As you will know if you read my previous article Help! I’m turning into a Man!, my former gynaecologist diagnosed me with PCOS or Polycystic Ovary Syndrome. This was in fact curious and puzzling to me because PCOS was ruled out for me several years ago when my insurance charged me a massive surcharge for supposedly having it. However, they lacked evidence to back this up because I didn’t have the symptoms and the only isolated symptom I did have was elevated androgens or male hormones.
When I was diagnosed with this back in my early 20s, I didn’t actually realise the implications and how potentially serious this condition can be. Truth be told, I was not diagnosed with PCOS, but rather with elevated androgens or hyperandrogenaemia (see my previous article for the whole story) and I wasn’t really that worried as I didn’t have noticeable symptoms. Like many girls of my age, I was already on the birth control pill, so they just switched my pill to one that is supposed to be more effective at treating elevated androgens, an anti-androgen contraceptive, and that was that. No more testing for years. Nothing. I was blissfully unaware of what my hormone levels were and frankly I didn’t really care either because – as I said – I never had symptoms and I figured that the pill was balancing my hormones and keeping them under control anyway.
Well, when I got diagnosed with thyroid disease in August of 2009, this changed. Naturally a good thyroid doctor will make sure that all your hormones are balanced and of course I mentioned to him that I have a slight imbalance of my male hormones. My thyroid doctor is excellent and we have had nothing but good experiences with him – our health has improved dramatically since we have been seeing him, so it goes without saying that I trusted his judgement when he referred me to a gynaecologist with whom he works closely to treat his thyroid patients, many of whom also have PCOS or other sex hormone imbalances. Because I was desperate to get to the bottom of my hormone imbalance (previous gynos didn’t know or didn’t care) as I had been told it might affect the functioning of my thyroid, it was a case of “grin and bear it” when I realised that Dr H was far from easy to deal with. His Jekyll and Hyde personality also meant that he was easier to deal with in some of my subsequent appointments and I knew that I had to give him a chance as correcting hormone imbalances takes time.
The first time I saw him, I was quite offended to say the least. He casually informed me that I had “a type of PCOS” and when I asked him how that could be the case without any symptoms, his evil reply was: “You do. You’re fat!” Well, after I went into melt-down and he actually made me cry because I cannot and will not stand for that kind of abuse – and this guy truly is abusive as my fiancé will testify (more on that later) – he basically told me that I needed a wake-up call.
Dr H is a nasty, nasty man and to make matters worse he suffers from his own insecurities, which he loves to project on others. In a nutshell, his daughter and mother had suffered terribly from PCOS, so that he seems to think a hell of a lot of people have it when this diagnosis doesn’t always fit. He told a friend of mine she had it before he had even tested her hormone levels and, lookie here, they came out normal. He even switched her pill before testing her hormone levels, which is totally irresponsible! When I picked up her lab results on her behalf, I read the comments of the lab doctor in horror: “C’s main problem is her severe overweight, which she urgently needs to reduce, but considering how overweight she actually is, this is easier said than done”. The lab doctors were really quite awful. Every time I had my blood taken they would calculate my BMI, which is not always the most accurate measurement of whether someone is actually overweight, and there would be a classification such as “underweight/normal weight/overweight/obese”. Seeing “overweight” written every time on my lab form totally discouraged me. One time, when my androgens were not going down despite treatment, the lab doctor even wrote that Dr H should warn me to take my meds regularly … if that isn’t the ultimate in patronising treatment of patients, I don’t know what is!
Seeing as Dr H himself suffers from Hashimoto’s, you’d think he might be a bit more understanding of how many people suffer from weight issues as a result of this hormone imbalance, but no he isn’t! Instead, he tortures himself by eating an apple a day, which may partly explain why he barks at and insults so many of his patients and can’t even stand crying babies in his practice although he is a gynaecologist. In fact, he holds himself up as a paragon of nutritional virtue and basically told me I should be eating next to nothing and needed to see a dietician. Sadly, it is actually the case that you need to eat a certain amount in order to burn off anything and many dieticians may well tell you that you are not eating enough.
