TSH test not suitable for monitoring thyroid when pituitary gland not producing TSH!

Well, I'm flabbergasted!! I had TRH test in July last year and then had MRI brain scan in August to see if my pituitary gland is working properly. No follow up until October with a endo registrar who had no idea of the results and said he woud speak to the consultant and would write to me. Nothing.

Last night I checked on EMIS as my endo appointment has been cancelled twice this year and I was concerned about lack of monitoring. I have been having blood tests by the doctor who was trying to reduce my levo based on TSH test - I have been ignoring them and doing my own BH tests and have been taking Thiroyd since mid-March, with limited success.

The endo letter quite clearly states TRH stimulation test in July 2015 - sub-optimal TSH response < 0.05mU/I. Therefore TSH should not be used to guide thyroxine replacement.

Can you believe that!!! I don't know why I'm surprised!! Last blood test with nurse (annual thyroid monitoring at Drs), I asked what she was testing, she said TSH. I said don't bother as it tells you nothing and I'll buy my own blood tests. She got a bit shirty and said I don't need to do that and she can test FT4 and FT3 - she did that and the results were that FT3 was a bit low (although "normal" by their standards).

I am treating myself and seeing a functional health practioner with support. My Dr is aware that I am taking NDT (I have changed Dr, in the same practice) and that I am seeing a FHP. He has my BH results and whilst not enthusiastic, he has not said he will not monitor me. He is doing liver function tests and a ferritin test, based on what my FHP has said.

I don't know why I'm flabbergasted as I know that Drs don't read your notes before you see them and don't even look at you when you're talking to them.

I have now printed off a copy of this letter and highlighted the sentence and will take it with me to future Dr and endo appointments.

The lesson from this I would say, is check your medical records if you can. If I hadn't, I wouldn't be aware of this and would still be being guided by Dr based on the stupid TSH test!!!

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  • When I was diagnosed by TRH test my endo told me I will frequently be asked to lower my dosage by GPs who don't understand and will base prescriptions on the TSH result. He's told me I need to tell each one not to and basically teach them about secondary hypothyroidism. I guess he sees this a lot. It's ridiculous.

  • Hi Strawberrysorbet,

    It's only by looking at the letter on EMIS (that my Dr has), that I'm aware of this - no-one has discussed it with me!!! It's so frustrating that they're playing with our health. I've got a print out of the letter which I will take with me to each future appointment! It's so wrong that we have to educate our doctors. Hopefully, I'll start to see some improvement (and less arguments about lowering meds based on TSH). Hope you're getting proper treatment.

  • Fab post.

  • Thank you. I only hope it helps someone else to stop having arguments with their Dr over the stupid TSH test.

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