16 year old daughter started on T3 after years of T4 - consultant querying need for NDT

[cunnicar]

Hi all you may remember a couple of months ago I posted - as I got my daughter referred to a consultant (one recommended on this site) as she has struggled for 2 1/2 years on T4 after a total thyroidectomy. She had a nightmare time during GCSEs with fatigue and is waiting for GCSE results now. Well - she got to the consultant and he started he on T3 five weeks ago . so she was on 100mcg levothyroxine and put onto 10mcg T3 (previously on 100 -125mcg Levo alternate days - bloods always okay but constant hypo symptoms) . After 4 weeks (last week) back with the consultant but she felt no better and had bloods done - her TSH had gone to the top of the range ( I don't have them to hand as they are on her phone in her room and she is still asleep) and her Ft3 was mid range and FT4 was low but in range. The consultant said he wasnt surprised she still felt ill as the TSH was at the top of the range and it needed to be near zero. He suggested that he increase the T3 to 20mcg / day, said that she had been on it for just over a month and should be feeling the benefit by now, so if she still didn't feel any better in just over another week to email him. he suggested that if she didn't feel any better he would consider prescribing NDT . He prescribes Armour but he did talk about other brands.

She says she doesn't feel any different yet - but says she has been feeling so ill for so long that she doesn't know what to expect. She doesn't know if she should she give the T3 at higher dose longer? or should she move to NDT, she is a little anxious in case it doesn't work either. she says she feels as if we - the family , are asking her how she is all the time - does she feel any different/ and she doesn't know what to say, because she may feel okay at that moment then feels cold and exhausted the next . I've told her we wont ask any more - she is due to contact him tomorrow or Tuesday. I cant help her because I don't know how she feels but I thought that someone on this site may be able to . (although she keeps telling me I am hypo as I am always cold and tired and gaining weight too - bloods done and told I am normal) - but if anyone can help her id be so grateful .

[SeasideSusie Remembering]

cunnicar It would be a good idea for your daughter to have the following tests

B12

Vit D

Folate

Ferritin

They are all very important and need to be at optimal levels for thyroid hormone to work properly as well as for general health.

She may very well need more T3 as any form of T3 will suppress TSH and hers is still high.

Has she had thyroid antibodies tested (TPO and TG)? I'm wondering if she has Hashimoto's disease (autoimmune thyroiditis) as her TSH has gone up despite the addition of T3. I would get those done as well if she hasn't had them done already.

[cunnicar in reply to SeasideSusie]

Thank you - do you know anywhere I can get them done privately or on line ? - As this consultant is the best she has seen so far, and I don't want to imply , to him, that he isn't doing his job.

[cunnicar in reply to cunnicar]

I meant the thyroid antibodies tested (TPO and TG) only - she has had the others done and all are good. thanks

[SeasideSusie Remembering in reply to cunnicar]

Have a look here bluehorizonmedicals.co.uk/e... They are fingerprick tests done at home. Thyroid antibodies on their own seem to be more expensive than a bundle. Have a look through, Thyroid Plus Six will do the job I think but check them all out. For £30 more the Thyroid Plus Eleven covers everything and will give up to date levels of all important factors.

What do you mean by 'good' for the others? They must be optimal. If you post the results and ranges then suggestions can be given if there is a need for any supplements.

[TupennyRush]

Hi there

I've been on ndt for nearly 2 years after a year of levo. I felt better on ndt almost immediately than I had on levo; but a month on something, with what seems to be an undergone seems like a short time before ruling it out as the right treatment.

Also, i treated with vitamins to get up to the right levels before going onto ndt. If if it's a problem with her vit levels the ndt probably won't work either.

So, I'd suggest testing for vits, supplementing if needed and giving the t3 (at the right dose) a couple more months before trying ndt.

It may be that t3 is not the magic bullet and ndt is the right way forward. I also realise it must be extremely frustrating to have to wait because she should be having a great time not suffering at her age.

I had a lot of problems with my hormones while I was undiagnosed. Given that she's an adolescent (I've assumed 16 ish because of thE gcse) it may be that these are in such a storm because of her age and having thyroid problems that she needs a bit more time for these to settle down. I'm 50 so am not in the maelstrom of hormones but it took me around a year before they got back to being about right

For me it took about a year once I was on ndt to get back to full normality (or as normal as I get), feeling better and better each month.

Good luck

[TupennyRush]

Under dose not undergone!

And just realised you said she's 16 in the header. Sorry

[cunnicar]

Thank you so much - yes her vitamin levels are all optimal - and I am a bit over the top about that as I am a paediatric dietitian - but thank you for your thoughts - it is all good to know, x