anyone help with article that states that it is not alright to prescribe different doses of Liothyronine on alternate days?

[HilaryWB]

I am on T3 and Levo 75mcg. but I feel hypo since I was taken off 10mcg T3 daily and put onto T3 at 10mcg /5mcg on alternate days Has anyone a reference regarding this unorthodox prescribing of T3 in split different doses I can send to him to support my case against this splitting of the T3 like this as I feel awful on it and suspect my Levo is too low as guidelines state it should be 1.6 - 1. 8mcg per Kilo of body weight for those post thyroidectomy/ RAI and have no thyroid . I weigh just over 65 kg. so should I be on about 100mcg?

I emailed on the 26th June, (very politely!) to request my Endo reviews my medication but he has not replied . I know he will have got the email as I sent it to him through his secretary ( at her suggestion.) How long do I give him to answer?

My GP will test me next week for Ferratin, Folate, B12, Vit D and cortisol as this has NEVER been done and also request a full thyroid blood screen, then if the results are abnormail she will contact the endo as she understands my concerns.

Anyone please advise me on how to get answers from my endo? I am now considering a formal complaint to the Health board as I believe I am not being treated appropriately or listened to by him but that is a last resort.

[SlowDragon Administrator]

Make sure you test correctly

early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Which size and brand of T3 are you taking

You could/should change to taking 7.5mcg daily rather than different doses on different days

Eg as 2.5mcg x 3 separate doses spread across the day with last 2.5mcg dose 8-12 hours before test

[jimh111]

Logically it is OK to split 10 / 5 on alternate days although I would tend to split the tablets such that the doses are more equal.

An average person gets about 30 mcg T3 daily, around 24 mcg by converting T4 and 6 mcg direct from the thyroid. Your T3 levels will vary up and down but this will be compensated a little because when you take the 10 mcg dose there will half of the previous day's 5 mcg dose left and when you take the 5 mcg dose there will be half of the previous 10 mcg dose left. The variation is closer to 2.5 mcg than 5 mcg (the maths is greatly simplified). 2.5 mcg is less than 10% of 30 mcg. The deiodinases will smooth out the variation a little more. So, your daily fT3 will vary by a small amount. Undesirable but with little overall effect.

Of course you may be simply on too small a dose which is a different issue.

The 1.6 mcg LT4 per kg is a rough guide for people on levothyroxine monotherapy. If you take T3 you would generally recued the LT4 dose by 3 x LT3. On this basis a person your weight would be on 10 mcg LT3 + 75 mcg LT4. This is a rough guideline for the average person and given your response to reducing your LT3 it very much looks like you need a higher dose.

I think you should push for going back to 10 mcg LT3 daily. It seems sensible to stay on 100 mcg LT4, after a month or two you could experiment with reducing your LT4 a little. I wouldn't try to argue about the 10 / 5 protocol, I think you have weak grounds for disputing it and your real issue is too little hormone. If you persue the 10 / 5 issue they can just put you on 7.5 daily and you would be stuck with it.

[HilaryWB in reply to jimh111]

Thanks,good advice. jimh111 Just to recap, you feel I should remain on 10mcg Lio, and I will go along with the advice here , ie not to pursue the split Lio dose, and go back to the daily 10mcg, but would I benefit from taking 5mcg twice a day instead of the one dose of 10 mcg inthe morning? And are my worsening hypo symptoms because I need my Levo raised from the 75mcg I am on, to the 100mcg as I have no thyroid ?

But how do I get my Endo to see me to discuss these issues? I feel I am being ignored. I am suffering so much from "brain fog" and dreadful fatigue at the moment and find it hard to think clearly. I can say hand on heart I have never felt as bad as this , ever. I cry for no reason, I am exhausted and keep falling asleep.

Is it unreasonable to expect that my endo would discuss these issues with me? I have never set eyes on him in 4 years and am only contacted briefy by phone about twice a year.Is this standard procedure?

I wonder if it is ageism, perhaps "they" don't want the expense of giving me the T3 because I am "elderly", they have to cut costs and I have a lot of other health issues and am expendable..

What can I do to be treated properly?....the endo has never replied to my letter which I sent on the 26th June, it was very polite, in it I said I wasn't feeling well on his new regime , and was feeling hypo, so could we discuss options etc.. I feel I have hit a brick wall and am being treated very badly. Please, how can I get him to listen to me? Do I write to my Health board and complain, do I ask for a second opinion.... what can I do ? So sorry if I am being a nusiance but only those on the forum really understand what it is like not to be listened to.

[jimh111 in reply to HilaryWB]

Given your symptoms I think you should be on at least 10 mcg liothyronine. I would split the dose between morning and bedtime. I would aim for enough levothyroxine to get your fT4 in its reference interval. I wouldn't aim for an above average fT4 because higher levels are associated with cancer and cardiac risks.You may need higher liothyronine doses but at least see how you do on 10 mcg initially. Endocrinologists are a pain and most have dismal knowledge of hypothyroidism and science.

Please pm me with the name of the endocrinologist who doesn't respond to your letters.

[HilaryWB in reply to jimh111]

how exactly can I do that please?

[HilaryWB in reply to jimh111]

My last thyroid tests were way back in February I think.I was on 75mcg Levo and 1omcg Lio.

TSH - 0.01

FT4 - 16.5

FT3 - 8.5

he based the new medication on that

(ie continue &% mcg Levo but Lio down from 10mcg to the split dose of 10mcg / 5mcg alterate days.

hope that helps. I have never ever ( in my 40+years of no thyroid ) had a screen for folate, ferratin, b12, etc but my very supportive GP is going to try to get them done but the labs may refuse her as they normally have to be authorised by a Consultant Endo.

I am not sure how I pm you with Endos name ,as I have never done that before! ( see below).I know he specialises in Diabetes.

[jimh111 in reply to HilaryWB]

I think I'm getting a bit confused, I mean to say resume the higher dose of liothyronine you were on.To private message me click on my name and then select 'Chat'.

[HilaryWB in reply to jimh111]

jimh111 I have pm'd you as requested.

[HilaryWB in reply to jimh111]

re the above - I am not on 100mcg Levo, but on 75mcg. Also with no thyroid my only source of T3 is the 10mcg had been taking.Also in my case the Pituitary cannot "speak" to the thyroid in order to regulate the amounts of thyroid hormone because I have NO thyroid at all. That link is broken, all the more reason I should have apropriate treatment, Like all those with no thyroid, without replacement thyroid therapy I would go into a coma and die in 6 weeks,surely this is a reason to expect to be treated with understanding and empathy. and ensure I am being treated properly.

[dizzy864]

Personally, I am extremely sensitive to changes in T3. I would not be able to cope on different doses on different days. I split my dose into three ( 15 mcg each ) each day. I never miss a dose because, I "wind down" and need it by the time it is due. Not evereyone is as sensitive as me. I do not think I would have a problem with different doses of levo on different days although I have never needed to do this. But levo works very differently to lio.