I'm not an exception here - I know dozens of women who have regulated their bodies in this way, and still dozens more who have reversed infertility in this way. It definitely takes longer for the changes to happen, as herbs and vitamins work more slowly than manufactured meds, but to me, it's a small price to pay for not adding chemicals to my system. But, I'll talk more about that in my next post.....

In my opinion, we each need to decide for ourselves what the best approach is and commit to it. When we're doing what we believe in and know is right for us, the results will follow.
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Old 08-11-2004, 02:34 PM   #7
 
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Sisa: I'm trying to remember exactly what I was taking, and what the dosage was for each thing. Back when everything was running like clockwork, that is. Right now is a different story for me.

I know I'm getting some of this wrong, and I'm not going to attemp the dosage levels because I'll royally mess that up, but here goes.....

vit E (natural, not synthetic, and a blend of mixed tocopherols)
vit C (time released, with rosehips)
vit B complex (with B12, since I'm a vegetarian)
GTF chromium
vitex (capsule form)
dong quai (capsule form)
red raspberry (tea form)

I think that's the lucky combo. Now, I'll be starting on this path again very soon. I want to do a cleanse for about 3 or 4 weeks, then I'll be finding my way back to a healthy way of eating, daily (or near daily) exercise, and vits and herbs. This time, I'll probably take the same vits, and then I'll do a tincture form of vitex and dong quai, and maybe false unicorn root, and I might skip the red raspberry tea. Then again, I may reevaluate everything once the cleanse is up and see what I seem to need most.

The thing that's been most important for me has been education myself about the different functions of the female system - which hormones do what, etc., and about the different methods of healing. Some people do best with a self-made plan like I have, others do better with acupuncture, some with homeopathic remedies, etc. When my finances are a bit better, I want to start acupuncture. But for now, I think it's most important for me to get back on track in general, then add in the outside pieces later on.

And it's a huge commitment of time and energy to buy fresh foods, prepare them in a healthy way, schedule exercise into your routine, remember to take the herbs, etc. etc. Once it all becomes second nature, it's hard to be without it.

Another web site to check out is www.pconatural.com. The site doesn't have too much new info on it these days, but the listserv is great and kind of keeps me going on the right path. Very cool stuff. I'll stop my monologue now!
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Old 09-27-2004, 02:21 AM   #8
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Default PCOS

Hi there,
Just stumbled onto this forum and am so glad to find others who also have the same problem that I do.

I've got somewhere around Type 2A/2B hair and have been experiencing hair loss for a few years now, my hair used to be double the volume I have at present. Went to see a Chinese doctor and later a Western doctor a couple years back and both told me I had PCOS. But from what I've read, excessive hair growth seems to be more of a symptom of this syndrome. Its been really frustrating to see my hair falling out and not being able to do much about it.

Went to see a skin doctor last year about the hair loss and he wasn't much help, he didn't seem to think I showed any signs of hair loss, was completely dismissive about trichologists and he was balding himself! Anyway he recommended using Minoxidil which I have but am not sure its helping all that much.

I have been exercising regularly and recently started taking folic acid as well after reading that it aids hair growth. Going to take a visit to soulcysters as well!
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Old 06-09-2005, 11:27 PM   #9
 
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Default Hair loss..

Ive taken Metformin for about year. I too had some pretty hard moments where I was so sick that it truly disrupted my life. Also I never thought Id get out of the bathroom. But I was determined to see this through and my doctor told me Id get pretty ill for a few weeks till my body accepted the drug..and he was right I got real sick. But now a year later I take it twice daily and I have no side effects unless I eat McDonalds and then look out make way I have to use the bathroom and you might as well give me a zip code for I aint leave for a long, long time..(giggles)
I have a strict diet for insulin resistantance and I take some herbal supplements such as saw palmetto for its a natural DHT blocker which is super! I also use Cayanne pepper in my shampoo which boosts the cleansing process of my scalp and promotes new growth. I agree with my nightly sister Vampirecurls (hey'ya there girl!) that the web site soulcysters is so awesome for us gals with thinning hair due to PCOS.
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Old 10-08-2005, 04:10 PM   #10
 
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Quote:
Originally Posted by jabby
Vampirecurls: I totally agree that metformin is a good alternative for lots of women, and can be helpful for them. And I'm glad it's working so well for you. I'm just passing along my own personal experience with it, as a word of caution to anyone who hasn't tried it yet but is considering it. Armed with information is always a good way to go. Unfortunately, when I had my awful reaction to it, there were no precipitating circumstances. I didn't increase my dose, my doc didn't increase it, I wasn't drinking caffeine or eating much sugar, there was no drastic change in diet or exercise, and I wasn't combining it with any other meds or herbs at all. It was a full-on assault of lactic acidosis without much warning. The diagnosis was confirmed by another doctor, but the endo I had at the time wouldn't accept it.

