Anybody gone back to T4 only after trying T3/T4 combo?!

[mistygrey]

I am curious to see if anybody who didn’t tolerate T3 went back on to T4, did you feel better and how long was it before you could switch back onto T4 only?

[siannie]

Hi me !

I was taken off the t3 in August having been in it for just over 12 months . Initially, when I introduced (via consultant ) t3 I felt really good and actually lost weight .

However , gradually I started to deteriorate so much so I was convinced I was dying . I literally could do nothing, total exhaustion, increased heart rate etc .

Eventually had to give up work .

Discussed with my endo who said I could be ‘one of those people who can’t tolerate t3). He took me off it straight away . I increased my t4 from 75 to 125 which I where I’m at currently .

Within a week of removing T3 I started to feel ‘normal ‘. I’ve still a way to go but atleast as hubby says ‘he’s got me back’.

The endo did say even though he’s taken me off T3 it doesn’t mean I might not be able to have it again in the future.

Yes I’ve put some weight back on, yes I still get the brain fog, aches and pains but compared to how I was (he said chemical imbalance ) I do feel better .

[mistygrey in reply to siannie]

Hi!

That’s good to know! Glad you are feeling much better. I am starting to think I am the same I haven’t felt great for awhile I did like you for the first 6 months feel better then I went slowly downhill.

Trying to see if my Endo thinks that’s why I am unwell, also I think the t3 has been rising my cortisol which has also made me put weight on and feel more rubbish!

Do you feel much better without the t3? I worry if I go back to t4 I will feel more exhausted but to be honest I feel exhausted now!

Did the Endo switch you back right away?

[siannie in reply to mistygrey]

Yes he took me off it straight away. I did suggest it could have been the German brand as I was previously on the French T3. But he said he was very concerned about how ill I was he wanted me straight off it.

My cortisol levels were low in the morning (I think) I was barely functioning . I was also diagnosed with ME/CFS last year and I thought it was all related to that . I showered then had to rest, drying my hair was so tiring, my heart rate would increase the moment I stood up (he thought maybe POTs then said adrenal ), double vision, headaches, flashing at side of my eyes, loose vision on occasions (I stopped driving for a while ) breathlessness, unable to walk,

Swelling of joints god I could go on. Work was a nightmare, I literally was unable to use the computer and process information, memory etc so I was signed off for 2 months . Dr said it was all CFS (once your labelled it’s an easy cop out) and told me to discuss with my endo. He gp just said you’ve deteriorated so rapidly that I literally needed to nothing other than get up and dressed every day !!!!

Chat with your consultant - I was astounded when I was told it was potentially the T3, but can’t believe the difference in the way I feel now .

I’ve still got many issues like today I’m lying in bed as my whole body is in agony (prob the CFS after over doing it and stress !) but life is certainly better than it was a few months ago .

Good luck

[mistygrey in reply to siannie]

Thanks! Sounds very similar to me I feel rubbish and unable to do very much!

I also have hashimotos and possible sjogrens but my legs have felt like jelly for a week or two now. Gp told me my iron was on the low side but I’m on iron tablets now for that and was also on an iron tablet when they came back low.

I wake up with hot flushes in the morning and if I get up in the night I have one too! Like you my Gp tested my blood pressure standing and sitting and said it was all fine?

So maybe I am having similar adrenal issues. I’ve emailed my Endo as I can’t wait for her to maybe call me back when she feels like it!

Maybe she will take me off t3 also not sure but I think it might be linked.

Think my cortisols been high in mornings though but I’ve definetely felt more exhausted than normal!

x

[mistygrey in reply to siannie]

How long did it take you to feel semi better again on coming off the t3? See I wasn’t sure if it was safe to just come off the t3 like that, that’s why I need to speak to my doctor but she’s very slow! xx

[siannie in reply to mistygrey]

A week - I was shocked I felt better that quickly .

I was on 75 t4

20 t3

He stopped the t3 and I gradually increased t4 from 75 to 125. I was aiming to go to 150 but bloods suggested I should stay at 125 .

I too have Hashimotos .

He did say lots of people can not tolerate t3 and it was common .

I have a conversion issue, so having more bloods in jan before my next appointment ( which I do each time I see him) . Unless of course things get worse again - then I’m to contact him straight away .

[mistygrey in reply to siannie]

Thank you for your help it’s very interesting I am very similar to you a to you moment. Now wondering if I am having the same issues. My Endo was always reluctant to give me t3 but then I got it and felt good for 6months then I’ve went down hill if it’s not helping then no point being on it?

