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I got another letter from the endocrinologist today, in response to my latest thyroid blood test results.
I really don’t like receiving letters from him, truth be told. They annoy both myself and Adam (my longterm partner).
When we went to see him in January, it didn’t go too well. He lectured me about being on NDT (as he doesn’t believe it works) and sang praises for Levothyroxine, which I felt awful on.
He let me tell him everything about living with this condition, and then afterwards, wrote a letter to my doctor saying completely different things! He even said I told him I was anorexic when I never said the word, along with some other mistakes. So he’s not on the ball..
Today, I received another letter from him saying that I am now on too much thyroid medication and he suggests I drop it by 10-20%. I take two tablets of NDT a day, so how the heck am I supposed to drop it by that little? Cutting the tablets in to halves is tricky enough. They’re tiny tablets.
I’ll drop it by 1/4 of a tablet a day to test his theory that I need a little less. However, it really bothers me that so many medical professionals won’t listen or take in to account how their patient is feeling and what they’ve learnt about their own health condition. So I will be trying his suggestion as I refuse to be as ignorant as he is. It could work, it likely won’t, we don’t know, but I will keep you posted either way.
In all his correspondence and meetings so far, he unsurprisingly praises Levothyroxine, and he’s done it again in the latest letter. He says: “If her symptoms are no better after 6 weeks, it might be the time to consider Levothyroxine again, as this would be very much easier to manage”.
What the-?! Has he not listened to anything?! I no longer have any symptoms on NDT and I was so ill on Levothyroxine that I could barely work or leave the bed each day. It not only didn’t work for me but actually made me more ill. It was no easier to manage at all.
Most of us thyroid patients know that when we’re at the bottom of the ‘range’ for thyroid blood tests, we’re told we’re ‘adequately treated’, but I love how convenient it is that when we’re at the top of the ‘ranges’, it’s dangerous.
It’s as if they (not all doctors/endocrinologists’s, but a lot) think it’s better to keep us low in range but still with many symptoms, rather than go anywhere near the top of the range, even though we’re often not hyperthyroid when we’re there, we’re actually likely to be optimally treated.
Doctors, I say it so much, but please start paying attention to your individual patients, and don’t place them in the same ‘one size fits all‘ template. Whatever happened to doctors listening to what symptoms their patients had?
OK, rant over.
What has your experience with an endocrinologist been like? Have you seen one?
You can click on the hyperlinks in the above post to learn more and see references to information given.
The book Be Your Own Thyroid Advocate: When You’re Sick and Tired of Being Sick and Tired, which builds on this article in detail and recounts how I got my health back on track with hypothyroidism.