Anybody else like me?

KT1979 · 11-11-2002, 07:11 PM

Hi, I'm new here and looking for information. I'm wondering if any of you are very thin (like 90lbs or so) with little to no cosmetic symptoms? (By that I mean almost no excess hair, very mild acne, etc...) I'd love to hear your stories. I'm still awaiting my final diagnosis, but my doctor says my bloodwork is consistent with PCOS, so I'm looking for others like me to hear about their symptoms and experiences.

Mazlynn · 12-05-2002, 01:48 PM

When I was first diagnosed it was on the basis of LH/FSH levels when I was a teenager - at that point I was rather thin - you don't say 90 lbs at what hieght! but I was 115 lbs at 5'5" or so, consitantly thinner than the average height/wt ratio for my age. At that point my symptoms were irregular periods, acne (bad, but still within the normal teenage range) and some hair growth on the chin, although at that point it was mostly light. Now, 8 or so years later, I'm heavier, although that just puts me in the average range for my weight, acne better than as a teen (Thank god!) but still more than your average 24 yr old has, and while the chin hair is still not too bad, there's more and darker. So I'm still fairly mild comsetic problems, but somewhat increased from when I was first diagnosed. But still can relate to your situation. Hope that helps!

KT1979 · 12-05-2002, 05:42 PM

Thanks for replying; I posted this so long ago, that I thought no one would. Your symptoms do sound similar to mine, although I don't believe I really had any during my teenage years. My symptoms only started to show up about 2 years ago, when I was 21. Prior to that, I had normal 30 day cycles, and I obviously ovulated because I had my daughter when I was 19. I didn't even realize I had a problem until my husband and I tried to have another child. We've been trying for 2 years now, and I don't think I've had a single ovulation during that entire time, not even on Clomid. My cycles are now quite irregular, and I have noticed more hair growth in the last little while. Other than those two things, I still don't really show any symptoms though. I do have acne, more than a 23 year old should have, but it's nothing serious. I haven't put on any weight yet either. I'm 5' 3" at 90lbs., by the way. Anyway, thanks for replying; it's nice to know that there are others out there similar to me.

Katie · 12-11-2002, 02:10 PM

Hi I am 5'7" and weigh 110 lbs, I was dx by a laparoscopy because I kept complaining of stomach pains. They told me it was PCOS and i looked it up on the internet, my only cosmetic sympton is acne which is quite mild. I have always been very irregular af, 2 per year on average. Dr's dont really seem to take my concerns seriously because I dont fit the steriotype PCOS patient. I havnt ovulated since i have been charting my bbt ( about 6 months) and dr wont test me for IR because i am thin so he says i cant be IR, he also wont give me any Met which I would like to try because many cysters report regular af, ovulation, higher energy levels and pregnancy whilst taking it. I had my hormone levels tested today after nagging, and so I am waiting for the results now- patience is not my strong point. I am not hairy or apple shaped and no male pattern baldness!!

KT1979 · 12-11-2002, 06:17 PM

Thank you for replying; it's nice to know I'm not alone. I also have not ovulated since charting my BBT about a year ago. I suspect I haven't ovualted for much longer than that though. I find this extremely frustrating, because I used to ovulate regularly until I was 20 or 21. I had my daughter when I was 19, so she's living proof that I used to ovulate. I'm going back to my doctor next week because the Clomid had no effect whatsoever on me, and I'm hoping he'll let me try Metformin. He talked about it on my last visit, so hopefully he's still willing to follow through with it. I'm sorry to hear that your doctor doesn't take your concerns seriously. Just because we don't have most of the cosmetic symptoms, doesn't make the disorder any less serious for us, right? Especially when we want to get pregnant. Keep nagging and bugging to get the medical care you deserve, and if your doctor just doesn't want to listen to you, find one who will. Good luck!

phillygal · 12-15-2002, 10:48 PM

Hi, I definitely don't fit the stereotypical PCOS type either, so doctor's were hesitant to diagnose me. I am average weight and have always had very regular AF and O! I do have mild acne and cysts on my ovaries and my blood levels are off. I just started metformin today, so interested to see if if will help me conceive. We'll see...

