Thyroid UK
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Denied T3 meds by endo...AGAIN

When I switched from NDT (couldn't get the levels right) back to T4, I got very unwell. So I decided I needed to be back on T4/T3 again. I had to go see a private endo to get a prescription because the NHS endo was taking ages to get back to me and I didn't think they'd give me T3 anyway. So I got a private prescription and got T3 from Germany. I then eventually saw my NHS endo who also decided that T4/T3 would be best for me right now and we'd see how it went. I got T3 prescribed on the NHS, it was a miracle! I picked up the prescription from the pharmacy and it was the same brand of T3 that I had previously bought from Germany. Interesting!

I have had issues with thyroxine ever since I've been on them (14 years since my TT now) and have recently discovered that I am corn intolerant, which of course is the filler in most of the meds. My NHS endo has been trying to find a thyroxine that doesn't contain corn and prescribed me the liquid thyroxine. HOWEVER, she's told me to go onto 100mcg of liquid thyroxine only and now won't prescribe me T3. I haven't even been able to go to the clinic to talk to her about this because they cancelled all appointments including mine in Dec as the hospital went to "critical alert" and the clinic won't reopen now until March and who knows how long I'll wait to be seen. I've pleaded with her via the receptionist to just prescribe me with T3 and she's refusing and says I should just go on the liquid stuff.

I'm not impressed at all. The liquid thyroxine has warnings in the leaflet it comes with specifically about its filler ingredients causing stomach issues - and as I have IBS (from the thyroxine I've been on for years!) then I'm not keen to try it. And last time I dropped T3 I got really sick so I'm not keen to try that either!!

What can I do about the T3 issue?? Can I complain in some way?? I've ordered some from Mexico but it hasn't arrived yet. I've got 3 days worth of T3 left and then I'm done. And I'm worried. Should I start taking just half my dose of T3 to try and stretch it out a bit?

I just can't believe that consultants can just do this to people.

14 Replies
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When did you order your T3 from Mexico? The supplier I used says it generally takes about 21 days, mine came in 12 days, a friend's came in 19 days, but some people have waited up to 6 weeks. Mine didn't get stopped by Customs, I didn't have to pay any fees although not everyone is so lucky.

Is the endo who is refusing T3 now the same one that prescribed it originally? Doesn't seem right that she should suddenly change her mind.

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Ordered 6 days ago...I guess I'm either overly optimistic or desperate!! If the endo had given me any idea that she was going to take away my T3 I would have been much more organised!!

Yes, the endo who is refusing T3 was the same one who prescribed it. It doesn't make sense, at all.

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Brighter84,

It makes sense because the T3 has maize starch in it too.

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Brighter84,

If you tolerate the maize starch in T3 why aren't you able to tolerate it in Levothyroxine tablets?

thyroiduk.org.uk/tuk/treatm...

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Yes, I know they both have it in. I was trying to find an alternative for both. But she only found me an alternative for T4 but not T3 (I'm not sure it exists beyond NDT!) and so is just dropping the T3?

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Brighter84,

Why wouldn't she drop the T3 if it has an ingredient you are allergic to? I don't believe liquid Liothyronine is available on the NHS but I think it exists.

Have a look and see whether or not maize starch is an ingredient in NDT stopthethyroidmadness.com/a...

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I know two people that get the liquid form. It’s MorningSide. But they were emergencies and it was prescribed from the hospital so not sure if that’s just a hospital dispense.

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EbonyEvans,

Is that liquid T3?

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Oh, sorry @Clutter. No, I thought you meant (liquid) Levo. Mexico has Liquid but I think it’s more of a combo mix. Or has hydrochloride instead of sodium? It got lost in translation when I asked but that was about 4 years ago so I can’t confirm recently.

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I am really sorry for you having had a TT. I have my gland but was far more unwell on levo than before being diagnosed, finally, when TSH was 100.

Eventually, through Thyroiduk.org.uk found that there were other options. Through trial and error I finally found out what suited me and have been well since.

I think everyone who has had a TT should have T3 added, or NDT, or T3 only - cost doesn't matter if patient recovers her/his health. We didn't ask for the pharma companies to raise the cost so high so they have nice profits and also making more with additional medication for clinical symptoms.

It will be over my dead body before I take levo again. They have no inkling what we feel like if the hormones prescribe make us feel even worse.

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i am appalled and i suggest you write to mp, i did andhe has said t3 is still avaiable on prescrt at dicretion of endo- when this is life threantening it is disgraceful that med s are withdrawn, i have found onemonth of levo athome and one month t3 then i am done too-- i cant seem to get ndt right either and i think i am undermedicated for a year! no wonder i have 3 strands of hair left,cold tired no energy andgrumpy!

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@bluepettals2

Have you tried adding some T3 to your NDT? Some think it’s fine on its own but you may need a boost of T3.

Just a thought.

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yes ebony but i have to get the t3 first and worried about ordering from abroad although i am not sure how much i should take, for a life threatening illness itis shocking we are abandoned and there was all this crap a few years ago about how they were concerned for our health if we took ndt- now its all taboo- lawful killing !

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I can inbox you my reputable supplier for T3, if you need one. Tablets not liquid. Not sure if this link has All Liothyronine listed but it might help you.

stopthethyroidmadness.com/a...

And maybe:

thyroiduk.org.uk/tuk/treatm...

We are abandoned but it’s the lesser of two evils. I’d never have found this forum and I’m more informed than ever.

If we educate ourselves - we rise above it. Just a shame we have to pay for it financially. But if we must pave the way for future generations, so be it. 💜

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