My first day on t3 and I feel over-caffeinated.... - Thyroid UK

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My first day on t3 and I feel over-caffeinated. Normal?

puncturedbicycle profile image
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I only took 5mcg (instead of the 10 I've been prescribed). I'm a bit tense, almost overexcited, but I had a few of cups of leaf tea this morning/afternoon and it could be the caffeine I guess. I'm on 150mcg t4 as well and doctor has not advised me to lower the dose.

Thanks all.

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puncturedbicycle
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shaws profile image
shawsAdministrator

This is part of an excerpt of an article by Dr Toft ex of the BTA:-

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

puncturedbicycle profile image
puncturedbicycle in reply toshaws

Hi shaws.

Thanks for the excerpt. Sorry to sound a bit dim but is that to say that I should be reducing my t4? Or that my t4 should have been raised before trialling the t3?

My last results (in March):

Serum TSH 0.16 mlU/L (0.34 - 5.6)

Serum free T4 18.50 pmol/L (7.5 - 21.1)

With these results I was feeling maybe an improvement of 10-20% over how I felt before my t4 was raised to 150. Endo says results above are "excellent" and that I should continue the same dose and "hopefully" I will feel better soon. My gp won't test my t3 (or rather the lab won't test it).

I was on the phone to a private doctor I used to see (asking about something different) and I told her how I felt and she said she thought I'd benefit from a trial of t3. In the past when I've had my t3 tested she seemed to think my conversion was good.

Sorry, I never anticipated getting a trial of t3 so I haven't done much research.

shaws profile image
shawsAdministrator in reply topuncturedbicycle

I am not medically qualified but they added T3 to my meds (I was on 75mcg levo they reduced it by 25mcg). On next blood test they reduced T4 to 50mcg with 10mcg T3 only due to the blood test. I had felt an immediate benefit with added T3. I told them I wouldn't reduce the T3. I then went onto T3 alone but had to go private.

Dr Toft says to reduce T4 by 50mcg to add 10mcg of T3,

I believe Endos should pay more attention to how we feel rather than dosing us according to blood tests.

This link is about T3.

Jackie profile image
Jackie

Hi It is early for important side effects, T3 takes a month to optimise. However you are right to start on a lower dose, was this preceded by a Free T3 test, to show you needed it? Normally re tested again after 6 weeks.Try taking it alternate days, just fro a week then on the 10mg, ( usually the starting dose only) Then when on the 10 mcg you need to split the dose again ( not easy) into 2 and take 12 hours apart.. it is the recommended way because . You do have a high 2 to 3 hours after taking.Just read your reply to shaws. You need a FT3 test first for safety. Ask your GP if he can arrange one for you if you pay, usually about £10. other option is TUK site, bloods,thyroiduk.org.uk/tuk/te I use Blue Horizon, that or main site, qote TUK 10 for discount. I pay £61 for the 3 tests or there is a fingerprick test, slightly dearer. Results e mailed to you + ranges,They are always checked by their Harley St. doc. if very bad in any way then hit is in the e mail.

Best wishes,

Jackie

puncturedbicycle profile image
puncturedbicycle in reply toJackie

Hi Jackie. No, I can't pay for the GP to do the tests. I'll look into the others though. Thanks for that.

Jackie profile image
Jackie in reply topuncturedbicycle

Hi I have a GP like that to. Some people manage it, they are lucky!.

Best wishes,

Jackie

puncturedbicycle profile image
puncturedbicycle in reply toJackie

The funny thing is that I found out by accident. I was so grateful that he ordered the t3 test without an argument (which the lab later refused to do). He looked it up on the computer and said 'That costs £12' and I said 'I would pay for it myself if I could' and he said 'You can't.'

Jackie profile image
Jackie in reply topuncturedbicycle

Hi so near but so far!

Jackie

puncturedbicycle profile image
puncturedbicycle in reply toJackie

Indeed! :-)

DeniseR profile image
DeniseR

I felt 'wired' for the first week or so after starting T3 but then it seemed to settle down as my body adjusted. I'd give it a little bit of time before deciding if it's too much for you. :)

puncturedbicycle profile image
puncturedbicycle in reply toDeniseR

Thanks DeniseR. Don't worry, I have high hopes for t3 and am not worried it's too much for me in any way. I was just curious about how I was feeling. It wasn't a bad feeling and if anything it was not the teeth-grinding feeling of too much caffeine but more of an excited feeling.

deb25426 profile image
deb25426

You will adjust, I drink de caff tea!!!!!

puncturedbicycle profile image
puncturedbicycle in reply todeb25426

Yes, me too! I'm normally almost completely decaffeinated, both tea and coffee, but we had some tea a friend had brought us back from India and it was delicious. I've gone right off tea of late, so it was so nice to enjoy a cup. It was a very light blend (tasted like it had a lot of assam), I don't know if that would indicate less caffeine or if I was just hoping a couple of cups of weak tea wouldn't hurt!

The thing is, the slightly wired feeling carried on all afternoon and evening, and it was rather pleasant (caffeine usually gives me a terrible "exam anxiety" feeling). I made a Spotify playlist and cleaned the house to within an inch of its life!

deb25426 profile image
deb25426 in reply topuncturedbicycle

Well something good came out of it... When I get like that I drink camomile tea it really soothes especially at bed time!

puncturedbicycle profile image
puncturedbicycle in reply todeb25426

Yes, and it tastes lovely too. I do like a cup of camomile. Valerian is relaxing too but it smells a bit like old socks, so all in all camomile is preferable.

spring13 profile image
spring13

Sounds odd to add T3 dose without reducing T4 dose when your results show your thyroid levels were near top of the range already. Did this private doctor have thyroid experience. If symptoms continue you will need bloods checked again. you may just be "tuned in" to symptoms at present because its a new drug.

puncturedbicycle profile image
puncturedbicycle in reply tospring13

Yes, private doctor is a thyroid expert, highly recommended and flexible about different treatments (t3, ndt), but I have my doubts about organisation and procedure in the surgery, so I like to stay aware and double-check details. They are opening a new surgery and doctor can be distracted. (This is why I have started looking for a new doctor.) I rang to ask a question about previous treatment and was offered t3 and I didn't want to refuse.

My NHS endo is very organised/professional, but less flexible and just tells me to keep on taking the t4 and I'll feel better (which I don't, or not significantly better anyway). I feel a little caught between the two options - either accept a slightly casual possibly slipshod treatment with more treatment options or accept the same bloody t4 every time, with carefully monitored tests but results are always said to be excellent even when I keep saying I feel bloody awful.

puncturedbicycle profile image
puncturedbicycle in reply topuncturedbicycle

And yes, I agree, I was looking out for side-effects, but only out of curiosity (and in hopes that I will see some good results).

Heloise profile image
Heloise

Did I show you this website....all about T3 and RT3. There might be some answers for you.

thyroid-rt3.com/backgrou.htm

puncturedbicycle profile image
puncturedbicycle in reply toHeloise

Many thanks! I will have a look.

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