Liothyroine stopped again!: I had a total... - Thyroid UK

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Liothyroine stopped again!

Baggieswidow profile image

I had a total thyroidectomy 4 years ago and 6 months later was prescribed Liothyroine which made a massive difference then 16 months ago it was stopped with no alternative and was told it was due to the cost. I then had a series of tests which proved I needed it and got it back. Today I have been told I won’t get anymore! I have been given an emergency appointment with my Endocrinologist on Friday and will also get my bloods done. When should I stop my Levothyroxine and Liothyroine in order to get accurate results Friday morning and where do I go from then if it’s stopped again?

20 Replies

who has said it should be stopped? (i assume you re in the uk. if so, then your GP cant just stop it.

Others will answer your blood test question with more confidence than me (i believe you take last Levo Thurs am andlast Lio Thursday night before a Fri morning test, but i may be wrong)

Yes I’m in the UK, he said it was no longer being manufactured so they could no longer prescribe it.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Baggieswidow

he said it was no longer being manufactured

He's telling porkies!

SlowDragon profile image
SlowDragonAdministrator in reply to Baggieswidow

He’s lying

If an NHS endocrinologist said you have clinical need of T3 a GP should not stop prescription

The local CCG may be pressurising GP due to cost .....GP should not alter T3 prescription - should refer to endocrinologist

pulsetoday.co.uk/news/clini...

thyroidtrust.org/a-gp-write...

New NHS England Liothyronine guidelines

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Which CCG area are you in? Some areas are more difficult than others

He’s an idiot. Did he think you wouldn’t be able to check that? Is he aware of a new fangled thing called the internet? 🤸🏿‍♀️🥛

Luisa317 profile image
Luisa317 in reply to MissGrace

🤣

Babette profile image
Babette in reply to Baggieswidow

I took my prescription for liothyrinine to the pharmacy last Friday and collected it on Saturday. No problems getting it.

Who is "he"? ... "He" sounds like he is either very misinformed or a downright liar. ... Even if he meant THAT particular brand of Liothyronine is discontinued, there are certainly other brands that can be prescribed. ...And you better get someone to prescribe it soon or your life is going to be miserable . Or you're going to be dead. ... You have no thyroid gland. You can't live without getting the proper amount of thyroid hormone from a prescription.

I may be wrong, but I was told to take the lio 12-15 hours before, no sooner, otherwise you will skew the results and it will look like you don’t need it as much as you do. (This was FTPO advice which I followed and it worked for me).

When I take levo, I take it first thing in the morning. My last pill before a blood test, regardless of what time the test is, is always the pill from the day before. Then I take it right after the blood test for that day.

Good luck to you. It’s outrageous that they can play with our lives like this.

you need it in writing from who is stopping it and why (cost) then you go to local ccg and fight it, they can give individual funding. Your gp just doesnt want it coming out of his budget. He cant stop it due to cost or 'no longer manufactured' he will look a total idiot, lol thats what my dr put in writing, get your endo to do letter for ccg to say 'clinical need' i fought it and got individual funding. It takes the pressure off gp and his precious budget (his annual bonus for saving money)

I got mp involved, nhs england and cc'd everyone into my emails with ccg. It took 10 months so start now. They are not suppose to remove from people already on it and certainly not for cost.

in reply to endomad

Good to read your reply as I have the same situation.My GP has stopped prescribing my T3 and I now will have to do the round trip of 16 miles every 2 months to get my prescription from the hospital where I see my Endo.I have three pharmacies within 1 mile of my home. I am asking myself what would happen if I didn't drive?

I am grateful to still have my T3 but if this is the NHS looking after the elderly,(79 yrs old this Month)) I despair !!

endomad profile image
endomad in reply to

yes i had round trip of 60 miles every 3 months to get prescription from endo as gp refused. CCG refunded hospital. What a waste of my time, petrol, parking charges and of course endos time, to save money!!!

in reply to endomad

Oh Golly! Your trip makes mine seem no distance.

However, it is the principle of what is happening that is hard to understand.

As you say ,a waste of time etc......

As I now have to collect my T3 from the Boots Pharmacy within the hospital,I asked whether I could have it put through electronically to my Boots pharmacy in the town 3 miles away and collect it from there,but was told that because it was issued in the hospital ,it has to be collected from there.

If anyone else knows otherwise I would be very pleased to hear from them.

I get fed up with the mere mention of T3 and would gladly do without it if I could !!

endomad profile image
endomad in reply to

yes and if hospital pharmacy were low on stock i would have to go back again few days later, so always phoned them 3 days ahead of endo appt to make sure they had stock, i felt all my t3 energy was being used up just trying to get my prescription, they make us jump thro hoops hoping we will go away. Its bad enough not having a thyroid and they make me feel like i am begging for heroin!

