Hello and hope you are all doing ok yourselves , well my t3 trial came to an abrupt end ,SO FED UP WITH IT ALL REALLY, started this trial had trouble as drs we’re having meetings about it, I ran out which was unfortunate while they made there minds up ,well. They wouldn’t supply it my t4 had been reduced by 50 so started taking an extra 25 didn’t want to go right down again, then endo gave me about 2 months worth so I had been taking 175 /200 alternit days so then started taking the t3 slowly and arrived at 15 not the 20 , well I was going to run out again before my endo appointment rang the secretary, she said he’s not here ring your surgery, well she knew I wouldn’t get it from there but rang , they said she shouldn’t have told me to ring them and that there were more than one endo at the hospital,I rang her back she said you shouldn’t be on it , I said would you talk to another endo even if they just gave me enough until he was going to ring me , she said I don’t suppose they will give you it , ( I felt she had made her mind up ) well to cut it short they’ve just stopped it , I thought I was getting there just needed to drop t4 a bit , but no he didn’t even ring , just sent me a letter saying I’m over medicated , Results were tsh 0.02 (027 - 42) t4 22.8 ( 12-22
t3 5 (3.1- 6.8 ) I thought coming down on the liothyronine to 15 would be ok didn’t think it would put t4 up so much , thanks for reading tsh has always been low
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Kowbie
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crikey how annoying is that, stopping medication is so damaging and takes months to settle. This is why so many people end up sourcing their own and going private.
So after the trial FT4 is over range (not what you would expect on T3) and TSH supressed (as you would expect on T3) and T3 in range.
How were you feeling?
I read an article posted recently about the dangers of high in range or over range T4, probably what they are worried about… but stopping, that’s not the way to go about it, a slight reduction and retesting would help find the optimal mix.
Can you test again and show results in range? Had you taken T4 during the morning before the blood test? This would give a false high reading perhaps?
thankyou for coming back to me , no I hadn’t taken meds it was 24 hours , all I thought was I needed to drop t4 either by 25 or 12/1/2 , I had to right him an email as I was so upset just stopping it so bluntly I said to him why did you start me on 5 liothyronine in the morning and 5 at night , because you we’re building it up so I would have thought you would at least taper it off not just stop it so bluntly haven’t heard a word back from him about that , I have got some myself at the moment, I just don’t know how I go about it with my drs , they have asked me to have another blood test next week , and think I’m on 150 t4 , I feel so worried about what to say to them , what do others who are getting it themselves do , I feel it’s a bloody mess , I have come down on t4 and am taking 150 but I’m also taking 12/1/2 liothyronine, help thankyou
This is appalling! Is there not a complaint system for malpractice you can follow? These are supposed to be the experts but they drop you and leave you to go cold turkey or self source! It's not as if you are suddenly cured, you require their guidance for a dose change! Throwing you to the mercy of the clueless GP is totally unacceptable!!
What kind of healthcare system is this we are dealing with?? 😡
thankyou for replying, I did put a complaint in to pals but to be honest they aren’t going to go against the hospital, they are in the hospital, wish I hadn’t bothered, I said it wasn’t so much that they stopped it it was how it was done , I also emailed the consultant and said this was just for him ( meaning not the secretary) but haven’t had a reply, I just put why did you start me off on 5 in the morning and again at night then up to 10 twice a day ( because you were introducing it and building it up so you don’t just stop it so bluntly as you have ) haven’t heard a thing , I do have. Some myself and have started taking it 12/1/2 a day at the moment,I’m just worried about drs do I tell them how do other people go on about that , have you any idea . Thankyou for coming back to me , I hope your keeping well, it’s a bloody headache
on 150 thyroxine and 10 t3 morning and afternoon, took my dose t3 about ten hours before test the only thing I did do was take 50 thyroxine at the same time
t3 6.4 (3.1-6.8) I was quite pleased with that t4 16.4 (12-22) tsh undetectable,
he said it would be incompetent if he was to give me any more medication as my tsh is undetectable.
he then told me he was a thyroid endocrinologist and it was no use us talking anymore as I believed one thing and he believed another and he wasn’t going to change his mind no more than I would change mine
I thought my t3 was very good but don’t really understand why I feel like I do , do you think it’s because t4 is not high enough,
dr rang and said they couldn’t prescribe the t3 un till they had spoken with endocrinologist
they wouldn’t give me the liothyronine they said you will have to see endocrinologist to get them , I didn’t understand really why, and not sure if it’s anything to do with endocrinologist letter, but they said you’ll have to wait on the meeting that they were going to be having next Thursday, I’ve rang hospitable loads of times spoke with pharmacy at drs and the dr had told pharmacy to tell me you’ll be ok ,
So now I’ve been without (T3) for a week they (previously) put my thyroxine down by 50 , have tried hospital again endocrinologist is going to give me 2 weeks worth ,
I tried to ask if I could have , I was trying to ask about t4 upping a bit didn’t mind if I had to come down a bit on t3 , but he didn’t want to listen .
