(Update: I wrote this article as a result of my now former gynecologist diagnosing me with PCOS. It was written when I just started treatment. As a result, I didn’t know everything that I know now and the parts in italics are my updates to this. Meanwhile, I have reason to believe that I do not in fact have PCOS, but more on this in a later article)
It all started at the age of 24 with a mean comment from my ex-boyfriend M, one of the reasons why he is now my ex-boyfriend: he had an arsenal of mean comments, which ultimately destroyed my self-confidence, but that is another story, suffice to say that acceptance of your partner is very important in a relationship. The point is that he was bemoaning the fact that he thought I was “a little too hairy.” I never dreamed that I would actually have one of his cruel slights to thank for anything, but I do because it was ultimately that comment that led me to ask my gynecologist to test my hormone levels, as I felt I was “too hairy.” She felt that my amount of body hair wasn’t really anything to worry about, but complied with my request and, lo and behold, I was diagnosed with hyperandrogenemia or elevated androgens (male hormones).
I was promptly put on an anti-androgen contraceptive pill and from then on none of my future gynecologists seemed particularly bothered about any further treatment. I was always slightly overweight, which they were especially fond of pointing out (and my last gynecologist even made a bitchy remark about it despite me telling her that I have Hashimoto’s to boot), but none of them really did further investigation and, despite subsequent tests that showed that my male hormones were still high, they kept me on the same anti-androgen contraceptives and that was that. Until I met Dr. H, my current gynecologist.
Because there is no one clear definition of what constitutes PCOS (or Polycystic Ovary Syndrome), it had up to now been unclear as to whether or not I suffer from this (and looking back it still was unclear when Dr. H diagnosed me, but he had his own agenda … more in a later article). In the beginning, the ultrasound had shown one or two incidences of cysts on my ovaries, which however soon disappeared – apparently, such cysts can also be a temporary occurrence, but in PCOS such cysts are actually eggs that are unable to be released due to abnormal hormone levels. After months of arguing with my insurance that I have the isolated condition hyperandrogenemia rather than full-blown PCOS, mainly because I don’t have any of the accompanying symptoms such as hirsutism, irregular periods or acne (but this is possibly because I was put on an anti-androgen contraceptive pill early enough), my insurance lowered my exorbitant surcharge because apparently hyperandrogenemia and PCOS fall into two different categories, which perfectly illustrates the controversy that surrounds a clear diagnosis of PCOS. Now, because of this, I have to refer to my condition as “hyperandrogenemia” for fear that my insurance will get on my case again.
Perhaps this absence of “obvious” symptoms (other than my fat tummy, which I now know was probably due to Hashimoto’s although Dr. H cruelly convinced me otherwise) is one of the reasons why previous doctors have refused to take my hormone imbalance seriously, but perhaps it’s also because of ignorance. PCOS is an extremely complicated condition to diagnose and treat and it was discovered comparatively recently – in the 1930s by two doctors Stein and Leventhal, hence its original name Stein-Leventhal Syndrome.
These two doctors originally only diagnosed women with the syndrome who were extremely overweight, exhibited lots of facial or body hair and had an absence of periods. I for one do not fit this description, as is the case with many other patients. PCOS can manifest itself in a wide variety of ways and, despite its name, not every woman with PCOS automatically has polycystic ovaries and, in turn, not every woman with polycystic ovaries (PCO) has PCOS. PCOS describes the symptoms that accompany polcystic ovaries, thus making it a syndrome. Despite the fact that PCOS is known to affect up to 25 percent of women of reproductive age, from the time of its discovery 60 years passed in which very little research was done whatsoever.
In fact, the treatment of patients with PCOS rather reminds me of thyroid disease. Too many doctors refuse to treat hypothyroid/hyperthyroid patients unless they exhibit “full-blown” symptoms, but sometimes it is better to proactively intervene and start treatment at an early stage in order to avoid a worsening of the condition. Untreated PCOS can lead to multiple health issues, including cardiovascular disease, miscarriage, preeclampsia, Type 2 and gestational (pregnancy) diabetes (insulin resistance is frequently cited as a trigger to PCOS), fatty liver, Metabolic Syndrome, strokes, Alzheimer’s, endometrial cancer and, surprise, surprise!, our old friend autoimmune thyroid disease.
However, from what my thyroid doctor tells me, thyroid disease can in fact trigger PCOS, so the question is “what came first: the chicken or the egg?” I don’t wish to alarm you with this list, but merely to raise your awareness of how potentially serious PCOS can be. Some of these symptoms (e.g. Alzheimer’s and endometrial cancer) are more likely to occur in untreated advanced-stage PCOS.