I completely disagree about the natural approach. I've seen amazing things happen with dietary changes, exercise, and supplements. Like I said in my previous post, the only time in my life that I've ever had even close to normal cycles and body functioning has been when I was eating a very healthy diet, exercising regularly, and taking specific vitamin and herbal supplements. I'm not an exception here - I know dozens of women who have regulated their bodies in this way, and still dozens more who have reversed infertility in this way. It definitely takes longer for the changes to happen, as herbs and vitamins work more slowly than manufactured meds, but to me, it's a small price to pay for not adding chemicals to my system. But, I'll talk more about that in my next post.....

In my opinion, we each need to decide for ourselves what the best approach is and commit to it. When we're doing what we believe in and know is right for us, the results will follow.

I agree 100%. I have begun to reverse my symptoms with diet, supplements, and exercise alone.

In fact, I think the opposite can be said of medications. They are a temporary bandaid for many people...not a permanent solution.
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Old 11-11-2005, 09:18 AM   #11
 
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Well so far I don't have to much hair loss from it..
does that come more as I grow older? I'm only 22 at this point.

but I was Dx'd with PCOS on Christmas Eve 03' .. I'm actually a 'Thin Cyster' ..

Just thought I'd pop in though, I'm on AvandaMet (avandia an metformin combo) and a very low carb diet. I do have blood sugar problems (hypoglycemia actually) so need the meds for both sugar an lowering of testerone.

I got pg a few months after starting Avandamet so it must have done something for my crazy body.

I'm also a 'SoulCyster' member.... you can find me over there under the name of 'sonshine_rae' .

~Rae~

ETA: forgot to mention I've noticed that some women can treat their pcos fairly well with diet/exercise and supplements.... but for others it takes more, I just happen to be one of those that the above wasn't enough I needed meds. Since PCOS is a syndrome everybody has different symptoms which sometimes are harder to treat then others. Sometimes our bodies are nice and respond well to treatments sometimes not.
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Old 05-03-2006, 08:51 PM   #12
 
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Default Pcos no treatment whatsoever

Hey, I was diagnosed with PCOS........and that's it. No suggestion of any treatment. Dr. put me on birth control, went wacky with my depression meds (could depression really be endocrine/blood sugar/hormone issues w/ PCOS?). I stopped the BC, and have gotten no other advice/direction from my doc.

I will look at the website suggested in earlier posts, but just in case, anyone in central Illinois know a doc they'd recommend for PCOS?
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Old 05-04-2006, 08:08 AM   #13
 
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I actually found out about Curly Girl and then this site from SoulCysters! I am one of those with PCOS who developed it a bit later than most. I had 3 kids by 21. I didn't start developing the symptoms until I was in my mid 30's, and then was told for years that I couldn't have PCOS because I obviously had no problem with fertility. My current dr is the one who diagnosed me.

I do have to take Met. 2000 mg/day for me. The one thing my dr stressed, though, is that the Met isn't just for blood sugar problems. It seems to help with the other aspects of the syndrome, including the most serious affect of PCOS, the potential cardiovascular problems.
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Old 06-04-2006, 05:54 PM   #14
 
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i don't have hair loss.. but i saw that this section of the community mentioned PCOS so i thought i'd check it out...I was diagnosed circa 17 yrs old (20 now).. i can't get my period w/ out being on medication. I don't really have any of the harsh side effects, i did have some acne trouble before i was diagnosed but after i was and a bunch of trial and error w/ the dermatologist, that seems to be resolved. I'm currently on Yasmin (birth control) and it gives me my period regularly, doesn't make me depressed like another brand of BC did. I was on metformin for a little, but it didn't do anything to help me get my period so my endocrynologist eventually gave up, no nasty side effects though. From what i hear it seems like a relatively low side effect drug though. Around what age were you when you first experienced hair loss? I'm hoping this side effect just doesn't happen to me. If you're treated early does your chance of hair loss decrease?
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Old 06-05-2006, 09:43 AM   #15
 
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Quote:
Originally Posted by saltavenger
Around what age were you when you first experienced hair loss? I'm hoping this side effect just doesn't happen to me. If you're treated early does your chance of hair loss decrease?
Hey!

I was about 19 when I first noticed it, but being the silly woman that I am I didn't get it checked out.

I'm not sure if the early treatment helps to decrease your chances of the hair loss... I sure hope it does in your case, though!