he didn’t want to talk about anything any more, I was trying to tell him about upping t4 but he cut me off , so didn’t really get chance to put it to him properly, in his letter to the doctor which I got this morning, it said I wasn’t happy that I won’t up medication,I can always go to another endocrinologist, I didn’t hear him say that
also what he had said in the letter was tsh undetectable t4 in range t3 in range but that I am over medicated , t3 was 6.4(3,1-6.8) t4. 16.4(12-22)
"but what’s best to do ... he started me on 2 lots of 5s then doubled it to 10 twice a day , then not having them for over a week what would you start back on ? "
"Yes thanks I think I will get my t4 up by 25 , and wait a couple of weeks and get back on the 200 I was on , leave it like that for another 4 weeks and add 5 liothyronine in then test after 6 weeks does that sound a plan do you think ,......oh ,would stopping t3 just like that give you diarrhoea ?
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Now :
"then endo gave me about 2 months worth so I had been taking 175 /200 alternit days so then started taking the t3 slowly and arrived at 15 not the 20
"well I was going to run out again before my endo appointment rang the secretary, she said he’s not here ring your surgery, well she knew I wouldn’t get it from there but rang , they said she shouldn’t have told me to ring them and that there were more than one endo at the hospital,I rang her back she said you shouldn’t be on it , I said would you talk to another endo even if they just gave me enough until he was going to ring me , she said I don’t suppose they will give you it , ( I felt she had made her mind up ) well to cut it short they’ve just stopped it ,
"I thought I was getting there just needed to drop t4 a bit , but no he didn’t even ring , just sent me a letter saying I’m over medicated , Results were tsh 0.02 (027 - 42) t4 22.8 ( 12-22) t3 5 (3.1- 6.8)
"I have got some myself at the moment, I just don’t know how I go about it with my drs , they have asked me to have another blood test next week , and (they) think I’m on 150 t4 ,
"I feel so worried about what to say to them , what do others who are getting it themselves do , I feel it’s a bloody mess , I have come down on t4 and am taking 150 but I’m also taking 12/1/2 liothyronine,
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Hi knowbie , I have just put this summary here so we can see what went on a bit more clearly. (hope it's correct . let me know if it's not and i'll edit it)
it might help if we knew :
what exactly did the letter in August say (the one they sent following their meeting about you ) ?
and have you now had another letter ? what does that say ?
it looks to me like a decision to stop the trial was already looking fairly likely at that meeting ..endo obviously thought he risked overmedicating you at that point , as fT3 was pretty high (and TSh supressed)
Do you know what was decided at that meeting ?
did they give you "2 weeks worth" and THEN another "2 months worth" , or was that a typo ?
then Endo seems to have decided to allow it to continue for another couple of months ?
but NOT at increased dose ? ( did you tell him you'd put the levo dose up ?)
unfortunately as you'd put Levo up quite significantly to 175/ 200 from the 150mcg they were prescribing .. your fT4 came out over range this time .
given that they were already uncomfortable about overmedicating you , your earlier conversation asking them to increase levo when fT3 was 6.4 will have rung alarm bells for them ( i know you were ALSO trying to discuss lowering the T3 a bit , but i wonder if they chose not to hear that bit and have just decide you were "already overmedicated and still asking for more" ? ).... then the latest fT4 result has unfortunately confirmed what they were thinking .
What (if anything )was actually said about your dose of T4/ T3 when the endo decided to prescribe another 2 months worth ?
when he gave me the 2 months worth ,I’m sure it was all done over the phone , I haven’t spoken with him at all ,well over 2 months I’ll have to try and find paperwork , I’m not very organised everything’s muddlely sorry I just thought stopping at 15 with t3 and alternating t4 175 /200 would bring t4 up a bit lower t3 and I’d be getting there , thankyou for coming back to me , I’m just worried now I do have some liothyronine, of my own but how do you go on with drs what do you say , I think what you wrote is right so thankyou for that , I hope your well .
What you say to them depends a bit of what your TSH / fT4 bloods are at the test next week.
How long have you been back on lower dose of 150mcg again ?
it fT4 is back in range you might not need to say anything.
If it's still over range you need to consider that the GP will possibly want to reduce their prescription from 150 to something less.
Yes thankyou i'm pretty ok knowbie .. i more or less 'hibernate' in winter anyway ~ but just going out for a bit of a walk in the sunshine while its there ...
I’ve only been back on it 2to 3 weeks so I don’t know what it could be it’s probably too soon but they we’re doing a prescription review trying to change everything I’ve just about had enough
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