munchkin · 12-17-2002, 12:52 PM

Well kind of..I'm very tiny, 5ft and was 85lbs, I've been hovering around 90 since my last injectalbes cycle. My OB refused to accept that I have PCOS but my RE is a different story. Classic ovaries, elevated androngens (sp) LH:FSH ratio...you name it I have it. I don't have the acne problem however I do seem to sprout hairs on my chin (I know gross) Something interesting I found out though is being underweight can cause a hormonal imbalance that causes all the same symptoms of PCOS without it actually being a correct diagnosis, that's what took so long for me to be diagnosed. Good luck to you!
Trudy

KT1979 · 12-17-2002, 02:47 PM

Some of you sure do sound alot like me, especially you, "munchkin". Thanks for letting me know I'm not alone. You're almost exactly the same size I am, except I'm a little taller than you are. My weight usually hovers in between 87-90lbs. I found it very interesting that you mentioned that being underweight can cause hormonal imbalances similar to PCOS, without it actually being PCOS. I see my doctor again in 2 days, and I will ask him about that. I'm quite certain that I do have PCOS, but it would make me happy if there was another explanation.

munchkin · 12-17-2002, 09:01 PM

KT1979 your right we do sound allot alike except for I don't have any children...lol trying hard though.

Ok so here's the deal I hope you don't mind but I calculated your BMI online with your height and weight and it came out to 15.97, now using the number 20 as a reference for a normal BMI as you see it's low. lol, when I was 85 my bmi was 16.6, now that I'm 90 (some days over but never under) pounds it's 17.5. I never gave much credit to peoples opnions about gaining weight would help me conceive because my RE never said anything about it being a problem. I found an online RE that has a Q & A board but he seems to think otherwise stating that the meds I use to induce ovulation would help with my hormones, being underweight with a low BMI carries a high M/C rate. The primary reason why I asked him about my weight is because I did have a m/c last month and was looking for answers, seemed like I was pulling for straws at the time but now that I think about it I didn't conceive until I gained 5 pounds and that was a year after starting fertility treatments with my RE and that's the only thing we changed. Now I have myself on a 3000 calorie diet along with allot of protien and amino acids to try and bulk up a bit, hope I don't go over board.. lol Anyway now I see your doing clomid, I've used it 1 time and 1 time only. It seems that clomid has anti estrogen effects that is supposed to cause your brain into thinking your Estrogen is low therefore your body is supposed to start producing more estrogen to cause follicles to grow. Well I'm not a specialist but I know in my case the reason why it didn't work for me is because I have low estrogen to begin with therefore my body is usto having low estrogen and I already have anti estrogen properties in my body. If you are able I would make sure that your doctor test's your E2 levels, if it comes back low I would think about some type of injectable medication to induce ovulation if you have prescription coverage or are able to afford them. (there's always ways to find them at a low price) I am lucky as we found out that DH's job has prescription coverage for the meds I use therefore I was added for next year, it doesn't help get the money back that we already spent but it does deffinately help being that we are still trying. Ok so i'm babbeling now I'm sorry I do that often. I hope you don't have PCOS and just an imbalance that is easy to correct, but make sure that your doctor does a fasting glocuse test, along with the glocuse challange test. Some people don't test IR until as late as the 5th hour so that's somethng to keep in mind. Ok well i must be going. bye for now.
Trudy

KT1979 · 12-18-2002, 07:36 PM

Thanks for all the information "munchkin". I will be sure to mention some of these things to my doctor tomorrow. I will also specifically request the bloodwork you mentioned. I suspect that my body is also used to having low estrogen, and I wouldn't be at all surprised if that's the reason the clomid doesn't work for me. I wish so much that we could afford the injectable meds, because I have a feeling that those are the only things that have any chance of working for me. We are, however, a one income family, and it would be impossible to fit into the budget. Again, thanks very much for the info.

Chrissy · 12-25-2002, 06:29 PM

I have been touched by other PCOSers stories. I want to wish you all the best in your health care and trying to conceive. I can relate to all you thin cysters who have had the battle over a diagnosis based on being thin! Good luck to you all!!