Just a quick question ... I got prescribed 5mcg of T3 twice a day privately by an endocrinologist about 4 years ago. I have been paying for 20mcg tablets which I cut into quarters. I am wondering how much I should be paying for these tablets and how I could get my GP to prescribe this medication on the NHS?
Thank you I'm advance 🙏🏽😊
Hi there Fifty50.
As I understand it, a GP can only prescribe T3 on the direction of a Consultant.
On the upside, Liothyronine is now an Amber drug (as opposed to Red), so theoretically that could make it more available.
If you want the NHS to pick up the tab, it seems you will need a referral.
(I could be wrong on that.)
Thank you for your response… I didn’t know liothyronine is now an amber drug. Hopefully this make it more available for those of us who need it 😊
An Endocrinologist is of course a Consultant so yes your GP should be following their instructions.
MMaud Fifty50 T3 is classified different things in different CCGs (now called ICBs) amber/red/black/grey/green/ any colour that fancy. It should be a national policy but it isn't. It's a huge mess that the joint thyroid patient groups are fighting hard to get sorted.
You need to find the policy for your own area. Whereabouts are you?
A GP can't prescribe T3, but an NHS consultant can give you a trial and, if successful, pass prescribing on to the GP. If your area doesn't follow this, then join ITT Improve Thyroid Treatment group on Facebook as we have template letters for you to send to endo/GP/ICB/MP etc. But a GP probably won't prescribe after being asked to by a private endo.
sps.nhs.uk/wp-content/uploa...
Lists referred to by colours is a devilish approach.
They are spoken of as if you should know what the colour signifies.
"It is on the list of medicines we in this Integrated Care Board are are not allowed to prescribe under any circumstances." invites challenge and questioning,
"It is on the *colour* list" is unarguable and meaningless. And shuts down the issue.
(We can understand that they might be coloured in reality and that might used as a shorthand. But it ends up as a confusion. Is that the surgery's *colour* list? Or the ICB's *colour*list? Or the hospital pharmacy's *colour* list? Or an NHS England/Northern Ireland/Scotland/Wales *colour* list? Or a NICE *colour* list? Or the CCG's *colour* list (despite CCGs not being the system any longer)?)
*Colour* list means what they want it to mean at any particular time.
Aside the obvious possible offensiveness of some colour words in some circumstances.
If anyone mentions a *colour* list - ask them to explain exactly what they mean. And ask for a copy.
Agreed! Over the years of poor health, my GP has often refused my medication requests 'because they're brown on the list' & it soon shut down that conversation. Only now (on T3) do I understand she was referring to my local CCG's Formulary List.
Incidentally, Liothyronine Capsules & Tablets are both RED on the Formulary here 😒
Go to this NHS page and scroll down to liothyronine. Prices of tablets and capsules are in pennies for 28.
drugtariff.nhsbsa.nhs.uk/#/...
These are the NHS prices - with NHS Drug Tariff price being what the NHS will pay a pharmacy. Private will almost always be more expensive but can vary by pharmacy. And non-UK products (such as Thybon Henning) are not shown.
On the BNF site bnf.nice.org.uk/drugs/lioth... they are all about £59.00
The British National Formulary site can be a bit out of date - and confusing!
I posted about the confusion of the BNF site recently:
British National Formulary - Confusion
I did similar a few months ago in seeking private endo help and, although the private endo was a tad fixated on TSH, on his advice and with his accompanying letter, I wrote to my GP about the ‘shared care arrangement’ that is available in my area across the private/NHS spectrum. The endo stated that once he was happy I was on a ‘stable’ dosing regime he was happy for GP to prescribe. I don’t know if it is relevant but the private endo also works in my local NHS trust. I personally am still ‘tweaking’ but am now prescribed T3 by my GP. I recently had my annual bloods at the GP and nobody said a dickie bird about my results or very low TSH 😊
Thank you so much for your response, it is very helpful learning about your t3 journey.
I will find out if have shared care arrangement in my area and then ask my endo if he would be willing to write me a letter. I didn’t know this existed.
Also, I have very very low TSH but apparently this is the case if you take t3.
Thanks again ☺️
To be fair previously on t4 only - 200mcg daily - I had a very low TSH that my GP tolerated - I can’t bring myself to credit him with enough knowledge to say he understood about the connection between replacement thyroid hormones and low TSH or the minimal risks of AF etc. as he still wants to diagnose that I have fibromyalgia rather than a B12 deficiency alongside the Hashimotos- but I’m on the case and am in a much improved place than the last 3 decades on T4 alone. Good luck !
I'm glad that you're in a more improved place ... I was on T4 for around 25years too until I paid to see a private endo. I feel better on the combination but still have brain fog, bad headaches/ migraines and a lot of joint pain. I'm hoping that it will all go away one day!
