1

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PCOS and Paleo - Several Questions...

Answered on August 19, 2014
Created September 12, 2012 at 2:52 PM

Hi All,

First time asking a question/questions, but long-time lurker. Sorry if it's long...

Background Info: I have been dabbling in Paleo for over a year since being introduced via CrossFit. I am 32 years old, female, 5'5", 185 pounds (size 10). When I started CrossFit/Paleo, I was 178 pounds and a size 12. So even though the scale has gone up, I have managed to "lean out" a little. I'm definitely OK with that. [Prior to starting Paleo/CrossFit, I was 260 pounds and lost 80 pounds on calorie restriction and cardio.]

I work at a desk all day and CrossFit 3 - 5 times a week. I was diagnosed with PCOS about 12 years ago, and have been on Metformin since. During a recent visit to my endocrinologist, she was concerned about my weight gain. I explained that my measurements and dress size went down despite the weight gain, and that I was probably building muscle due to a) my training b) my Paleo-ish diet c) my excess testosterone as a result of the PCOS. She explained that a Paleo type diet is dangerous, that I should consider a low-fat, lower carb diet including "whole grains." She also said it's virtually impossible for women to gain muscle at my weight. I don't have a lick of medical training, but this advice floored me.

So...my first question is...does anyone know of a good/trusted endocrinologist in the Tri-state area that is a proponent of Paleo who treats PCOS? That may be an impossible request, but I just had to throw it out there because I'm done taking advice from my current endo.

My second question is related specifically to the Paleo diet in relation to PCOS. I've read through all of the posts that were tagged PCOS in this forum, however, I'm wondering if anyone has had success coming off of Metformin and using Paleo as the sole treatment for the disorder? If so, please weigh in.

I've read Robb Wolf's piece on Metformin...I honestly can't understand it as it is so science-based. I can't say that I have seen any results (blood work or otherwise) since starting the Metformin. My PCOS symptoms lessoned after losing my initial 80 pounds, but I believe that was purely due to weight-loss, which I believe was purely due to changes in my diet and activity level. I would like to explore fully stopping my Metformin and going strict Paleo. I'm currently about 80/20. I still eat dairy and I snack on nuts and fruit. From what I have read on these boards, it looks like I really need to focus on cutting out all dairy, nuts, and extremely limiting fruit if allowing any. Any additional advice?

I'm starting to ease into this over the next month. I figured ditching nuts is the easiest way to start so those are gone as of today. Any additional advice?

Thanks in advance for any guidance/expertise you can offer, and my apologies again for the length of this post.

7b9b5de13a30c823dae64a971cb14add

(540)

on January 21, 2013
at 11:49 PM

Any luck finding an endo? I am currently searching for a new one too...

7b9b5de13a30c823dae64a971cb14add

(540)

on January 21, 2013
at 11:49 PM

I saw Dr. Futterweit and found him completely unhelpful. The man is obsessed with Metformin. When I was struggling to tolerate it, he refused to consider anything else and wanted me to stay on it despite being really really sick from it. He also explained nothing to me and didn't listen to a thing I said. I've had a lot of bad endo experiences, and he is among the worst of them.

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:40 PM

And gosh, I just realized that perhaps you were not asking me about those things but just suggesting that those things need to be considered with a better/more informed Doctor.

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:40 PM

What I do know is that since the weight loss my insulin levels on the lab tests I get every 6 months have been "perfect" according to the current endocrinologist. I don't have a copy so I can't share - I wouldn't even know which line item to choose. I asked about the testosterone levels and was not given an answer I could understand. My fertility is not currently extremely important to me although one day, it may be. My cycle is currently perfect other than being uncomfortable - meaning, it's awful, but it comes every 28 days like clockwork (sorry if that is TMI).

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:38 PM

Hi Janknitz. Unfortunately, some of your technical terms stump me, which makes having such a complex problem like PCOS more difficult because I can't clearly understand what is happening or why. I have asked for it to be explained to me in very general terms, but all I can surmise is that my hormones and insulin somehow rely on each other and are broken which makes it difficult for me to lose weight and causes me to have other PCOS related symptoms.

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:30 PM

Thanks, Sharon! That is good to hear. I hate the microwave. Unfortunately, I still have to use it to heat up broth at work. Hope it's not doing TOO much damage.

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:29 PM

Thank you very much for sharing your experience, Sampson!

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6 Answers

2
3806e3db48abe8e15ae730a6314ea57f

on September 12, 2012
at 03:46 PM

Am also a long time lurker and registered for an account so I could share my experience with you. I am 27 and was diagnosed with PCOS around 20. I was put on Yasmin ("the pill") and metformin. I took both up until I turned 22 when I went from 195 lbs to 170. (not doing paleo). Just from the weight loss and being more active my cycle regulated itself. I stopped taking metformin a year to a year and a half ago. Actually with my Dr's blessing. She told me to try coming off it and see how I felt. And I had no issues (I have not had labs drawn so I can't tell you how my numbers are though.) I did gain a chunk of weight back after coming off metformin but I have been eating paleo for about 6 months and am back to 170 and still going down. My cycle is normal and I feel great. That's my story but I would say give it a try.

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:29 PM

Thank you very much for sharing your experience, Sampson!

