How do I take this further to get my liothyroni... - Thyroid UK

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How do I take this further to get my liothyronine tablets?

Locky1971 profile image
6 Replies

I've been emailing back and forth to my surgery but they said the ICB have decided I can't have liothyronine tablets instead of the cheaper capsules.I had a prescription filled in December and started the Roma brand liothyronine capsules on 26th December 22. On the 27th December I came out in a rash all over my back that has slowly spread to my chest, belly, legs and arms. The back was crusty and itchy. The ones on my arms and legs went dry looking but all itched.

The nurse said dermatitis and I still have the rash even now but it's slowly fading.

The only different thing was the tablets. They contained titanium dioxide which can cause a dermatitis rash though it's rare and it's also banned in Europe for causing tumours in the Lungs of rats in trials.

I've asked for tablets that I had originally been issued by my Endo before the surgery decided the capsules were cheaper. They said to go back to the pharmacy but the pharmacy can't change them without a new prescription. The surgery refuse to issue the tablets.

I've been told to go levothyroxine only which doesn't work as I have convertion problems and try the Roma again in 3 weeks. I was on NDT but hubby is ill with long covid and we can no longer afford them. But I can't afford to be ill on medication I can't take or risk being rashy for another lot of weeks.

It's stressing me out so much. I have yellow carded the capsules but I still have the problem of how to get my tablets reinstated.

Does anyone know who to call or contact to sort this.

Thanks

L x

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Locky1971
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6 Replies
SlowDragon profile image
SlowDragonAdministrator

Which size tablets were you taking?

Request 20mcg tablets and cut to get dose you require

20mcg tablets are CHEAPER than capsules

Up to date prices here

healthunlocked.com/thyroidu...

tattybogle profile image
tattybogle

if it was an NHS endo who first prescribed the T3 ,before the GP took over prescribing ... and the GP's agreed to take over prescribing it on the NHS..

then according to the RMOC guidance for prescribing T3 ... the GP should NOT reduce or remove the patients T3 prescription WITHOUT some involvement or guidance from an endo .

NHS regions all seem to refer to this RMOC guideline as the basis for their regional prescribing policies for T3. So GP should accept what it says.

sps.nhs.uk/wp-content/uploa... RMOC-Liothyronine-guidance-V2.6-final-1.pdf

"NHS England guidance states that prescribers in primary care should not initiate liothyronine (L-T3) for any new patient, and that individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine (L-T4) where clinically appropriate.

Prescriptions for individuals receiving liothyronine should continue until that review has taken place.

The majority of patients suffering from hypothyroidism can be treated effectively with levothyroxine alone, but liothyronine is perceived to be an important medicine for a small proportion of patients in order to maintain health and wellbeing. The prescribing of liothyronine is only supported if initiated by, or considered appropriate following a review by, an NHS consultant endocrinologist. The withdrawal or adjustment of liothyronine treatment should also only be undertaken by, or with the oversight of, an NHS consultant endocrinologist. Where General Practitioners (GPs) are involved in such treatment changes this should be with NHS consultant endocrinologist support. This advice applies to both liothyronine monotherapy and combination therapy with levothyroxine. "

So this is RMOC ~Liothyronine guidance, is the basis of your argument that they should NOT be telling you to go back to taking Levo for 3 weeks . if they want you to do that they must at least discuss your case with an endo, and it doesn't sound like they have ?

After that, as slowdragon pointed out its a case of pointing out that the 20mcg tablets are now cheaper thn the capsules anyway.

helvella profile image
helvellaAdministrator

Titanium dioxide has not been banned in Europe in medicines. Only in food and drink.

It is the capsule itself that contains titanium dioxide and an iron compound (depending on dosage). Not the contents.

I suggest you do what the Patient Information Leaflet suggests for anyone who can't swallow tablets - which is to open the capsule and disperse the contents in water. That way you avoid gelatin, titanium and the iron compound.

x

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DippyDame profile image
DippyDame

Contact your endo....or initially his/ her secretary.

TaraJR profile image
TaraJR

Which ICB are you under?

notatortoise profile image
notatortoise

I am also having a problem with supply

My pharmacy said that the 10mcg of Morningside liothyronine tablets that I’ve been on for 2 years, with no side effects, were ‘out of stock’ and they only had Roma capsules which after taking for 10 days I discovered I couldn’t tolerate, too many side effects.

I went back yesterday to see if they had managed to obtain Morningside tablets and was told that ‘They were too expensive’ and as the doctor had written ‘capsules’ on the prescription they could not dispense tablets!

Helvella has explained that 20 mcg Morningside are cheaper than Roma and can be split

So I called the doctor's surgery to ask if they could contact the pharmacy to dispense 20mcg Morningside.

Will let you know if I have any success

Good luck

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