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 We are routinely misdiagnosed, under-treated and dismissed as hysterics by doctors who are operating under outdated, insufficiently researched and, frankly, dangerous guidelines passed down by the medical powers that be.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.

doctor button

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.

If you have a comment that is related to your own health or have questions that require an answer, please leave these in the community discussion forums and not in the comments below. Thanks! =)

Flattr this!

10 thoughts on “The Plight of Thyroid Patients

  1. Jamie

    Andrea,

    Thank you for putting this grave issue with our medical system out there; it is sadly so true. It has been such a relief to begin reading your blog; I have felt overwhelmed trying to figure out how to manage my chronic illness, get through graduate school, and try to live a life that doesn’t just involve sleeping on my couch because I’m too weak to do much else. I’m 28, but have been on a medical roller coaster for the past couple of years. Finally, after three endocrinologists, a neurologist, a hematologist, and a psychiatrist (yes, eventually they told me it must all be in my head), a million blood draws, ER and Urgent Care visits, an MRI, etc., I’ve been diagnosed with hypothyroidism, a progesterone deficiency, and have MTHFR mutations on both genes 677 and 1298, creating Chronic Fatigue Syndrome symptoms. However, the doctors I have don’t instill much confidence in me. I have been treated with T4 only medication for the past 9 months and to treat the newly diagnosed MTHFR mutations, my dr gave me supplements containing non-methylated folic acid and B-12. I am exhausted and I have a long road ahead of me, and am not even sure if I’ll ever feel well enough to do things I didn’t realize I took for granted: dating, maintaining friendships, enjoying fun activities (nothing is fun when you are so exhausted you can barely think), and working a job. I’m sorry to go on, and I will wrap up by saying thank God for people like you who are helping those like me navigate this challenge and feel less alone in the process.

    Best,
    Jamie

    Reply

    1. Andrea Post author

      I’m so sorry to hear of your struggles, Jamie. I really hope that you are able to get on the appropriate supplements soon and can find a competent doctor to help you through this. Wishing you success on your healing journey…

      Reply

  2. Lizzie

    Hi Andrea
    Firstly, huge congratulations on your wonderful news.
    I was diagnosed with borderline hypothyroidism by my wonderful GP after she picked up that my previous doctor let me pass as ‘normal’ and within range but said that I was too close borderline when it comes to pregnancy and trying to conceive. As such I have been on varying doses of ERFA and am monitored every 6 weeks.
    I suffered a miscarriage at 10 weeks recently and the first thing I did was do a thyroid test but that resulted normal. I would like to check though that all I am testing each month is free t3 (keep it in the range of 3) and free t4 (in the range of 2) while my tsh is very low (.04). TSH being low is ok while on thyroid medication correct?
    I have recently done some immunology studies which suggest I have a homozygous gene which also led my doctor to investigate MTHFR and do a thrombosis profile.
    I am optimistic that we will be pregnant again and successfully carry our baby to term healthy, but did you feel that use of blood thinners and closely monitoring your thyroid (free t3, free t4) was the most important test that you did?
    Thank you for your wonderful work in creating awareness.

    Reply

    1. Andrea Post author

      Hi Lizzie, Thanks so much for your comment and well wishes…I’m very sorry for your loss. Have you tested for antibodies? Yes, most people on an optimal dose of thyroid replacement medication will have a suppressed TSH.

      While thyroid testing is extremely important and proper thyroid levels are extremely important in pregnancy, it is difficult for me to say that it was the *most* important. For me it was a combination of several tests and treatments over the course of a year. I don’t know that any one of them would have done the trick on their own. We are all very individual, however. I’m not sure how much of this blog you have read, but I’ve detailed all my steps in the diary section. Good luck!

      Reply

      1. Lizzie

        Thank you Andrea.
        I have just done an immunology test and have found out that I am a homozygous mutated 4G/5G and have slightly high CD3 but slightly low CD19+CD5. My antibodies tested are ok, all negative.
        I will see my doctor if I need any further medication. But keen to hear if you had any of this?

        Reply

        1. Andrea Post author

          I’m not familiar with 4G/5G – what is that? Did you mean a high FSH on CD3 and low progesterone in your luteal phase? Yes, I had both of those issues. The FSH was off for me because of my thyroid imbalances. Low progesterone was an issue and I had to do suppositories for that for the first 11-12 weeks of my pregnancy.

          Reply

  3. Shelly

    Excellent article and one I can certainly believe! After three doctors telling me nothing was wrong with my thyroid levels despite obvious symptoms, I requested a rheumatologist test my anti-bodies just for reference. He fought me on it but finally gave in and the results showed they were off the hook and referred me to an endocrinologist. When asking the endo how to reverse the anti-bodies he replied, “We don’t yet know enough about how to solve that but don’t worry, there are medications available when your thyroid levels get bad enough.” I just kind of sat there dumb-founded and was grateful for my Mom being present to prove I hadn’t heard him incorrectly.
    Thanks to a gifted nutritionist, I later determined that I was Copper and Mercury toxic and after a year of cleansing, my thyroid anti-bodies (and symptoms) have greatly improved. The fibromyalgia and immune challenges I was experiencing thanks to the metals have decreased as well. I also discovered a functional medicine practitioner later who was able to help me find MTHFR and is aiding me to keep those detox pathways working top notch and the metals from building up.
    I greatly appreciate and enjoy your writing and wisdom. It has been a God-send as I learn all the MTHFR and snp stuff. Thank you for all you do!

    Reply

    1. Andrea Post author

      Thanks for sharing your story, Shelly! I love hearing stories of how people got to the root cause of their autoimmune issues – so happy that you conquered that and also found an awesome doctor. Hard to do! Thanks for your lovely comments – really happy to help!

      Reply

  4. Tamara Blickhan

    Thanks for all your extensive research and blogging. It’s very helpful! I commented on another one of your blog posts earlier today. I hope you have a little time to respond 🙂 Many blessings to you!

    Tamara

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *