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Is PCOS an autoimmune disease?

by (110)
Updated September 16, 2014 at 7:42 PM
Created March 28, 2012 at 2:08 PM

I resonate with Robb Wolf's idea that a lot of western disease has an autoimmune component. Despite having no known autoimmune problems, I wonder if PCOS is a disease that may have autoimmune underpinnings. My symptoms have greatly improved (not entirely resolved) with paleo, and I wonder if part of the reason is that the Paleo diet is very autoimmune friendly.

I know that women with PCOS are more likely to have autoimmune thyroiditis, but I'm wondering if PCOS may be autoimmune, even in the absence of thyroiditis.

A google search didn't lead me to anything.

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150 · February 26, 2013 at 10:22 AM

oops... looks like someone has already replied the same to you...

0c8f3010ebaee7d5e9338e49824753af
150 · February 26, 2013 at 10:21 AM

ummmm... I'm no doc but considering your high DHEA but normal testosterone and symptoms being more adrenal related, you might be having LOCAH and not PCOS or probably a mix (so I have read)

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2029 · October 16, 2012 at 2:39 AM

I've looked LOCAH up too, but my labwork doesn't exactly match it either (initial diagnoses of LOCAH is elevated 17-hydroxyprogesterone. Mine is depressed). That being said, I do plan to explore the extent of my endocrine problems further when finances will allow.

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4002 · July 19, 2012 at 10:44 AM

thank you so much for digging that out!!!

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4002 · July 19, 2012 at 10:44 AM

but hyperinsulinemia is an underlying factor... not necessarily the cause!

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200 · July 19, 2012 at 12:44 AM

Sometimes PCOS is caused by a malabsorption of nutrients in the diet. Celiac disease is often a suspect and is autoimmune as well.

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97 · June 03, 2012 at 10:59 AM

Did you have a problem with losing hair on your head before paleo? If so, has your hair started to come back thicker since being on strict paleo? (I am suffering with the hair loss currently.)

03525a7d89c96efe387b86be91fee9a5
110 · March 28, 2012 at 5:53 PM

Most often PCOS is tied to hyperinsulinemia, particularly where one is overweight. However, there are many cases of "thin" PCOS without hyperinsulinemia, in these cases insufficent aromatase may be an issue. In either case, what causes the hyperinsulinemia or the aromatase inhibition? Still could be autoimmune, though I'm not sure.

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9 Answers

Ecb90bbbd5a15868b2592d517a4a5e82
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280 · July 18, 2012 at 11:56 PM

Yes:

"Autoimmune mechanisms as well as an increased production of multiple autoantibodies are involved in such infertility disorders as POF, endometriosis, polycystic ovary syndrome *(PCOS)*, unexplained infertility, and repeatedly unsuccessful IVF attempts and may be responsible for the pathophysiology of preeclampsia or spontaneous abortions, as stated in many original articles as well as discussed in reviews (Table 2) [19, 22???25]. Although not many studies have been performed on humans, the role of cellular immunity in ovarian autoimmunity, in addition to humoral immunity, has been detected both locally in the ovary [26] as well as in periphery [27]."

Review on Autoimmune Reactions in Female Infertility: Antibodies to Follicle Stimulating Hormone, Clinical and Developmental Immunology Volume 2012 (2012), Article ID 762541, 15 pages doi:10.1155/2012/762541

http://www.hindawi.com/journals/cdi/2012/762541/

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4002 · July 19, 2012 at 10:44 AM

thank you so much for digging that out!!!

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30 · October 10, 2012 at 1:40 AM

I have PCOS. When my symptoms started, I walked every day, and ate a relatively low carb diet. Meaning I ate mostly meat and veggies. Almost always fresh.

I gained and gained and gained, despite my best efforts to stay in shape and to get healthy again. This started when I was 19. I am now 26.

When I was 22, I ended up in the ER because of "sporadic uterine bleeding". The short of it is that I had so little estrogen that the lining of the uterus wasn't building back up and just shed, continuously. I almost died.

A little bit of a back story for a second: reading "SoulCysters.Net" I discovered that the most common factor for women who start to have PCOS symptoms in their early 20s, actually started to have them as early as the start of their puberty. Meaning that they started puberty before they hit double digits, and cycles never regulated, and were sporadic or absent for months at a time. I started puberty at 9. I had my first cycle before I hit age 11. I have NEVER had a regular cycle, unless on birth control. And even then, sometimes I wouldn't have one.

Since my diagnosis I have been on a LONG roller coaster ride of weight gain and loss. I have taken many meds, tried many different forms of birth control, tinkered with my diet, tried exercising (I still do most of these things), and I am still stuck at a high weight.

Through my research, I have found that PCOS is linked to genetics as well. They say that if your mom has it, you most likely will have it. If you have it, your sister(s) most likely will have it. There is also a male form of PCOS.

I also suffer from chronic body pain. This started a couple of years ago, and is getting worse, despite the fact that I am finally losing weight. I also have joint and muscle weakness, despite the fact that I have ZERO damage, and I am way more active than I use to be. I have also been told that though my weight is not helping the joint and muscle problems, it is NOT causing it.

When I found out that my weight isn't directly causing the issues, I went on the search for PCOS possibly linked to autoimmunity. I keep finding questions, but no definitive answers. Many people are stepping up and asking this question. And since I am finally losing and my body pain, muscle and joint weakness isn't getting better, I suspect it has to do with the PCOS.

By the way? There is absolutely nothing wrong with my thyroid.

