PCOS/Insulin Resistance Support - What do I do if I suspect something is wrong?




elledoll2
04-10-2014, 08:45 PM
Hi ladies!
Long story short, I have had a weight problem my entire life.My WLJ started when I was in middle school/high school.I lost over 100 pounds.Unfortunately,I put the weight back on during college.For the past few years, I have been diligently trying to take the weight off again(First weight watchers and then MyFitnessPal). I have been unable to make the scale move more than 5-8 pounds.At times I have even GAINED weight while being active and eating healthy. Last week I stumbled upon some info regarding IR. I have been following the suggested meal plan(low carbs) and walking for one hour every other day and FINALLY the scale is budging and the inches are coming off.

My aunt who has PCOS(along with several other relatives-also have family history of diabetes) suggested I go to my doctor to have labs run.I went and my dr reported my labs were "perfect".:?:She suggested I try p90x and herbalife shakes.Well,I tried those and my body fought me to lose less than 5 pounds.I also got the feeling that she didn't believe that I workout regularly and eat a healthy diet,which honestly broke my heart and I left in tears. I know everyone says "calories in,calories out" but that just isn't the case for my body for some reason.I really would hate to go back to her to have her do any more labs for this reason.I'm wondering if my ob gyn would be able to do these same labs or refer me to some type of specialist who is willing to listen?

My dr. when I was in middle school told my mother I was prediabetic if that makes any difference.:?: I am also a classic apple shape.

Thanks for listening :hug:


Shannonsnail
04-10-2014, 09:01 PM
Were thyroid tests run? Other than that I suspect you could have IR if you saw results when lowering carbs. I have been prediabetic for many years. I have had difficulty losing weight until finally a few weeks ago I bit the bullet and started cutting out grains and sugar. Now the scale is finally moving. My recommendation would be to see another doctor if you don't feel you are being heard.

elledoll2
04-11-2014, 12:23 PM
Hi Shannon-yes she ran thyroid tests.She said everything was fine with those also.Just curious of how many grams of fat you consume?I'm fine on carbs and protein but I'm always over on my fat.


ladypeacek
04-11-2014, 02:46 PM
In regards to fat intake- it really depends on the type of fat. I go over all the time on overall fat and I'm doing alright to lose just fine now that I've gotten my PCOS under control. (I eat a lot of avocado and nuts and lean meats which is where my high fat intake is coming from). I also do herbal life shakes.

My questions would be- how often are you weighing yourself and getting stuck at 5-8 pounds? Is this over months of time, or just a few weeks? Are you measuring yourself or just staring at the scale? What exercises are you doing and how often?

As for as IR- if he didn't run a glucose test (you'd know it by the nasty drink and then lab tests following)...ask for one. My doctor didn't listen to me either and I totally went to my gynecologist and said, HELP...she was the run to finally run all the tests and find my hormones were a mess (now seeing an endocrinologist) and my IR was insanely bad (now on metformin).

Shannonsnail
04-11-2014, 04:26 PM
Hi Shannon-yes she ran thyroid tests.She said everything was fine with those also.Just curious of how many grams of fat you consume?I'm fine on carbs and protein but I'm always over on my fat.

I am not tracking anything right now, it's a binge trigger for me. But, I imagine I am way over on fat too. Not worried about it though. The carbs are what keep weight on me and frankly, they are what raise lipoprotein levels too. I spent 8 years of my career working in that field so yeah, not worried.

elledoll2
04-11-2014, 07:55 PM
In regards to fat intake- it really depends on the type of fat. I go over all the time on overall fat and I'm doing alright to lose just fine now that I've gotten my PCOS under control. (I eat a lot of avocado and nuts and lean meats which is where my high fat intake is coming from). I also do herbal life shakes.

My questions would be- how often are you weighing yourself and getting stuck at 5-8 pounds? Is this over months of time, or just a few weeks? Are you measuring yourself or just staring at the scale? What exercises are you doing and how often?

As for as IR- if he didn't run a glucose test (you'd know it by the nasty drink and then lab tests following)...ask for one. My doctor didn't listen to me either and I totally went to my gynecologist and said, HELP...she was the run to finally run all the tests and find my hormones were a mess (now seeing an endocrinologist) and my IR was insanely bad (now on metformin).

