Prescription change crisis: Since moving home a... - Thyroid UK

Thyroid UK

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Prescription change crisis

Chillymortal
Chillymortal

Since moving home a few months ago to a neighbouring area after 15 years stable on 100 mcg levothyroxine and 10mcg liothyronine daily I have now been refused liothyronine by my GP, CCG and a consultant. My levothyroxine has been increased to 159mcg daily but I am feeling unwell and suffering periods where I feel like I’m going to collapse. I am concerned that it is interacting with the anticonvulsants that I am also prescribed. I don’t know what to do next.

13 Replies
SlowDragon
SlowDragonAdministrator

If you were well on Liothyronine and originally diagnosed as having clinical need by an NHS endocrinologist T3 should not be stopped

Which CCG area are you now in?

You can fight this, but first may need to get well by getting private prescription for T3 so you can recover

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

please email Dionne


tukadmin@thyroiduk.org

All patients on T3 must be referred back to an endocrinologist before T3 is considered as possible to withdraw

What other medication are you on

Do you have Hashimoto's, coeliac, gluten intolerance or had thyroidectomy

Some background information is helpful

Look at getting DIO2 gene test too. If you test positive this is strong argument for getting T3

thyroiduk.org.uk/tuk/testin...

Thank you, I have had a hemi thyroidectomy. My original T3 prescription was from a sympathetic GP who could see that T4 alone wasn’t working for me. I have moved from mid Essex to north essex. I will look up what you suggested, thank you. Blood test due in 2 weeks.

SlowDragon
SlowDragonAdministrator in reply to Chillymortal

So you will need to see NHS endocrinologist to continue on NHS T3

There may be on on the Thyroid UK list

Otherwise a private prescription from private endocrinologist enables access to cheap EU T3, but it's unclear if that will be allowed after Brexit. Thyroid UK campaigning hard to resolve this

Thybon Henning 20mcg from Germany is 31 Euro for 100 tablets - prescription only

UK T3 approx £950 for 100 tablets

I have seen an NHS consultant who has refused T3 saying they are unable to prescribe it, but they can monitor me if I choose to see a private consultant and get a private prescription for it. I’ve had no costs from anybody. Dread to think what costs for seeing a private consultant would be. Or how often I’d be required to see them. I just can’t budget for that.

It may be costly initially, but if you have been stable on T4 and T3, hopefully you wouldn’t have to see them too often and they could give you repeat prescriptions?

SlowDragon
SlowDragonAdministrator in reply to Chillymortal

Typically £250 first consultation

Full private thyroid and vitamin testing via Medichecks or Blue Horizon FIRST before consultation

£99 often reduced to £79 on offers

Telephone follow up after 3 months - often free

Possibly annually cheaper consultation after that

Long term look at Getting tested for DIO2 is £160 approx - can prove you need T3 and then fight for it on NHS

Thank you. Just arranged for testing today

SlowDragon
SlowDragonAdministrator in reply to Chillymortal

Only do it on Monday, Tuesday or Wednesday latest, so there's time to process before weekend

Only test after 6-8 weeks on constant unchanging dose

My other medications are a combination of anticonvulsants: phenobarbital, phenytoin and Topiramate. I have raised this as an issue with my GP as I believe there is interference between those and levothyroxine. They have written a further letter to the CCG. It’s a waiting game.

Thank you that’s helpful. Sorry to be dim, would I have to arrange the tests myself prior to the appointment then at a separate cost/practitioner?

SlowDragon
SlowDragonAdministrator in reply to Chillymortal

Yes, otherwise first appointment is waste of time without full testing

Low vitamins are extremely common, especially if T3 is withdrawn suddenly

Getting full private testing 6-8 weeks after being on CONSTANT dose

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If/when back on T3, make sure to take last dose exactly 12 hours prior to test

You will see many, many posts on here with members asking advice on results after getting private testing

Eg classic one here

healthunlocked.com/thyroidu...

Its also a possibility to buy the T3 from overseas, and self medicate, as many on this forum do. Althoigh as you'll probably just restore your previous dose its not making any hard decisions.

Your story is sadly one that turns up here a lot :( People who have been stable on a dose for years or decades, then have their dose messed with, and take years trying to get back to where they were. It happened to a dear friend of mine. I think the priority should be to get back on your old dose as quickly as you can, as the sooner you do so the more likely you can pick off where you left off, and won't need a long recovery or to readjust your dose because your needs have changed.

I have patiently awaited my nhs follow up blood test 6 weeks after medication change. In the meantime I’ve visited my GP complaining of breathlessness, feeling faint, fluctuating pulse rate. Finally hospital blood test comes back saying fT4 remains normal at 15.3 and TSH nicely under 1.5 at 1.3. No mention of the T3 they were supposed to be testing. No follow up appointment offered. I could scream if I had the energy!

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