Dr H also had an incredible talent for noticing symptoms that nobody else did, or – dare I say it? – that didn’t even exist. Looking back, he commented on my skin, which has rarely caused me any problems, he commented on my “piercing, staring eyes” and said this indicated Thyroid Eye Disease, he commented on the fact that I supposedly had cysts on my ovaries. Only once did one of the many gynos I saw comment on cysts on my ovaries, which had actually disappeared by the next appointment. So I suspect if he ever did see cysts, they were most likely transient, but he hung on to that “diagnosis” like a bloodsucking leech clings on to the skin.
Dr H also claimed I had bone density issues, but never showed me the test results or specified exactly why – apparently because of my elevated androgens I was at risk of having just about any bloody condition! As a result, he put me on calcium without even bothering to check my calcium levels, which had always been fine. When I told my thyroid doc this, he took me off the calcium – apparently, excess calcium can cause issues too, which is something I had been concerned about and hence the reason I brought it up with him. At my request, he also checked my bone density and, surprise, surprise!, it was absolutely normal.
As for my fiancé, Corey, who also has Hashimoto’s and non-alcoholic fatty liver disease, he more than once made a derisive comment about his “fat tummy” (bastard!) and one time he even accused him of suffering from hair loss and also insisted on doing a test to check for gynaecomastia (commonly known as “moobs” or “man boobs”), which he claimed was a risk because of the fatty liver.
Because of my supposed ovarian cysts, Dr H would insist on doing an ultrasound once a month and sometimes more! His office was half way across town, so I often took a taxi to make sure I got there on time and avoid the stress of having to drive or use public transport when faced with my busy schedule. He also insisted on checking my hormone levels once a month, which doesn’t give them time to adjust and I felt that the frequent forced appointments were making my condition worse by causing me additional stress. I feel sick to think how much his bills added up to in total, but I paid them and thankfully so did my insurance, hoping that at some point all this hassle would actually pay off because he would correct my hormone imbalance, which he had meanwhile persuaded me was very serious and could cause serious symptoms.
The first thing my thyroid doctor and my gyno did to achieve this goal was put me on Metformin, a blood sugar-lowering drug which is deemed to improve insulin resistance and lower blood sugars, which are often the root causes of PCOS. It’s frequently used as a treatment of choice for PCOS and is said to lower testosterone. However, my blood sugars were extremely borderline – with an HbA1c of 5.7, I now know that some doctors would have declared me balanced (however, because our doctor is a thyroid doctor, I think he is more proactive and prefers to get the blood sugars even lower in order to make sure that his patients don’t develop diabetes later on – thyroid patients are known to be more prone to blood sugar issues).
For quite some months, I was put on the maximum dosage of Metformin (3000 mg) and I had horrific side effects, as is often common with this medication. Permanent irritable bowel and diarrhoea plus bloating. The sad thing was that although I successfully dropped a few pounds (a common side effect, probably related to the lowering of the blood sugars), I couldn’t really appreciate my newfound weight loss because I was so bloated I felt like I was pregnant! It was horrible and I know from talking to people that many, many people suffer these symptoms.
In fact, later on when my fiancé was diagnosed with elevated blood sugars (or hyperglycaemia/prediabetes), I switched him to cinnamon capsules. Meanwhile, I had had chance to do more research and read that cinnamon is supposed to be highly effective in lowering blood sugars – this seems to have been the case for Corey and I, but it’s been minus the side effects. Corey refused to take his Metformin regularly as it made him sick as a dog with permanent diarrhoea, but now he takes the cinnamon every day.
