Please help

[Kowbie]

my t3 has been abruptly stopped can anyone give me information on how I go about what to do .I’m so worried don’t know what you do about drs , do you tell them or what , that your going to take your own , please help thankyou

[Jaydee1507 Administrator]

Can you explain how your T3 came to be stopped? Did GP message you? Are you seeing an Endo?

What were your latest blood results?

[Delgor in reply to Jaydee1507]

Jaydee, A post was put up by Kowbie about 20 hours ago called "Update on T3 Trial" which gives all the details. Unfortunately I don't know how to give you a link but I'm sure you will find it if you keep scrolling down.

[Kowbie in reply to Jaydee1507]

thankyou for getting back to me I did write in last night to explain it as best as I could , but yes had been on t3 trial with endo , ran out of it for about a week didn’t like to just start back on the 20 a day , and had started taking a bit more t4 as I didn’t want to go down , so when I did get some I started adding it in I left t4 at 175/200 alternate days and added t3 up to 15 not the 20 , but it put my t4 over 22.8 (12/22) t3 5 (3.1-6.8) tsh 0.02(0.27-42) I thought we’ll what I need to do is come down on t4 and hopefully the next test would be more or less ok , but was going to run out again before my phone appointment anyway they just stopped it , my tsh has always been very low I think he was just concentrating on that , because he’d been on about it all the way through, I didn’t even get the phone call,secretary told me , at the time , hope your doing okay,

[Jaydee1507 Administrator in reply to Kowbie]

I'm sorry this is happening to you but you need to tackle it with the GP and Endo. Try calling the Endo's secretary.

[Kowbie in reply to Jaydee1507]

I have tried that but when I rang the secretary to tell her I’m going to run out again she told me I shouldn’t be on it , I also asked her would she talk to another endocrinologist as the one I had been dealing with wasn’t there , she said I don’t suppose they will give you any, then when I. rang again was told there’s a letter in the post never even got to speak with anyone so now I’m worrying, thankyou for replying to me hope your keeping well

[Jaydee1507 Administrator in reply to Kowbie]

Did she explain why you 'shouldn't be on it'? if you are going to run out you will have to take some of your own supply. Best to keep taking same dose if possible.

[Kowbie in reply to Jaydee1507]

they have always said I’m over medicated, I think it’s mainly about tsh being undetectable at 0.02 , gps havent wanted anything to do with it really, I’m worried do I tell them I am going to take my own t3 or what thankyou for replying

[tattybogle in reply to Jaydee1507]

does this help jaydee ?i just put this attempt at 'history' of endo letter / meeting etc on the other post.....

Summary from your August Posts :

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 ?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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,

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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 ?

[Jaydee1507 Administrator in reply to tattybogle]

I bow to your greater cognitive powers tattybogle

[helvella Administrator Thyroid UK]

I think I might question the sudden stop.

After all, we have recently seen much about suddenly stopping various medicines - especially antidepressants.

So ask for evidence that suddenly stopping T3 is definitely safe and good practice.