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PCOS/Insulin Resistance Support Support for us with any of the following: Insulin Resistance, Syndrome X, Polycystic Ovarian Syndrome, or other endocrine disorders.

What do I do if I suspect something is wrong?

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Old 05-08-2014, 08:07 PM   #16
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Change doctors. Keep asking. And let us know what you hear!

My experience is that you've REALLY GOT TO FIGHT FOR YOURSELF in this. This morning I got brave, myself, and booked an appointment with a new endo.

My experience thus far:
I first saw a doctor (just a GP), looking for weight loss help, about 7 years ago. I gave him a quick rundown of my nutrition and lifestyle. He told me to "put down the cookies and pick up the carrots." I repeated the part about 4 days a week at the gym. He put me on phentermine. Turns out, phentermine makes me crazy. I don't sleep and spend my days panicky and paranoid. I lost 20 lbs, but stayed on it less than a year.

My life went on, and my weight loss struggle continued. A couple years ago I decided to go directly to an endocrinologist because my research was making PCOS/IR look like a possibility, and I was working out and eating right without weight loss.

He put me on 1000(g? mg?) of metformin and 1200 cals for 3 months. I lost a pound. He took me to 1500 met/1000 cals for another 3 months. I lost 2 more pounds.

About two weeks before my followup appointment, I hurt my feet in a race and was placed on no-impact. I immediately gained 7 lbs (while maintaining my diet).

Went to the followup with six months worth of dietary and fitness logs. He didn't even open the binder. Instead, he patted his stomach, told me that calories in equaled calories out, and suggested surgery. I didn't go back.

Now it's two years, a constant succession of foot/ankle injuries, and 50lbs later. I FINALLY got my clearance to work out again in February and have been working with a trainer ever since. I feel great, and love being able to move again, but have only lost 5lbs.

I have been trying to be smart but gentle with my food tracking (I get a little obsessive once I start measuring), but started logging again today so I have something to show the new endo on 5/28.

Apologies for the Wall of Text, OP, but I really appreciate the tips I'm seeing here, and would love to hear any suggestions on how to have the conversation with the endo without sounding like a lazy liar.
SHEESH at those harsh remarks your doc made!How rude!!!If they only knew how it feels to give it your all and go for years with minimal losses while other people can lose a whole person.

I will definitely come back and update when I go to the doc.I have been looking at reproductive endocrinologists in other cities who specialize in this sort of things.I have to get answers because I am at my wits end.I know what you mean about wondering how to explain your situation without the doc automatically thinking you're one of those people who expect weight loss without doing anything. Did Metformin give you any side effects?
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Old 05-09-2014, 11:31 AM   #17
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Did Metformin give you any side effects?
Thanks for the emotional support!

I had a brief conversation with the new endo about what I was prepping for the appointment, and am very optimistic! Also, I'm at a point in my life now where I'm less inclined to meekly take poorly-considered *ahem* medical advice.

I actually responded VERY well to metformin.

I had a bit of an ucky stomach any time I was transitioning dosages. Doc eventually had me on a pill 3x a day--if you're generally sensitive to medicine, give yourself one week on one pill, one week on 2x, then move up to 3x.

If for some reason you go off taking it (a cold, vacation, etc), expect to need to build back up again.

Speaking of vacation--I found it safer not to take mine if I was travelling or otherwise in an unfamiliar bathroom environment. Met was perfectly fine 99% of the time, but it needs consistency. If you suddenly eat something greasy or unusual, expect a tummy gurgle and some alone time contemplating your sins. And if you feel any *ahem* pressure building, do NOT assume you know which particular State of Matter you're dealing with. Do NOT. Simply find a safe place with lockable door and flush valve.

I know it sounds dire, but truly it's not. I did feel like my body was . . . um . . . revving higher?? Does that make sense? And my most distinct side effect was a Very Specific taste for things. If I'd planned on an amazing, mouth-watering turkey-avocado wrap for lunch, but the turkey wasn't sounding delicious around 11:30, there was no way I'd be able to eat it.
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Old 05-28-2014, 06:13 PM   #18
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Hey ya'll!

Just got back from my appointment.

Met with the endo for almost an hour, then she sent me for blood tests, a thyroid ultrasound, and to consult with an internist/gyno for some lady issues (I haven't stopped in almost 6 weeks. It's not unusual for me to go months *without* a period, but months with is a little scary). Internist put me on a week's worth of Provera, then sent me downstairs to consult with an ob/gyn, who wants to do an endometriosis (endometrium?) biopsy. (At this point it was almost 5pm and I hadn't eaten all day, so things were starting to get a little dizzying.)

Meanwhile, my thyroid ultrasound came back. I have a .6 cm nodule on the right lobe, and around a 1cm nodule on the left lobe. Don't know any more than that until the endo analyzes.

These are the tests she ordered. I'll get the results in a week. I didn't ask for any of them; apparently she either spoke with the other posters in this thread or is literally testing for *everything*!

17 OH Progesterone Serum
Androstenedione
T4, Free, Dialysis
Cortisol, Free, 24 Hour Urine
Testosterone-Total
CBC With Differential & Platelets
Comp Metabolic Panel
Cortisol, Total, Serum
DHEA Sulfate
Estradiol
FSH & LH, Serum
T3, Free
Hemoglobin A1C
IGF-1
Prolactin
Thyroid Ab (ATA, TPO)
TSH
Vitamin D 25 Hydroxy
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Old 05-28-2014, 07:15 PM   #19
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Other than the first two, sounds like my labs!

Good for you in getting all this done -- I hope your followup goes well.

