Has anyone had terrible fluey feelings when changing from thyroxine to T3 alone.?
T3: Has anyone had terrible fluey feelings when... - Thyroid UK
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Pig4u
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Pig4u, no, I was unwell on Levothyroxine but didn't feel much better on T3 until I cleared the build up of T4. Took around 3 months.
How much Levothyroxine were you taking and how much T3 have you switched too and when did you switch?
Hi Clutter...I wonder what are the symptoms of 'T4 build-up'? And how does one know when/if it has cleared? Would appreciate an answer if you have time. Many thanks. D
• in reply toDaffidols
T4 build up is when too much T4 is needed to function but some doesn't get covered and floats around the body causing symptoms such as brain fog and palpitations.
You know when it has cleared because you feel better.
Flower007
Daffidols• in reply to
Thank you. I guess my confusion is that brain fog and palpations may be symptomatic of hypo T ( and other conditions), so wonder if there is a clearer way of knowing for sure that this is the problem. Is there a blood test?
Dafodils, post your results in a new question and we'll see whether you are optimally medicated.
Under and over medication can cause brain fog and palpitations but low iron can too.
There isn't a blood test specifically to tell whether you have a build up of unconverted T4 but low TSH, high FT4 and low FT3 is a good indication someone has too much unconverted T4.
• in reply toDaffidols
Yes Daffidols, all symptoms overlap so very difficult to distinguish.
Testing T4, T3 and TSH along with an interpretation of symptoms (good or bad) can be helpful.
I don't know of any other test. There is a reverse T3 test that measures the amount of unused free T3 in the blood but there isn't an equivalent for T4.
Flower007
Daffidols• in reply to
Many thanks for the helpful answers. Its all so very tricky!!!
Daffidols, I felt poisoned when I was switched from T3 to Levothyroxine and accrued more and more symptoms, palpitations, breathlessness, musculoskeletal pain, tremors, weakness and others until I was mostly bedbound. I felt better when I was taken off T4 for 4 weeks and suspected I had a problem with T4 or the initial over replacement to suppress my TSH had caused a build up. I came off T4 for 8 weeks taking T3 only then rushed it along by stopping T3 too. Into the 2nd week off T3 (10th week off T4) symptoms started improving and by the 3rd week had cleared. Within hours of reintroducing T4 palpitations, breathlessness and tremors resumed but adding T3 calmed them and I've been well on T4+T3 for over a year.
• in reply toClutter
That was useful to know Clutter,about the clearing of T4.
It could well explain why when we make changes to different meds and don't feel it's any better after a few short weeks that we aren't allowing enough time for the Levo to clear out of our bodies.
Clutter• in reply to
Marfit, I'd not even heard of rT3 back then but my gut instinct was build up. I thought all T4 would be cleared after 8 weeks but subsequently read it can take up to 14 weeks to clear a build up of T4 or rT3. I was right that stopping T3 too would speed up clearance and may have spared myself a very hypo period if I'd been more patient but I was also rock bottom and suicidal so I don't think I would have managed another 6 weeks.
The plan at the time was to be off Levothyroxine for long enough to be well for Christmas (2013) and perhaps have periodic holidays from it and enjoy short spells of comparative wellness. Not a well thought out plan and luckily I cracked the problem and didn't need it.
• in reply toClutter
Oh wow.......it sounds as though you went through a very bad time.You must have been very low.
I am supposedly a straightforward case of Primary Hypothyroidism( if there is such a thing as straight forward) however,when I read posts which make me realise how little I know I am indeed grateful for all that I learn.All your reading has certainly helped a lot of others.
I am at present trialling 1grain Armour + 10 mcgs T3 having ditched my 75mcgs Levo T4 ......will have an FT4 blood test end of this week ready for an Endo visit first week of August.
I felt I needed more T3 so thought this was a way of trying it as I had bought some Armour.............I can't see my GP prescribing more T3 after telling me the cost !!
I sincerely hope you are well now.