You were prescribed lio?

I’m never ever allowed, I had a total thyroidectomy , and feel awful on just t4

This needs to change x

Here is a model letter i wrote for someone else regarding withdrawal of T3. Please adapt it to suit your own circumstances.

BTW T3 is being manufactured. if you have a clinical need for it you should be prescribed it.

Your Address line 1

Your Address line 2

Your Address line 3

Your Post Code

Dr. name here

Surgery name

Address line 1

Address line 2

Address line 3

Dr.s Post Code

Dear Doctor (insert Dr’s name here)

Refusal to prescribe liothyronine (T3)

British Thyroid Association Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015

PrescQIPP Bulletin 121 Recommendations 2016

BTA Prescription of Liothyronine in Primary Care 2017

NHS England Items which should not routinely be prescribed in primary care: Guidance for CCGs 2017

Health Act 2009

I write following my consultation with you on (insert date here ??/??/????) during which you informed me that you could no longer prescribe T3. You told me that the reason was the Clinical Commissioning Group/Health Trust had banned prescription of T3. I believe that this decision is irrational and unlawful and therefore I request that you continue my prescription of T3. I have a clinical need, guidance on prescribing liothyronine allows for a clinical need and several judicial reviews have declared blanket bans to be unlawful.

I have a clinical need for liothyronine.

I have seen (insert doctor’s/Endocrinologist’s name here) at (insert surgery’s/hospital’s name here) who has recognised my need for T3 and has advised that I am prescribed T3 because my health did not improve on T4 alone.

(You may include additional information about how you did not thrive on T4 mono monotherapy)

Since taking T3, my signs and symptoms have resolved or partially resolved. (amend the points below as necessary)

•My “brain fog” has cleared

•My face is less puffy

•I feel less fatigued

•I feel less irritable

•I am able to exercise more regularly

•My blood pressure has gone down

•My pulse rate has increased

•I am able to work better

•My relationships with my friends and family have improved

(amend remove or add any other health improvements you have since taking T3).

I have demonstrated that I have a clinical need for T3 that was not met by T4 monotherapy. My health will deteriorate if I do not take T3.

Banning liothyronine is irrational

I have attached the documents detailed above to show that they accept that there is a cohort of patients who do not thrive on thyroxine alone. All of them allow for an exception where the clinical need is clear.

In summary;

•The BTA is a group of expert Endocrinologists who recognise the need for some patients to take liothyronine in their Management of primary hypothyroidism: statement by the British Thyroid Association Executive Committee 2015. I attach a copy with relevant passages highlighted on pages 6 and 10 .

•PrescQipp is a group of pharmacists tasked with reducing the cost of medicines to the NHS who have also recommended that some patients will need liothyronine in their Bulletin 121. I attach a copy with relevant passages highlighted on pages 1 and 4.

•The BTA became aware that their guidance was used to promote a ban on liothyronine and issued direct guidance asserting that some patients clinically need liothyronine I attach a copy with relevant passages highlighted on pages 1 and 2.

•Finally, NHS England recommends that CCGs must make provisions for the prescription of liothyronine. I attach a copy with the relevant passages highlighted on page 8, 19 and 20.

The documents clearly show that despite a drive to reduce the numbers of prescriptions of liothyronine, some patients will still have a need for it to be prescribed to them. To completely ban liothyronine is clearly irrational in the face of those recognised exceptions in the guidance and recommendations above and particularly when a blanket ban is contrary to the advice from NHS England.

Blanket bans are unlawful

Clinical Commissioning Groups have a legal duty to have regard to the NHS Constitution. The 2019 Handbook to the NHS Constitution says:

If a CCG, a local authority or NHS England has decided that a treatment will not normally be funded, it needs to be able to consider whether to fund that treatment for an individual patient on an exceptional basis…In addition, decisions by the courts have made it clear that, although an NHS commissioner …can have a policy not to fund a particular treatment (unless recommended in a NICE technology appraisal recommendation or highly specialised technology recommendation), it cannot have a blanket policy; i.e. it must consider exceptional individual cases where funding should be provided.

By instituting a blanket ban and not considering exceptional individual cases, (insert your CCG here) has not had regard to the NHS Constitution and wold have realised that a blanket ban is unlawful.

The courts are clear that blanket ban of drugs are unlawful. The courts have said that even if a drug is to be restricted on the NHS provisions must be made for clinical exceptions.

The cases stated are:

•R (Elizabeth Rose) v Thanet Clinical Commissioning Group (2014). CCGs should not deviate from guidance just because they don’t like it.

