Update on update . Thank you all so much - Thyroid UK

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Update on update . Thank you all so much

poppppy profile image
9 Replies

My neice was called back by gp today after a bit of pushing. Unfortunately she called before I could physically you get there . Knowing that I wanted to be there .

But some good news. Gp immediately increased dose to 50 mg levothyroxine. Bad news is bloods in 4 to 6 weeks from now. So I have said to neice . Please ask next week for repeat bloods straight away .

I have told her all your wonderful advice . So thank you for being there for us .

You sorted me out and now you are sorting my neice out . So thank you

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poppppy
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9 Replies
SlowDragon profile image
SlowDragonAdministrator

Doctor is correct, bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Unless she’s lactose intolerant, best to avoid Teva brand levothyroxine, certainly initially as it upsets many people

Meanwhile ask GP to test vitamin D, folate, ferritin and B12 NOW

Plus coeliac blood test

Or test privately

jimh111 profile image
jimh111

Why blood test one week after a change I dose? It will be useless.

Anthea55 profile image
Anthea55

I know it seems a long time to wait 6 to 8 weeks for retesting, but it gives your body time to settle down.

When I was first diagnosed I looked at various websites for info. One of them (can't remember which) compared it to using a kitchen sponge - if you use it dry it won't absorb much water, but if you soak it under the tap and then squeeze it out you will find that it soaks up much more water. So you have to wait for your thyroid to adjust after each dose change.

Hope your niece gets sorted out. Well done for pointing her in the right direction.

DippyDame profile image
DippyDame

Sorry, but you need to review your advice to your niece ASAP.Before testing you must wait 6/8 weeks after a new dose to allow it to settle into the system ....otherwise results are irrelevant.

Her GP gave good advice....though 4/6 weeks is a tad soon.

Charlie-Farley profile image
Charlie-Farley in reply to DippyDame

Hi DippyDame poppppy

Have to say 4-6 weeks was how long it took for symptoms to return when I was having my dose increases. Of course the GPs kept saying come back in three months, but I couldn’t function for that long, symptoms were horrendous. I booked when symptoms started to return.

Actually, I just took to getting own bloods done and submitted results with justification and request to up medication. I overloaded them with information, data, relevant scientific paper references and their own NHS guidelines.

(they hate me - but I got my way! 🤣)

DippyDame profile image
DippyDame in reply to Charlie-Farley

It is not unusual for symptoms to return briefly after an increase which is why we are advised to wait at least 6/8 weeks for the dose to stabilise before next test.T3 cannot be treated like paracetamol for a headache....if you feel unwell take a pill!

I need a huge dose of T3-only to function and did the full nine yards with replacement thyroid hormones before finding my therapeutic dose. I discovered the hard way that TUK advice to go 'low and slow" with dose increases is correct.

Having said that, I understand why you pushed hard to be listened to. I just gave up on medics because they didn't understand why I need a high dose and were not prepared to prescribe it...so in the end I self diagnosed based on research and advice here and self medicate. That is the last resort.....after many decades of poor health.

I gave my surgery a timeline to go into my notes, of what I'd done and why, and now they accept patient autonomy and they don't hold it against me - they see that I have improved without killing myself!! They are otherwise capable medics....just poorly educated in matters thyroid which is the problem plaguing so many patients.

Maybe I've just been lucky - not regarding seriously ill health but in finding the solution! - I realise that is not always the case.

Good to know you are now correctly medicated and well...take care!

Hopefully poppppy will have success for her daughter too.

Charlie-Farley profile image
Charlie-Farley in reply to DippyDame

Here! Here! Let’s hope so (far from a) DippyDame! 😉👍

poppppy profile image
poppppy in reply to Charlie-Farley

Exactly . You have to push . To be fair I think they are overworked and if you don't shout loud they can't hear u in the crowd but if u r ill u have to . On the other side of the coin us hypothyroids are back of the queue and the research is ignored as we know. The clinic is even called the diabetes clinic . We don't have a sign . And liothyronine as you know is on the hit list . Along with gluten free food prescriptions and holiday vaccines . All things that can be done with out . Where as without liothryonine I would slip into a coma in time as thyroxine does not convert to t3 in my body . Proven from numerous blood tests .some when taking lio thyroxine. Some when only on thyroxine. T3 subnormal when high t4 on thyroxine. Case closed .

poppppy profile image
poppppy in reply to DippyDame

Thank you its just she will have been on thyroxine for about 8 weeks by the time they do the test . 2 to 3 weeks on 25 and then 6 weeks on 50 . And she is aneamic too

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