I have been on T3 for 12days having taken 75 Mcg of thyroxine I was. Told to stop thyroxine and start T3 straightaway. I feel awfulSo very fluey and weak Can hardly function and am having to sit down most of the time . These rotten and frightening symptoms start about 30 mins after rising every day.
Pig4U, how much T3 are you taking? There's no problem switching T4 to T3 in a day if the T3 dose is equivalent.
Thank you Clutter I am on 20mcg T3 and 12 days after seeing new Endo in London at present feel rotten. 21/2 years ago I had 3 super weeks feeling well on20 Mcg T3 then forced back to take thyroxine with it and have spent time since then in a sort of half life I hope that the T3 will work for me again as before and now under a much broader minded Endo .Perhaps I am expecting too much too soon.?
Pig4u, 12 days is too soon to hope for much improvement but it long enough to tell a med or dose isn't right for you.
75mcg thyroxine is equivalent tp 25mcg T3. The thyroxine will have washed out after 7-8 days so I wonder whether you might be slightly undermedicated. It might be worth increasing T3 to 25mcg. You'll need a pillcutter and quarters might be slightly uneven but I think it is worth trying. Split the T3 into 2 doses morning and night time. It doesn't matter whether you take the 15mcg dose morning or night. See which suits. If you don't feel improvement in a week contact your endo. T4+T3 combination may suit you better than T3 only.
Hi pig4u, my own experience is very similar to clutter.
Only i had stopped t4 because of how ill it had then made me after initially working great.
I had been off t4 for just over 8 weeks and by now was well and truly ill.
I was kept in limbo by my endo keep dangling t3 on a stick but never prescribeding it!
It was 9 days to Christmas day, not one single present bought and the prospect of a very ill and miserable Christmas lay ahead.
No! Bless my husband he sourced t3 and i started on the 15th December.
Within an hour my fatigue was lifting it has been life changing to say the least. We had a very happy Christmas!
Now back seeing endo who could see the difference it had made but we both decided to introduce liquid t4 alongside t3. Within an hour a started to feel dreadful again, continued for 2 days but was so ill again i then stopped the liquid t4. I then just took t3 but was still feeling very ill, fatigued and aching. Continued for for 3 weeks on t3 only but it wasn't working and now looking back i can only assume it was the t4 still in my body that caused this.
I was at a loss and decided to stop t3 completely.
Another couple of months pass and was so ill i decide to try t3 again.
It works again!!!
Endo not overly happy now that I've taken my health into my own hands. Especially when i tell him I've tried NDT which i had exactly the same reaction too and it took a few weeks again before t3 worked again.
I have now come to the conclusion that i cannot take any form of t4 and it takes weeks to leave my system before i can start t3 (not like i'm ever going to take t4 again).
I feel that if a had taken t3 immediately after stopping t4 then i would have been very ill, fatigue, brain fog, body aches and consequently would have given up and thought t3 was not for me.
This could be the problem for a lot of people changing over from t4 to t3. They need to clear it out of their system before starting t3.
Sparkly x
Very interesting Sparky thank you! I do not understand why all Endos appear to have such different theories ! I have seen now seen 6 and carefully stayed with their instructions.I am hoping number 6 will be lucky as he is the "Big White Chief "!! Also I get fed up with being told I am depressed when yes I do have periods of abit of anxiety but after nearly 10 years of feeling bad should not be surprising along with having nursed my late husband through terminal cancer.
Good Luck with Endos everyone!
I think what the trouble is, thyroid problems are so bespoke to the individual.
We all suffer symptoms differently and all react to medication differently. So one hat does not fit all!!
I have now learnt that i am the only one who knows my own body and i am now confident and have learnt enough to take control and look after myself with great results so far.
I do self medicate with t3 but my GP gives me a prescription so i can buy the brand that suits me online.
I go back to see my Endo next month and this is only to show him how well i am now. We will then be parting company no doubt.
Good luck with the big chief, lets hope he is open minded.
Sparkly x
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