Does this sound like PCOS? Lots of questions!

[Staceyshoe]

My gyn called me today, told me that I have PCOS based on blood work, and referred me to an endo. Hormonal issues are my achilles heel, but I never dreamed that I had PCOS. I'll try to keep my history brief:

 

Things were normal until I was 23 and then came down with almost debilitating symptoms overnight. I had such EXTREME fatigue that showering was difficult. I slept at least 14 hrs per day and even around the clock on occasion with absolutely no effect on the fatigue. I had other symptoms at the time--periods went from normal to 3-9 months apart, bruising all over my legs even without anything touching them (friends and family gasped when they saw me in shorts), etc.

 

During that time, I went to dozens of drs who did lots of labs. No one ever came up with anything except mild hypothyroidism (which runs in my family) and symptoms did not improve on meds. Several alternative practitioners diagnosed me with severe adrenal fatigue. The one endocrinologist I saw said that my fatigue and lack of menstrual cycle must be due to emotional problems and recommended a shrink. I finally went to an acupuncturist who did amazing things for my energy level and menstrual cycle.

 

At age 30, we tried to conceive and surprisingly had 4 pregnancies (2 m/c). Once it did take 2 cycles to get preg. The other 3 times, it happened the first try. I've never had symptoms of a cyst. I had pelvic ultrasounds following my m/c (6+ yrs ago) and they checked uterus and ovaries which looked normal. 2 yrs ago, I had bloodwork and it was all normal except thyroid.

 

Now, at age 37, I have elevated cholesterol and an FSH:LH ratio that's off. Does this sound like PCOS? I read the symptom list and nothing (other than menstrual irregularities) seemed to fit. I have battled a 10 lb weight gain lately but thought it was just metabolism changes from age. Doesn't PCOS usually start earlier than mid-late 30's? Is it possible that all those drs overlooked it before (including 2 pelvic u/s and an endo and countless PCPs)? Or that I'm just developing it? Early menopause (age 35-42) runs in my family. Would that explain my FSH:LH issues?

 

All cases of PCOS have cysts, right? Would an u/s show whether I have cysts? I'm wondering if this is PCOS or if it's just screwed up hormones.

 

ANY insights you have are very very very welcome! My head has been spinning with questions all day. I have a long wait to see the endo and am just plain flustered. Maybe this is the answer I've been seeking for 15 yrs? Maybe it's a misdiagnosis?

Edited March 2, 2011 by Staceyshoe

[RahRah]

You didn't post the FSH and LH values, so it's harder to know where your hormone levels are....but....in the absence of ovarian cysts (looks like a string of pearls on ultrasound) with irregular periods, easy bruising, weight gain, miscarriage, etc. sound more like Hasimoto's Thyroditis than PCO. Have you been tested for thyroid antibodies?

 

Your best bet isn't a general endocrinologist, I'd suggest a reproductive endocrinologist since they concentrate on women's hormonal issues as well as fertility.

[Staceyshoe]

You didn't post the FSH and LH values, so it's harder to know where your hormone levels are....but....in the absence of ovarian cysts (looks like a string of pearls on ultrasound) with irregular periods, easy bruising, weight gain, miscarriage, etc. sound more like Hasimoto's Thyroditis than PCO. Have you been tested for thyroid antibodies?

 

Your best bet isn't a general endocrinologist, I'd suggest a reproductive endocrinologist since they concentrate on women's hormonal issues as well as fertility.

 

Thank you! I still don't have the FSH and LH levels. I requested a copy of the lab report but am waiting for it. She just said that my ratio was pretty off. The nurse said that I'm probably not ovulating at all, but I'm pretty sure that I do ovulate, just irregularly.

 

My TSH tends to be high, neg for antibodies, and T3 and T4 are ideal. That seems to be the typical profile for my family (many many people with hypothyroidism). Honestly, I've never noticed a difference when my TSH was high or normal, on meds or not. Could this be a pituitary issue?

 

The endo I'm seeing does specialize in PCOS and fertility, so hopefully she will be helpful. I also plan to see the local natural hormone guru (also an MD but insurance doesn't cover her services). I'm curious what they each have to say.

[RahRah]

Thank you! I still don't have the FSH and LH levels. I requested a copy of the lab report but am waiting for it. She just said that my ratio was pretty off. The nurse said that I'm probably not ovulating at all, but I'm pretty sure that I do ovulate, just irregularly.

