Levothyroxine users pls respond: I have been on T... - Thyroid UK

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Levothyroxine users pls respond

truthseeker136 profile image
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I have been on T3 only for about 2 years and had to switch to T4 recently due to difficult getting the T3. My initial days on T4 were horrendous. I had abnormal weight gain, abdominal distention, gas, horrible back pain (intermittent), and was incredibly lethargic. After almost 4-5 days, I noticed that these symptoms eased and I was getting better but I am still incredibly lethargic. Could it be that I need a higher dose? How did you all find ur correct dose? Should I wait a bit before i increase?

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greygoose profile image
greygoose

Without telling us how much you're taking, how much T3 you were taking, and what your lab results are/were, I doubt anyone can tell you much.

However, going from T3 only to T4 only cold turkey would be like suddenly just stopping thyroid hormone replacement altogether because one day the T3 was there and the next it was gone. It takes T4 about six weeks to be fully synthesised in the body and convert to T3, so all that time you were without the active hormone. More or less. It's now improving because more T4 is being converted to T3. But, as we don't know any details, as I said above, we really can't tell you if you're getting enough. :)

truthseeker136 profile image
truthseeker136 in reply to greygoose

Hey Greygoose,

You are right, i left out a lot of things from my message mostly because I don't have the lab results or the means to do them.

I used T3 for a long while under a US doctor who only went by temps and HR/BP. That is how we found my dose to be 200 mcg a day but I later cut back to 100 mcg because I had palpitations on the brand I was taking. I was symptom-free happy camper till I started having trouble with T3 supply.

So now I have switched over to T4 almost cold turkey. I am over the hump now but still feel comatose most of the day. I am on 200 mcg currently. Unfortunately I live in a country where lab tests are incredibly expensive (no insurance) and I don't have a doctor who understands what's going on. If they did tests and found my T3 above range, I would be reprimanded and taken off drugs. So that's not a good route to take. For now, you all are all I've got.

I was somehow able to get some compounded slow-release T3 but on its own it didn't work. I had to add it to my above-mentioned dose today and feel like some of my mental function has returned but it's still pretty bad. I'm studying to take some professional exams and haven't done much studying at all since I stopped T3. It is nearly impossible to concentrate.

greygoose profile image
greygoose in reply to truthseeker136

It would be! Going from 100 mcg T3 to 200 mcg T4 assumes that you have very good conversion. Do you know how well you convert, considering that you didn't have blood tests? Were you ever on T4 only before T3 only? This all seems very hit and miss. And 200 mcg T3 a day is a huge dose, so I very much doubt the accuracy of his method. Even 100 is more that most people take. But, if you were happy on 100 mcg T3, I think you're possibly going to need more than 200 mcg T4. You must work up slowly, though. Make sure you stay on 200 for at least six weeks, then increase by 25 mcg every six weeks after that if necessary. T4 can't be increase as quickly as T3. :)

truthseeker136 profile image
truthseeker136 in reply to greygoose

Thanks Greygoose. I think I was able to take 200 T3 because it was a weak brand (Tiromel). When I used another brand briefly, I only needed 75- 100 mcg. I am also overweight and probably need more. Overweight people are found to be T3 resistant.

I will follow ur advice on T4. I am shocked to hear it can take as long as 6 weeks.

I have extensive bloodwork for the time period from before treatment. At the time, it looked like my thyroid couldn't make T4 and converted all of it to T3. Eventually both started falling. Pretty sure I can convert.

greygoose profile image
greygoose in reply to truthseeker136

Tiromel is the brand I take. I don't find it weak - and I've tried a lot of others. It could just be that you're becoming less resistant.

it looked like my thyroid couldn't make T4 and converted all of it to T3

That's not possible. Your T4 might have been low but you must have had some. And it can't all be converted to T3 - at least a third of it is converted to rT3 as a matter of course. But, the thyroid gland does make T3, and in certain circumstances will increase its output of T3 more than T4. Doesn't mean you have extra-super conversion. :)

truthseeker136 profile image
truthseeker136 in reply to greygoose

I didn't know that t3 could be made by the thyroid without making T4 first. I thought was the necessary precursor. Thanks for enlightening me.

greygoose profile image
greygoose in reply to truthseeker136

You're welcome. :)

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