I am really confused and quite upset about all the mudd I have been dragged through with this syndrome..yesterday I had another appointment with my Endo for my test results. He said I am not insulin resistant (yet I have and he confirmed me having Acanthosis Nigeria, he cant give me an answer about why I have it), that my hormones were within the "normal" range except my estrogen was a little low, my thryroid is fine, and all the other things and bloodwork he took was normal on his scale. What I wanna know is what actually conforms you to the ideal of having PCOS? I have had sudden hursitism everywhere within this past year badly which I've never had before, acne like no othe..r again I never had before, hairloss that is by the handfuls and no AF for 3 years unless induced. He never bothered to give me an internal ultrasound to look for cysts and I asked him why am I having all these problems if my bloodwork is "normal" (I dont think doctors scales are right)..he told me that it could be one of two things; Either it's just stress and it caused my hormones to be out of whack (which pissed me off to hear, since this happened BEFORE the stress) or my body is still trying to regulate itself after the Depo shot and that Depo is also known to cause hursitism. Well I have been off Depo for almost 4 years now! He said a small percentage of women they never can fully figure out why they have what they do even with tests..well doesnt that make me feel great! Now does this mean I don't have PCOS? I am utterly confused and at a loss of where to go from here..
when i first had my workup for pcos 2 years ago i began researching immediately. like you, i was frustrated and confused. there's so much information out there and a lot of it can be somewhat conflicting. to make it even more confusing, doctors don't seem to all be on the same page when it comes to making a pcos diagnosis. they just can't reach a general consensus on what the criteria are! (ugh! frustrating.) i guess i was "lucky" b/c although my labs looked mostly ok, my ovaries were covered in cysts. some doctors considers the cysts to be the criteria, while others looks for 3 or more of the common symptoms.
i would continue to pursue treatment and further diagnosis. if you aren't happy with your current doctor, shop around.
in my case, i was dx'ed and treated by my gyn in collaboration with my internist. my testosterone was slightly elevated and my glucose tolerance tests were on the "high" side of normal. they decided to put me on met and spiro in addition to continuing my ocp's.
one of the first websites i came across while researching was this one: http://www.inciid.org/faq.php?cat=in...ity101&id=2#76 it was pretty good and i liked their section that explained the lab results in detail.
i know it's frustrating but hang in there. just keep persuing things until you are satisfied with your medical care.
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Last edited by isenephthys; 01-08-2006 at 08:41 PM.
That was exactly my experience with my regular Dr. My blood work is in the normal range. When I went to an Endo she was able to look at the big picture and see how each hormone was interacting with the other.
Since this is what your Endo told you and they are soppose to be the expert. You can get a second opinion.
Even though the Depo shot was 4 years ago, you were only 16 at the time and you may have done some damage. The womans body is tricky and Dr. know "----" about our bodies.
What you are going through is no doubt frustrating. Just continue your search for answers, in the mean time focus on how to get balanced and healthy, not why your not.
Thank you girls for your support and responses..I don't know what to do from here..my whole family thinks I am over dramatizing everything and the doctors keep saying "everything looks normal"..should I request to have an internal ultrasound done? I cant see why this Endo didnt have one done on me! He kept saying "I dont think you are insulin resistant", no matter how many times I asked him he never gave me a straight out "NO" it was always "I think"..is there a way I can actually obtain a copy of my test results? I know doctors try their hardest to keep these things a big secret from the actual patients because it isnt our personal business or anything... I really wanna get a second opinion but I feel like giving up because I have been living at the doctors and bounced around so much.. I see him in 3 months, but that is too far away, my insurance will be up soon.
nikki, under the hippa laws you do have a RIGHT to obtain a copy of your medical records, which include all dr's progress notes and lab reports. some dr's offices might charge a fee for this, but to me it's worth it just to have the information. i like to keep detailed records just for my own sake b/c i'm anal like that and also so that i can take it with me to a new doctor.
i know what you are going through is frustrating, especially when you get all kinds of "well, maybes" and "it looks as ifs." chasing your tail is never fun and i know how stressful finishing up school can be. but don't give up!
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It makes me so angry to hear too many stories the same as mine, where doctors are not doing tests!
Well they aren't going to know what hit themn when I go in, cos i'll scream the place down until they actually do the tests they were supposed to do in the 1st place (So I've now found out)
I suggest you do the same, get in there kicking and screaming and dont leave until you have positive answers!