Remember, not all women with PCOS will have all of the symptoms. If that is you, more power to ya!
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Old 06-15-2006, 12:41 AM   #16
 
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That's part of the problem with PCOS, it's not very well defined and the PCOS you have could be completely different from mine.

Looking back, I had the symptoms of PCOS before my first period. I was "diagnosed" almost two months ago. (I say "diagnosed" because the doctor didn't do a single test before she put me on Metformin.)

The only symptom I may not have is thinning hair. But I don't know. My hair didn't start curling until I was 13 so my perception of thickness changed drastically at that point.

I'm just worried what the treatment/hormone changes will do to the texture of my hair!

Oh! Someone here (I'm too tired to check who) mentioned excess hair growth as a symptom of PCOS . . . that means body and/or facial hair. Because women with PCOS have excess "male" hormones, they tend to have a lot of body and facial hair while the hair on their head thins.
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Old 08-03-2006, 10:20 PM   #17
 
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Just out of curiosity, what should a doctor be looking for to diagnose PCOS?

My last blood test only showed that I had low carbon dixoide levels (I had 19... normal is 25) and a smidge high blood sugar (90.. which isn't BAD but with hereditary diabetes and being on the South Beach diet, that's not really where it should be). My doctor was "kind" enough to disclose this all to my mom even though I'm of age and not explain anything. However, at the time I went, I didn't realize it wasn't normal to feel like you're having knives slicing through your uterus when you're on your period. I thought that was just normal cramps. I also have ridiculously thick body hair and lots of facial hair, and I'm only 18! However, I never thought PCOS was possible for girls who have regular periods. Mine is regular almost to the hour.

I won't be able to get to a doctor until the fall when I go to college since I'll be traveling until then. However, what should my doctor be looking for?
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Old 08-06-2006, 03:06 AM   #18
 
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The one test to push for is a glucose tolerence test where they test your insulin levels as well as your blood sugar. Another test (that I think some doctors rely too heavily on) is an ultrasound to check for cysts. But you can have PCOS without the cysts, and you can have cysts without the PCOS.

Since the generally accepted medicinal treatment for PCOS is Metformin, I think the glucose tolerence test should be the diagnostic test. (whenever I hear the word diagnostic I think of it in terms of cars. )

But go to SoulCysters.com! I have never ventured over to their forum, but I have used the links to research PCOS. Some of it is heavy reading, some of it is short and overly technical, but most of it is worth the surfing.
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Old 08-11-2006, 02:55 AM   #19
 
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Each woman suffering from PCOS is never going to have the same symptoms as another. Some will vary while others seem so much alike. Metformin is the drug of choice for treatment by most and its the treatment of this drug that stops the deadliest symptom of all which is the lining of the uterus thickening and then turning cancerous. Think very strongly before you consider just opting out for the "natural" cure. Think of it in this perspective..Most supplements and herbs only change your enviorment temporarily, but they do not change you. They are like taking aspirins for a fever. Yes, the fever goes down but only for a short while, as soon as the aspirins wears off your fever is back. Why? its because the aspirin does not get to the root of the problem- the bacterial infection seeping in your body. What you need to eliminate that is an antibiotic. Metformin works in the same way. Supplements and herbs will not reverse you hormone inbalance for long and when you stop taking them your symptoms will return. And for PCOS suffers this is very stressful. Now there is no cure for PCOS but what we strive for is "control" and yes diet and exercise are good and so can supplements in addition to Metformin. But alone they are not targeting the source. Many suffering from PCOS have to deal with excessive weight gain and other side effects that can be damaging to one's self esteem so only when you have the condition and some of the more extreme side effects will you truly understand the heartache another might be going through. When you've tried it all, gone to every doctor and nothing seems to work Metformin offers hope. There are just too many who will stand behind its effectiveness to shed doubt. Before you decided to take endless pills day after day, this one for that, that for this, consider going to soulcysters.com and reading the reviews of those who like me take Metformin. I once had a beautiful full thick luxurious head of curls that was the envy of all but due to PCOS I hide and fear the sun for it will expose my scalp. I dont date anymore because men can be very cruel and I avoid doing things that would expose my thin hair and scalp such as swimming. Metformin not only brought back my period which had stopped all together it slowed down my shedding enough for my body to recover. I dont have my original head of curls but what I do have is my self respect and esteem back and that could not of come about by a mere herbal supplement.
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Old 10-11-2006, 09:32 PM   #20
 
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I know a couple of people with PCOS. In response to another poster, I believe that depression is associated with it. And unless something sounds very wrong (I've been recommended for unnecessary surgery because the doctor's brother is a surgeon...), *please* do what your doctor tells you!
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