lizcharles

i'm so frustrated.

the short form of my story is: around 17 my periods started disappearing. i went to my GP and he tried to get me on the pill, i said no, did some research on my own, and came back believing 100% that i had PCOS, he did an ultrasound which came back negative. every year i insisted that something was wrong, my periods were getting further and further apart, the weight was piling on, again he prescribed the pill. now im seeing a weight loss specialist and he tested me to see if i was IR, finally! i thought. someone listening to me! i got my tests back today and i'm not insulin resistant. he's sending me for a glucose tolerance test just to be sure. the only thing that was wrong with my blood is that i'm vitamin D deficient, this flabbergasted me since i was farming ALL summer, in the sun 12+ hours a day and not wearing sunscreen (i'm bad i know). i came home and looked up and surprise surprise, women with PCOS are very often unable to absorb vitamin D.

i have:
obesity
2-3 periods a year
acne (especially big cystic acne)
facial,chest, upper thigh, back, stomach hair
skin tags
WHAT ELSE COULD IT BE?

i just got a new GP and am going for my physical in January. i feel like every doctor is only looking at one piece of the puzzle and not the whole picture. (the weigh loss doctor didn't test my hormones, and my old GP just gave me an ultra sound)

so can someone give me a list of all the things i should be tested for and the normal ranges that i can give to my new doctor?

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heidi1979

Liz~ I have alot of the same symptoms as you, however, I do also have the polycystic ovaries. I still don't have a definant diagnosis. I have been to 4 doctors and had tons of tests, even an MRI. They can't decide if I have Hypothalmic Amenorrhea or PCOS. The first condition is like your hypothalmus which directs the brain to produce hormones doesn't work up to par. So I feel ya, I am in the same boat!

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Heidi(29) Josh(28)
~Male Factor 1/05 (hx of testicular cancer)
~ IVF #2. Started Lupron 10/31/08. Stims start 11/15/08 and acupuncture
~Meds: Prenatals, 1500mg Metformin XR, 25mcg Levothyroxine, baby aspirin, & 100mg B6

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"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11.1

lisanicole

i was diagnosed by my symptoms/labs.. i have never had an u/s of my ovaries to see if there are actually cysts there. you can have pcos and not actually have cysts.

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Navi

Have you tried actually seeing an OB/GYN or endocrinologist? It still might take a while to find a good doctor, but usually they know a lot more about hormones than the average GP.

As for what they should be testing; testosterone, estrogen, estradiol, progesterone, insulin, glucose, thyroid stimulating hormone, DHEAS, cholesterol, and the ratio between luteinizing hormone and follicle stimulating hormone should all be high on the list! I don't remember all of them, but the last time I had labs there were 14 total.

Did your GP test you for anything besides insulin and glucose?

There are some good websites for b/w ranges floating around here, especially if you check the stickies in the newbie forum. Sometimes doctors interpret the numbers wrong and it's good to be able to check that information yourself.

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lizcharles

thanks heidi, i feel like i'm crazy because no one will listen to me. i feel like they think i'm just trying to get attention or something.

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ilovescott

I agree with Navi's idea. You really need to see an ob/gyn or endo.
Also, I have non-insulin resistant PCOS, you can still have it.

I hope you have some better luck!

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lizcharles

yeah if my new GP dosnt do anything then i will go to an Endo...

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peggy2006

not all women have cysts..and not all women are IR...i did not have IR..so the only things that dx me were the cysts and lack of period. you have a LOT of symptoms..i would find a doctor who knows about PCOS. A lot of doctors are not familiar with it and don't dx it because they don't know anything about it! I would definately be looking for another doctor. How long has it been since u had ur last u/s? maybe if its been a while..consider doin another one..if they do blood work on you again..make sure they test all ur levels..androgen and all that other fun stuff.. call doctors around to find out if they treat a lot of patients for PCOS. If they don't tell you what u wanna know...find another doctor! You deserve good treatment and knowledgable doctors!

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TTC #1 since Feb/07
DX PCOS 11/28/2007

7/29/08 - BCP to bring AF
8/15/08-8/19/08 - Soy CD 3-7
9/13/08 - HPT=BFN
9/19/08 - Beta=BFN
9/19/08 - Provera to bring AF


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heidi1979

Liz~ You are def. not crazy. I have been to my family doctor, two OB/GYN, and now two Reproductive Endocrinologists and still don't have a definate dx.. Hang in there hun : )

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Heidi(29) Josh(28)
~Male Factor 1/05 (hx of testicular cancer)
~ IVF #2. Started Lupron 10/31/08. Stims start 11/15/08 and acupuncture
~Meds: Prenatals, 1500mg Metformin XR, 25mcg Levothyroxine, baby aspirin, & 100mg B6

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"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11.1

Eva37

well i have late onset cah (congenital adrenal hyperplasia) as well as pcos. Which gives similar symptoms.
eva

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PCOS, LOCAH, Lichen Planus, IBS, HS,alopecia - raised bp/ cholesteral. Wheat and dairy intollerance Meds: Spiro, Bendrofluazide, Amlodopine, Simvastatin, Met, Prednisolone, Colefac, multi vits,

Me - 41, hubby 36 son 11. Married 14 years

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isenephthys

liz, you are not crazy and i agree with the idea that you should see an endocrinologist b/c they deal with hormones, only hormones. i think you will get better care than through a primary care md.

be persistent in seeking out care that you feel fully addresses your needs. i hope things get moving in a better direction for you.

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