I have the Metformin to thank for a few pounds of weight loss, a drop in my blood sugars and triglycerides, but also for a Vitamin B12 deficiency, which is now balanced out thanks to an excellent multivitamin supplement that I have been taking. It’s actually the same one thyroid patient advocate Mary Shomon recommends and it’s specially designed for people with illnesses such as thyroid disease, Chronic Fatigue Syndrome and fibromyalgia.
Once I was able to lower my dosage of Metformin, I was certain that my levels of male hormones had to have gone down, but to my chagrin this was not the case. As a result, my gyno tried me on a pill named Visanne that gave me extra oestrogen. He claimed that this wouldn’t put me at risk of thrombosis (taking extra oestrogen such as that contained in the pill does put you at risk of thrombosis, but he made out that there was nothing to worry about). Incidentally, my thrombocytes did go up when I started taking the Visanne …
The next experiment Dr H tried was to put me on Androcur, an anti-androgen medication. The first day that I started on this medication, I couldn’t even peel myself off the couch and had terrible joint pain and even migraines (which is something I never get otherwise). I stuck it out for a month. After that month, I told Dr H I didn’t want to continue taking it, so he told me to go off it which I did. Sadly, because I didn’t have any damn symptoms, none of these medicines with their excruciating symptoms made me feel any better – if anything, I felt like I was taking a step backwards after I’d finally made so much progress in regaining my energy.
After a while, I started getting suspicious and actually doubting Dr H’s diagnosis. Repeatedly, Dr H told me we were making great progress although my androgens were actually increasing. When I questioned him on this, he told me I worry too much. Well, it’s a good thing that I do because otherwise I wouldn’t have noticed the increasing number of discrepancies. In addition, my alarm bells went off when he blatantly forgot which medicines he had put me on. It got to the point where I would have expected some improvement and just wasn’t seeing any. None of the classic PCOS treatments (other than the Androcur that made me incredibly sick) had managed to successfully lower my androgens: I had lost weight by rigorously working out twice a week with my personal trainer, I had taken the maximum dosage of Metformin, I had lowered my blood sugars and triglycerides. All in all, one might say that I had made a hell of a lot of progress, with the result that any of the symptoms that one might have attributed to PCOS had now gone. I’m still working on losing a bit more weight, but I’m back to a US Size 12 – in fact, I recently rewarded myself with six pairs of jeans – several of which were from Baby Phat Juniors. At 5’4” I can shop in the Junior section and actually get jeans that are the right length and also look much snazzier – score!
When I finally got round to addressing my doubts with my thyroid doctor, he decided to test my levels himself and I can tell you that there was a severe discrepancy between his levels and those of my gynaecologist, particularly as the blood tests were done by both doctors on the same day around the same time. Now I trust my thyroid doctor to know what he is doing, but based on my gyno’s track record him not so much.
It all came to a head when I got a call from my gyno telling me that my androgens had gone up again and that we had to do something. He had been in so much of a tizzy that he had called my thyroid doctor while he was on holiday without informing me first. At that time, neither of them knew about the severe discrepancies between the blood levels measured by the gyno and those measured by the thyroid doc – in fact, those of the thyroid doc showed my levels to be almost within range, so based on those it looks as if I had made some improvement, but who really knows because hormones are subject to so many fluctuations anyway. My thyroid doc has tested my levels since then and they have always been lower than any levels measured by the gyno.
Shortly before I got the call from the gyno, I had been to his office to pick up the test results of my friend C, only to have his bitchy receptionist once again shout in my face. She’s a rude and aggressive know-it-all. One time, when my triglycerides were still slightly elevated, she told me on the phone that I had to eat less fat. Offended, I told her that they are probably elevated as it is a well-known symptom of an underactive thyroid and that I do in fact eat a healthy diet and exercise, but she wasn’t having any of that as she was “fed-up of people blaming symptoms on their thyroid!” When she snapped at me for no reason when I went to pick up my friend’s lab results, that was the last straw. I mentioned my issues with my gyno to one of my thyroid doc’s receptionists who then told me about another recent incident where he had been unable to control his temper and had dared to call two of his assistants whores! It was then that I decided to dump him.
