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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"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  as well as in periphery ."
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
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.
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.
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.
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!
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. :)
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.
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.
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 . . .
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.