Good Afternoon, I’m due to meet with my Endo tomorrow as he wants me to sign something basically saying it’s my choice/risk to be taking T3 he has sent me some papers listing the risks involved with T3 (you can tell by the way he has worded it to me he’s now not an advocate of promoting combined therapy).
I’ve had some test results back today as above and wonder if I can still push to keep having liothyronine (I do feel better on it even though I’m only on 10mg) He recommended I drop my levo from 75 to 50 as my Tsh is suppressed. That change was made yesterday.
Do my figures look ok with the meds I am taking?
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Bollieforme
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How do you feel, that has to be the most important question, because when on combination thyroid hormone replacement we're all different as to where we each need the individual levels, ie FT4 and FT3. Your FT4 would have me bedbound, I need both FT4 and FT3 fairly well balanced around 60-70% and I'm on Levo plus T3.
Your FT4 is already bottom of range, by reducing your Levo your FT4 is going to go below range and your TSH is likely to rise because you're taking T3, and T3 lowers and often suppresses FT3, that's just what it does.
I’m well under par, you just know when your meds are off. I feel this Endo does not understand our problems, I thought suggesting reducing levo from 75 to 50 and liothyronine from 10 to 5 gave me the shivers. He’s one of the arrogant ones as well, when you appear a bit informed he takes offence. I feel I only know a bit and thanks mostly to the lovely people on here like yourself that I have a bit more confidence. I’m sure he only wants me to sign a disclaimer (told me on the phone he is packing in doing private work) so somethings a miss and he is covering his back! Bit more information that you needed Susie but it’s good to vent!
Looking at your numbers, they alone indicate undermedication....both FT4 and FT3 are low.
Reducing to 50mcg is unlikely to do you any favours....50mcg is just a starter dose in any case!
At this point you need more levo rather than T3.
Your T4 to T3 conversion doesn't immediately appear impaired
So raising your levo should, given time and likely further increases, raise your FT3
The lio you added is making you feel better because it is taking the place of T3 that should be converted from a larger dose of levo
Unless conversion is dire it's best to optimise levo dose before considering T3
You will not be overmedicated unless FT3 rises out of reference range
Again we have a medic wrongly fixated on TSH!
TSH fluctuates during the day so it is not a reliable marker for dosing....research proves this but medics haven't caught up!
I need very high dose T3-only, my medics after some discussion, understand why. I self medicate but they have never asked me to sign a disclaimer.....however I did volunteer to do something similar which I was told wasn't necessary because I self medicate.... and can claim Patient Autonomy
Your endo was safeguarding himself because prescribing T3 has ended with trouble for medics....bizarre.
Just a few thoughts because your medication, based on these labs, needs to be reviewed
thanks for your reply, appreciate your comments and advice. I think I need to find myself an Endo that listens and understands. Can I ask does your GP support your Private Autonomy status and have you had the gene testing?
I've been through this situation a long time ago with an NHS Endo and NDT. Basically they are setting you up to fail by not getting your FT4 and FT3 to where they need to be and focussing on your TSH. Reducing further from where you are is only going to make you worse and right now you likely need more not less.
I'm currently adding some T3 on to my Levo via a private Endo. Having tried years ago to have NDT maintained on the NHS, with them maintaining my TSH in the normal range I vowed never to return to the NHS for a T3 containing product. Run from this Endo as fast as you can!
Ask him to show you the science behind this "low TSH" is dangerous.
Write a letter to him asking him to confirm with the results that he has seen that you need a decrease in thyroid drugs. This may make him change his mind, and if not, report him. He has got it all backwards and could cause you harm.
Register the letter, or it will never get there. It also shows you are not mucking about.
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