At this stage, you are probably wondering what the connection is between PCOS and hypothyroidism. First and foremost, it’s vital to understand that the entire endocrine system is very closely interlinked. Hence, if one of the hormones is imbalanced, there is a higher likelihood that others are too. For this reason, patients with thyroid disease are more prone to other hormone imbalances and thus it is even more important to make sure your doctors determine the full picture by doing thorough testing. To be more specific: hypothyroidism can result in a reduction in Sex Hormone Binding Globulin (SHBG) and hence an increase in free testosterone, which is one of the factors that contributes to PCOS.
To make matters worse, because PCOS is generally treated with an anti-androgen contraceptive (which raises the SHBG to bind testosterone), those who are on the pill will need extra thyroid hormone. This is because extra estrogen causes an increase in the amount of circulating thyroid binding globulin (THG), a protein that absorbs freely circulating thyroid hormone, transforming it from “freely available” thyroid hormone into “bound” thyroid hormone. As a result, your levels of thyroid hormone might be “normal”, but less of this hormone is active. I guess that’s why it’s so important to test for free T3 and free T4. To further complicate matters, women with PCOS are prone to estrogen dominance! And as if that weren’t complicated enough, my doctor recently informed me that excess androgens (e.g. testosterone) in women tend to artificially lower your TSH, whilst excess estrogen in men has the same effect. Hence, your levels may actually look more balanced than they are.
Because of the close relationships between all hormones in the endocrine system, it’s vital to ensure that you have a complete balance, although meanwhile I am of the opinion that there are cases when something may look like a hormone imbalance on paper, i.e. the blood results, when it is not actually pathological (i.e. indicative of an illness). Hence, despite the fact that my fiancé’s thyroid disease is much more advanced than mine, I currently require extra thyroid hormone because I also have another hormone imbalance to contend with, which in turn may impact the efficacy of my thyroid meds. Meanwhile, because it seems increasingly unlikely that I even have PCOS, I am more of the opinion that this may be because I was on the pill to treat this condition and anyone on the contraceptive pill will usually need a little extra thyroid hormone anyway (see above). I recently stopped taking the pill and will report back on my experiences.
As I mentioned above, insulin resistance is cited as the main cause of PCOS. Women with insulin resistance have elevated levels of the hormone insulin in their blood, which stimulates the ovary to produce androgens (male hormones). A normal ovary produces the male hormone testosterone, which it converts to the female hormone estrogen. However, if the ovary is stimulated by either excess insulin or luteinizing hormone (LH), this conversion is impeded and excess androgens flow into the bloodstream (as the blood level of testosterone-binding protein is reduced) and thus more androgens become available to the tissues, resulting in virilization or the development of male characteristics.
It is also important to note here that PCOS can have genetic causes and there may be a family history of Type 2 diabetes. In my case, I know for a fact that my sister was once diagnosed with PCOS, although like me she doesn’t have the symptoms, so I’m meanwhile skeptical as to whether she really does have it or whether I have it either for that matter. Apparently, there are also genes that predispose us to PCOS, many of which are responsible for the action of insulin and the production or metabolism of sex hormones. Weight gain can also trigger or worsen insulin resistance and vice-versa, which is probably another reason many hypothyroid patients are more prone to PCOS. In turn, losing weight can restore insulin and androgen levels and subsequently ovulation, which is why this strategy often goes hand in hand with medication to normalize these two hormones. To lose weight, PCOS patients are often advised to follow a low-glycemic diet (low GI) diet and many may benefit from visiting a dietician for advice on a diet tailored to their needs.
Metformin (aka Glucophage) seems to be one of the drugs of choice for treatment of PCOS. Originally prescribed for diabetes, in recent years it has also shown some promise in reducing insulin and thus androgen levels, as well as the high triglycerides/cholesterol caused by the Metabolic Syndrome that is often associated with PCOS. A natural alternative that has shown a similar effect is cinnamon (http://bit.ly/9RdNrY; http://bit.ly/c3yEfc). It is important to thoroughly test for insulin resistance, including glucose tolerance testing, as oral glucose tests may uncover blood sugar issues that are not diagnosed by fasting blood sugar levels. This is why my doctor is going to perform this test on me next week. My fasting blood sugar appears to be normal, but it’s best to be sure when you have PCOS.
Of course, these are not the only medications your reproductive endocrinologist/gynecologist or thyroid doctor can prescribe. I’m currently taking the anti-androgen pill Valette, which is frequently prescribed together with Metformin and now my doctor has me on Androcur to lower my levels further. Be warned: with Metformin, you can expect to suffer from gastrointestinal issues, at least in the first few days. In the US, Metformin XR is also available – an extended release version that you take just once a day and that tends to alleviate the nasty diarrhea and bloating that you may experience with the other one.
