Super hypo

[welcome45]

Gp called me last week to say my blood results came back TSH 130, and my T4 was immeasurable it was in my boots.He referred me for an emergency endo appointment. Ive rung the hospital today as ive heard nothing, and been told i could be 8 to 10 weeks before i get an appointment! Rung my GP and waiting on a call back, ive been on NDT for 4 years and felt fabulous, i cant tolerate levo, but my source has dried up, hence now super hypo. Dont know what to do next, im broken .

[shaws Administrator]

Maybe this company can help in some way?

"NDT is a personally licensed medication in the UK. You can order a prescription - if indicated in your thyroid report - and we send it directly to one of our partner chemists. Please note that we ONLY provide advice on the adjustment of thyroid medication via a new thyroid report, not via emails or calls.

Careful monitoring is essential. Taking too much thyroid hormone or taking it if you don’t need it can lead to undesirable side effects, including anxiety, insomnia, palpitations, and, over the long term, bone loss.

We are happy to switch you to a different brand should your current one be in short supply. A prescription fee applies if you require a new prescription unless you cannot tolerate a specific brand.

countryhealth.co.uk/ndt/

[radd]

welcome45,

Welcome to our forum & sorry you are feeling so unwell. Some NDT's are still available but as demand is outstripping supply due to recalls, choice is more limited and prices have gone high.

A TSH of 130 when medicating any thyroid hormone replacement is unusual and if this were me I would be suspecting assay interference (ie are you supplementing biotin?).

For members to make more informed comments can you advise of med doses, how long you have been medicating and if Vit D, Vit B12, folate and ferritin have recently been tested.

It would also be helpful to know FT3 levels and as most GP's are hesitant in performing this test, members use private labs. Same for thyroid antibodies TPOAb & TGAb as without this basic info it is difficult to assess thyroid function and reasons for meds not working.

Post any results complete with ranges (numbers in brackets) for members to comment.

.

thyroiduk.org/help-and-supp...

[Adelaidebewley]

WoW no wonder he has referred you with a TSH that high. He should have fast tracked you which means you have to be seen in 2 weeks. You must feel awful & you certainly can’t wait 10 weeks, absolutely ridiculous. I am hoping your GP can sort it for you.

[tattybogle]

"but my source has dried up, hence now super hypo"

How long have you been not taking any thyroid hormone at all for ..... I'm assuming that's why TSH is now so high . Surely your GP is not intending to leave you without a prescription of thyroid hormone of any sort until you get to see an Endocrinologist.

I would have though that Myxedema Coma was a real risk with no measurable fT4 and a TSH that high.

Did the GP not offer to try you on some alternative brands of Levo , or try liquid Levo instead if you have had difficulties with Levo previously ?

There was a new update from MHRA last week for GP's dealing with patients who have difficulties .... i think it did suggest they could offer liquid Levo instead even though it's more expensive.

I realise this doesn't solve your NDT problem ... but i'm surprised if GP isn't insisting you take 'something' with levels that bad.

[veryland]

What are your symptoms? My TSH was 90 one time and I had muscle twitching all over during the day and then restless legs when trying to sleep.

My Dr. said a TSH of 90 was something that needs to be taken care of as soon as possible.