The continuing saga!

Hi all, I've been hypothyroid for about 20 years. Still trying to get myself sorted. Been referred to an endocrinologist, seen him twice. Not much help. Have been self medicating with T3 along side my thyroxine. For about a year now.

Was advised by endo to cut the dosage back, which I did reluctantly. Had another blood test. Feel worse, surprise surprise!

Was taking 100 mcg thyroxine 4 days a week and an additional 25mcg on 3 days a week. Was taking 12.5mcg of T3 twice a day.

He asked me to change the T3 to 6.25mcg twice a day. Thyroxine stayed same

So the comparative blood test results are,

Pre the change Free T3 9.6, now 5.2

Pre the change Free T4 16.2 now 17.2

I decided to tweak the dosage to 12.5mcg in the morning with a further 6.25mcg later in the day. Endo doesn't know this but my GP does. She suggested we do another blood test in 3 months to see how that pans out.

What I would really like to know is , is the 9.6 to high ? What levels are considered to be ok? Been warned about heart and skeletal problems, having a bone density test in a couple of weeks.

I quite honestly would rather live a shorter life than live a lesser quality of life.

As I'm sure many of you know, it's hard to get good treatment for hypothyroidism. Bloody frustrating!

Any help you can give me will be gratefully received.

Thank you

25 Replies

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  • You need to give the ranges for us to make a judgement on whether your FT3 is too high. Raised FT3 correlates with raised risk of heart disease and osteoporosis, which is why the endo is worried. However it does all depend on how you feel.

    Personally I'd ask to have my heart and bones thoroughly checked if you feel best on the 25/day.

  • Sorry the ranges are , T3 3.10 to 6.80 pmol and T4 12 to 22

  • SueOatall,

    If you left 12+hours between last dose and blood draw you are very overmedicated to have FT3 9.6. FT3 should remain within range. I've not seen FT3 range higher than 7.0.

    There is an increased risk of atrial fibrillation and osteoporosis when FT3 is over range for a long time. It is up to you whether you find that increased risk acceptable.

  • Thanks clutter

  • What about NDT ?

  • Sueoathall,

    What about it?

  • Is it an alternative to T3? Don't really know much about it

  • SueOathall,

    NDT is a combination T4+T3 derived from pig thyroid.

  • Would that suit me better do you think? Or is it guess work? Do they prescribe it in the UK?

  • Sueoathall,

    I've no idea whether it would suit you better or not. NDT isn't licensed for use in the UK so it is rarely prescribed on the NHS. Most members using it have a private prescription or buy online and self medicate.

  • sueoathall NDT has a fixed amount of T4 and T3 in each grain (a grain is one tablet and contains usually about 38mcg T4 and 9mcg T3, those amounts may vary very slightly depending on brand). A combination of synthetic T4 and T3 gives greater flexibility in the amounts of each hormone so it's easy to fine tune if the amounts in NDT don't suit.

  • Oh I see. Thank you that's very helpful

  • I don't suppose you have had RT3 tested? You shouldn't really need your T3 that high to feel OK.

  • What's RT3?

  • Reverse T3. One out of four iodine molecules is snipped off the T4 molecules to make T3. But it has to be the right iodine molecule. If the wrong one goes it produces reverse (inactive)T3 which binds to the receptors, blocking the correct T3 from acting.

    The problem is that the normal free T3 test doesn't distinguish between the two types. So it looks good, but the patient feels awful.

    The solution is T3 only therapy for a while.

  • Can you get a private test for reverse T3 ?

  • Yes, Blue Horizon do it.

  • Thanks

  • sueoathall I don't know much about rT3 but this article might help stopthethyroidmadness.com/r... (and if you understand it can you explain it to me please 😁)

  • Oh thanks.I'll have a read

  • Blimey hard to understand! Lol

  • 😂 Now you know why I said explain it to me LOL! Some of this stuff goes straight over my head. I probably wouldn't understand it even if I didn't have hypo brain!

  • Lol I know what you mean !

  • The body produces extra RT3 instead of T3 as a defence mechanism when it is under stress. It is designed to reduce metabolism and hence the body needs less resources to function - albeit function at a lower level. Effectively this kicks the body into a hypothyroid state, even in the presence of plenty of T4. That stress can come from many different threats to the body. The only way to identify that this mechanism has been triggered is to split out the T3 blood test into active FT3 and inactive RT3 by a more complex test. That is how I interpret it - does that make any sense?

  • That makes perfect sense, thank you

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