1
3491e51730101b18724dc57c86601173

(8395)

on September 12, 2012
at 07:33 PM

Hi JM,

It sounds like your endo is not doing a very good job explaining all of this to you. I'm always leery of a doctor telling me that some test is "perfect" rather than sharing the actual numbers with me. Too often, a so-called "perfect" result on a test really isn't, when taken in the context of other numbers and or symptoms. Perfect example: The lab norms for TSH (thyroid test) say that any TSH level under 5.5 is "normal". But in reality, if the TSH is over 2.0, it indicates hypothyroidism may be present. It scares me how many doctors don't even know this and tried to tell me that my TSH level of 5.49 was "perfect".

Doctors are trained that "when they hear hoofbeats, they should think horses, not zebras". In other words, they tend to take the most obvious and easy explanation first. But in my experience, those of us with PCOS are zebras, not horses. And any doctor who thinks Paleo is dangerous and low fat is proper is definitely a horse doctor, not a zebra doctor.

PCOS is a complex syndrome that has many facets. It's my personal theory that it's not one disease, but a spectrum disorder (not Autistic spectrum--I just mean that there is a broad range of symptoms and manifestations). For example: weight is often tossed off as the cause of PCOS, but I had severe symptoms when I wasn't in the least overweight--most doctors overlook the possibility that the metabolic issues of PCOS may be the cause of obesity, not the result.

I have another chronic medical problem and the people in my online support community say this over and over again: Nobody cares more about your health than you do. So YOU need to be in charge of your care, with collaboration, not dictation, from a good doctor. That means you should have copies of EVERY lab, and spend some time educating yourself about what each test is for and what the results mean for YOU. It requires a good deal of self-education.

This is crucial if you want some day to have children. Paleo eating alone may control symptoms of PCOS enough to keep you comfortable and at a good weight, but perhaps the Metformin will be important to preserve your fertility or prevent long term cardiovascular disease. Or you may just be fine without Metformin. But it should be an informed decision, carefully considered with a knowledgeable physician, and carefully monitored, too, not just a stab in the dark.

0
D6c4fe3144d1bea66438e86712ccca8a

on September 12, 2012
at 06:58 PM

Not really anything to do with diet, but reusable items (cloth pads & cups - I like the soft minky pads & lunette cup) really helped me with cramps &, umm, volume. It was night & day after 2 cycles.

0
3654b5b893e312b69f8db05e4e5175b5

on September 12, 2012
at 05:21 PM

Hi JM, I would look into Dr. Walter Futterweit in NYC. I've never gone to him before but he wrote the book A Patient's Guide to PCOS: Understanding--and Reversing--Polycystic Ovary Syndrome http://www.amazon.com/Patients-Guide-PCOS-Understanding-Reversing-Polycystic/dp/0805078282

I have heard it's a bit difficult to get an appointment with him (popularity?).

Anyhoo best of luck!

7b9b5de13a30c823dae64a971cb14add

(540)

on January 21, 2013
at 11:49 PM

I saw Dr. Futterweit and found him completely unhelpful. The man is obsessed with Metformin. When I was struggling to tolerate it, he refused to consider anything else and wanted me to stay on it despite being really really sick from it. He also explained nothing to me and didn't listen to a thing I said. I've had a lot of bad endo experiences, and he is among the worst of them.

0
3491e51730101b18724dc57c86601173

(8395)

on September 12, 2012
at 04:48 PM

I think you need to make the decision with data and under the care if an endo who has a much better understanding of PCOS metabolism than this one. Consider a functional medicine doctor, as really good endos are few and far between.

There are a few things to consider: 1. How is your insulin metabolism functioning? A good endo will monitor this with c-peptide. 2. What IS happening to your testosterone levels. They should be coming toward normal. 3. Are you ovulating? 4. How important is it to you to preserve fertility? 5. A good endo will be monitoring your cardiovascular risk factors so you will have objective data to help you determine if you are maintaining your health if you go off Met.

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:40 PM

What I do know is that since the weight loss my insulin levels on the lab tests I get every 6 months have been "perfect" according to the current endocrinologist. I don't have a copy so I can't share - I wouldn't even know which line item to choose. I asked about the testosterone levels and was not given an answer I could understand. My fertility is not currently extremely important to me although one day, it may be. My cycle is currently perfect other than being uncomfortable - meaning, it's awful, but it comes every 28 days like clockwork (sorry if that is TMI).

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:40 PM

And gosh, I just realized that perhaps you were not asking me about those things but just suggesting that those things need to be considered with a better/more informed Doctor.

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:38 PM

Hi Janknitz. Unfortunately, some of your technical terms stump me, which makes having such a complex problem like PCOS more difficult because I can't clearly understand what is happening or why. I have asked for it to be explained to me in very general terms, but all I can surmise is that my hormones and insulin somehow rely on each other and are broken which makes it difficult for me to lose weight and causes me to have other PCOS related symptoms.

0
D6c4fe3144d1bea66438e86712ccca8a

on September 12, 2012
at 03:38 PM

I don't have an answer, but I also have/had PCOS. Since going with clean eating (including no microwave) almost all of the symptoms have gone away (no more chin hair, either). I was diagnosed at 19 (so about 15yrs ago). Never put on metformin (just bc). At the time, metformin was reserved until one was trying to conceive. Now I'm glad it was a time when medicine was more reserved, and I didn't have to take it. Good luck finding a new endo. Keep on keeping on & don't let poor nutrition advice get you down. I still have a good amount of weight to loose, but am giving my body time to undo the damage I did in the first 30yrs.

F76e0742f9992a37f213220c81195686

(105)

on September 12, 2012
at 05:30 PM

Thanks, Sharon! That is good to hear. I hate the microwave. Unfortunately, I still have to use it to heat up broth at work. Hope it's not doing TOO much damage.

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