non compliant with pills? : has anyone else had... - Thyroid UK

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non compliant with pills?

Thyroidmeg profile image
10 Replies

has anyone else had problem with nurse saying are you sure you’re taking your thyroid tablets I’ve been asked twice this week . It’s really upset me.

Apparently the lab said non compliant or dose needs adjusted.

why would anyone not take tablets I don’t want to feel this way.

They said but you vitamin d was sufficient before too.

I’ve to get a print out if I go in to the surgery so can’t agree over phone.

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Thyroidmeg profile image
Thyroidmeg
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10 Replies
Buddy195 profile image
Buddy195Administrator

Definitely push for a print out of results (which you are legally entitled to) and share with us when you get them.

Thyroidmeg profile image
Thyroidmeg in reply to Buddy195

Will do. I recently posted my monitor my health results from may and the t4 was above range and t3 very low so looks like I’m not converting . I’ve got to go in and get nhs results (will be interesting to compare)

I have ordered another monitor my health with antibodies test etc too so will be interesting to compare

Getting retested at nhs dr end of October . I’m currently on an extra 25 mcg to see what happens. (So now on 225)

Sparklingsunshine profile image
Sparklingsunshine in reply to Thyroidmeg

I had this back in 2021, I was on 75mcg andfollowing a blood test my TSH was above range, my frees were low, so I knew the next step was a dose raise. When the GP phoned I got the third degree about pill compliance as well. They cant help but blame the patient. I took great delight in putting him straight.

Sparklingsunshine profile image
Sparklingsunshine in reply to Thyroidmeg

I was on 200mcg last winter, my FT4 was very high in range but FT3 was middling. You've probably heard that over range or high in range FT4 long term isnt desirable for health. I decided to self source some T3 and added that to reduced Levo. Its made a big difference.

Thyroidmeg profile image
Thyroidmeg in reply to Sparklingsunshine

I’m a bit anxious about that but I think it’s my only option . Does it have side effects? where is best to source it from ? I’ve got some money but not loaded but I won’t grudge it if it will help me feel better

Sparklingsunshine profile image
Sparklingsunshine in reply to Thyroidmeg

You could write a post asking for reliable sources, via PM omly, also you can PM the admins to ask for feedback on any sources you hear about. To make sure they are genuine.

SlowDragon profile image
SlowDragonAdministrator

previous post with results shows

healthunlocked.com/thyroidu...

extremely low Ft3, high over range Ft4 and high TSH

Very poor conversion of Ft4 to Ft3

Have you now had folate, B12 and ferritin levels tested

And increased vitamin D daily dose significantly

Retest thyroid levels 8 weeks after getting all vitamin levels optimal

If Ft3 remains low (below 5-5.5) then, like many people on just levothyroxine, you will need small doses of T3 prescribed alongside levothyroxine

This can only be prescribed by endocrinologist initially

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Typically over 12 month wait to see endo on NHS

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

Thyroidmeg profile image
Thyroidmeg

booked in fir the other tests in October

They changed my vitamin d tablets from 1000 to the gel ones 800iu as a result of the deficiency . I said it might be because you changed pills In lockdown and gel are meant to be better . I didn’t expect a lower dose though :( so I’m am supplementing myself to get it up as they don’t have a clue

They couldn’t test my ferritin or b12 but it’s a different nurse next visit (it was 11 last test a few years ago but they didn’t care)

My total blood count is out too so somethings going on maybe

Jaydee1507 profile image
Jaydee1507Administrator

You had a lot of recommendations in your last post here: healthunlocked.com/thyroidu...

Be sure to take Levo on an empty stomch an hour before food or anything other thn water to drink. This helps absorption.

Not a good idea to increase Levo with FT4 already over range.

You need more Vit D.

Thyroidmeg profile image
Thyroidmeg in reply to Jaydee1507

Yes thanks I’ve always taken my pills religiously but I learned on here to take it on an empty stomach and do that

Great advice on here wish doctors would learn about thyroid

I’m going to write a note for my file explaining it’s not just about tsh

Looking at private endo there is one in Scotland

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