I've been weighing myself no more than once a week lately.The scale is moving in right direction since being more aware of carbs so hopefully it continues to.I do need to make sure I take measurements more often because when I lost weight before,it helped keep me encouraged.As far as workouts it was zumba,bellydance, or TurboFire. For the past week or so,I've been doing Walk Away the Pounds 5 mile walk or walking outside.What type of exercise do you do?

No-she didn't run a glucose test.I will make an appt. with my gynecologist and hopefully she can help me get this figured out.Do you have side effects from the medication?

elledoll2
04-11-2014, 07:58 PM
I am not tracking anything right now, it's a binge trigger for me. But, I imagine I am way over on fat too. Not worried about it though. The carbs are what keep weight on me and frankly, they are what raise lipoprotein levels too. I spent 8 years of my career working in that field so yeah, not worried.
Most of my fat is from healthy sources(macadamia nuts,almonds,coconut oil) so I guess that's okay.I'll keep an eye on it and see if it stalls my progress at all.Thanks for the feedback.

ladypeacek
04-12-2014, 01:59 AM
I do a mixture of strength training and cardio. I have a home body gym for strengthening every part of my body. I also have a treadmill, stepper and kettlebells to use. I love the kettlebells, they are my favorite, always feel it in the right places.

If you are building any muscle doing this, your weight may not change very much at first, since it weighs more than fat does, which is why I suggested measuring too. I don't do any weighing or measuring myself at home. I check in with my nutritionist every three weeks and she does it. I would probably do it every two-three weeks instead- weight fluctuates a lot- and not seeing results will only discourage you. Instead, really focus on how you feel, health-wise.

Rana
04-16-2014, 09:09 PM
My recommendation is to go to a reproductive endocrinologist -- they deal with PCOS patients all the time. A regular endocrinologist may or may not be useful, but they usually deal with diabetes patients.

A gyno can probably be a better help too, than a regular doctor. I have found that normal doctors don't really know how to treat PCOS -- my own doctor basically recommended a 900 calorie diet and more exercise. My repro-endo actually ran better lab tests than my GP (more precise than the regular LabCorp tests) and did the glucose tolerance test AND recommendation medication even though my bloodwork came back borderline. My gyno gave me the pelvic ultrasound to verify the cysts and also recommended a healthy weight loss diet (he said Weight Watchers was the one that actually worked because it didn't require weird foods!).

I've been dealing with my PCOS I have discovered that right now, my lab tests come back "normal" because I am taking care of myself, but I still have IR and PCOS.

Eating a low-carb diet and exercising is the best way to manage it. But I can't over-exercise... it will increase your glucose levels (did you know THAT?!) so it's a mixture of pilates and spinning/cycling (heavier on the pilates side).

The other thing that you have to take into consideration is that you're in this for the rest of your life. So, you lose only 5 lbs this month. That's okay. Even if you don't lose any pounds next month. You're eating well, you're treating your IR and your PCOS. THAT is more important.

That is probably the hardest thing to wrap your head around.

Good luck!

elledoll2
05-01-2014, 12:16 PM
Thanks Rana. I made an appt. with my gyno but I can't get in until June.:(:( My gyno is very sweet so hopefully she can help me figure out whats going on. I just brought the glycemic load diet book.I hope it doesn't affect my results.I would have never guesses that about too much exercise increasing glucose levels.Wow!!

astrophe
05-01-2014, 01:42 PM
My dr. when I was in middle school told my mother I was prediabetic if that makes any difference. I am also a classic apple shape.

We present in at least 5 ways. (http://www.3fatchicks.com/forum/pcos-insulin-resistance-support/223873-poll-what-type-pcos-patient-you.html)

You sound like you are one of the insulin-resistant ones. Do you also have dark brown patches on neck, elbow, knees, ankles, etc? That could be acanthosis nigricans -- another sign of IR.

Think about changing doctors and think about asking for specific labs for PCOS because you think you might have it and you have a near relative with it.

http://www.inciid.org/faq.php?cat=infertility101&id=2

I've had more success since changing endocs. My new one also checked Vitamin D and B12 levels (which stunk!)

