Do I have it or am I crazy?

mineralperfection · 04-10-2008, 08:46 AM

I havent gotten a DX but I just know I have PCOS. But then there are times I think maybe its all in my head... anyhow, I listed my symptoms below.

I told my doc I thought I had PCOS after seeing an episode of Mystery Diagnosis on Discovery Health, so he sent me to have an Ultrasound (on the belly) the tech that did it said oh you cant see polycystic ovaries like this you have to have a vaginal ultrasound... so my doc sent me for that one, the tech told me oh you usually cant see polycystic ovaries like this. My doc said yes you can and said that I dont have pcos. Im so frustrated!! I clearly remember when I was a teen I had terrible pains and I went to the gyno, had an ultrasound and them telling me oh you just have small cysts on your ovaries that are harmless.... mom and I didnt know any better so we never pursued it.

My fatigue and tiredness was MUCH worse when I was taking synthroid for my hypothyroid, I would sleep 12-15 at night and have to take a nap within 3 hours of waking up. I did internet research much like im doing now for pcos and found armour thyroid, i convinced my doc to switch me and oh my! did I see a difference! Hands down Armour is much better than Synthroid in my opinion.

Well enough of that.. here are my symptoms, whats your take on it?

Tiredness / Fatigue (Sleep 10+ hours)
Always Feel like I’m in a Mental Fog
Dramatic Hair Loss
Facial Hair (chin & neck)
Irregular Periods (only a couple times per year, not in a consistent pattern)
Weight Gain Spurts (worst was 10 lbs in a 7 day period)
Irritable Bowels (especially after eating high fat & carbs)
Low to Zero Sex Drive
Feet & Ankles Swell (at least once a day, often more)
Constant Congestion (blow my nose at least 20x per day for months at time)
Blurred Vision (only when I’m up and walking around)
Migraines
Hump on the lower back of my neck
Very Oily Skin (face is extremely greasy just 1 hour after washing)
Acne (cyst like acne under the skin that last weeks)
Extreme Mood Swings
Depression

Diagnosed with
Hypothyroidism (4 years ago)
High Cholesterol (4 years ago)
Non- Alcoholic Fatty Liver (1 month ago)

Labs that my doc did, He actually did these before I asked about pcos, he did them because of my hair loss

FSH 6.9 - LH 14.0 - Progesterone 0.7 - Testosterone 83 - DHEAS 293 - Triglycerides 433 - Cholesterol - 266 - Glucose 90

I know this was a LONG post but any insight would be great. Maybe it is in my head, I don’t know

Eva37 · 04-10-2008, 01:28 PM

welcome to sc

no. It's not in your head!! What's your dr going to do for you now?? You dont have to have cysts on the ovaries to have pcos. Confusing, i know. Hope you get some help, soon.
eva

ohiomom · 04-10-2008, 03:54 PM

They didn't find cycts on my ovaries either but I have PCOS beyond a shadow of a doubt. I would try to find a Dr. that knows more about PCOS beyond just the name.

Hoping For #2 · 04-10-2008, 09:55 PM

Hi! You don't have to have the cysts on your ovaries! My doctor told me this when I was finally diagnosed after 3 doctors and about 4 times of doing the tests. I have every other symptom, just no cysts. She said the name can make doctors stupid because they think it means you have to have cysts, but you don't! Like you I just knew I had for a long time and no one would say I did, but they had no other explanation for my symptoms and my inability to get pregnant. Try a different doctor.

Tara1021 · 04-10-2008, 10:00 PM

Hi! Newbie here...I don't have cysts, in fact i'm in the process of stimming for IUI next week and haven't even developed them for that. I have all the chemical issues related to PCOS...insulin resistance, high tri, high chol. etc. I've been on Met for a year now. Was DX about 4 years ago with PCOS.

Macauley's Mommy · 04-15-2008, 02:28 AM

The bump that you mention at the base of your neck made me think of a condition that I had read about a few years ago called Cushing's Syndrome. I remember it having similar symptoms to those of PCOS. Try googling it to see if your symptoms match up.
Most importantly, if you're not comfortable with or confident in your doctor, find another. If she/he's your Primare Care Physician, ask for a referral to an Endocrinologist. There are specialties in medicine for a reason and if this doctor can't give you a clear diagnosis he/she needs to send you to someone who can.
Good luck and keep us updated!

Aphrodite82 · 04-15-2008, 09:18 AM

You might want to have a look at the following website it was posted on here as Guide For Understanding Lab Results For PCOS:

Comprehensive list of 'normal' ranges for various test results:
http://www.fertilityplus.org/faq/hormonelevels.html

By that website some of your levels are listed as being High. So your doctor should have taken these into account!

FSH 6.9 (is in the normal range)
LH 14.0 (is elevated)
Progesterone 0.7 (is low)
Testosterone 83 (most would consider a level above 50 to be somewhat elevated)
DHEAS 293 (is in normal range)
Triglycerides 433 (a high is 400-1000)
Cholesterol 266 (a level of 200-239 is borderline high, and a level 240+ is high)
Glucose 90 (a healthy fasting glucose level is between 70-90)

Then maybe you could ask your doctor about why your blood checks where never followed up or taken into account as to why some of them are high?

Hope this helps?

eww · 04-16-2008, 02:58 AM

I'd say to be tested for Cushing's. But if you come out clear for that, it does sound a lot like PCOS. But definitely do the Cushings tests.

mineralperfection · 05-08-2008, 09:12 PM

I took my labs to a Dr and he diagnosed me right away without me having to tell him I thought I have it! WOW!

He looked at my labs and said this is your dx right here. My primary doc said oh your labs are nothiing to be worried about.

The new dr did an ultrasound and said yup you have classic pcos.... i said you see cysts in my ovaries? He said oh yeah definately... I told him I had an ultrasound two months ago and they said I didnt have cysts.... his tech was standing about 4 feet behind him she said wow I can even see them from here!

Can you beleive that?? Some drs are so damn worthless!! I am Mad (cuz my other drs are stupid), Sad (cuz i have pcos), & happy (cuz I have an answer) all at the same time!

He put me on met, I took my first pill today. fingers crossed I start to be able to live normally again!

Thanks for all your help!!

mineralperfection · 05-08-2008, 09:17 PM

I originally thought I had cushings so my primary did test me for that... he said I didnt have it... but we established that hes an idiot! So who knows

I did the urine adrenal test and saliva

CathyJ · 05-09-2008, 11:38 AM

Just a suggestion,,,,,if I were you I would find another doctor! I went from doctor to doctor for years before I found the right one. I look back now, and wish that I had found the right doctor long ago, because I truely think some of the things I have experienced, like ovarian tumors could have been prevented had I been taking the right meds.

I wish you the best of luck!!!

LaLaRanger · 05-09-2008, 08:26 PM

Find a doctor who will give you answers! I had to go through 4 doctors before i got a diagnosis 3 weeks ago. All of the other doctors kind of brushed me off when I suggested i had PCOS, they really didn't take me seriously. But finally I said enough is enough, and I went into the last doctor determined to get answers. I went prepared with a list of my symptoms, a chart of my irregular cycle, I hadn't plucked any chin hairs, and I asked for blood test and a vaginal ultrasound. I know it seems bossy, but I knew if I didn't take control of this situation myself, no one else would.

I wish you the best.