Not being taken seriously

I have knowingly had elevated TSH for about six years. I only started receiving treatment (Levothyroxin) in the late stages of my pregnancy, about five years ago. For nearly three years my dosage was very slowly increased to (I think) a maximum of 125 ug. Around that time I started feeling much worse, and had alternating symptoms of hypo and hyper thyroidism. I definitely did not test for hyperthyroidism, but was often very hot, shaky, and had terrible headaches. I decided to stop taking my medication and felt better in about a month. Maybe six months later I tested quite high for TSH again (I believe 11.5 or so), so agreed to start the levothyroxin again. I started at 50 ug, and over a year later I am only up to 75 ug, even though I just tested for TSH at 9.5.

I recently moved cities. My previous GP knew that I was feeling dreadful no matter what I did. I feel like my tendons are brittle, my muscles are there but painful to use, I am constantly exhausted, and my memory is terrible. I used to be a muscular and very lean 62 kg, but am now around 210 kg. I can cut down to less than half the calories I need in a day, and walk for miles, but my weight only goes up gradually over time. My GP was speaking about putting me on T3 as a trial, and referring me to endocrine, but then I had to move.

I have just seem my new GP for the second time. Today I got the 9.5 TSH result. Despite requesting it, my T3 was not tested. (My antibodies came back negative about a year ago, and once before that.) The GP seemed clueless. He did not raise my dosage above the current 75 ug, he didn't respond at all to my mention of T3, and he wrinkled his nose at my complaints of reflux. I said that my mother experienced this and it was due to low stomach acid levels when she was suffering from hypothyroidism, and I explained the classic symptoms, but he expressed surprise at the symptoms as if he never heard reflux feeling that way (severe pain in the throat and sometimes eyes and ears when at its worse), and said that low stomach acid levels should not cause reflux.

I left with a prescription for antacids and feeling completely ignored. I am only 32. I have a four year old, and I can't do anything physical with him. It hurts to climb, I have a terrible attention span, I get tired easily, and can't get up off the floor on my own. This is severely affecting our life, but I just cannot get a GP to take me seriously. I don't know what to do, but I can't go on like this. If anyone can help me find a way to get proper treatment, I would be very grateful.

4 Replies

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  • Feel so sorry for you, what a time of it you've had.

    Can you email Louise Warvill at Thyroid UK? She has a list of Drs who are thought to be helpful. Can you go privately?

    Hope you do get some real help soon

    Jenni x

  • louise.warvill@thyroiduk.org

    L

    x

  • I would wait till you see a proper Endo/doctor before taking antacids (I am not medically qualified) because due to a high TSH you are not on optimum thyroid gland hormones and reflux may be alleviated by proper thyroid gland medication.

    We have to read and learn so that we can get better and lead a normal life, not one of continuing ill-health.

  • Thank you, I will email Louise. I am not sure I can go private now, but I need to check prices and figure that out.

    I am going to refuse to take the omeprazole for several reasons: not least of which that it interferes with levothyroxin absorption, but also because it will only make me worse. I am certain that my reflux is caused by low stomach acid, and I am shocked this GP didn't realise reflux is caused by both high and low stomach acid levels. I only just graduated with an anatomical sciences degree, but I know more (evidently) about at least two body systems than this GP does. Is this common? I have seen several GPs and none of them seemed to be very well educated on what is a very common problem.

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