As a result, when Dr H called me about my levels I plucked up the courage to tell him that I wasn’t happy that none of his treatments had worked, that there were severe discrepancies between his and my thyroid doc’s blood tests and that I now wished for my thyroid doc to be in charge of balancing my androgens. Note that I would never have become a patient of my gyno had my thyroid doc not recommended him, but the back-stabbing prick had the gall to claim that my thyroid doctor was lying to him. I told the gyno I wanted to go off the pill and he petulantly exclaimed: “do that and you’ll see what will happen!”
Evidently, despite me dumping him, that gyno was not going to let me be. He ordered a report from his lab that I had never even requested and cheekily charged me for it. The report basically indicated that the lab doctor thinks I should be on Metformin, the anti-androgen contraceptive pill and Androcur – all the meds I had already extensively tried and that had failed to bring my androgen levels down. The lab doctor, who had never even seen me, “suspected that I had insulin resistance”, although this had been ruled out more than once by tests from my thyroid doctor, and even if I had had it at some point, it would have been improved by the Metformin and the cinnamon.
I ignored the letter as I find it unprofessional when a doctor tries to diagnose me based on blood results alone, which is what caused this whole damn mess in the first place. Shortly afterwards, we saw our thyroid doc and the gyno had the cheek to gate-crash our appointment by sneaking into the doctor’s office while we were waiting at his desk. He went on and on about the report, pointed at my hips again and made the usual derogatory remark about my androgens making me fat and when I once again addressed my desire to go off the pill he insisted that it didn’t have any risks, couldn’t cause elevated thrombocytes (i.e. risk of thrombosis, which I know to be untrue, also based on my own experience of how my elevated thrombocytes dropped significantly as soon as I went off the pill recently) and in fact has benefits of reducing your risk for certain cancers. This may be true, but conversely it also increases your risks of other cancers and of high blood pressure, weight issues, blood sugar issues and other symptoms.
I had decided at this point to try going off the pill because I had noticed that it hadn’t successfully lowered my androgens despite being on it for over 10 years and on top of that it didn’t make sense to me that any potential PCOS symptoms had improved dramatically despite the fact that there had hardly been any change in my androgens. My logical conclusion was that it wasn’t in fact the androgens that were causing a problem. Why couldn’t it be possible that these androgens levels are normal for me or, indeed, that they are not going to cause any symptoms? However, any time I asked Dr H this, he empathically denied it. I’ve had them for over 10 years now and even went off the pill in the past. I did initially have terrible acne as a temporary side effect of my hormones struggling to balance themselves. I now know this to be a common side effect for many women, even those who – like myself – have never before suffered from acne. Ultimately, my acne went away and stayed away, which is why I don’t think it is connected to PCOS and even though at the time my androgens rose to a much higher level than they are at present, any PCOS side effects remained absent.
My thyroid doctor has assured me that now that my thyroid hormones are more balanced, I should hopefully not get this problem this time round. I also found a very interesting article, explaining how hypothyroidism can cause skin issues, including acne. As a result, what my thyroid doctor told me seems to make a lot of sense as to why I was more prone to acne back then. I am hoping and praying that I won’t get it this time round. I’ve been off the pill for about three weeks now. I talked to my sister-in-law and she recommended I take a dandelion supplement to flush the toxins from the pill out of my body and gently cleanse my liver and tissues, thus accelerating my body’s balancing process once I go off the pill. I also read about this in a rather interesting thread on this very topic. I found a supplement that sounds effective on my friend Lori’s favourite site, Swanson Vitamins, and it also contains yellow dock and milk thistle. Yellow dock is another plant (in addition to dandelion) known to be good for the skin and I’ve read that doing a liver cleanse can help prevent the acne that you might get from your hormones going haywire when you initially go off the pill. I’ve read that acne can sometimes be an indication of liver issues.
