gavman
03-29-2004, 02:12 AM
To anyone who has been diagnosed with PCOS or has information regarding that diagnosis I would like to know exactly how that diagnosis is determined. I've been reading up on it and am confused because the symptoms seem to vary so much. For example some may have elevated hormone levels, some may not. Some may have ovarian cysts, others may not. Some people may or may not have excess hair, male pattern baldness, weight gain, acne, etc... If some people have some of the symptoms and not others, or they vary from one person to the next, how do the doctors determine if you actually have PCOS? Why can some individuals have elevated hormone levels (or any other main symptom of this syndrome) but not have PCOS while others may not have elevated hormone levels yet they do have PCOS? It just seems so vague. Like any doctor can just tell you that you have PCOS. Are there specific tests I should request besides blood work to check testosterone levels, LH, insulin resistance, and ultrasound? What will they show? How do doctors determine that it is PCOS and not something else? Sorry for so many questions, it just seems to me to be diagnosed based on so many different variables. Thanks for any information you can give me.
Cris
Cris
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Blastoff9600
03-29-2004, 10:21 AM
Well for me all my hormone tests except one was normal. My DHEA level wa outragoulsy high for someone in my age group. That can be a indicator of PCOS. I have one area in which I have hair lose,I also have weight gain even though I shouldnt,and facial hair. Also for a little while I was having some funky cycles. That is how I was DXed for PCOS. I dont knwo if I have cysts or not since my dr didnt bother to do an u/s.
If you think you might have it then try to get your regular dr to give you a referral to a Endocrinologist. They actually are better are dxing PCOS and the ways to treat it.
If you think you might have it then try to get your regular dr to give you a referral to a Endocrinologist. They actually are better are dxing PCOS and the ways to treat it.
gavman
03-29-2004, 11:51 AM
Blastoff9600,
Thanks for the info. It's actually my 12 yr old daughter that they think may have this. She has been to two different endocrinologists due to beginning puberty at age 5. Poor girl. Her hormones just went crazy. She was tested for adrenal hyperplasia which I read many people with PCOS have also been tested for. She has a lot of the symptoms-elevated testosterone, weight gain, acne, stopped menstrating 7 months ago (she began having periods at age 10 and had been having them for about a year) no excess facial hair, but very hairy legs/arms to name a few. I'm frustrated because I don't understand why she wasn't tested for this after they determined that she did not have adreanal hyperplasia. Jeez, just five minutes of research on the internet and I could see that she has many of the symptoms. Maybe they did not test her due to her age, but if she has all so many of the indicators then why not test her? We've been struggling with this for 7 years now (four doctors)and still have no diagnosis. Very frustrating.
Again, thank you for the information. Anything I can learn about this syndrome will be helpful. We have an appointment to see her pediatrician in a couple of weeks. We began seeing her in January. She is the one who asked me if she had ever been tested for PCOS.
Cris
Thanks for the info. It's actually my 12 yr old daughter that they think may have this. She has been to two different endocrinologists due to beginning puberty at age 5. Poor girl. Her hormones just went crazy. She was tested for adrenal hyperplasia which I read many people with PCOS have also been tested for. She has a lot of the symptoms-elevated testosterone, weight gain, acne, stopped menstrating 7 months ago (she began having periods at age 10 and had been having them for about a year) no excess facial hair, but very hairy legs/arms to name a few. I'm frustrated because I don't understand why she wasn't tested for this after they determined that she did not have adreanal hyperplasia. Jeez, just five minutes of research on the internet and I could see that she has many of the symptoms. Maybe they did not test her due to her age, but if she has all so many of the indicators then why not test her? We've been struggling with this for 7 years now (four doctors)and still have no diagnosis. Very frustrating.
Again, thank you for the information. Anything I can learn about this syndrome will be helpful. We have an appointment to see her pediatrician in a couple of weeks. We began seeing her in January. She is the one who asked me if she had ever been tested for PCOS.
Cris
Blastoff9600
03-29-2004, 12:21 PM
Oh that would be very frustrating. But I can also see how some doctors wouldnt think of it for one so young. I know with me It was until last year that is was Dxed with PCOS and I was 28. Once I got to thiking aobut it though I had the signs for about a year prior to that dx.
It would be rare for one so young to have it but with everything else it should have been thought of.
I know how it goes when one has to go through several drs. I have had more than my fair share thanks to infertility.
There is a great study by Marcia Herman-Giddens that might interest you. That is if you havent read it already.
It would be rare for one so young to have it but with everything else it should have been thought of.
I know how it goes when one has to go through several drs. I have had more than my fair share thanks to infertility.
There is a great study by Marcia Herman-Giddens that might interest you. That is if you havent read it already.
gavman
03-29-2004, 04:20 PM
Blastoff9600,
Yes, I would be very interested in reading the study you mentioned. Where could I find it? You also mentioned that your DHEA levels where high for someone your age and that is why you were diagnosed. I pulled copies of my daughters lab results to see if they checked that on her. Her DHEA level was 6.4 and it says it should be between 0.2-3.5. So her levels are quite high there as well. Her Androstenedione was 1.88, should be between 0.25-0.80, and Testosterone was 28 on one lab test and 42 on another, but should be less than 25. Until my pediatrician mentioned this syndrome, I never would have even known to look ant these levels. This is really concerning me! I would really like to read that study.
Thanks
Cris
Yes, I would be very interested in reading the study you mentioned. Where could I find it? You also mentioned that your DHEA levels where high for someone your age and that is why you were diagnosed. I pulled copies of my daughters lab results to see if they checked that on her. Her DHEA level was 6.4 and it says it should be between 0.2-3.5. So her levels are quite high there as well. Her Androstenedione was 1.88, should be between 0.25-0.80, and Testosterone was 28 on one lab test and 42 on another, but should be less than 25. Until my pediatrician mentioned this syndrome, I never would have even known to look ant these levels. This is really concerning me! I would really like to read that study.
Thanks
Cris
Blastoff9600
03-29-2004, 05:42 PM
A search either online,at your local library,or even ask your daughter's dr about it and you should be able to get the info on that study.Dont beat yourself up over missing those test results. I let things go for over a year before I with much pushing from a friend get tested. Then I went nuts searching for info online about PCOS. My dr told me my results but I had no clue what it meant until I did start researching.
Ok I dug through my tests
DHEA was 17.1 and normal range for my age group then was 1.1 - 7.1
Everything else is right in the normal ranges,matter of fact most are smack in the middle of the normal ranges.
Ok I dug through my tests
DHEA was 17.1 and normal range for my age group then was 1.1 - 7.1
Everything else is right in the normal ranges,matter of fact most are smack in the middle of the normal ranges.
QtrHrsMomma
03-29-2004, 06:51 PM
I just want to add that I was diagnosed with PCOS and had ovarian surgery (wedge removal back then) at also 12 years old. It was horrifying to me. The docs talked of doing a partial ovio-hysterectomy cause there were SO many cysts. My mom said absolutely not! She said if I had to go thru it as an adult I could make that VERY important decision.
I had surgery again almost exactly a year after on the same ovary. I was put on BCP's to control it and have had many ultrasounds since then but the docs say the cysts I have are 'normal'.
I am now 26 and have 2 wonderful little boys. :) I am glad my mom said no to the partial ovio-hysterctomy.
I had surgery again almost exactly a year after on the same ovary. I was put on BCP's to control it and have had many ultrasounds since then but the docs say the cysts I have are 'normal'.
I am now 26 and have 2 wonderful little boys. :) I am glad my mom said no to the partial ovio-hysterctomy.
purpleprincess
03-29-2004, 06:56 PM
Hi there!
I am 19 and was diagosed with PCOS on the 19th of dec. 2003. I was diagnosed because of missing periods, excessive hair growth and the hormone levels were out of whack. I know some have the insulin resistance and I have not been told I have that. I do know that this syndrome can vary in symtoms. I hope that if she is diagnosed with this it can be properly treated and controlled. Best of luck to you and your daughter!
Kristina
I am 19 and was diagosed with PCOS on the 19th of dec. 2003. I was diagnosed because of missing periods, excessive hair growth and the hormone levels were out of whack. I know some have the insulin resistance and I have not been told I have that. I do know that this syndrome can vary in symtoms. I hope that if she is diagnosed with this it can be properly treated and controlled. Best of luck to you and your daughter!
Kristina
gavman
03-30-2004, 01:43 AM
QtrHrsMomma,
Wow, I'm sorry you had to go through that at such a young age. I'm relieved to hear that you were able to have your boys. I've read about the surgery and also have concerns about the infertility issue. I guess her being diagnosed at such a young age is not unheard of.
Kristina,thanks for your kind words. I hope for the same thing.
Does anyone know if there is anything specific to diagnose this syndrome? What is it that makes a doctor say, "you have PCOS". Once diagnosed, do you have it until menopause? I've read that many women are put on BC pills to lessen the symptoms. Is that effective? Looks like I need to keep researching this! Thanks for all your help and information.
Cris
Wow, I'm sorry you had to go through that at such a young age. I'm relieved to hear that you were able to have your boys. I've read about the surgery and also have concerns about the infertility issue. I guess her being diagnosed at such a young age is not unheard of.
Kristina,thanks for your kind words. I hope for the same thing.
Does anyone know if there is anything specific to diagnose this syndrome? What is it that makes a doctor say, "you have PCOS". Once diagnosed, do you have it until menopause? I've read that many women are put on BC pills to lessen the symptoms. Is that effective? Looks like I need to keep researching this! Thanks for all your help and information.
Cris
QtrHrsMomma
03-30-2004, 01:59 AM
Well for me I went in with SEVERE pains that they assumed was appendicitis. I started my periods at 10 also and would often have it for 21 days.... then nothing for a while ..... super dooper heavy, and immensley painful.
