Thank you to the American Recall Center for inviting me to write this guest blog for their November medication awareness campaign. Their own awareness article talks about the oral anticoagulant Xarelto and some of its newly discovered side effects.
by Sarah Downing, ThyroidChange Blog Editor, thyroid advocate and creator of the blog Butterflies & Phoenixes
In August of 2009, I was diagnosed with hypothyroidism and since this time I have taken various thyroid medications to manage my condition. Initially, my doctor also put me on various other medications that taught me some valuable lessons that I’d like to share with you here in addition to subsequently talking more specifically about the thyroid medication I am currently taking. First and foremost, I’d like to link to this excellent Q&A article by thyroid advocate Mary Shomon, which covers questions such as when to take your medication and interactions with other medications and supplements. She pretty much covered it all, so I’m going to focus on my personal experiences and lessons in the rest of this article.
First and foremost, trust your body. Doctors may be experts, but even they are not infallible. If something doesn’t feel right, that’s because it probably isn’t. You know your own body best and you have the right to insist that you have access to a treatment and a dosage that suits you.
Since 2009, I’ve been a thyroid patient advocate and on my journey have come into contact with many patients with many medication issues. Personally, it took me trying several different types of thyroid medications and several changes in dosage before I found one that works for me. However, in the thyroid community, the biggest issue seems to be that many doctors are not open to providing their patients with access to all medications.
There are various kinds of thyroid medications. Firstly, I need to explain that the human thyroid produces five key hormones: T1, T2, T3, T4 and calcitonin. These days, the standard medication in the US seems to be Synthroid, which only contains T4, so just one of these hormones. However, the problem is that patients with a thyroid that is already impaired frequently have difficulties converting T4 to T3, which is the more active hormone. This leaves them with continuing symptoms and suffering. Oftentimes, such patients experience relief of their symptoms on a medication known as Natural Desiccated Thyroid or NDT for short. This is extracted from pig’s thyroid glands because pig thyroids are apparently very similar to human thyroids. This medication contains all five hormones a human thyroid naturally produces (see above) and patients don’t have to worry about whether they are getting sufficient T3 through conversion of their T4-only medication because this is already contained in the NDT.
However, the issue that many patients these days are experiencing is that some doctors deem NDT to be old-fashioned (it first came into use around the end of the 19th century) and inconsistent, so that they are unwilling to prescribe it. There isn’t really any evidence to back up these erroneous beliefs however. T3, the more active hormone, also comes in a synthetic form known as Cytomel. There are doctors who are also uncertain about prescribing this because they are concerned about heart palpitations (which can occur if a patient is overmedicated on T3) and some doctors simply feel that T4-only is “tried and tested” (even though it didn’t come out till decades after NDT) and should be good enough for their patient.
I have sometimes seen thyroid disease referred to as the “poor stepchild” of endocrinological diseases. Much research and funding seems to be invested into diseases such as diabetes, but many thyroid patients feel that their disease is simply not taken seriously. This is rather tragic considering the widespread suffering I have witnessed from speaking to countless patients on and offline.
But the type of medication appears to be not the only problem that patients encounter. There is simply no single consensus on how to diagnose thyroid disease. Some doctors appear to be obsessed with a lab test known as the TSH, which is actually a hormone that is produced by the pituitary gland to tell the thyroid to rev up or slow down its hormone production, depending on whether you are hypothyroid or hyperthyroid. A 2002 study by the National Academy of Clinical Biochemistry (NACB), which excluded people with thyroid disease, showed that 95 percent of the population tested had a TSH level between 0.4 and 2.5. Consequently, the NACB recommended reducing the reference range to that. Despite this, however, there are many doctors and labs who insist that unless a patient’s TSH exceeds 5.5, they are perfectly fine. As you can imagine, this leaves many people undiagnosed.
But that’s not the only problem. It is possible to have thyroid disease and a perfectly normal TSH. This sometimes occurs in the beginning stages of thyroid disease when it takes a while for your TSH to catch up with your disease progression. So you are experiencing symptoms in real life, but on paper you are diagnosed as perfectly fine! For this reason, many patients I have talked to, myself included, have found that the best way to treat thyroid disease is to use lab tests in conjunction with monitoring of symptoms. After all, what good is a treatment doing if the patient is still suffering due to persisting symptoms even if their blood results look fantastic?!
On that note, I would like to talk about two other medications that my doctor insisted on prescribing me, which in hindsight I feel did more harm than good because I believe they were unnecessary. Since I was 18, I have had what are known as elevated androgens (male hormones). These are usually accompanied by very specific symptoms such as acne, abdominal obesity, insulin resistance, hair loss, hirsutism and whacky periods (lack of or irregular bleeding). In my case, my elevated androgens never caused me any symptoms. You may be familiar with this clinical picture if you suffer from the condition known as PCOS, which is becoming increasingly prevalent. I believe hormone imbalances are becoming increasingly prevalent for reasons such as the increased stress in our society, environmental pollution and the unnecessary hormones and chemicals that are being pumped into the food that we eat, particularly in the US. On a side note, PCOS is also more common in patients with hypothyroidism.
