Frustrated - Levothyroxine/Liothyronine

[Arlenka]

Well, just had my bloods taken this morning, so we will see what the test reveals. My endocrinologist wants me to decrease my liothyronine from 20cg to 5!? On my last results she said it showed I had no thyroid in my system so she increased my levothyroxine to .112mg. I’ve been on it for about 4 or so years. When I started on it I was on a higher dose of levothyroxine which he cut down to 1mg. Then my GP decided in November to cut my levothyroxine to .88 Monday-Friday and 1mg on the weekend… shocking to hear but I became very unwell.. lethargic .. etc. Of course the weight piled on and I’ve put on a stone!! Needless to say this doesn’t help with my physical or mental health.. sorry for such a long post, but as I’m sure there are a lots of us like me who know our own bodies, but unfortunately need a prescription from a GP or endocrinologist to try to continue on the journey healthy and happy xx

[Jaydee1507 Administrator]

Why is your Endo making decisions on your dose before they have seen the blood results?

If you are being seen by an Endo then why is your GP meddling with your dose? You may need to be firm with your GP that you are under an Endo and your thyroid results are not their responsibility.

Do you have a copy of your latest blood results that you can share with us? It would help members to see whats happening. You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

Did you do the test as per the protocol recommended here? This is really important! Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.

What are you supplementing with?

What are your latest results for ferritin, folate, B12 & D3?

[Arlenka in reply to Jaydee1507]

My endocrinologist recommended this after my last bloods which was in May. Due to illness I wasn't able to see her in November, therefore my GP thought my levels weren't ok so she reduced levo. When I get the results from today I will post. I'm going to see endocrinologist on Monday afternoon. Definitely not looking forward to it. When she put me on the .112mg she said.. you do know what it feels like if you're over medicated .. hyperthyroid.. talk about condescending.... felt like I was being treated as a child in school. I'm sure they passed on my message to her and told her that I refused to drop the dose of Liothyronine since I am the one paying for it. Wish me luck xx

[Jaydee1507 Administrator in reply to Arlenka]

Are you doing blood tests as per the protocol though? That will really make a difference.

Get into the habit of asking for print outs of your results, then you can post them here for corroboration. If you're in England then having the NHS app is very worthwhile for test results.

Good luck & let us know how it goes.

[Arlenka in reply to Jaydee1507]

Thank you. Yes, I had my bloods done first thing this morning and no thyroid medication since yesterday .. 24 hours. When I get my results I will post. xx

[SlowDragon Administrator in reply to Arlenka]

Essential to test vitamin D, folate, ferritin and B12 too