Anyone like me?

rams · 03-03-2009, 07:15 PM

I just want to belong. I just don't seem to fit the bill and I have a feeling that specialists are labelling my pcos because it will keep me quiet. I have:

missing periods for 3 years, then only 2 in the previous 3 years
difficulty losing weight but not over weight
no cysts on my ovaries
extremely low LH -2
extremely low Estrogen - less than 10
extremely low progesterone level - 1
higher fsh - 12
no acne

I have had a second opinion and both docs tell me I do have pcos. Does anyone have these symptoms and still have the pcos label. I was under the impression that I should have high LH and high estrogen???

And if not pcos........then what is it??? What is wrong with me?

Thanks for listening to my rant.

Fan · 03-05-2009, 01:08 PM

Hi Rams, sorry to hear that you're confused.
I don't have the same problems as you, but I don't have most of the pcos symptoms either. The only ones I have are: irregular periods (not even missing) and ovarian cysts. I don't have weight problems, acne, hair loss, hair growth, IR, etc. But they diagnosed me with pcos nevertheless. I guess every cyster is different!

Angelito13903 · 03-05-2009, 01:32 PM

I have low Estrogen,low progesterone,higher fsh and no acne, and I was still diagnosed with pcos, i also went without a period for two years, I am having problems losing weight and also have ovary cysts... I also know that my bf has ovary cysts and do no have pcos so I dont know... Every female is different on her own way I guess...

August · 03-05-2009, 07:48 PM

If low estrogen is part of your list of issues, you might benefit from reading one or more of the books by Dr Vliet.

Also if you have low estrogen and high FSH - you might have something more like premature ovarian failure, or perimenopause or menopause. The array of symptoms that women with PCOS can have is quite variable - but I think often PCOS is characterized by an elevated LH:FSH ratio - so if you have an elevated FSH it might mean somethings else -- it would be up to a doctor of course to say for sure.

I was told that I have "premature ovarian decline with normal FSH" as well as PCOS (my LH:FSH ratio is very typical of PCOS) - "premature ovarian decline" is not really an officially used diagnosis word in wide use as much as it is what my doctors office used to describe what I have -- I think it mainly means low estradiol or low ovarian hormones in my case -- I looked into Premarture Ovarian Failure because it sort of sounded the same. Elevated FSH is consistent with POF (although high FSH might could mean other things too probably) - I was told that you really can't have POF without elevated FSH -- it would seem to me that low estradiol and missing periods might fit too - the rest I don't know about since I really did not go too far into looking into the possibility of FOS for myself. Again I don't know much about it but it might be worth an internet search for you to find out more.

Also - with low estrogen, especially if it started early, you might might want to ask your doctor if you need to get a bone density scan to make sure that loss of bone density is not a problem. (I have that too.)

Would you mind saying how old your are and at what age you think the problem you described began?

oldhousegirl · 03-06-2009, 04:06 AM

I'm afraid I have to agree with the post above mine -- sounds like possible early menopause/ovarian decline. You didn't say how old you are -- I know this can happen in early 30s if not earlier. You also didn't mention your testosterone and male androgen levels (e.g. DHEA) -- these being high is a better sign of PCOS than wacky female hormone levels (which many women have for different reasons).

rams · 03-06-2009, 04:07 AM

Hi.....
Well August I thought too that I might have POF but asked my FS and my FSH level or 12 is not considered high. 10 is normal, 12 is only slightly higher. My LH level was 2 so there is a big difference. I am 32 yrs old. I think I might just be special........so sick of being special.

I really think it is thyroid but I have had them checked and rechecked and then checked again and they all come back normal.

Thanks for your comments and for caring

August · 03-06-2009, 12:49 PM

Actually that's good news! With your estrogen and progesterone that low you might have good results with getting on a treatment plan that includes some estrogen and progesterone to replace what you body does not seem to be making. If I were you I might start researching that (learn the risks and benefits etc) - maybe especially the bio-identical option. Again I think the books by Dr Vliet might be a source of good information for you - there is supposed to be one with estrogen in the title but I don't think it is available yet. "Screaming to be Heard" is older but still good - it is sort of a complete reference for women with issues related to hormonal health with emphisis on subjects pretaining to estrogen.

One thing that I don't think we have really talked about yet is the low LH and I think you called it "extremely low". I don't know what the possible signifagance of that is -- and I sort of wouldn't, being a PCOS person -- you might still want to find out more about the possible signifancance of that is - did your doctor say anything about that?

Please say if you have any problems or symptoms related to excess male hormones or symptoms related to insulin/glucose intorlerance.

May I ask too - are you satified with the doctor or doctors that you have been using? - because that's something that makes a world of difference and if you are not happy with your current doctor perhaps finding one who is truely up to the challenge would a positive next step.

rams · 03-07-2009, 02:29 AM

Hi August,

You know your stuff girl!!! I will definitely have a search around online for those books you mention.

I have been to several doctors and they all just shrug their shoulders and say it is a form/variation of polycystic ovarian syndrome. Once again I questioned this and was given the same answer. This is my second FS and I have been to endocrinologists also. I think I have been given a loose diagnosis just to give me a label.

I am on metformin but this has made little difference. I do not have any excess male hormones.

My naturopath swears it is a thyroid adrenal problem but she believes I have any pcos syptoms under control as I am completely anal about healthy food and lifestyle.

I am about to start ivf so that is sure to mess with my estrogen/progesterone balance.

Thanks