Monday, 20 March 2017

The Doctor is not always right

If only we could all have access to Dr. House & his diagnostic team...!

A recurring theme I often read in comments posted online by thyroid patients is that, when their lab results come back showing TSH within a 'normal' range, the doctor makes a sweeping statement to declare them 'fine.' The numbers on a piece of paper apparently overrule the symptoms we are oh-so-strongly feeling.

I, too, have been on the receiving end of this - rather lazy and quite frankly dismissive - 'but your TSH is normal so you are fine' diagnosis. I knew I was not fine at all. What I wished I could do was invite that particular doctor to try living with my symptoms for a week, and then tell me I was 'fine'.

After my post-op care had been completed and my scar was healing up nicely, I was handed over from the mightily capable hands of my surgeon, whom I trusted implicitly, to the hospital's in-house endocrinologist. Supposedly an expert in thyroid conditions.

From my very first referred appointment I felt uneasy with him, and I got the impression that the thyroid was probably his least specialised element of the endocrine system - perhaps understandable when living and working in a country with one of the highest rates of diabetes in the world. In my head I was questioning the logic he used at explaining away my symptoms; ok, I know I'm not anywhere near being a doctor and he has studied and practised for a very long time, but I have also done my due diligence into thyroid conditions and I'm not entirely clueless. But, it was still early days after my surgery, and I was willing to go along with his suggested course of action in the beginning, which was absolutely nothing. No medication. No treatment. No further testing.

Having thrown myself back into work, I tried to carry on as normal, but as the weeks passed I just knew I wasn't able to function as I previously had been. I was exhausted. ALL. THE. TIME. My motivation was zero. Even my appetite had waned immensely and my weight was dropping (not something you would expect in someone who should be hypothyroid).

I went back to the endocrinologist. Again, he told me my TSH was normal. I complained of having slightly dry skin compared to usual, and that my body hair - which had been banished months before through a successful course of laser hair removal - was growing back. He took these mentioned symptoms, without any further testing, and diagnosed me with PCOS (polycystic ovaries).

My gut instinct was that he was wrong.

I grappled with it in my head for a few days and did some more online research, before deciding to book an appointment with the very first General Practitioner I had seen at the start of my thyroid journey; the one who had discovered my nodule in the first place. He disagreed with the PCOS diagnosis immediately.

This was the first time anyone had even thought to test my Ferritin and Vitamin D levels, which, in fact, work hand-in-hand with thyroid function. The GP called me back later the very same day with the blood test results, saying he had to inform me immediately. "I think we need to enter you into the Guinness Book of World Records - this is the lowest Vitamin D reading I've ever seen in a living person," he said. Anything under 30 is considered a deficiency. 50-70 is normal. 70-100 optimal.

My Vitamin D level was 1.4.

Similarly, Ferritin - which should ideally be above 70 - was just 12.

These two simple blood tests produced two clear results and simple explanations to my symptoms. Thankfully, they also have simple treatments. Three lots of 300,000iu intramuscular Vitamin D injections were prescribed over the course of the next calendar year, as well as supplementing with a daily tablet of 10,000iu and weekly tablet of 50,000iu. An iron supplement helped to regulate the Ferritin. Within a matter of a month or so I could feel my energy levels returning to something close to recognisable, my motivation was up, and I was getting my sparkle back.

The point I want to make is simple, but not something I would necessarily have realised before going through this experience. And that is, the Doctor is NOT always right.

You have every right to research about your own condition and symptoms, and every right to challenge your doctor on what he or she is prescribing or suggesting. You also have every right to seek a second, third, fourth - as many additional medical opinions as you like. Until you find a diagnosis and treatment that you trust, you feel comfortable with, and you feel the benefit of.

I used to be shy about questioning anyone's authority or qualification, but not anymore. You are the only one living in your own body, and experiencing your own symptoms. You know when something is not right. Listen to your body - I have found that mine always has a way of showing me when it needs attention, and it should never be ignored.

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