Thyroxine dose reduced without my knowledge - Thyroid UK

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Thyroxine dose reduced without my knowledge

Wursty profile image
10 Replies

Hello, I have been hypothyroid for around 15 years. For the past few years I've been taking 100mgs of Levothyroxine every day.

I collected my usual repeat prescription for various medications a few days ago, and my Levo was missing. I queried it with the pharmacist, who told me my doctor had cancelled it!

I rang my surgery to query this and the receptionist insisted I had not had a prescription for 100mgs since 2020!

Several phone calls between Boots and the surgery didn't get anywhere either.

The day after, I rang the surgery and was told the doctor had changed my dose from 100 to 75, and I was to have a blood test (first one for months!) after three months.

My surgery has not been offering face to face appointments since lock down, unless they deem it necessary. You are lucky to see anyone and rarely see the same GP twice. Most of them would walk past you in the street.

Why would my dose be changed without recent testing or monitoring? Any explanation would be appreciated! Thank you!

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Wursty profile image
Wursty
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10 Replies
RedApple profile image
RedAppleAdministrator

Wursty 'Why would my dose be changed without recent testing or monitoring? '

Simple answer... it should not!

When was your last NHS thyroid blood test and what was the result?

Buddy195 profile image
Buddy195Administrator

Like RedApple I’m truly shocked that your GP has reduced your dose without having recent bloods and offering a consultation. I would make a complaint to the practice manager in the first instance, explaining that you need your medication reinstating to 100mcg (but agree to having a blood test and an appointment to discuss these results asap)

Lavington20 profile image
Lavington20

No doctor should change the dosage of a repeat medication without conducting further tests, however keep in mind that he could have looked at the results of your previous blood test. I know this may be difficult but would it be possible to have a private thyroid function blood test?

SlowDragon profile image
SlowDragonAdministrator

Make a written complaint to practice manage tomorrow

Insist on reinstating of 100mcg prescription

Dose should not be changed without consultation with the patient

Do you know what your most recent thyroid and vitamin results were?

all thyroid blood tests 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)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

HealthStarDust profile image
HealthStarDust

It doesn’t sound like it was reduced as such.

The bit about you not having had any for years according to their records. sounds like there has been a c$$k up of some kind and now the GP is restarting your medication at a dose they deem reasonable since they’ve no recent blood work to go on.

Write to practice manager, speak to another GP in practice to sort this out asap. Simply state you have no idea what’s gone wrong but your health can not wait for them to fish out and insist they reinstate 100mcg and you will have follow up blood test as well as one before new prescription.

SleepyKitty profile image
SleepyKitty

A strong letter of complaint needs to land with the practice manager asap. There is such a thing as 'informed consent' for you as a patient regarding your treatment and it hasn't happened here. It's an absolute disgrace and your dose shouldn't never have been changed without your knowledge.

Wursty

Seems like there is a lot of deliberate obtuseness between your dr & the receptionist.

This double-dose of stupidity/wilful ignorance is adding further stress to the unfounded levo reduction which could lead to severe effects upon your life.

The old comparison, would this be done to a diabetic or a heart patient or anyone dependant on medication for their life? No, of course not!

I'm wondering if you can also report to another authority (in addition to the Practice Manager)?

waveylines profile image
waveylines

I'd go for complaint to. Practise Manager insisting on reinstatement of your normal dose of 100mcg levothyroxine. Clearly there's been a mix up. State this cannot be left as it will affect your health.Keep to bullet points. Keep it brief. Point out no change in medication should occur without a proper consultation. This has mo happened.

Point out that thyroid medication is for life and you've been stable for years on a 100mcg of levo.

And that first of all levo meds were stopped all together then your normal dose changed without consultation or a blood test or assessment.

(Whoever it is should get a real telling off tbh!!)

shelbydaws profile image
shelbydaws

There should be no change is dosage if they have run no test to validate the change. Some twat Dr. running their ego because someone didn't prescribe it with your usual meds.

Popscicle profile image
Popscicle

This exact thing happened to me today but it concerned my painkiller patches rather than my thyroxine. The label on the boxes was a reducing regime and I had not been consulted and knew nothing about it. When I reread the label it said “Reduce the dose by 6mcg every 3w and review in April”! I realised this was a regime from 2020. What had happened was for some reason the prescription team issued the prescription by copying an old prescription from my repeat list in my notes! So it was nothing to do with the gp. I just wondered if your script error was a mistake made by the prescribing team and not a gp decision at all? Might be worth looking at.

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