A.

KTG1981
05-02-2014, 04:35 PM
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.

Rana
05-02-2014, 11:13 PM
I think there are two thoughts to this.

On one hand, the first and most important thing should be treating PCOS -- in other words, it should be about getting your labs to come as close to normal as possible.

So, KTG, what did your labs show? Do you have IR? How is your thyroid? How are your hormones? Did you have glucose tolerance test done?

My first endo was not any help -- he was a normal endo and wanted to put me on drugs. My next endo was a reproductive endocrinologist and that made a difference.

First, I would focus on getting your labs to normalize -- whether that includes weight less or not. Get your bloodwork fixed, through diet, exercise, drugs.

Secondly, I would then focus on diet. And even for PCOS women, diet is critical. If IR is present, then you have to manage your blood sugar. I tested myself for months to get an understanding how food was affecting my blood sugar; how I woke up in the moring, how I was doing when I went to bed. That information, IMO, is important to understand what's going on in your body.

Then, I changed my diet. I had to. I wasn't losing enough and I had to make peace with food that I never thought I could give up. I won't say it's easy. It isn't.

And calories matter, but also the quality. I can eat 1000 calories worth of cookies and I will stall and gain weight (and be stark raving Bxxxx to everyone around me). I have found that I need to manage my carb. The best diet for me right now is a paleo style diet -- with no nuts (those, I discovered, make me gain weight or stall).

So, I would start focusing on health and then focus on weight loss last. PCOS is much more than just a weight problem. It's a true health issue. You may find that as you balance your labs, your weight does comes off (although both will probably at the same time).

KTG1981
05-04-2014, 05:23 PM
Thanks for the very thoughtful response, Rana!

The endo never diagnosed me with *anything.* He ordered a CBC and (I think maybe) a thyroid test, and told me that everything was normal. Then he put me on the metformin and advised me to avoid caffeine and sugar (which I did), and come back in three months. Three months later is when he upped the met and lowered the cals, then the checkup after that was when he recommended surgery and I NOPED it out of there.

As far as the diet--when I was working with him before, I would do a slice of toast and sunflower seed butter for breakfast, lunch was carrots, almonds, 1/2 an avocado, and hummus, and dinner was generally a chicken/hummus wrap. I'd supplement with two snacks of yogurt or whole fruit, and carrot sticks if I needed some sort of in-between.

I tend to eat fairly healthy anyway--I avoid carbs and refined sugar--but since refocusing in February I've been very, very focused on protein, protein, protein (I'm just craving it constantly), eating a variety of veggies, and maxxing water consumption.

I'm looking forward to seeing the new endo. Like OP, I know *something's* not right on a biochemical level, I just don't know what.

I hope I don't have the same reaction to nuts that you did, though . . . not sure I can live without my almonds!

elledoll2
05-08-2014, 07:40 PM
We present in at least 5 ways.

You sound like you are one of the insulin-resistant ones. Do you also have dark brown patches on neck, elbow, knees, ankles, etc? That could be acanthosis nigricans -- another sign of IR.

Think about changing doctors and think about asking for specific labs for PCOS because you think you might have it and you have a near relative with it.


I've had more success since changing endocs. My new one also checked Vitamin D and B12 levels (which stunk!)

A.

Yes,my neck is darker than the rest of my body.When i was younger my doctor made note of this in reference to being pre-diabetic but thats as far as it went.After a diagnosis is made is Metformin(or any other meds) typically prescribed?

elledoll2
05-08-2014, 08:07 PM
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.:dizzy::( Did Metformin give you any side effects?

KTG1981
05-09-2014, 11:31 AM
Did Metformin give you any side effects?

Thanks for the emotional support! :hug:

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.

KTG1981
05-28-2014, 06:13 PM
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

astrophe
05-28-2014, 07:15 PM
Other than the first two, sounds like my labs!

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

A.

Rana
05-29-2014, 05:10 PM
I agree! Good luck!

KTG1981
06-05-2014, 05:45 PM
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)

elledoll2
06-05-2014, 06:50 PM
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?

elledoll2
06-05-2014, 06:54 PM
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.

KTG1981
06-10-2014, 05:38 PM
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.