Wednesday, 11 April 2012

When thyroxine doesn't do its job

There are tens of thousands of people on thyroid support groups and forums. They're there because thyroxine isn't working for them and they still have their symptoms despite 'normal' lab values. Once other issues have been excluded, doctors tend to dismiss you as suffering from somatoform disorders (it's all in your head!), depression (dear doctors, depression is secondary to our feeling ill; it is a symptom and not the cause!), hypochondria (you docs sure do a good job of making us feel like we do), or 'hysterical housewife syndrome' (there are no words).

An over-reliance on the TSH test and the use of thyroxine-only treatment leads to doctors dismissing obvious hypothyroid symptoms. And when doctors don't want to know, people will inevitably turn to the internet and go down the self-treatment route. Problem is, there's a mass of information (some good, some not so good) which can be really overwhelming for the typically already overwhelmed and exhausted hypothyroid sufferer! So this is an attempt to list the good information about how to get yourself better.

Note: None of this is meant to replace a patient-doctor relationship or the advice of a good doctor. 

The following all have supporting scientific references. (If you'd like any to show your doctor, just ask. Whether their pride will let them take a look is another matter..!)

  • Time - It can take a while for your medication to kick in; anything from weeks to a whole year. You didn't get ill overnight - likewise you're not going to get better overnight!
  • Dose - You may be under-medicated and need to be on a higher dose, despite what your blood tests say. Before the TSH test was invented, people increased their medication until they got better. The average dose used to a lot higher. The test has been proven to be a poor tool for assessing dosage. Its reference range is also far too wide.
  • Fillers - You may be allergic to the fillers in your medication. Try a different brand. Don't mix two different brands.
  • Conversion - Stress, depression, malnutrition, obesity, excessive exercise, iron deficiency, illness, and exposure to toxins and plastics can decrease conversion of T4 to T3, leading to reduced tissue and cellular thyroid levels. T3 or T3-containing medication is beneficial.
  • Receptor resistance - Stress and illness contribute to the blocking of T3 from the cells. The exact mechanism isn't known but it's thought that the T4 converts to 'reverse T3', which blocks the receptors. A slow build-up of T3 medication is needed.
  • Vitamins and minerals - If any of these are low, thyroid medication won't work properly: ferritin (iron), vitamin D3, vitamin B12, magnesium, folate, copper and zinc.
  • Gluten sensitivity - There's a strong link between gluten intolerance and Hashimoto's. Standard tests are not sensitive enough to diagnose milder forms, though they can diagnose full-blown celiac disease. Other food allergies can also harm thyroid hormone uptake.
  • Hormonal imbalances - Get your sex hormones tested. Oestrogen dominance and progesterone deficiency impairs the uptake of thyroid hormones.
  • Mercury poisoning - Check with your dentist that you don't have amalgam fillings, because they can cause thyroid problems.

Medications:

  • T4 + T3 - Some people do better on a mixture of T4 (thyroxine) and T3 medication.
  • T3 only - Some people benefit from taking T3 only.
  • NDT - Some people do well on natural desiccated thyroid, which was the standard treatment before synthetic T4 was invented. It is porcine or bovine thyroid and contains everything your own thyroid would produce - i.e. T4, T3, T2, T1 and calcitonin.

The following do not strictly have scientific bases, but people have found their symptoms resolve after successfully treating these issues.

  • Adrenal fatigue - If you have a chronic illness you're likely to have adrenal fatigue, meaning thyroid hormones won't work properly. (This is a really important issue which I'll do a separate post on.)
  • Candida - There is a link between thyroid disease and systemic candidiasis (yeast overgrowth). It is said to interfere with the uptake of thyroid hormones. Symptoms tend to be IBS and an out of control system which is allergic to everything. People have had success with the candida diet.

It can take a while to figure out your issues, and even longer to sort them out. Treatment is not based on a one-size-fits-all approach, as doctors would have you believe. It can feel isolating going this alone, but there are so many people in the same situation who you can connect with online; the support groups are amazing and I'm so thankful for them. Sometimes it feels like you'll never get better, but you will! I've read so many success stories.

Remember, it's important to carry on using blood tests to gauge where you're at, but don't let doctors reduce you to lab values. You know when you're still ill - so treating by symptoms is just as important. Don't let a doctor fob you off with anti-depressants, sleeping tablets or CBT - these may be short-term solutions but they won't treat the root cause of your symptoms!

Next post: "My story" (or something)

5 comments:

  1. Jess~ Another great blog post. So much wonderful info. You have a strong voice and a wonderful writing style. There really are SO many reasons why our medication does not seem to be working as well as we KNOW it should be. We are all so different and each of us brings a different set of circumstances to the process.

    Have you heard of the Institute for Integrative Nutrition? They offer an incredible online health coach training program. I completed the program and has been helpful for me in charting my own healing path. Their premise is bio-individuality. Sounds up your alley, based on this post.

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    1. Hi Mikelle! Thank you so much for your lovely comments and compliments :) I hadn't heard of the Institute for Integrative Nutrition before - they look good, thank you. Glad to hear the program has benefited you. Diet is the one thing I haven't really investigated yet with regards all this thyroid business... I've been shying away really because it's so overwhelming and probably out of fear I'll get even skinnier than I already am, but I realise it's more about eating healthier than anything else!

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  2. Hey Jess,

    I read your first two posts and am really impressed by how much you know:-). You really do have a great attitude and I am glad that you are being so proactive about getting well.

    Like you, I was initially reluctant to change my diet too much as I felt that I was already eating quite healthily, but as hypothyroidism often goes hand in hand with food intolerances, many of us end up changing our diets down the line. I say change things a bit at a time. Otherwise, it does become overwhelming and your new regime will seem hard to keep to.

    I did not start out gluten-free when I was diagnosed, but after going off the birth control pill developed an intolerance to gluten (which I've blogged about a lot on my site), so ended up having to go gluten-free, as well as dairy-free. Meanwhile, I do eggs in moderation and just a tiny bit of dairy, although there too I have to be careful still.

    I'm actually so despairing of the doctors in this area that I have decided to follow a Hashi friend's recommendations and start working with a nutritionist near us who also has Hashi's and treats both leaky gut/food intolerances and adrenal fatigue.

    Once upon a time, doctors used to treat their patients for adrenal fatigue and they also used to prescribe NDT because Synthroid/Levothyroxine/synthetic T4 didn't come out until the 1970s. The modern lab tests have not necessarily improved things for many of us either because way back when patients were actually treated based on how they felt rather than on their so-called perfect blood levels.

    Now and again, you may be lucky enough to find that elusive doctor who is not as obsessed by blood levels alone, but I suspect that they are not nearly as widespread as they once were.

    Good luck with getting well. You know where I am if you have any questions:-).

    Love,

    Sarah

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  3. Hey Sarah! Thanks for the comment and all the info :) A good diet really is just as important as medication in treating Hashi's... that's so true about the food intolerances - I've had mild symptoms for years but have recently been getting more of a dodgy (bloated and painful etc) stomach. Will have to look into going gluten (and maybe dairy) free. Yeah, one thing at a time. I love your Butterflies & Phoenixes site; will check out your other posts.

    I can't believe doctors used to treat adrenal fatigue! Why would they stop! I guess the same reason NDT fell out of favour... Big Pharma. Just ridiculous that we're basically left to sort ourselves out when our thyroid/adrenals go down, especially as it's something that affects the whole body. Hope all goes well with your nutritionist - sure they'll be very sympathetic seeing as they have Hashi's. If only some of the more arrogant doctors I've had the total pleasure of meeting could experience it for just one day!

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