The other day I went in I was demanding with my Endo and he kinda just laughed when I started getting really serious about my insulin resistance test, I remember now he told me it was a 9..the normal range is only up to 10..that means I am borderline doesnt it? I cant call because it is Sunday, but tomorrow I am going to call up and talk to someone about all this..it is getting absolutley rediculous..they like to just tell you nothing is wrong like they cant be bothered.
I'm sorry you're being treated so badly StrongerNow
TBH I think half the problem is that hardly anyone knows about this condition, so don't know what theyre meant to be testing for or what to do with the results, a little more awareness and publicity might not go amiss here! (It might shame the doctors into finding out about it!)
A good place to start would be to write to women's magazines, get it highlighted, more and more women would start to go to their doctors whether they have PCOS or not, which would lead to the doctors having to discover more of what's what themselves!
nikki, i agree w/powie. a lot of medical professionals are ignorant about the condition themselves. it's a shame your endo is being such an @$$. and yes, if you are so close to the cutoff range you could be considered "borderline" insulin resistant. that is part of the reason that i like to get copies of my test results; so i can show my md's the *trends* in my bloodwork. if the numbers keep going up (or down, or wherever) then they can get a better idea of how to treat it.
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Those doctors had me feeling that I was a hyperchondriac when I didn't fit in with their tests and they really did not know enough about PCOS. I had labs and ultrasounds and they could not tell that there was something wrong because it was within the normal range. My ovaries were a little large that was all. But I had all the symptoms of PCOS and I didn't know what else. Finally I found the right doctor and was having so much pain and bleeding that they scheduled a laparoscopy. I felt totally vindicated after years of suffering. But then I was aggravated that nobody listened to me in the first place. So if your doctor is saying you don't have PCOS because you are not insulin resistant, you should switch because your doc doesn't know enough about PCOS. There is about five types of PCOS now.
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my whole family thinks I am over dramatizing everything and the doctors keep saying "everything looks normal"..should I request to have an internal ultrasound done? I cant see why this Endo didnt have one done on me! He kept saying "I dont think you are insulin resistant", no matter how many times I asked him he never gave me a straight out "NO" it was always "I think"..is there a way I can actually obtain a copy of my test results? I know doctors try their hardest to keep these things a big secret from the actual patients because it isnt our personal business or anything... I really wanna get a second opinion but I feel like giving up because I have been living at the doctors and bounced around so much.. I see him in 3 months, but that is too far away, my insurance will be up soon.
Nikki you are not over dramatizing things you are taking a concerned proactive approuch to your health.
More than likely I would look for a different doctor. Get a copy of your labs and take them to a new doctor. Do you have a good gyn? My gyn is the one who had the internal ultrasound done. And she and my endo are aware of the treatments being done. Both my endo (spend most time with) and gyn give me copies of all of my lab work automatically.
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Those doctors had me feeling that I was a hyperchondriac when I didn't fit in with their tests and they really did not know enough about PCOS. I had labs and ultrasounds and they could not tell that there was something wrong because it was within the normal range. My ovaries were a little large that was all. But I had all the symptoms of PCOS and I didn't know what else. Finally I found the right doctor and was having so much pain and bleeding that they scheduled a laparoscopy. I felt totally vindicated after years of suffering. But then I was aggravated that nobody listened to me in the first place. So if your doctor is saying you don't have PCOS because you are not insulin resistant, you should switch because your doc doesn't know enough about PCOS. There is about five types of PCOS now.
*Nods in agreement*
My colleague is Insulin resistant and was diagnosed with type 2 about 4 years ago, I talked to her today about mny concerns (she does not have PCOS) anyway she said "here give me your thumb" and she tested me with her little kit thingy, I came up as 5.1 so I am actually a little on the insulin low side, that could mean anemia, but it's as simple as that - however it doesn't mean I am not suffering PCOS, we have yet to find out
I have said it over and over this board, keep shouting loudest and insist someone listens, only you know how you feel, only you know you're body, doctors make mistakes and need to be pulled up once in a while to be told they are not God and need to get it right, so all you ladies, I implore you, don'ty leave it like I did, thinking I wasn't getting anywhere, because for me it's all too late, you have a chance!
Now I dont have PCOS? 
