Why have they taken away my T3?

I have battled for three years to trial T3 so when got it in January was so happy to finally see if adding 20mcg to my T4 would make a difference.

I have been feeling better than before, weight loss steady, started to exercise and got through a day without flopping on sofa!!

At end of March my TSH was 0.11mu/L T4 11.0pmol/L T3 4.1pmol/L

When the Endo saw my TSH he said to reduce T3 to 10 initially but then he decided to stop the T3 altogether as was worried about the implications on my heart.

I am worried now that I will go back to how I felt before as back on only T4 and a reduced dosage too as only 75mcg when I was on 100mcg before.

I have got to have bloods checked in 6 weeks to see levels then but these will now be done at GP's surgery so don't hold out much hope that all will be tested.

What shall I do now? The Endo has discharged me as said NORMAL

This is so frustrating, any help greatly received

Nicola

11 Replies

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  • When I read posts such as yours I despair. When you are improving on a regime why change it? Does he not care that your ill-health will return? Obviously NO - just let your GP deal with you.

    The T3 and heart problems are exagerated and here are two links and you will see T3 is not dangerous. Endo's don't seem to know fact from fiction.

    web.archive.org/web/2010122...

    web.archive.org/web/2010122...

    Maybe your GP will prescribe T3 for you if you get worse.

  • Hi Shaws

    This was my second referral and I had to fight for this as GP will only prescribe T4.

    Thank you for your reply

    Nicola

  • T3 is also more expensive (although I don't know the reason for this). T4 is about £1.50 per month.

  • I agree with Shaws. The heart actually NEEDS T3 to function properly. It helps with the electrical currents through the heart. Some heart operations even require the use of T3 during the operation.

    You don't say what the reference ranges are for your tests, but your T3 seems low to me, so it's a mystery why he's reduced it.

    If your GP won't help could you ask for a second opinion from another endo.?

    Jane x

  • I have a list of 'good' NHS Endos - some of whom are known to treat with T3 - email me if you would like it - louise.warvill@thyroiduk.org

    I take it that you are keeping a diary of symptoms vs tests vs treatment? Written evidence can go a long way with some docs. :)

    Louise

    xx

  • Hi, Louise

    The Endo I saw happily prescribes T3 but as I have been to this hospital 3 times, one for initial bloods and prescription. Back again for follow up bloods 6 weeks later and now for results. It seems this is the point when they discharge! I get no support from GP and this was my second referral so have nowhere to go now.

    I think you may have sent me the list before but cannot find it so could you send again please. Not sure I can see another Endo, thanks

    Nicola x

  • You'll need to email me again, ta. xx

  • Hi I would certainly see a new endo,, your choice not the GP`s .Yes,you need it to be kept in range and frequent repeat tests., The endo just following the "party" line. You want one who thinks for themselves. Yes, T3 can push the tSH down a little. That is fine, I need my FT3 at top of range, I also have armour ( good endo) and my tSH immeasurable. I have the most serious lethal heart disease, and end stage too. Yes, you need to watch that FT3 . I see some of the very best cardio`s ( not many about) and they are happy , to have as much treatment as I need, but no more.Coincidently I have very severe liver disease ( not drink!) and all my bloods have gone haywire, including thyroid and diabetes. I had my usual tests ( Blue Horizon) , when I received them, I immediately reduced my T3 for a few days. I had an emergency endo appointment in view of all my co morbidities. My lovely endo, agreed best to reduce for a few days until I felt I needed to go back up. I decided I would rather have a new blood test before going back up on the T3 ( 20mcg reduced to 10mcg ), on armour too. I am desperately waiting for tomorrow to have a new thyroid test, I did not feel well enough earlier. The difference is amazinin 2 weeks,,all my symptoms are as bad a as if on no treatment. Yes my FT3 was over range for a little while, it has obviously gone much too low now.Hyper can be dangerous ,if not controlled.I have Hypo, Hashimoto.

    I hope this helps.

    Best wishes,

    Jackie

  • T3 does require fairly close management, but if we're not given to ill considered actions and reasonably aware of our bodies it's not too hard to tell when we're edging over into taking a little to much. (resting pulse rate, how we feel and stuff like that)

    Perhaps there was a reason, but reducing T3 in the face of improvment and lab values might suggest the onset of cold feet (in your doc :) )as much as any new medical insight...

    ian

  • This is unbelievable :( Your TSH is quite high for someone on T3 - I would expect your TSH to be suppressed - mine is < 0.02 and my endo is happy with this as my fT3 and fT4 are in range. To me this indicated you needed an increase, not for it to be stopped. Is there any way of speaking to your endo to try to understand his logic? so sorry this is happening to you :( xxx

  • Maybe you need to see your endo again? If he/she tells the GP that they are happy with your symptoms and test results then I would imagine the GP will be happy to continue prescribing. Good luck!

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