The Plight of Thyroid Patients

I was originally going to title this post, “The Plight of Pregnant Thyroid Patients” but since we’re all collectively suffering, why differentiate? I am constantly dismayed and shocked at stories I hear from patients seeking thyroid care and treatment, as well as by the horrors I’ve faced myself as a hypothyroid patient since birth. We are routinely misdiagnosed, under-treated and dismissed as hysterics by doctors who are operating under outdated, insufficiently researched and, frankly, dangerous guidelines passed down by the medical powers that be. Even many endocrinologists don’t truly know what they are doing with thyroid care. I don’t have any statistics on this for you. Most of what I know is based on my own experience and hundreds of anecdotal cases that I’ve witnessed online in discussion groups, where many people can get better advice than they could from the person they are paying to manage their thyroid health. But I can share some facts with you and outline the lay of the land right now so you know what to expect when you seek attention for this very important gland.

Thought I’d better include that I’m not a doctor…just thought this button was funny.

First, a (very simplified) primer on the basic terminology and testing that doctors and patients deal with in matters of thyroid. The primary measures that should be used are the Free T3 and Free T4 tests, along with the thyroid antibody panel to check for the common autoimmune conditions Hashimoto’s thyroiditis (for hypothyroid) and Graves’ disease (for hyperthyroid). Reverse T3 is also helpful as a body that is receiving too much T4 will produce Reverse T3 to protect itself, and simultaneously impact its ability to use T3. The thyroid itself produces the hormones T1, T2, T3, T4 and calcitonin, with T3 and T4 being the two most commonly discussed and tested for. T4 is a storage hormone, which can be converted into the active hormone T3 that is actually used by the cells. Thyroid stimulating hormone (TSH) still sadly rules the roost, however. This is a pituitary hormone that, as its name suggests, stimulates the thyroid to produce more hormones as needed. TSH cannot make someone hypothyroid (barring pituitary disease that causes widespread bodily dysfunction), nor can it make someone hyperthyroid. That last point is extremely important in understanding the aggravation and abomination that is thyroid care today.

The vast majority of doctors labor under the assumption that the TSH is the end all be all indicator of thyroid function. Most will look at the Free T4 results as well, but if that TSH is in range will not proceed with further testing, add or increase medication or make a proper diagnosis of thyroid dysfunction. In this wonderful paper by Eric K. Pritchard, the major shortfalls of diagnosis, treatment and reference materials are explored in detail. A primary mistake is to use T4-only medication in the treatment of hypothyroidism. Pumping up a person’s T4 levels with the use of levothyroxine (T4) drugs like Synthroid can often bring the TSH into “normal range.” To the doctor, the problem is then solved and the patient is sent away to continue suffering from symptoms. This was the treatment prescribed to me before I knew better for the first 33 years of my life. For many of us, treatment with T4 drugs is inadequate because our bodies struggle to adequately convert the T4 to T3. And a high T4 to low T3 imbalance causes much misery indeed when it comes to symptoms (ideally most people feel best with their Free T4 in the mid-range and their Free T3 in the upper quarter of the range). Too much T4 also causes the Reverse T3 problem that was discussed earlier. The alternative is to add in a synthetic T3 medication, like Cytomel or, ideally, to take a naturally desiccated thyroid medication (NDT) like Armour or Nature-throid. But these treatments are not in the mainstream and are often argued against by members of the medical establishment.

Why is this? The makers of levothyroxine drugs have dominated the thyroid drug market for decades. Through financial influence, they have controlled the conversation for so long that the current practices disadvantaging patients have become dogma. If you start looking around online for studies to assist you in convincing your doctor that your T4-only medication isn’t working for you, you will struggle to find direct peer-reviewed research that doesn’t rely on outdated TSH guidelines for thyroid management. While this is changing, the vast majority of thyroid patients will still either tell you that it is difficult to find a competent thyroid doctor or tell you that they have a good one but aren’t feeling better because they don’t know that their doctor isn’t helping them. Many thyroid patients have no idea what questions to ask, what labs should be run, what optimal treatment looks like or how to stand up to their doctors. Patients have been brainwashed into accepting the same disinformation fed to their doctors: that a low TSH definitively makes them hyperthyroid, that free T3 and T4 levels need to simply be “in range” and that if they aren’t feeling better on the medications prescribed, their problems aren’t caused by thyroid or are psychological in nature. Under-medication is a common problem as well, with doctors refusing to increase dosages to adequate levels because they see that TSH becoming suppressed (note that a suppressed TSH is common when both Free T3 and Free T4 are optimal).