Did the Endo do any tests to confirm if it wasn’t working? I’m not due to see my Endo till Jan but I’ve emailed her which is naughty but I’ve left several messages with her secretary and no response. So hoping she will call today to clarify!! Can believe you felt better after a week that’s madness it really shows you. It isn’t for everybody! xx

[siannie in reply to mistygrey]

I always have bloods done prior to seeing him especially the thyroid ones. Others include CRP, FBC, Iron etc . Now he’s also added cortisol to the list . He’s a great listener? Which is a great help .

If you feel as bad as I did DO NOT hesitate in contacting your endo . I would ring her secretary every day if need be requesting an urgent appointment. Emails can get missed.

Be a nuisance - it’s your health at the end of the day .

I honestly convinced myself I was dying and said I would not be here at Christmas . That’s how bad I felt .

It may not be the t3 but it may be a consideration. We are all different in our makeup . I know it works for so many on here (as it did for me initially). But maybe your endo needs to see if you have some form of an imbalance going on . Let me know how you get on x

[mistygrey in reply to siannie]

Thanks your right! I will keep chasing! It’s not nice to feel unwell we are our own advocates!

I haven’t taken my t3 this morning and feel less foggy headed already, I will prob have to take it later unless I speak to Endo before hand and confirm coming off it. But interesting that I don’t feel as ill when I haven’t taken it? could be something else too though your right needs checking. Will let you know what happens! xx

[siannie in reply to mistygrey]

Did you get in touch with your endo today ? X

[mistygrey in reply to siannie]

Hi

She was supposed to call me, I emailed asking her to call and left a message for her with the secretary yesterday and still no answer which is pretty disappointing she’s usually very good 🤷🏻‍♀️🤷🏻‍♀️ Il try again tomorrow x

[mistygrey in reply to siannie]

Hi!

So I just spoke with my Endo, she was on the phone for 30 mins! She said my Cortisol was normal a little bit low on the 24 hr Urine but then a blood test at 11 am showed that it was normal.

Endo thinks what is causing me to be ill is the T3 possibly, she thinks its causing my heart to get stressed when it comes down from the spike T3 causes shortly after taking. My symptoms in her experience are showing I am not tolerating the T3, however she is letting me do a trial of going back onto my T4 original dose, or trying to do a lower dose of T3. So I have to try and do that and see how I get on!

It would be weird and funny if I am the same as you and haven't been tolerating it!!

I will let you know how I get on xx

[siannie in reply to mistygrey]

Oh I’m so pleased you finally got to speak to your endo . Does sound very similar to me. My endo just took me off it straight away and gradually increased my T4 .

I was in 75 t4 and 20 t3

On stopping t3

I increased to 100

Then a week later 125

I then had a blood test at the gp who were concerned I might be in too much . So I contacted my endo as I was meant to increase t4 to 150 and remain in that dose.

He told me to stay at 125 and then we would review again in Feb .

Are you going to reduce the t3 or stop it and increase t4.

My endo said so many are unable to tolerate t3abd this was why he was concerned with those who self medicate via the internet with it .

Let me know how you get on - I feel so much better since stopping x

[mistygrey in reply to siannie]

I know it’s weird how we are very similar! I’ve not found many other people who have been on t3 and went back to t4 most people love it!

My Endo did say on the phone not many can tolerate the ups and downs it causes and because I can’t handle the higher doses it doesn’t really bode well with me so far.

I said I would be sad to have to come off it as tried so hard to get it but at the same time if it isn’t working for me then that’s just only going to make me more sick!!

She suggested lowering the t3 and keeping t4 same or just going straight in with the the t4 trial only tomorrow and see how I do. To be honest I may just try that and see how I feel - if any different! The fact my hearts been feeling not very great has been scaring me and I wonder if the t3 is the cause all along.

Will keep you updated!! Thanks for your help xx

[ettiebetty in reply to siannie]

did you end up raising more or staying at 125 t4 please? how are you doing?

[mistygrey in reply to siannie]

Do I try the T4 only or the other option my Endo gave me of doing one dose of 5mcg T3 and my current T4 dose...but I feel if I do one T3 dose of 5mcg I would be flagging the rest of the day? x

[siannie in reply to mistygrey]

Eek personal choice really .

I was just so poorly as soon as he said it was potentially t3 I agreed to come off it. Like you I said I was sad to come off it especially as I had been so well initially .

He did say maybe in the future I might be able to try it again but for now the emphasis was on my feeling better sooner rather than later.

