Hello,
My DD is 25. She has congenital hypothyroidism. For the past 5 years or so she has never been on the correct dose of thyroxine. She has a blood test every 6 months or so because it always comes back abnormal and not once in five years has she been within the normal range.
At first the GP would suggest minor dosage changes. But the bloods still came back abnormal. At one point she ended up over medicated and her resting heart rate was around 130 BPM.
Her heart rate is still at about 100 BPM at rest but her last few blood tests showed she was being under medicated and she has slowly been putting on weight (about 12kg in a year) despite no changes to diet or exercise (she gets about 2 hours of daily walking and cooks everything she eats from scratch). She also has very irregular periods and dry, flaky skin.
The GPs don’t really seem to care. They don’t want to increase her dose because of her heart rate issues but at the same time she has been under medicated for the best part of two years and they don’t seem to care about the other symptoms. Last time she spoke to the GP she asked to see an endocrinologist (which she had for her entire childhood) but they fobbed her off and said thyroxine is basically the only treatment and they just need to keep tinkering with the dose.
DD is due another blood test tomorrow and we both know it will show she is under medicated again.
I am not really sure what kind of advice I am asking for but I guess my questions are:
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Can she demand to be referred to see an endocrinologist? Neither of us understand how merely tinkering with a dose can cause such rapid changes in her TSH, T3 AND T4 levels.
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Is levothyroxine the only medication the GP can prescribe - I’ve read about some other medications?
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Should she be more worried about the high heart rate? I know I certainly am…
If anyone can share some insight or details of their experience I would be grateful.
PS sorry that turned out to be much longer than I expected!