And who can blame the patients? We’re the ones paying the bills, insurance premiums and tax dollars to support the doctors and state medical systems that are supposed to have our best interests at heart. Why should we have to do our own research and constantly question our healthcare providers? Unfortunately as I’ve discussed on this blog, we have to these days. There are much larger financial interests controlling things. Ideally we will find one of the good doctors (and there are good doctors out there). But even that can be a minefield and things can change on you. I swore I would not get pregnant until I had excellent thyroid care providers lined up. I was very happy with the care provided by my thyroid doctor prior to conceiving. I thought he was knowledgeable and that I didn’t have to worry about anything from that point on. Unfortunately he dropped a bombshell on me at my six week appointment. I had assumed I would continue to see him throughout my pregnancy. My thyroid levels were optimal and I felt confident and in control. I asked him when we would check thyroid again, expecting that he would say to come back in three or four weeks.

Instead he replied, “June.”

It was April. My jaw dropped.

“All the OBs [obstetricians] check them every eight weeks,” he continued.

Yeah, they do. And OBs are also notorious for knowing nothing about proper thyroid care. You’re the endocrinologist, I was screaming in my head. YOU are supposed to know BETTER.

I never saw him again and instead have let my maternal fetal medicine specialist manage my care during this pregnancy. Despite being extremely good at his specialty, he is not any better with thyroid – but at least he runs my Free T3. Every eight weeks. This forces me to run my own labs in between every four weeks at a high cost to myself. Yes, I am pissed off about it and am currently trying to catch up because my levels went hypothyroid a few weeks ago (as of today my T4 is back in range but I could do better). I have been through all of the supposedly “good” thyroid doctors in my city, either on my own or having talked to friends or read reviews. They all leave people under-medicated. We have a problem where I live that the state medical board allegedly goes after doctors who perform adequate thyroid care, a practice that is not uncommon according to Pritchard. Prior to becoming pregnant I was on the waiting list to see a top notch doctor out of state, however, my appointment with him came up a few weeks after we got our positive pregnancy test and he does not take on new pregnant patients. It’s a shame because I have all my other problems under control and just need someone to manage my thyroid, which was optimal throughout my first trimester. With the current legal environment being what it is, however, I understand and respect this policy. It’s just a shame that in order to see a good thyroid doctor one often has to wait at least six months, travel a very long distance and pay out of pocket because these doctors are not usually in any insurance network. If all of this is starting to sound a bit conspiratorial perhaps we’ve hit the nail on the head. I feel lucky that I know a lot about these issues, that I have a certain degree of control in this situation and that I have people I can turn to if I need guidance. I am in charge of my own thyroid care. Most are not so lucky.

For pregnant women and those who are trying to conceive, the stakes are even higher. Optimal (not just “within range”) thyroid levels are crucial, especially prior to and during the first trimester when the baby relies on the mother’s thyroid hormone levels completely. At 12 weeks the fetus is beginning to synthesize its own thyroid hormones, but the gland does not fully come online until 18-20 weeks. Even after that time, the baby continues to depend on some of its mother’s stores. For the mother, optimal thyroid output is crucial for hormone balance and the overall health needed to carry the child. Untreated thyroid problems in pregnancy can cause serious complications for both mother and baby, such as an increased risk of miscarriage, infertility, placental abruption, pre-eclampsia and other significant concerns. Despite a substantial number of women being affected by the disease, often unknowingly, universal screening is not mandatory.

As bad as things are in the United States, let’s not pretend that treatment would be better elsewhere. I’ve lived in Australia, Norway and France, all with a similar focus on TSH and T4 levels exclusively, with little access to T3 or NDT medication. In Norway you have to actually apply to the government for a combination T3/T4 medication to be granted. So this is a global problem and, unfortunately, not one that seems to be at the forefront of the attention of the medical establishment. Like complications arising from MTHFR and other gene mutations, patient health problems continue to be blamed on other causes and widespread awareness among medical professionals is lacking. Where we go from here I don’t know, however, anyone who suspects a thyroid problem as the source of their health issues is cautioned to educate yourself as much as possible and be very vigilant about the care you receive.

Posted by Andrea & filed under Health Tips. This post has 10 comments.