 

My TSH tends to be high, neg for antibodies, and T3 and T4 are ideal. That seems to be the typical profile for my family (many many people with hypothyroidism). Honestly, I've never noticed a difference when my TSH was high or normal, on meds or not. Could this be a pituitary issue?

 

The endo I'm seeing does specialize in PCOS and fertility, so hopefully she will be helpful. I also plan to see the local natural hormone guru (also an MD but insurance doesn't cover her services). I'm curious what they each have to say.

 

What day of your cycle was your FSH and LH tested? I ask because the ratio is useful when done on day 3 of your period and is helpful with diagnosing PCO - but there are other things that can be wonky other than PCO with an FSH:LH ratio that's outside normal.

 

Since you've been tested for thyroid antibodies, it's probably not Hasimoto's.

[Staceyshoe]

What day of your cycle was your FSH and LH tested?

 

It was probably around day 40-something;). (Remember I can go quite a while between cycles.) The funny thing is that the nurse said she didn't think I could ovulate, but I'm fairly certain I ovulated 4-5 days after the blood test. (I should be able to confirm that in a couple of days if I start my period when I expect.)

 

Hmmm . . . so maybe this is not indicative of PCOS? I would love to have a firm diagnosis that makes sense, but I'm not completely convinced that PCOS does make sense in my case.

[Mergath]

I have PCOS, and you'd never know from looking at me. My weight is pretty average- I could lose ten or twenty pounds- I haven't had acne issues since I quit drinking soda, and I have a daughter (despite being told I was basically infertile). I never would have known I have it except for my menstrual irregularities. They did all the tests because I hadn't had a period in three months, and found out I had PCOS. They did an ultrasound and found cysts on my ovaries, too, so I definitely have it. But not everyone with PCOS has all the symptoms.

[momchiroto2]

I was diagnosed with PCOS, they never found cysts on me. I was told i would never have children and I have two :)

The thing that has helped me the most with my hormonal issues is balancing my blood sugar and excercise (besides regular chiropractic and acupuncture ).

I believe that one of the drugs they prescribe is metformin which is a diabetic drug.

[Staceyshoe]

Thanks, everyone, for your input. How I wish hormonal issues were more straightforward! It does seem like the same issue can present so differently in different people.

 

I was diagnosed with PCOS, they never found cysts on me.

 

Does this mean that some people with PCOS don't have cysts? I was thinking that an u/s might be a sure-fire way to know whether this is PCOS for me or if it's just more hormonal imbalance issues.

[sgr123]

I just joined this board, so hello!!!

 

I have PCOS. Syptoms can present differently in women. I have many of the classic symptoms, but no cysts ever. My periods are completely erratic, I had trouble conceiving, depression, I have had acne (in my 30s, but not before), I have gained a ton of weight after I had my babies. My first two children were conceived using fertility drugs, my third by treatment with metformin. I did not find out I had this until after my second child was born. My husband caught a spot on the news, I took the info to my doc and she tested me.

 

I don't know anything about the cholesterol levels, but it is odd that you posted about that. I just had a complete panel done and my cholesterol and triglycerides were elevated. I am the same age as you.

 

You said something about early menopause in your family. Odds are that those women had PCOS as well. My mother "started into menopause" at 38 (same doc that dx'd her as menopausal missed a diagnosis of PCOS for me as well). A lot of doctors don't know anything about this.

 

This is/can be a hereditary disease. Again, symptoms present differently. You could set a calendar by my mother and sister's cycles. Neither of them had any problems conceiving. My mother has never been officially diagnosed, but she lost all of her hair, gained weight after my sister was born. My sister is showing many of the other syptoms now, hair loss, darkening of the skin (which is insulin deposits). She was diagnosed after I was because she was starting with symptoms and I told her to get checked.

 

Metformin is a good treatment for PCOS as is BC pills. If left untreated with irregular periods, it can lead to other problems with your uterus. The tissue builds and builds and may not all be shed with your period. You can end up with a hysterectomy.

 

A great site that you can get a lot of info from is SoulCysters. I hope my info helps. If you have any other questions, just ask and I'll try to answer them for you. Living with this is a pain, but manageable.

[KC in KS]

My sister & I have very similar symptoms; she's got metabolic syndrome, I'm merely insulin resistant.

 

There's lots of varieties of disturbances in this area; researchers are still uncovering new aspects & rearranging labels pretty frequently.

 

PCOS's distinguishing mark is cysts on the ovaries. You could be absent those and still have something awry. I second the vote for an RE.