I have an appointment with an endo at Charing Cross Hospital today at 2pm (with a [name edited]) to discuss my very low (below range) TSH. My GP referred me (thanks, NOT) because he wants to further reduce my levo from 125mcg to 100mcg. I'm the daft beggar that also takes 18.75 liothyronine by importing it from abroad - my GP doesn't know this.
I feel OK, though my mood is so bad that I started antidepressants again 2 weeks ago and haven't had the "mojo" to look for work in 8 months. I'm not blaming thyroid for that but I know my mood and energy drops when my dosing is off.
Results from May 2023 (they are doing more tests today).
TSH 0.02 mIU/L (.27 - 4.2) -6.4%
Free T4 (fT4) 14.2 pmol/L (12 - 22) 22.0%
Free T3 (fT3) 5.84 pmol/L (3.1 - 6.8) 74.1%
T4:T3 Ratio 2.432
A couple of questions that I should know after all these years
1. How to defend my current dosing? I'm expecting to be pressured into accepting their wisdom or some drawn-out titration process.
2. Should I say about taking the liothyronine?
Many thanks!
Written by
Decant
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No, I was not aware he's anti lio at all. I only received the email and call this week after a previous appointment was cancelled.
I might tell him I am on liothyronine but if I do I'm not stopping it either way as it definitely makes a difference. My wife concurs. If he reduces my levo then I'll have to see about sourcing that too.
well not too sure of the results that they go by nowadays - usually the hospital advises on the results after blood test done. After being initially diagnosed I ended up being on 150mcg - my endocrinologist always said it is not always about the blood result but also how the patient feels in themselves. Anyhow with moving home thereby having different Drs they got me down to 100mcg - at times it went to 75mcg and then back up to 100mcg. Nowadays I am afraid I am on 75mcg and fed up trying to get it increased because whatever the hospital says goes!! I do feel a slight difference when taking the 100mcg - however I also know it is dangerous to have too much as too little so I just go with the flow these days. No good telling them how I feel - they put it down to something else as the cause! So sorry - not really able to help you out!
I'd imagine if he finds out about the T3 he will remove your T4 all together?
Interesting to see if he takes any notice of your very low fT4 against your low TSH... looks like you are in need of more T4 but what will he say? You would hope he might look into your pituitary glands (if he doesn't know about the T3) either way I'd be ready with a Plan B 🤗
Possibly I'm being foolish, but I agreed to go on his lio withdrawl protocol as it made sense to me. I hope it's not because I'm male, but I felt listened to, respected and not talked down to.
The protocol is a very gradual tapering off, with regular blood weekly questionaire filling. The blood testing frequency is my choice and weekly would be fine. I shall probably go bi-weekly as it's the other side of London.
I made it totally clear that my symptoms, my vitality is all I care about. Perhaps because I source my own T3 he knows he can't force anything.
His arguments seemed valid to me and I'm prepared to experiment. I'll only be gradually dropping by 6.25mcg/day, gradually over 7 weeks, before continuing downwards.
I think he knew his stuff. It would appear I had "Plummers Disease" all those years ago, as I had "hot nodules". So not Graves. He said depending upon when I stopped Carbimazole before the RAI will say whether the RAI hit the nodules or the remaining thyroid. It will be interesting to look back over my records later and see.
He seemed to know his stuff...
We shall see. Overall I'm content, for now...
Thank you to everyone who replied here and privately - much appreciated!
An approximation of your conversion rate is fT3 ÷ fT4 when not on meds containing T3 and your results are both in pmol/L. Your conversion rate is 0.20. (3.8÷18.3) which puts you in the class of 'poor converter' as defined by Midgley et al in this research. 'Variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency '.
In my experience you will never do well on T4 alone as you cannot get enough T3 out of the T4 you are taking. So if the trial to see if your thyroid can work again doesn't work, I would push for T3 to be prescribed i in addition to T3. As a rough guide to how much T4 and T3 you'll need, swop in the ratio 3:1, for example replace 15mcg T4 with 5mcg T3.
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