We still have to address the conversion issue but that has to wait until I’m feeling much better .

Remember you may need to increase t4 if you stop t3 x

[mistygrey in reply to siannie]

Hmm see it’s a tricky one. She gave me 3 options one was t4 dose only I was originally on, or my current t4 dose and the one t3 pill of 5mcg and another I’ve wrote down but wasn’t ideal the last one.

I am flagging now and needing my next t3 dose so do I continue to take that today and maybe try the new dose from tomorrow?

I’d be going back to 75mcg t4 but currently only 50mcg T4 and 10mcg T3 split morning and afternoon, so not sure what’s best to trial for the best effect?

If I do just one pill of t3 I’d be flagging later on in the day unless I kept the t3 for the afternoon? So confusing 😬😖

[siannie]

No he’s not said why other than a lot of people are intolerant and like me can be ok initially then it causes an issue .,

I started off in 10mgs of T3 split x 2 a day .this was then increased in Feb this year to 20mgs, again split but because I wasn’t lasting all day I took it all in the morning - which seemed to work better for me .

Apparently I do have an issue with conversion which needs to be addressed but we are going to deal with that again in Feb, unless my health deteriorates before then . I did tell him that I felt my best when I was in 175mgs T4, which is what we were trying following removal of T3, however, my GP did bloods and said I was receiving too much and would not increase it . My endo confirmed to stay with 125mgs until he next sees me and then we will look at my blood work again then .

It is a minefield. I just feel every time I see him it’s sonethibg else . Prior to being ill in Dec 2016 (hospitalised) I was a simple UAT. Now I’m Hashimotos, ME/CFS, Seritonin deficient, ? Adrenal insufficiency ,

High BP, . I dread what else is coming my way

[mistygrey in reply to siannie]

Did you go back on a T4 dose and what dose are you on? x

[siannie]

Maybe that’s what it was with me 😱

Be interesting to see what happens next time I see him and what my bloods will show .

[mistygrey in reply to siannie]

Didn’t hear from endo yet she has ignored my email and call! Maybe she was busy 🙄🤷🏻‍♀️ I think I have a stomach infection so it hasn’t helped. I definitely tolerate the Henning brand the best

[mistygrey in reply to siannie]

I will try her again next week!! Xx

[siannie in reply to mistygrey]

Just wondering is your endo nhs or private ? I ended up on the private route. My endo is fab as I get no less than an hour when I see him . I think you are more restricted within the confines of the nhs.

Having worked within a GP practice abs then private physiotherapist , those who make the most noise (not so much complaining ) but constantly chasing results, appointments etc get more results .

Ring every day next week and tell the secretary , your logging the dates and times you’ve called and keeping records of emails sent . Explain , you are very poorly and concerned this may be due to medication your taking and worried about any further consequence this may have on your health.

I can’t temember if you said you went back to the GP - that may well be a quicker route especially if you say you are not getting a response from your endo and your really worried how your feeling .

It’s awful the way we have to take control over our health - by whatever means. Endo should respond to a drs concerns .

Keep me posted x

[christa1]

don't forget, mistygrey changed brand halfway through the year to a German manufactured t3 and then she got worse! different fillers.

[mistygrey in reply to christa1]

The brands I am on is fine that’s not the issue it’s wether t3 was suiting me or not. My Henning t4 is great and doesn’t have lactose my t3 is also lactose free Perrigo which is now changing to a new brand but don’t think it’s anything filler wise it’s more the t3 working part

[christa1 in reply to mistygrey]

sorry, I didn't want to "step on your toes" but you said that you changed to a different brand of t3 (German) and that is when you started to feel unwell. I must have missunderstand your writing. sorry all the best. x

[mistygrey in reply to christa1]

Hi no probs, it may be they have changed their formula I can’t figure it out yet. Still trying to get to the bottom of why I don’t feel too well! it might be that I’m not tolerating it but when I was on t4 only I wasn’t well and lethargic So it’s hard to know!

[christa1 in reply to mistygrey]

I feel so down sometimes too, so much in fact, I want to give up the meds all together!! I medicate myself with thiroyd-s and t4. but then I read on here, the problems of hospital stay.......and THYROID medication. they don't care about self medication and the right time (1/2h before breakfast) for our meds. now I want to go back to t4 only but I feel human again with self medication and change is going to bring back a lot of problems.

how are you feeling in within yourself now? it has to be hard after having your life back for a long time to fall back down into being unwell.

xo