I hope this helps a little? Even if it just adds my name to the list of folks asking the same darn questions... With my story, maybe someone else can gain some insight.

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30 · July 18, 2012 at 4:59 PM

PCOS is not caused by high carbohydrate diet. It is an endocrine disorder that affects the whole body. Their sex hormones are affected and it causes a myriad of health problems. Excessive and unhealthy carbs make this condition worse. The insulin resistance causes women to gain weight and makes it very hard to loose despite diet and exercise. There is a cell dysfunction that causes this. I very much believe PCOS has autoimmune pproperties. Look at all the symptoms. It certainly looks autoimmune to me. Research is constantly changing. I wouldn't be surprised it this disease was re-classified at a genetic autoimmune disorder.

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20908 · March 28, 2012 at 4:05 PM

What I've read (and heard on podcasts) is that PCOS is generally attributed to hyperinsulinemia. That is, a high-carb diet that promotes a constant background level of insulin causes bad things to happen, one of which is PCOS. So I probably wouldn't attribute it to an autoimmune problem, but the fix is still the same.

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4002 · July 19, 2012 at 10:44 AM

but hyperinsulinemia is an underlying factor... not necessarily the cause!

03525a7d89c96efe387b86be91fee9a5
110 · March 28, 2012 at 5:53 PM

Most often PCOS is tied to hyperinsulinemia, particularly where one is overweight. However, there are many cases of "thin" PCOS without hyperinsulinemia, in these cases insufficent aromatase may be an issue. In either case, what causes the hyperinsulinemia or the aromatase inhibition? Still could be autoimmune, though I'm not sure.

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30 · December 25, 2012 at 10:43 PM

Well. I joined this site because of this particular thread. And through my research and looking online, I only was finding limited answers.

Well. A few weeks ago I found a legit article. Linking PCOS to autoimmunity!

textareaReview on Autoimmune Reactions in Female Infertility: Antibodies to Follicle Stimulating Hormonetextarea

I do hope this answers some questions, and helps those needing a reference point to talk to their doctor about this, and getting better treatments. :)

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2022 · October 16, 2012 at 2:18 AM

Check out www.paleoforwomen.com and click on PCOS. There is a lot of info there and, I can't find it now, but I remember reading a post discussing the link between pcos and autoimmune disease. That website is great, poke around it awhile and I'm sure you'll find some info.

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95 · October 16, 2012 at 2:09 AM

Michelle, based on your bloodwork, it sounds more like you have LOCAH (Late Onset Congential Andrenal Hyperplasia...google it) than PCOS. The symptoms are often identical but causes and treatments are vastly different.

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2029 · October 16, 2012 at 2:39 AM

I've looked LOCAH up too, but my labwork doesn't exactly match it either (initial diagnoses of LOCAH is elevated 17-hydroxyprogesterone. Mine is depressed). That being said, I do plan to explore the extent of my endocrine problems further when finances will allow.

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8057 · October 10, 2012 at 4:04 AM

I don't know about autoimmune but it is a metabolic disorder of hormone disruption. I was very thin. Menses onset at 13 and always anovulatory and irregular even though I was quite thin until my late 20's when I began fertility treatments. I had to do IVF to conceive my first child, my second, 8 years later, was a complete surprise when I was low carbing. Correct the metabolism and the symptoms abate. I started ovulating on low carb for the first time in my life without fertility drugs within 1 month of low carbing, well before any significant weight loss and on standard low carb, not the healthy paleo diet I'm on now.

My mother had PCOS (undiagnosed but the symptoms were there and I was her only child after many years of marriage) and my daughter, who is just 11 has been diagnosed by bloodwork and symptoms. I do believe there is a strong heredity component, but metabolism plays a role too. My lifelong diet before low carbing and later paleo was full of sugary carbs even when I was very thin. Trying to minimize carbs in my daughter's life, but it's not too easy because DH (who does the shopping and cooking) does not want her to "cut out an entire food group" (rolling eyes heavenward). Sigh . . .

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2029 · October 10, 2012 at 3:31 AM

I have PCOS. I've read (and found from personal experience) that gluten intolerance, usually an autoimmune condition, is often comorbid with PCOS. That in addition to common comorbity with autoimmune hypo/hyper-thyroidism makes this seem really plausible to me.

From personal experience, while I don't have celiac (that I'm aware of), my chronic sinus infections were an inflammatory/autoimmune response to gluten. Also, I experienced far more benefit in treating my PCOS when going simply gluten free (plus shift macros a little in favor of protein/fat) than I ever did by also eliminating grains/legumes entirely.

My PCOS is also NOT textbook. Last I was tested, I had high estrogen and DHEA/DHEAS, but my testosterone, total progesterone, fasting glucose, and fasting insulin were all completely normal. I also have/had low 17-OH progesterone and waking cortisol. I was officially diagnosed based on symptoms (acne, irregular periods, heavy periods, family history of metabolic syndrome and breast cancer) and an imbalance of FSH/LH.

My doc tells me my issues are probably more adrenal-related. This complicates the basic protocol for PCOS, which generally addresses the issue of insulin resistance and ovarian function more directly. But it is certainly more complicated than that.

0c8f3010ebaee7d5e9338e49824753af
150 · February 26, 2013 at 10:22 AM

oops... looks like someone has already replied the same to you...

0c8f3010ebaee7d5e9338e49824753af
150 · February 26, 2013 at 10:21 AM

ummmm... I'm no doc but considering your high DHEA but normal testosterone and symptoms being more adrenal related, you might be having LOCAH and not PCOS or probably a mix (so I have read)

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