•Regina v Secretary of State for Health ex parte Pfizer: 51 BLMR 189 1999 Guidance should not take the place of a doctor’s (and now patients following Montgomery v Lanarkshire Health Board 2015 and Consent: doctors and patients making decisions together) judgement

•R v Cambridge Health Authority, ex p B [1995] 2 All ER 129, [1995] 1 WLR 898 Authorities must take ALL factors into account when limiting access to treatment. The decision should not be "so absurd or outrageous in their defiance of logic or morality that no reasonable person addressing the question would have come to the same conclusion".

•R. v North West Lancashire Health Authority, ex parte A, D and G [1999] All E.R. (D) 911 Authorities must not establish a blanket ban and must take into account patients individual circumstances

•R v Swindon NHS Primary Care Trust, Secretary of State for Health, ex parte Rogers [2006] EWCA. Civ 392 The concept of exceptionality cannot be too narrow to the extent that no case would be exceptional.

•R. v Barking & Dagenham NHS PCT, ex parte Otley [2007] EWHC 1927 and R. v West Sussex Primary Care Trust, ex parte Ross [2008] EWHC B15, Health Authorities must include divergent expert opinions when considering scientific evidence

•R. v Salford Primary Care Trust, ex parte Murphy [2008] EWHC 1908, Authorities must evaluate exceptionality holistically

Conclusion

I have demonstrated that I have a clinical need for liothyronine, that banning liothyronine is contrary to guidance and recommendations and that a blanket ban is unlawful. I respectfully request that you restart/initiate my treatment. I am afraid to say that if you do not, I will have no alternative but to make a formal complaint regarding your decision.

Yours faithfully

(Sign here)

(Type your name here)

in reply to holyshedballs

You have obviously put a lot of time in to the above letter.I applaud you for it.

I would find it difficult to use though, as it doesn't seem appropriate.

When I received my letter from my GP telling me that he would no longer be prescribing my T3 Liothyronine,I took it into my surgery and showed the receptionist who said it was the first one she'd seen and thought I should have a appointment to see my GP.

At the appointment ,I said that I had been advised to see him about my letter concerning my T3.

He then said that he didn't know much about T3.( he'd been passing my T3 prescriptions down to the pharmacy for at least 6 years since I first saw my Endo.)

I then said" ......but T3 is the active hormone which travels to all our glands and governs our metabolism. the reply was " I don't need a lecture and don't argue with me"

I explained that I was not arguing but just trying to understand what was happening.

The appointment was then over,as he turned back to his screen saying " Is that it"?

I have been very upset by the way he spoke to me.

However,as a result ,my Endo visit was brought forward fromJune to February and I reported to him what had been said...........He doubled my T3 from 10 to 20 mcgs.

Now however, because it comes from the hospital,my brand has been changed to Mercury Pharma and I'm not feeling good on it.My latest FT3 result was :

5.5(3.8-6 0) so may be I didn't need an increase,as not having taken my T3 until after the blood test it surely would have increased during the day.

I'm thinking of going back to my 100/75 levo + 10mcgs LioT3 to see how I feel.

I really don't need a load of hassle.

holyshedballs profile image
holyshedballs in reply to

If you are getting your T3 now that's great.

my point being that if you have a clinical need for it, you should get your T3.

I had a total thyroidectomy in 2011 and it took over 5 years to get my TSH suppressed and I had so many unwanted symptoms from weight gain to lethargy. I was referred to an Endocrinologist with excess sweating and during a consultation with him about my TSH he agreed to prescribe Liothyronine as well as Levo and within a few months my TSH was suppressed and I was feeling pretty good.

Early last year I got a letter from my GP saying that she would no longer be prescribing Lio. but I would still receive it from my Endo. Until recently that has been going well but he has halved the dose saying that my T3 levels are now too high.

My Endo recently explained why the Lio I get now says unlicensed product on the container, apparently it is not licensed in the UK but it is in the EU so as members of the EU we were able to have it prescribed although the cost has put most GP's off. The concern now is whether we will still be able to have it prescribed as we are no longer in the EU. He is generally very straight with me, so I have no reason to believe otherwise, but I would be interested to hear if anyone out there knows any different.

I have been prescribed Liothyronine for a year now , trying different brands.

Cytomel suits me best and has been on my repeat prescription as from USA unlicensed, in the last few months it has been exceedingly difficult to source. And has now been removed from my repeat prescription. The practice has told me it is no longer available to the NHS and they could only print a prescription for Liothyronine and I would have to accept whatever brand arrived.

From the Thyroid UK list of Pharmacies Tollesbury Pharmacy in Essex have sourced Cytomel for me for 3 scripts now. This month my GP had to actually write the prescription by hand so I can continue to source it.

Interestingly they told me I was the only patient at the practice on T3 !

Thankfully they are quite understanding and are willing to help, at the moment.

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