Thursday, 30 August 2012

The story so far...

Well, I've been a rubbish blogger! I've been in a bit of a hypo hole and the thought of blogging, or really doing anything much, has been kind of overwhelming. Such are the fluctuations of this illness. But I'm now much more used to things than I was a few years ago!

I recently convinced my doctor to prescribe me T3 in combination with T4 (following a year-and-a-half slog with T4) because I'm still pretty fatigued, breathless and brain-fogged (and that's just the tip of the fun thyroid ice-berg). I was diagnosed in 2008 after I mentioned to a doctor how I always felt tired and low-mooded - a TSH test was done and ta-da - I was officially hypothyroid.

I then promptly forgot all about my diagnosis.

I was told that as I didn't feel too bad I wouldn't need treatment. Thyroid problems? No biggie. I was casually shrugged out of the office. Blissfully ignorant, I shrugged too and probably just assumed it was normal to feel constantly tired. Heh, it was my first year of student life after all. Wind forward two years of long lie-ins, missed lectures, colds, infections and bouts of tonsillitis to November 2010, when I crashed. Which is what was obviously going to happen. Because, had any doctor bothered to run an antibodies test, they would have discovered that I had Hashimoto's thyroiditis, which is autoimmune. Which is progressive. I should have been on treatment from day one.

I wonder whether that two-year delay (or even longer - I started feeling iffy long before I was 18 but this is such a creeping, insidious disease that I didn't really notice the changes) played a part in my apparent resistance to thyroxine, which can happen when hypothyroidism has been left untreated for a long while.

The three months after I crashed were awful. I was exhausted, heavy, breathless, nauseous and dizzy with a pounding heart on an almost daily basis. My hair was like straw and it carpeted my floor. Feeling delirious with a brain/body disconnect, I questioned life, and not in the philosophical sense..! I went from pulmonologist to cardiologist to physiotherapist but none gave me definitive answers. Treatments didn't work. Then in February 2011 I remembered I'd once been diagnosed with an underactive thyroid (...I'm blaming the brain-fog for my forgetfulness...). I started on 25mcg thyroxine and eventually increased to 75mcg.

Thyroxine has actually taken the edge off my symptoms but they're definitely still there! I can find it difficult to easily draw full breaths, and at night I sleep propped up to support my 'heavy' chest. The tiredness too is not a normal tiredness. I was talking to a friend about it who jokingly (right?!) suggested I just needed a good night's sleep, and I found myself describing it as a sort of heavy, bone-deep tiredness, not necessarily sleepiness. At night I also tend to be tired but wired!  

I've been to see three so-called specialists but because all my blood work is now in range my thyroid is clearly not the cause of the same ongoing symptoms. Instead I've been offered anti-depressants and recommended therapy. Is it too much to ask that specialists keep up with research? Treatment should be tailored to the individual and based on symptoms as well as tests. I eventually went to see a wonderful private doctor, who treats like that. He first had me increase my thyroxine, but this didn't work. The next step would have been to introduce T3 under his guidance but due to cost I've decided to go it alone.

Four weeks ago I also went to see a medically trained nutritionist who has put me on a strict diet which is similar to the Paleo diet many thyroid people are on. I'm glad I've taken the plunge because a clean, healthy diet is another essential piece of the puzzle, and I'm happy to have found a really knowledgeable doctor to guide me through it. Going cold turkey was actually painless and I don't crave sugar as much as I thought I would!

I don't want to speak too soon, but I do feel as though I have more energy!

Wednesday, 23 May 2012

~Hiatus~

In case it wasn't already obvious, I'm on a bit of a break from blogging at the moment. It's just so I can focus on getting through my final university exams alive..! My body and brain are disagreeing big-time with all the extra stress. Scrap decades, my thyroid will have burned itself out by June. My winning revision technique consists of lying face down in a book and attempting to learn by osmosis. Looking forward to the middle of June when it will all be over and I can focus madly on getting my health back.

Also, SIGN SIGN SIGN https://www.change.org/petitions/endocrinologists-patients-with-thyroid-dysfunction-demand-better-care

"This petition is bringing the underground movement created by thyroid patients the mainstream attention that it deserves. This is an international patient revolution, and we demand change. It is inexcusable that patients continually encounter endocrinologists who perpetuate their illnesses by insufficient or outdated knowledge."

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)

Thursday, 5 April 2012

The basics

Hypothyroidism is often undiagnosed, misunderstood and treated lightly. This is despite the fact it can lead to other health issues such as diabetes, cancer and heart failure if left untreated.

The thyroid is a gland situated at the base of the neck. It controls energy and metabolism. It produces the hormones T4 (80%) and T3 (20%). Most of the T4 is converted to T3 because T3 is the active, stronger hormone. The hormones are used by every single cell in the body. So if the thyroid produces too little or too many of these hormones, you really, really notice! It affects every single aspect of your health.

When someone is hypothyroid they have an underactive thyroid, which means not enough hormones are being produced. The leading cause is Hashimoto's thyroiditis. Hashimoto's is an autoimmune disease which attacks the thyroid, eventually causing its total destruction. During the attacking stage of the disease, it's not uncommon for a person's condition to cycle between hypothyroidism and hyperthyroidism (overactive thyroid). The disease can be triggered by hormonal changes like those associated with menopause, childbirth and puberty. Environmental triggers like BPA and cigarette smoke can also set the disease off. The disease tends to run in families.

The most common early symptoms people have when they are hypothyroid are fatigue, hair loss and depression. Your body feels like a car trying to run on empty. A doctor will do a TSH test to evaluate thyroid function. TSH is a hormone produced by the pituitary gland to stimulate the thyroid into producing correct amounts of hormone by 'knocking' on the thyroid's door. In hypothyroidism, the TSH will knock and knock and the blood test must show a sufficiently high result in order to be diagnosed.

Standard treatment is with thyroxine. This is a synthetic T4 hormone medication and is taken daily in tablet form. The dose is normally adjusted every 4-6 weeks until blood results indicate the hormones (or more often, just the TSH...) are within normal range. Ideally, free T4 and free T3 levels should be tested along with the TSH. Most people report feeling their best when their TSH is between 0-1 and the T4 and T3 are in the upper quarter of their ranges.

The medication is taken for life and should control symptoms. Many people do fine on the standard treatment but for a significant number, standard treatment doesn't work, only partially works or stops working. They still have hypothyroid symptoms despite 'normal' lab results. Or their original TSH test will be 'normal' despite them having hypothyroid symptoms. This is where things get tricky and patients find themselves battling a tide of medical ignorance...