Liothyronine T3: Hi any advice please on how long... - Thyroid UK

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Liothyronine T3

bubbatetley profile image
14 Replies

Hi any advice please on how long you can stay on T3.. I only started it this Monday which was prescribed by my new endocrinologist.. I have been on Levothyroxine for 6 years with such awful symptoms , too many to list.. So decided I was NOT going to take Levothyroxine again as it was physically and mentally killing me.. I told her that I must be allergic to it , and if they didn't change me to T3 I will kill myself, as it was the Hospitals fault for not managing my disease adequately and sheer incompetence on their behalf.. SHAME ON THEM!!!!! I would be grateful for any advice on how long can you stay on the T3 for.. She wants to see me in two months to see how I am doing..

I have read on the Forum that people have been on T3 for years and are still being prescribed them..

Thank you all

Keep smiling

Regards

Tetley

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bubbatetley
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14 Replies
greygoose profile image
greygoose

A healthy thyroid makes T3 during the whole of your life, so I don't see why you would be restricted to taking T3 for just a short while. As far as I know, there are no limits - did the endo say there were?

I've been on T3 only for about 6 years, I think. I don't get on well with T4, so there's no way I would consider going back to T4 only. :)

bubbatetley profile image
bubbatetley in reply togreygoose

Hi Greygoose, hop you're👍 well. My Endo that I saw on Monday is saying see how I am on T3 ,but youu can only stay on them for a short while..Can Youu advisee me please, as I have lost all faith with NHS, and can not afford to go private, also Iam confusedd about the difference between Hypo and Hashish, one Endo is saying I Have Hashis and the others saying I dont, so I am confused.

Thank you

Kind regards

Bubba

greygoose profile image
greygoose in reply tobubbatetley

Hashi's is the cause of becoming hypo - although there are other causes.

Hashi's is an autoimmune disease, where the immune system slowly destroys the thyroid. It's diagnosed by having an antibody test - although these tests aren't always conclusive. So, another way of diagnosing it is to have an ultrasound of the thyroid.

One complication of diagnosis is that some doctors refuse to call it Hashi's, for some reason. They prefer to call it Autoimmune Thyroiditis. But, that's usually in the UK.

If you have high TPO and/or Tg antibodies, then you have Hashi's or whatever else they prefer to call it. But, having low antibodies doesn't not automatically mean you don't have it, because antibodies fluctuate. Also, some Hashi's people never develop high antibodies. But, usually, the reason doctors refuse to admit you have is is pure ignorance - they don't understand it!

Whilst it's important to know if you have Hashi's, due to the way Hashi's affects hormone levels, there is no special treatment for it. Nor is there a cure. So, let them argue amongst themselves, it doesn't change much. As long as you know, that's the most important thing. :)

You can stay on T3 for the rest of your life, but you might do better on NDT or a T4/T3 combination. I've been taking it for more than 10 years

Nigel profile image
Nigel

I was never good on T4.I was put on T3 5 years ago and should be on it for the rest of my life. 68 now. I would never want to go back on T4 again

bubbatetley profile image
bubbatetley in reply toNigel

Hi Nigel, hope you are well. Thank you for the reply..Did you have terrible symptoms on T4 and are you better on T3.. Have you ever been told they may take you off of T3 because they are too expensive.. My Endo on Monday said I can only stay on T3 for a short time ,but I refuse to go back onto T4, they made me so very ill with debilitating symptoms and bed bound.. I've been telling the Endos for years that I was so very ill and can not live this way, he was never interested in my symptoms only my ranges. All he ever did was to increase/decease my Thyroxine, regardless of my severity of this awful disease.. would never listen to me and was very patronising. I am going to complain about him to PALS, as I blame him for my decline and have nearly died. I also told him I was suicidal and he never even raised his head let alone console or help me. I was always rushed in/out of his clinic with yet again another script for Levo.. These Endo consultants are absolutely useless and do not know enough about this Disease.. I am now trying to see a professor at the Christy Hosp in Manchester so he can help me..

Thank you

Regards

Bubba

Plumble profile image
Plumble

I have been on a combination of T4/T3 for just a year. As far as I know I won't be stopping it. I was just on T4 for a year but although I didn't feel any worse I definitely wasn't right. As soon as I took T3 I was feeling loads better. I'm on 175mcg levo and 10mcg liothyronine taken 5 first thing and 5 at lunchtime. I have to pay for the liothyronine myself.

Have you been tested for any other things as I had post viral fatigue which wasn't picked up by GP but was by private endocrinologist so am on high doses of vitamin D, B12, omega 3 and folic acid.

Nigel profile image
Nigel

Hi,I do not think that T3 is as expensive as used to be. It is now being brought in from Germany and israel. I believe that the origonal sole supplier is being sued for over charging

Nigel

Gcart profile image
Gcart in reply toNigel

Is that correct about NHSimporting T3 ? If it is then it’s about time they woke up to the fact of the overcharging that goes on

helvella profile image
helvellaAdministrator in reply toGcart

I do not think that the Morningside product is imported. However, I have been unable to get to the documentation to double-check.

The Teva product is manufactured in Hungary - not Israel.

Whether the original supplier (Concordia, Mercury Pharma) is sued or the issue addressed otherwise does not appear to have been decided. Phrases like "kicked the tin can down the road" come to mind.

Gcart profile image
Gcart in reply tohelvella

Um , a scandal isnt it !!

wakeham profile image
wakeham

Hi bubbatetley I hope that T3is the answer to your problems I was taking it for approximately four years but the endo decided to take me off and ammited it was due to cost ! Plus they found I now had automune decease RH and passed me over to the Rheumatologist with great relief I think. And believe you me the meds are no better and I feel rough like yourself so I wish you the best of luck, but keep an eye on your blood tests, good luck.

Regards wakeham.

hutchinson7 profile image
hutchinson7

as You probably know thyroxine (T3) should convert in part to T4. Where the conversion is poor or non-existent the Consultant may consider liothyronine which is short life concentration of T4. If latter works then ,and you feel well on it, it may be long term prescription. But think yourself lucky as ,inUK, Liothyronine is now on a 'black list' so NHS forbids GPs to prescribe it. (The NHS has the point of view that ONLY thyroxine should be prescribed - so your consultant is thinking to help you)

helvella profile image
helvellaAdministrator in reply tohutchinson7

Sorry, but I feel I have to point it out some mistakes in that.

Thyroxine is not T3 but is T4.

"liothyronine which is short life concentration of T4" - makes no sense to me at all. Liothyronine is T3.

"If latter works..." - not clear what you are referring to as the previous substance mentioned is T4.

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