I am being my own thyroid advocate! Thanks to everyone’s advice

[Charlie-Farley]

I am being my own thyroid advocate! Thanks to everyone’s advice. Still in the process of finding the right dose for me and Levothyroxine is being upped incrementally.

So I’ve had an NHS blood test with vitamins and just for my own interest I had another blue horizon one which agreed very closely on the results and, for me at least, showed they were comparable.

I was waiting for the surgery to get back to me. Even though I did my private test three days later I got the results back the following day (Tuesday) which confirmed what I already knew - I needed my meds upping. So I did as I’d been feeling rough anyway. I went online on the Wednesday to see if NHS results were back. They were. I gave it a day then phoned surgery- Thursday. I told the receptionist that I had phoned up about my blood test results and she looked them up and said oh yes they are normal. I told her this was normal perhaps for someone who wasn’t on thyroid medication, but not for someone who suffers with *hypothyroidism. I also told her I was into my third week of being hypo and needed my medication upping (obviously didn’t tell her I already had!). I told her the endocrinologist had advised the range which was on the system and I was still above it. The fact that it said normal on the system suggests that it doesn’t get flagged to the doctor when the tests come back and this potentially is how people slip through the net

**** I am raising this so that other people know.

I got put on triage to speak to somebody - got a call! I explained to an advanced practitioner about ranges about what we should be aiming for re my optimal dose and I explained about being into my third week of being hypo (described symptoms) and that an eight week gap between blood tests was too long as it would basically assigned me to being hypo one months out of two. Two weeks as the effect of the raised dose wore off and then potentially another two weeks before any benefit of the next medication increase kicked in.

I advised that I needed six weekly blood tests rather than eight. He did not contradict me in anyway - he got new prescription signed off with a triage GP and they did not push back on anything I said, because I was solid in my knowledge THANKS TO YOU GUYS! 😘👍

I think this demonstrates though that anyone who hasn’t read a good deal up on the thyroid and scientific papers around it could so easily been maltreated just through general medical ignorance.

It is concerning that this arbitrary labelling of tests as normal means follow up is not flagged.. If the surgeries are using this automated system to flag further treatment, it just goes to show there could be plenty of people falling through the net. You just have to be your own thyroid advocate.

There also seems to be a general ignorance on how ranges differ for those who are normal and those who are hypothyroid. I’m sure this problem exists with other conditions as well.

Thank you so much for all the help you guys have given me and I continue to grow and learn and I have already alerted a few people to this site through general discussions. ❤️