I went to ER - they said at first it was stoamch flu :rolleyes , sent me home and i was right back in in the morning, appendicitis was ruled out and had surgery by 1 pm. Docs did a rectal check and then an ultrasound and found my right ovary to be hugely swollen. The docs removed a wedge and took out 5 large cysts and so many small ones they weren't countable.
I also have many other clear signs of PCOS - weight gain, hairyness, skin tags, reocurrant cysts, and more. I also don't have some other symptoms. Thats the thing with PCOS as well - not everyone has the same symptoms.
I was put on Triphasil 28's and remained on those till my husband and I decided to try and get pregnant. I went off the bcp's and was pregnant in about a year. I had a difficult pregnancy but I am not sure if some of the things I went thru can be attributed to PCOS. Its possible.
My second pregnancy I got pregnant in about 9 months. So it is possible!
I wish you luck in finding all the info you need.
Tammy
I went to ER - they said at first it was stoamch flu :rolleyes , sent me home and i was right back in in the morning, appendicitis was ruled out and had surgery by 1 pm. Docs did a rectal check and then an ultrasound and found my right ovary to be hugely swollen. The docs removed a wedge and took out 5 large cysts and so many small ones they weren't countable.
I also have many other clear signs of PCOS - weight gain, hairyness, skin tags, reocurrant cysts, and more. I also don't have some other symptoms. Thats the thing with PCOS as well - not everyone has the same symptoms.
I was put on Triphasil 28's and remained on those till my husband and I decided to try and get pregnant. I went off the bcp's and was pregnant in about a year. I had a difficult pregnancy but I am not sure if some of the things I went thru can be attributed to PCOS. Its possible.
My second pregnancy I got pregnant in about 9 months. So it is possible!
I wish you luck in finding all the info you need.
Tammy
csoar2004
03-30-2004, 10:52 AM
Does anyone know if there is anything specific to diagnose this syndrome? What is it that makes a doctor say, "you have PCOS". Once diagnosed, do you have it until menopause? I've read that many women are put on BC pills to lessen the symptoms. Is that effective? Looks like I need to keep researching this! Thanks for all your help and information.
CrisSince there is such variety in the presentation of PCOS symptoms, there is disagreement in the medical field on when to declare a particular set of symptoms 'PCOS.' This website from the University of Chicago might help you: http://centerforpcos.bsd.uchicago.edu/Defining_PCOS/defining_pcos.html
In terms of treatment, there's a variety of options there, too, but current thinking is turning more and more to the underlying cause of PCOS - insulin resistance. Therefore, diet becomes very important: http://oak.cats.ohiou.edu/~cp391990/carb.html Some info on insulin resistance can be found at these sites: http://syndromex.stanford.edu/InsulinResistance.htm
http://diabetes.niddk.nih.gov/dm/pubs/insulinresistance/
I hope this information helps and that your daughter's health improves soon. ;)
best wishes,
charli
highest wt: 233
203/146/146 on the Fat Flush Plan for life and perky, veddy veddy perky :D
CrisSince there is such variety in the presentation of PCOS symptoms, there is disagreement in the medical field on when to declare a particular set of symptoms 'PCOS.' This website from the University of Chicago might help you: http://centerforpcos.bsd.uchicago.edu/Defining_PCOS/defining_pcos.html
In terms of treatment, there's a variety of options there, too, but current thinking is turning more and more to the underlying cause of PCOS - insulin resistance. Therefore, diet becomes very important: http://oak.cats.ohiou.edu/~cp391990/carb.html Some info on insulin resistance can be found at these sites: http://syndromex.stanford.edu/InsulinResistance.htm
http://diabetes.niddk.nih.gov/dm/pubs/insulinresistance/
I hope this information helps and that your daughter's health improves soon. ;)
best wishes,
charli
highest wt: 233
203/146/146 on the Fat Flush Plan for life and perky, veddy veddy perky :D
gavman
03-30-2004, 11:57 AM
Thanks Tammy and Charli!
I really appreciate all the information. So far, she hasn't had particularly painful periods. But in my research last night, I was surprised to read about skin tags being a symptom. She has lots of those that have just developed over the last couple of years. Actually, the only symptoms she doesn't have are painful periods, excessive hair (althought her legs are quite hairy, but she does shave them now), hypertension, and as far an the enlarged/cystic ovaries and cysts go, we will not know until they do an ultrasound. Hopefully, infertility is not one of her symptoms either.
Thanks again for your help!
Cris
I really appreciate all the information. So far, she hasn't had particularly painful periods. But in my research last night, I was surprised to read about skin tags being a symptom. She has lots of those that have just developed over the last couple of years. Actually, the only symptoms she doesn't have are painful periods, excessive hair (althought her legs are quite hairy, but she does shave them now), hypertension, and as far an the enlarged/cystic ovaries and cysts go, we will not know until they do an ultrasound. Hopefully, infertility is not one of her symptoms either.
Thanks again for your help!
Cris