Discussions By Condition: I cannot get a diagnosis.

I Need A Diagnosis...PCOS?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: annie_robin
  • August 12, 2009
  • 01:45 AM

Hi, there. Sorry if this is a long post. :)

For the past 10 years (since I was about 8), I have struggled with weight gain and inability to lose weight. When I hit puberty, I didn't start my period on my own, it had to be induced. I took birth control pills to regulate it, but when I stopped, so did my periods. That was 4 years ago. I also have a lot of excess body hair, facial redness, muscle weakness, insomnia, extreme fatigue during the day. I carry all my weight around my middle and in my face (despite everyone in my family being built differently). A few years ago, a gyno thought I had PCOS and tested me, my results being negative. I have since been tested for Cushing's twice, using two different tests, both being negative, as well.

I went to an endo and saw a nurse practitioner who told me I had PCOS, despite testing negative a few years ago. He tested me again. When I got my lab results, my testosterone, FSH, and LH were all in the normal range. I called and confronted him on this fact, and he told me to make an appointment with the actual endo. That appointment is next Tues. In the mean time, I want to know if any other ladies with PCOS had normal test results. My testosterone was 73, my FSH is 2.3, and my LH is 6.2, all normal, as far as I can tell. Does this sound right? Or could it be something else? He didn't even test my estrogen and progesterone. He also didn't have me fast like my gyno did the first time.

Thanks in advance for any help you can provide.

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3 Replies:

  • Hi, there. Sorry if this is a long post. :) For the past 10 years (since I was about 8), I have struggled with weight gain and inability to lose weight. When I hit puberty, I didn't start my period on my own, it had to be induced. I took birth control pills to regulate it, but when I stopped, so did my periods. That was 4 years ago. I also have a lot of excess body hair, facial redness, muscle weakness, insomnia, extreme fatigue during the day. I carry all my weight around my middle and in my face (despite everyone in my family being built differently). A few years ago, a gyno thought I had PCOS and tested me, my results being negative. I have since been tested for Cushing's twice, using two different tests, both being negative, as well. I went to an endo and saw a nurse practitioner who told me I had PCOS, despite testing negative a few years ago. He tested me again. When I got my lab results, my testosterone, FSH, and LH were all in the normal range. I called and confronted him on this fact, and he told me to make an appointment with the actual endo. That appointment is next Tues. In the mean time, I want to know if any other ladies with PCOS had normal test results. My testosterone was 73, my FSH is 2.3, and my LH is 6.2, all normal, as far as I can tell. Does this sound right? Or could it be something else? He didn't even test my estrogen and progesterone. He also didn't have me fast like my gyno did the first time. Thanks in advance for any help you can provide. Hi i myself have PCOS as well as many other issues. My hormone tests appeared in normal ranges so my doctor due to my symptoms (all PCOS ones.. gain weight so easily, facial hair, missing periods or very very long cycles, shocking period pain with heavy bleeding) said he didnt know enough about hormones and sent me to a different GP who specialised in womens issues (pregnancy, hormones, PCOS etc). As soon as she looked at my hormonal tests which had been in normal ranges...she saw an issue and said it was abnormal. This was that thou they were in lab normal range.. the actual hormone ratios were wrong! (when compared to my other hormone) and she said from this result that it appeared i did have PCOS. To vertify it she then sent me for an ultrasound which then also showed, i had the PCOS presentation of "chain/ring of pearl" effect (umm i think i've got that right?), where eggs/cysts were developing and maturing but not releasing hence all just sitting there like a ring of pearls in my ovaries. "I went to an endo and saw a nurse practitioner who told me I had PCOS, despite testing negative a few years ago." im wondering how on earth they came to that conclusion without some kind of actual backup confirming test.
    taniaaust1 2267 Replies
    • August 13, 2009
    • 08:52 AM
    • 0
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  • I have PCOS too, with a lot of the same symtoms as you. My hormone results were OK too but what tipped them off is when I was tested for insulin resistance. It was the big red flag.
    Anonymous 42789 Replies
    • August 14, 2009
    • 03:10 PM
    • 0
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  • I have PCOS too, with a lot of the same symtoms as you. My hormone results were OK too but what tipped them off is when I was tested for insulin resistance. It was the big red flag.I believe I have PCOS as well. I was tested about 3 years ago and it came back negative. I have since moved and my appt is next Wednesday. Due to insurance issues I had to stop my hormones and my facial hair, hair on my back and breast has all returned and worse than ever. My periods are extremly heavy and getting worse. I also have gained about 20lbs in the last 8 months. I crave sugar all the time and I believe I am insulin resistant. I am worried that I will have another negative result and the doctor will blow me off. It is comforting to hear everyone's story. It help me know that I am not crazy and to keep fighting until something is done.Thanks!
    Anonymous 42789 Replies
    • December 2, 2009
    • 02:04 AM
    • 0
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