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Old 05-29-2014, 05:10 PM   #20
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I agree! Good luck!
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Old 06-05-2014, 05:45 PM   #21
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Elle, didn't you say your appointment would be in June? Any updates??? I'm crossing my fingers for you!

I got my first round of test results back today.

TV ultrasound came back with only a slightly thickened endometrium and NO cysts or fibroids. I've been told that this means I definitely do not meet diagnoistic criteria for PCOS, and my a1c is "perfect", so we're moving on to checking other things . . . A biopsy for the larger thyroid nodule, an abdominal ultrasound for the ALT liver marker that was off, and (pending the cortisol results) a closer look at Cushing's.

The test results aren't labeled the same way they were ordered, so if anyone knows what these might be alternately listed under, let me know!

17 OH Progesterone Serum: 23.90 (<=206)
Androstenedione: 64 (no range given)
T4, Free, Dialysis: 1.9
Cortisol, Free, 24 Hour Urine -- pending
Testosterone-Total: 62.36 (10-75)
CBC With Differential & Platelets
Comp Metabolic Panel (the ALT element was 68 on a 1-53 range; glucose was 98 on a 65-139 range)
Cortisol, Total, Serum -- can't find this on the test results
DHEA Sulfate: 96 (35-430)
Estradiol: 52 (no range)
FSH & LH, Serum: FSH/6.6 LH/8.14 (no range)
T3, Free: 3.29 (2.5-3.9)
Hemoglobin A1C: 5.3 (4.0-6.0)
IGF-1: >60? (whole line runs together and reads: <60.00 mL/min/1.73m2 ml/min/1.73min")

Prolactin: 8.2
Thyroid Ab (ATA, TPO): not listed; could they be hiding in the CBC or Metabolic Panel section?
TSH: 2.4
Vitamin D 25 Hydroxy: LOW 0 15.8 (30-100)
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Old 06-05-2014, 06:50 PM   #22
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Hey KTG!
I had my appointment yesterday. My doc recommended everything that I'm currently doing(low carb, working out atleast 4x/week,lots of water) so I had to be very pushy until she got my point . She thought it might be the hormones in my birth control (Yaz) but I told her I haven't been taking it for the past 4 months and I am still in the same boat.

I explained my family history and she wrote me an order to be tested for diabetes. She mentioned that she could write me a prescription for a weight loss pill and I told her I would much rather do it naturally.She did write the persciption for apidexin in case I change my mind. I lost over 100 pounds on my own so there's no doubt in mind I could do it without any meds but I am just at my whits end. She wants me to consider taking the apidexin for one month and then coming back to re-evaluate from there.She didn't offer to run labs for anything else and I wasn't sure what to ask for.The prescription is $150 per month and I would only be able to stay on it for 3 months max.I will think about it over the weekend before I get it filled...not sure if I want to shell out the money because I also pay my tuition out of pocket...Sigh..

If I do start the perscription and don't lose anything I think I am going to ask her to refer me to a specialist.I am frustrated beyond words.Any thoughts ladies?
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Old 06-05-2014, 06:54 PM   #23
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Originally Posted by KTG1981 View Post
Hey ya'll!

Just got back from my appointment.

Met with the endo for almost an hour, then she sent me for blood tests, a thyroid ultrasound, and to consult with an internist/gyno for some lady issues (I haven't stopped in almost 6 weeks. It's not unusual for me to go months *without* a period, but months with is a little scary). Internist put me on a week's worth of Provera, then sent me downstairs to consult with an ob/gyn, who wants to do an endometriosis (endometrium?) biopsy. (At this point it was almost 5pm and I hadn't eaten all day, so things were starting to get a little dizzying.)

Meanwhile, my thyroid ultrasound came back. I have a .6 cm nodule on the right lobe, and around a 1cm nodule on the left lobe. Don't know any more than that until the endo analyzes.

These are the tests she ordered. I'll get the results in a week. I didn't ask for any of them; apparently she either spoke with the other posters in this thread or is literally testing for *everything*!

17 OH Progesterone Serum
Androstenedione
T4, Free, Dialysis
Cortisol, Free, 24 Hour Urine
Testosterone-Total
CBC With Differential & Platelets
Comp Metabolic Panel
Cortisol, Total, Serum
DHEA Sulfate
Estradiol
FSH & LH, Serum
T3, Free
Hemoglobin A1C
IGF-1
Prolactin
Thyroid Ab (ATA, TPO)
TSH
Vitamin D 25 Hydroxy
lol!That's great!Maybe she needs to talk to my doc haha.It sounds like your doc is really trying to get to the bottom of things.Make sure you keep us posted.
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Old 06-10-2014, 05:38 PM   #24
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Just a quick update--really do push for these tests. It never occurred to me that my vitamin D could be low, but I've been on supplements now for a week (they've got me on iron, D3, and B12).

I. Feel. Human.

Probably only about 60-75% human, but I'm only just realizing that I was at *MAYBE* 40% these last couple months. I knew I was bad. But I had NO IDEA how bad I felt until I felt better, y'know?

And I've lost 2 lbs since last Tuesday (scale was 272.7 at my official weigh-in this morning; Sunday I saw glimpses of 270!!)

I don't know if we'll end up having similar answers to our questions, but I never, ever would have thought to take a D supplement without the doc testing it. Even if we don't find anything else (and since my other options right now include thyroid cancer and cushing's, I'm happy NOT to find anything), just from the D3 levels alone . . .

Calories in DID NOT equal calories out.

I wasn't crazy. And the fix (well, so far . . . I haven't gotten my ultrasound bills yet . . . ) was $14 for a bottle of vitamins.
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