In my case, I was put on the birth control pill to lower my androgens, which it never did. That said, even before taking it, I never experienced the above-described symptoms or anything related. When I was diagnosed with hypothyroidism, we revisited the topic of my excess androgens and my doctor referred me to a gynecologist who was nothing short of obsessed with diagnosing me with PCOS and pressuring me to take various medications in a desperate bid to lower my androgens. Again, I had no symptoms and the excess weight I had gained was clearly due to hypothyroidism as my weight balanced out as soon as I was put on thyroid medication. At one point, my doctor had me trying yet another medication, in this case Androcur, which – no joke! – caused such pain and headaches that I was barely able to move off the couch, and even caused me to lose a customer due to suffering from a migraine whilst struggling to meet a deadline. I discontinued it of my own volition, unsure as to why I was taking it in the first place because my androgens were still not causing me any symptoms.
A while later, I consulted with my doctor about discontinuing the birth control pill altogether, which I no longer needed to be on at that time. Every gynecologist I had talked to about this had been very much on the fence and concerned that I would develop symptoms of hyperandrogenemia (excess androgens) or PCOS. I however was extremely doubtful because I had never had them in the first place, and in general have become very reluctant to put a medication in my body that my body is actually going to have to detox. Ultimately, I made sure to wait until my thyroid had balanced out and discussed it with my doctor. I also had a check-up with my gynecologist beforehand and informed her that I had decided to discontinue taking the pill, which had never balanced out my androgens in the first place and didn’t improve my symptoms as there were none to begin with!
The result? Precisely a month later, my period started up again spontaneously and I didn’t suffer any of the afeared symptoms whatsoever. Indeed, I’m happy that I’m no longer taking a medication that is known to cause a whole host of risks and symptoms – whilst I was taking it, my thrombocytes actually went up, causing an increased risk of thrombosis, so very common in those who take the birth control pill. Over three years later, I am still thriving, have no symptoms of elevated androgens and know that I made the right decision. The lesson in this is to listen to your instincts about your body, but also to recognize that just because your blood levels show something as “abnormal”, it doesn’t necessary mean it is abnormal for you or that it will cause you problems. My motto today is that I am only willing to take a medication if I have a specific reason for taking it (i.e. symptoms). Otherwise, I feel I am doing more harm than good to my body. It is also interesting to note that whilst I had elevated androgens, there were no other abnormalities in my blood tests such as elevated blood sugars, uric acid or other elevated metabolic tests, as is often the case with this particular pathology. That confirmed my suspicions further that I was not suffering from PCOS and that my particular levels were not pathological for me personally.
Talking of more harm than good, around the same time my doctor also put me on Metformin for suspected PCOS, which I do not believe I have ever had because of my utter lack of symptoms. Doctors since then have concurred with my assessment of this. The Metformin caused me intense gastrointestinal distress. Ironically, I was put on it in part to lose weight (which may have accumulated due to my hypothyroidism), but I suffered from constant diarrhea and bloating and life was not fun at all. I should mention that on my thyroid diagnosis I also had prediabetes, so that was another reason for my doctor to try me on the Metformin. However, I very much suspect that these elevated blood sugars (A1c of 5.7) were due to my imbalanced thyroid and would have liked my doctor to give my thyroid medication the chance to balance out my whole body before putting me on a medication which is known to leach your body of B12 (it says so in the packaging insert!) and cause awful side effects such as those described. In fact, a short while later, I began suffering from awful gastrointestinal symptoms even after discontinuing the Metformin. It took me years to heal my gut and, looking back, I wonder if the Metformin played a part in damaging it in the first place! I still suffer from a B12 deficiency too. Really makes you wonder …
So my lesson from this is that you should think twice before randomly agreeing to your doctor putting you on a new medication because some side effects can really screw up your life. Again, think long and hard about whether you need it, and in my case if there is a less damaging alternative, I will generally opt for that. I’m not saying to ignore symptoms or pathologies, but in my personal experience medications are not always the answer. Recently, after being put on a multitude of supplements, my blood tests showed elevated liver enyzmes. My doctor freaked out (although they really weren’t excessively elevated) and insisted I see a liver specialist. I had other plans because I knew from my husband’s liver issues that there were many natural ways to deal with this. Instead, I opted to take liver support supplements and, to my doctor’s surprise, my enzymes had significantly decreased by our next blood draw. So, again my advice to you is to listen to your instincts, but also to consider first trying a more natural remedy if you have the option.
Hopefully, this has helped those of you reading this. Don’t forget that you do know your own body best, although some doctors will arrogantly ignore your wishes and suggestions. Find a doctor to work with who treats you as a partner rather than someone to patronize like a child. There are too many doctors out there like that and you are paying for a service, so you deserve the best for your body. The good news is that there are also some really gifted practitioners who truly care about their patients and working with them eye-to-eye. If something seems like it merits treatment, don’t ignore it, but do explore all your options. Pharmaceuticals are chemicals that your body has to detox, so educate yourself on all potential side effects because oftentimes your doctor will fail to mention the side effects to you.
Listen to your instincts. If you feel like you need a dosage adjustment or to try a different brand of medication, don’t be afraid to bring this up with your doctor. A good doctor should be open to trying whatever they need to to help you get well. Also, be aware that many people have sensitivities to certain fillers in medications. If you have a food intolerance/allergy such as dairy or gluten, be aware that many medications and supplements contain gluten and/or lactose. In terms of supplements, I have generally found that the better the quality, the fewer the fillers. On the topic of fillers, I’m currently taking the thyroid medication WP Thyroid, which contains just three fillers. It works for me, but if you are particularly sensitive, it’s worth looking into procuring a customized medication from a compounding pharmacy, although this does tend to be more expensive.
Do you have any questions on this article or anything you would like to share with me. If so, I would love to hear your comments.
Be well, be your own best advocate and be proactive!
Yours in health,