I’m planning on taking the liver cleanse capsules for six months max. They say it can take up to three months for acne to appear if it is going to and I’ve been told that we really need to wait six months to be sure that I’m not going to get any PCOS symptoms and completely rule out this diagnosis. In addition to this, my doctor prescribed me a homoeopathic remedy that is supposed to boost the hormone-balancing effect of my thyroid meds.
My new gyno is lovely – she seems confident that I won’t suffer severe symptoms and knows that there are women out there with elevated male hormones who go through life without any problems whatsoever. She mentioned that it might be to do with their receptors. The androgens are like the keys and the receptors are like the locks – everyone has different kinds of hormone receptors and hence different reactions to elevated androgens. Some women apparently have issues even if their androgens are still in range, but at the high end of the range. The one thing my new gyno said that made me want to hug her and was a complete turnaround of my ex-gyno’s philosophy: “I’m more concerned about how you’re feeling and whether you have any symptoms. If your androgens are elevated, but you don’t have any symptoms, as far as I’m concerned you don’t need to be on the meds”. She also told me that the elevated androgens can be related to the thyroid imbalance without necessarily being PCOS and my thyroid doc wondered whether or not my androgens have just been elevated so long that my body has got used to dealing with them as the norm.
Before I decided to dump my ex-gyno, I had done some research into natural alternatives for PCOS treatment. As one of my favourite sites says: “who wants to be on the pill for life?” I became increasingly aware of the risks and potential side effects of the pill. As someone with Hashimoto’s, I am more prone to bloating anyway and I can’t help thinking that the pill can potentially make this worse. In addition, whilst I have fought to lose the weight I put on from Hashi’s, I’d still like to lose more and feel as if my weight loss is slower than I would like. I know that the excess oestrogens in the pill can indeed impede weight loss, which was another reason for me to go off it. On top of that, I suspected that my non-existent libido might improve if I went off the pill – time will tell (btw, lack of libido is also linked to hypothyroidism, but as my thyroid is becoming increasingly balanced and it’s not improved, I suspect that the pill may be the culprit). Furthermore, I had elevated thrombocytes and didn’t fancy having to deal with a diagnosis of thrombosis in addition to everything else. When you take so many pills every day, you just get to that point where you want to cut down your meds to as few as possible. At the moment, I don’t even need the pill for contraception, my insurance won’t pay for it although it is deemed medically necessary and, seeing as I never had symptoms in the first place, I’m not sure why I need to be on it. My new gyno seems to concur with that assessment of the matter.
Back to the topic of alternatives – after doing extensive research, I read that saw palmetto is frequently prescribed to lower excess androgens and also to help with side effects of PCOS such as acne and hair loss. It’s a very well-known treatment for prostate cancer and is becoming increasingly known as a treatment for PCOS. As a result, I purchased a six-month supply of saw palmetto/pygeum/nettle root from one of my favourite sites on PCOS, which I actually found when writing my first PCOS article. I’m not entirely sure that I need it anymore, but I will take the six-month supply and I’ll certainly be interested to see whether or not it lowers my levels. The only thing that did lower my levels so far was the medicine Androcur, but that was the one that made me horribly sick and the pay-off wasn’t worth it as I had no symptoms that the medicine could have potentially improved.
My ex-gyno made one last-ditch attempt to win me back as a customer, but my fiancé Corey wisely told him that we are not interested. I like my new gyno – she doesn’t seem to want to rip me off with unnecessary testing like the ex-gyno did and neither is she obsessed with the blood levels without testing for actual symptoms. She actually treats me like an informed human being and is very empathic as doctors go. I feel positive for the future, but will keep you posted on any developments. Ultimately, I suppose it’s a case of PCOS or not PCOS? – that is the question. Well, I rather hope that all our suspicions are right and that everything is going to be just fine. My new gyno seems optimistic and I know that I now have everything much more under control and am much more aware of what is going on with my body, which is so vitally important when you are chronically ill.
Until next time!