In my experience, whilst Metformin is effective for lowering blood sugars and even triglycerides, it is very hard on your system and is also renowned for depleting your B12 levels, so it’s best to take a supplement. I also had a friend who suffered hair loss as a result, but I think this is a fairly rare side effect. In my opinion, cinnamon is definitely a viable alternative and, if it works for you, a better alternative due to its lack of side effects – more on this in a later article. My HbA1c was 5.7 upon diagnosis of prediabetes as a result of the glucose tolerance test, which is actually extremely borderline, but we have a very proactive doctor who didn’t want it getting worse, particularly because an underactive thyroid automatically puts you in a higher risk category. As a result, he prescribed Metformin and my HbA1c dropped to around 5. The HbA1c gives you an indicator of your average glucose levels over the past six to eight weeks.
Now that you know that hypothyroidism puts you at a greater risk of PCOS, it’s important to recognize the symptoms to ensure that you get a correct diagnosis. The classic signs seem to be polcystic ovaries, although (as I mentioned above) not every PCOS patient has these. In addition, you may suffer from acne/oily skin, hirsutism (excess hair growth), male pattern baldness, high blood pressure, lipometabolic disorders such as high cholesterol/triglycerides, weight gain or obesity (particularly around the abdomen), acanthosis nigricans (rough, dark skin in the skin folds that signalizes severe insulin resistance), skin tags, PMS, irregular or absent menstruation, infertility due to lack of ovulation, miscarriages and fatigue. There are other symptoms, but this should provide you with a selection of the main ones.
Ironically, the main treatment of choice, the contraceptive pill, can actually cause certain symptoms and make them worse – e.g. weight gain, blood sugar issues, high blood pressure, as you may have noticed if you have ever read about the risks that are associated with birth control pills. However, most good doctors like to get to the bottom of what is causing PCOS and by improving this (e.g. insulin resistance) improve the symptoms. Birth control pills are good at masking the symptoms, but they won’t reverse the condition and you need to be aware of potential side effects, although I have heard that bioidentical hormones are better in this respect as they are more tailored to what you need. However, for some people with PCOS, the pay-off may well be worth it. Check out the website of the fourth link if you’d like to find out more about possible natural alternatives.
Confusingly, too, there is a huge crossover between many if not most of these symptoms and thyroid disease. My ex-gyno was adamant that my weight gain had been caused by PCOS, but I now know that that is most probably bullshit as I have lost a lot of weight, but my androgens have barely budged – the same goes for a lot of my supposedly PCOS-related symptoms … more in a later article.
I decided to talk to some other Thyrellas to find out about their experiences with PCOS. C told me the sad tale of how she struggled to get pregnant and when her doctor prescribed her fertility meds, she even had a miscarriage the first time round. In 2007, after several arguments with her husband, they decided to give up for a while. Her body was stressed by the extra hormones and their relationship was stressed by the effort to successfully carry to term, so they talked about adopting and C went off the fertility drugs. A few weeks later, after eating Taco Bell, C felt nauseous and decided to take a pregnancy test. Based on her irregular periods, it was hard to tell whether she was pregnant, so she took the test and, in shock, her husband and she realized that it was positive. Because of her past experiences, they didn’t want to get excited too early, so they took three more tests to be sure and waited three months before telling their families – at the time, C was seven months pregnant. “AJ was conceived naturally with no fertility meds! Such a miracle … he is my world, my everything!”
B told me that the first time she noticed something was awry was when she was 19 and woke up in the middle of the night feeling as if someone was stabbing her. She ended up in the ER and was diagnosed with a ruptured ovarian cyst. From that point on, she bounced from birth control to birth control. She suffered for years with various symptoms and complications until at age 30 she found an endocrinologist who understood the connection between Hashimoto’s and PCOS: “My doctor tested everything: my thyroid, adrenals, pituitary, sex hormones – the works. He was concerned about the fact I had that cyst rupture nearly a decade ago, the continued weight gain, fatigue and lack of a regular period. He knew my ‘normal’ labs displayed numbers not normal in relationship to each other and diagnosed me with PCOS and insulin resistance.” About three weeks ago, B started on Metformin. She hasn’t seen any weight loss yet, but her energy has actually increased and “the first day I felt hyper, I almost cried. I haven’t felt hyper and motivated in two years. For week four, I plan on starting up at the gym, again.” Her doctor has set three goals for her for the next three months – he wants her to regain her energy, lose some weight and for her period to become more regular. In due course, he will consider putting her on a birth control pill to further regulate her hormones. B is impatient to get rid of her hirsutism and acne, but is confident that this will be dealt with as her meds are adjusted. She is optimistic and relieved to finally receive a definitive diagnosis from a competent doctor. She also hopes to lose the weight she gained thanks to the hormonal imbalances: “At 31, which is almost a month from now, I am hoping I might be able to say I have lost a few pounds and wear my party dress.”
Click here to read a related article and view my most recent research on this topic.