T3 Only Treatment: Hi everyone. A question for... - Thyroid UK

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T3 Only Treatment

hypo_guy profile image
19 Replies

Hi everyone.

A question for those of you who have experience of T3 only treatment. If you forget to take a dose, how long before things get really bad, especially if your TSH is suppressed?

Cheers.

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hypo_guy profile image
hypo_guy
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19 Replies
Clutter profile image
Clutter

Hypo-guy,

I have no thyroid and I've stopped T3 for 2-4 weeks on 3 occasions. I wouldn't say it got really bad but fatigue and sensitivity to cold were quite noticeable. It took several months each time to fully recover.

hypo_guy profile image
hypo_guy in reply to Clutter

Thanks Clutter.

Saggyuk profile image
Saggyuk

I normally know I've missed a dose within a couple of hours - my best friend can tell too as apparently I mumble more. She always asks if I've forgotten a dose and she's always right. But this is just becoming a little slower - it's not that bad. I don't think I've ever gone that long as this always reminds me. If my brain starts taking twice as long to do something, It's obvious. Went without some for nearly 24 hours accidentally on purpose the other day, I was still functioning fine and that was with a very raised tsh. I had zero T4 in my system also as no function left in thyroid. Had no problems recovering with this amount of time.

A suppressed tsh would mean you have longer than this as you would have more left over in your system.

Have you been on it long? If not, you will get used to the differences you feel and when you need more or when you need to leave it a little longer :-)

hypo_guy profile image
hypo_guy in reply to Saggyuk

Thanks Saggyuk. I've been on 100mcg of Levo since December, but started supplementing B vitamins recently and suddenly the Levo started working properly. However, yesterday my body seemed to run out of T4 (perhaps I was overdoing it with the supplements). Fortunately, I have some Greek T3 and have been using that, but I went for about 12 hours without it and my pulse plummeted from about 60 to 45 in about 5 or 10 minutes, which is unusual for me. Got slightly anxious, but took some T3 and feel better now :)

Saggyuk profile image
Saggyuk in reply to hypo_guy

have you switched from Levo to T3 completely or are you on levo and t3 but ran out of levo? Sorry, it's not clear in your answer. If you go from one to the other just like that, you will likely have some problems :-)

hypo_guy profile image
hypo_guy in reply to Saggyuk

I haven't had any Levo today, just T3. Yesterday, I felt my body had run out of T4, but I could be wrong. What sort of problems, Saggy?

Saggyuk profile image
Saggyuk in reply to hypo_guy

basically, bodies like consistency and regulation and sudden changes will upset it. Your body will work as efficiently as it can with what it's got even if not optimal so if you're on T4, it will work within certain processes but then if you suddenly give it T3 instead the next day is has to go whoa, now I got to change everything I do and do it slightly different which will cause temporary issues.

It will take six weeks, sometimes more, for tiny changes in dose to show effect physically and for your body to adapt to the changes so dose changes should always be done very gradually. You wont have a clue what is working best for you unless you do it that way and blood test results wont tell you anything useful. You can't just take different types and different doses every other day.

When I switched from T4 to T3, I swapped 25 mcg T4 for 10mcg T3 and then left a couple of months, checked blood tests to see if okay, and then swapped the same amount again and repeated the same process until I was on T3 only and my blood tests showed optimal results.

Bodies are not like cars where once they empty of fuel, that will just suddenly conk out in the middle of the road, they have emergency ways to keep you going for a while even if bad for your body in the long term. For example, if you stop eating food (fuel) for a day or two, you wont just die, your body will put emergency processes in place and will use other things like fat stores and even adrenalin, then breakdown muscle and eat them and so on. It will then even shut down non-essential processes to conserve what it can and and keep the essentials going - heart, nervous system, lungs. It would be a more gradual decline.

Bodies are extremely sensitive to the thyroid hormone and doses you give it so maybe read up a little more on how it all works to get a better understanding of it :-)

hypo_guy profile image
hypo_guy in reply to Saggyuk

Thanks Saggy :)

Barrister profile image
Barrister

I don't feel different but within 2-3 days my eyelids start to swell and look puffy. Clemmie

greygoose profile image
greygoose

6 months.

PiggySue profile image
PiggySue

My heart tends to give it away within a couple of hours (palpitations or arythmia), but as I have now completely run out and have had to go back on T4 only, within 4 weeks I was losing hair, gaining weight, forgetting names and the latest after 6 weeks, having a lot of difficulty walking, so that I have to think whether I can walk around the supermarket today, and had to give up on the 10 min walk to work yesterday and beg a car space.

BadHare profile image
BadHare

I've no idea what my TSH was, but I started feeling wretched in 24 hours. Think I'd prefer a double dose if I couldn't remember whether I'd taken it.

thyr01d profile image
thyr01d

Hi Hypo_guy, I've only forgotten twice but both times I was dismayed at how tired I was in that 12 hour period and then on going to take the next dose saw that I'd missed one - indicating that it was not imagination because I was unaware that I'd missed one.

I can't tell you how long before things get really bad because I have a system to prevent me from forgetting for longer.

Like someone below, my thyroid produces virtually no thyroxine (>95 and coma level a/c to endo) so I have no 'back-up' and because T3 is short-lasting notice quickly whereas if you are also taking Levo that is long-lasting so I'm not sure how long it would take, I suppose it might depend upon how well your body is converting the T4.

Why do you ask, are you considering not taking it for a while?

hypo_guy profile image
hypo_guy in reply to thyr01d

Thanks thyr01d. I'm on 100mcg of levo a day and recently I started supplementing B vitamins. The levo started working really well but then my body seemed to run out of levo. Luckily I have some T3 but I have no experience of T3 only treatment and I'm not sure how long it will take for the levo to start working again. I'm less anxious now I know I'm not going to slip into a coma if my body runs out of T3!

thyr01d profile image
thyr01d

Another thought hypo_guy, someone in a post on here wrote about the B vitamin Biotin interfering with thyroxine and I wondered if your B vitamins might be causing some kind of hiccough since this seems to have coincided.

Also, do you know about avoiding taking certain supplements and caffeine within a certain time of taking your T4/T3? Especially magnesium and iron? I'm wondering if you take either and these might have interfered.

Sorry I haven't checked your profile and realise it might say in there, but I have some work I need to get done before Surface battery runs out!

hypo_guy profile image
hypo_guy in reply to thyr01d

Hi thyr01d. I'm not sure, but I think biotin interferes with the thyroid function test rather than the actual thyroxine levels in your body. I knew about iron, didn't know about magnesium, and thankfully, now I've discovered B vitamins, I'm not dependent on caffeine in the morning! Thanks for all your help thyr01d :)

Clutter profile image
Clutter in reply to thyr01d

thy01d,

If the test assay uses biotin then results may be skewed if biotin is taken the day of the test. As most of us won't know what assays are used it seems sensible to stop taking Biotin and B Complex vitamins a day or two prior to thyroid testing.

healthunlocked.com/thyroidu......

thyr01d profile image
thyr01d in reply to Clutter

Thanks Clutter for correcting my mis-remembering.

Smogmonster profile image
Smogmonster

If I am late taking a dose of t3, particularly my 3pm dose, my right eyelid starts to spasm. Its like a built in alarm clock to remind me to take my meds.

😃

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