scared by NHS endocrinologist

i hope you can help me, i really don't know what to do.

i had thyroid tests done in may 2010, which showed

free t4 9.4 (9.0 - 20.0)

TSH 0.77 (0.3 - 6)

free t3 4.3 (3.8 - 6)

dr myhill recommended thyroxine and as my gp didn't agree i saw dr skinner in birmingham who put me on thyroxine increasing to 100mcg. i have now been on thyroxine for 15 weeks, and at 100mcgs for the past 7 weeks.

17 sep 2010 i was retested and it showed

TSH <0.05 (0.3 - 5.5)

free t4 25.3 (12 - 22)

serum free trilodothyronine 7.4 (3.1 - 6.8)

i saw dr skinner again two weeks ago, who was completely unconcerned by the abnormal levels and actually recommended increasing to 125 then 150 mcgs. His rational being that i was feeling better ( i am - better energy / stamina and less pain) and that an increase would help further.

last week i have been to the endocrinology dep at derby royal infirmary and seen the endocrinologist. he made it very clear that he thinks i am seriously risking my health by taking the thyroxine, risking atrial fibrillation and osteoporosis and advises i stop completely - he thinks that every hospital doctor in the country would agree with him. he thinks the original may tests showed no basis for prescribing thyroxine at all. he is investigating my raised prolactin levels with an MRI.

anyone have any advice about what to do?

6 Replies

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  • Hi - obviously I can't advise but how come they put you on thyroxine, they usually won't even when levels are abnormal!

    What symptoms did you have? & did they get better on it?

  • Because my T4 was on low side. Symptoms - muscle pain, severe fatigue, constipation/diarrhea, cold intolerance, family history of hypothyroidism. Yes i am definitely doing better now, though also taking other supplements so can't be sure what has had the effect.

  • Hello Jogallag,

    Lets get this straight, you went to the doc with a history of thyroid symptoms in the family saying you felt rough, he did tests and instead of using his clinical judgement and looking at you, he said the tests said you were well.

    So you went privately to Dr Skinner who looked at your signs and symptoms and prescribed meds to get you well.

    Then the NHS endo went by tests instead of using his clinical judgement, and he now wants you to come off the meds so you feel rough again... Ha Ha ha Ha,,,, why on earth are you listening to him? He came up with the old chestnut about the harm you may be doing to yourself... Based on what evidence?

    I would ask him in writing to provide you with references and papers to back up his statement that you are running a risk.... (doubtful he will be able to), in the meantime you should look up the risks associated with untreated hypothyroidism. When he can provide evidence, then tell him you will give it your consideration. He isn't God, he may not even be a specialist in thyroid, many endo's specialise in diabetes. Look him up on drfosterhealth.co.uk to find out what he specialises in.

    If hypo is in the family then there is a strong possibility that you have antibodies to your thyroid (hashimotos). Ask for a test to confirm this. If you have antibodies, then for a while your thyroid may be up and down, but it eventually fails. Early treatment with thyroid meds is best practice. in order to avoid all the problems which come with hypo.

    Not every doctor in the country would agree with the Endo, Dr Skinner wouldn't agree for a start. And many, many patients wouldn't agree.

    Good health!

    Nel.

  • I'm in no way medically qualified to advise you, but your May 2010 test results certainly indicate a need for treatment in my opinion. That's endorsed by your assertion that you're feeling better since being on medication. So it does seem sensible to continue with the treatment.

    Based on your September test results, I would be cautious though about increasing the dose at this time. With both T4 and T3 being above range, an increase could cause you to flip into an overdosed state and you might not even realise it's happened because symptoms can mirror those of being underdosed.

    If your symptoms persist, it's even worth considering a slight reduction in dose. Not everyone needs their T4/T3 levels to be at the very top of the range. It's a case of experimenting to see what works best for you, taking both symptoms and blood levels into account.

  • Hi, your results do sound good. Mine have never been as good as that with a T4 always at 9 -10. TSH 'normal'.

    What does it feel like to be better?

    /What does it feel like to be over medicated?

    What does atrial fibrilation feel like?

    I know lots of people with hypothyroidism but no one has ever experienced the over medication and atrial fibrilation. So none of us know - we might be scared or we might like it. Or it may be beneficial for short periods.

    You put up a very good question.

  • thanks for all the responses. just to update you all on where i'm at now...

    my next lot of blood tests showed further increasing levels of T4 and T3 and the endrinologist wrote me a letter stating how i was risking my health. he didn't provide me with any references, even though i wrote to request these, just gave me a website address which i looked at but couldn't find anything relevant on there.

    on dr myhill's advice, i cut my thyroxine dose in half (down to 50 mcgs) and on retest showed the following levels:

    TSH <0.05 miu/L (0.3-5.5)

    T4 20.0 pmol/L (12-22)

    T3 5.2 pmol/L (3.1-6.8)

    dr myhill is happy with these results. i don't feel much different then when on 100mcgs, though i feel a little cooler and seem less able to sweat than before. i am still feeling a lot better, back at work and doing well.

    i recently changed gp and went to my new gp asking for a nhs prescription. she wasn't happy that my TSH was low, even though everything else is fine, she didn't agree that thyroxine treatment suppresses the TSH???? she wanted me to agree to a cut to 25mcgs. i refused (i like feeling well) and she ended up agreeing to 3 months presciption for 50mcgs until my notes turn up.... then i imagine i may have a battle to get a repeat. trying to learn about TSH so i can argue with her!

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