[thesusanone]

I heard recently, when visiting a gynecologist for the first time in about 2 years, that the diagnosis of PCOS is being made now based on signs and symptoms of the disease rather than on the blood work. I thought that was interesting. I wonder if anyone else has heard this, or if some doctors are still basing it on patterns of highs in the bloodwork.

I was diagnosed with PCOS about 7 years ago, and at the time, the endocrinologist wanted to see certain things (insulin, male hormones, triglycerides, etc.) in the high end of normal, or off the chart. He explained to me that there is a pattern of "highs" that you typically see in the bloodwork of someone with PCOS.

But they also look for things like excess body hair, irregular periods, excess body weight, cysts on the ovaries, etc. (although not all women will have each and every symptom). I, for example, did not have the cysts on my ovaries at the time. But I was given an ultrasound a week or 2 ago, and now I have some cysts on my ovaries (I was sad to hear it).

The reason my gynecologist told me that the diagnosis of PCOS is made by these symptoms alone is that she wanted to discourage me from seeing an endocrinologist. But I told her that I want to get an update on my bloodwork to see how this disease is progressing or getting worse. So then she made the referral.

So I saw an endocrinologist to get my bloodwork done again, just to see where I am at. He said that he also wants to test me for my adrenal glands because he said that some women can have cushing's disease which can resemble PCOS symptoms. I always assumed I did not have cushing's disease because I have good muscle tone in my legs and arms. But the endo said that you can have cushings but just not be impacted as hard by the disease. I thought that was odd. But I am grateful for whatever tests he wants to run. This time I finally get the suppression test (the one where they give you a pill, a powerful synthetic steroid that shuts down steroid production in everyone with a normal adrenal gland, and then you have blood drawn the next morning). In the past, I was always given the 24 hour urine test. But the endocrinologist wanted to really rule cushing's disease out, so he went for the overnight Dexamethasone suppression test.

Just wondering if anyone else has gotten a different story on this whole thing of diagnosing PCOS and perhaps ruling out other diseases?

[Michelle125]

It took me years and many doctors to finally get them to diagnose me. I have normal blood work in all areas, but I have the facial hair, head hair loss, irregular periods, weight gain, cysts, everything. I even had one dermatologist try to convince I had female-pattern baldness. I wanted to laugh. I was a walking symptom of PCOS and no one would admit it! Finally I saw an endo and she said "Omg, you're a walking symptom!!!!!! I'm sure you have it. Let's test you."

All my blood work was fine except my DHA was the tiniest bit on the high end of normal. She said this was enough since I had all the external symptoms, too. She also had me take the Cushing's disease test and I cleared that.

It's so frustrating. I've been having symptoms since I was 12 years old (so for the last 14 years!!) and doctor after doctor just told me it was my hormones and I should just wait til they regulated themselves.

[rockstar87]

When I finally went to see a decent endocrinologist she wanted to rule out Cushing's as well. Cushing's syndrome has a ton of different ways it can present (as with most endocrine disorders) and since I had weight predominantly on my stomach and irregular periods she thought it would be a good thing to rule out. I tested negative for Cushing's (I took the dexamethasome test as well) and hypothyroid (which I had been tested for before) and she diagnosed me with PCOS. My blood work wasn't completely out of whack though. I had irregular periods, carried weight in my stomach, and my pelvic ultrasound revealed "cystic patterns on the ovaries consistent with PCOS". Hahaha. I still remember getting those results when I was 16 and wondering why my first endo wouldn't diagnose me as having PCOS. It was right there in the damn report! And of course, I'd been restricting my calories and exercising since I was 14 to no avail. I just kept gaining weight. I also did the oral glucose tolerance test and had slightly elevated blood sugar, but still within the normal range.

Anyway yeah, my new endo diagnosed me based on my symptoms. I think that's why a lot of people with PCOS get overlooked. "Normal" is a relative term. What's abnormal for you may still fall within the normal range of the population. Endocrine disorders are particularly notorious for this since hormones are so fickle within each individual. Thank god my endo recognized this!

[Lifeguard]

It took a long time for doctor's to notice in me. A gynecologist I saw once sent me for bloodwork specifically for it my bloodwork was inconclusive. It wasn't until I finally went to see my family doctor about my fertility that further investigation was done (bloodwork was done multiple times but never showed a problem). With the ultrasound it was obvious as my ovaries had a whole lot of cysts.

I think part of the problem for me is that I don't have some of the classic signs like excess hair or skin problems & I still menstruated regularly (ok, by regularly I mean basically once a month but as two years of tracking shows there is no rhyme or reason to it).

I think using the big picture is important & am glad symptoms are being used more frequently towards a diagnosis - hopefully this will help some women find answers a lot sooner.