Good luck to you too 🙏🏽
I’m exactly the same except no headaches !
wow... it's a shame that have to continue to suffer 😔
Sounds like you could both do with some testosterone ?
Would that help?
I've just started on HRT patches, oestradiol and progesterone for peri menopause symptoms but no one's mentioned testosterone
Have a listen to some of Dr Louise Newson's podcasts and see what you think.... when you realise that the female body produces 3 times more testosterone than estrogen but they generally only replace 2 out of three hormones..... 😕
They tend to only prescribe for low libido (that's the key when talking to GP) but it helps with muscle wasting, headaches, stamina, aching joint and most importantly mood! I find it gives you back your joie de vivre 💃
I've been using for the last 18 months as I bought a box from a Menopause clinic so now doing battle with the GP for a prescription, they were sent all the information from the clinic and have tested my levels twice but still they are dragging their feet as I just don't think there is anyone that knows about it, they were dumbfounded by the Lenzetto too though!
I wish they would listen to these too 😉
balance-menopause.com/subje...
Morning! Thank you so much for your very insightful advice. I shall listen to the podcast you have suggested. And it is so wonderful to hear you have your Joie de Vivre back... that gives me so much hope 😊 and probably many others who read this too! Thanks again 🙏🏽
Wishing you all the best 😊
I have been prescribed HRT too but it's soya based, and isn’t soya supposed to be a no no for folk with thyroid disease as it suppreses it?
I didn't know it was soya based and that suppresses thyroid?? I thought it was made from yams etc Not that I've ever had yams! The menopause nurse never flagged this up with me.
I went to my local pharmacist on another errand, and just by chance, I asked him what the ingredients are in Oestrogel and Utrogestan. He said they are soya based but would confirm it. After checking, he confirms that hrt does indeed contain soya. This concerns me due to long term effects on the thyroid, but on the other hand, I would benefit from hrt for osteoporosis purposes.... Hence, I feel I'm in a dilemma.
I understand the dilemma! I think I’m going to carry on with the HRT for now and continue to monitor how I feel. Hopefully the benefits will outnumber any effect on the thyroid.
All Consultants are obliged to do some NHS work in addition to running their private practice .
Hello Daisuwhoops
Which endo is this please?
I have been under my endo in Weston Super Mare since 2019 when I asked for a trial of T3 only. He is TSH obsessed and although he says I have clinical need wont agree a trail of T3. I did see him privately originally but now pn his NHS List. I buy my own T3 which is getting more difficult to source. He has never agreed a trial of T3 and my surgery now say I dont have thyroid issue anymore just because I dont take levo anymore!
The latest excuse is I leve in Devon and they dont supply to new patients .
I have a phonecall with him on 31st but no idea how to approach it this time round.
Its a continental battle. I also have TSH of 0.4 ,FZt4 of 0.5 and FT3 4.3.
My special needs son is also under him and I have to buy his NDT also. I am now retired so will probably have to go back to the dreaded levo so I can keep my son on his NDT.
I have my own thyroid group in Devon with 190 members but things just dont serm to be improving for many. Some have had strokes and heart attack. I wonder why?
Thank you.
Janexx😒🤓❤
private prescription enables access to Thybon Henning 20mcg tablets
Is this what you get?
Currently 50-60p per tablet from specialist U.K. pharmacies
Is this roughly what you are paying
NHS currently paying £56.19 per 28 tablets for 20mcg tablets
But price is dropping every month
Thank you for your response. I think that's roughly what I'm paying but the price of 5mcg is very high in comparison. It would be easier for me to have the 5mcg to get a more controlled dose as the 20mcg are tricky to cut into quarters.
Agreed ….
NHS currently paying
5mcg capsules are £55 per 28
5mcg tablets are £99.47 per 28
yep 😔
Re the aching joints I assume youve had your vit D level checked? Aching joints is a common symptom of low vit D, as is non restorative sleep. Vitamin D Council website has great advice on this.
I think you have to be under a nhs endo to get T3 on the NHS. (Unless that too has changed....). Having said that someone I know mamaged to get GP to re-prescribe ndt on the nhs when she saw an Endo who had recently retired from the nhs and was doing private work. I am on ndt provided by the nhs managed by GP for the last 5yrs but was once under a nhs Endo. Before that the GP was happy to follow advice from a private specialist who recommended ndt.
It may also vary according to the GP Practise you are with. I had to change GP practise to one that would prescribe. (About 10 plus years ago)
Morning and thank you so much for your advice. My vitamin D levels tend to be low and I try and remember to take a supplement daily. I shall checkout the Vitamin D council website 🙏🏽
Thanks also for your experience getting T3 prescribed by your GP. I will get in touch with my endo and hope he will write to my GP 😊
Low levels of Vit.D can cause debilitating muscle and bone pain, exhaustion and depression among other things. A good level is also needed for effective thyroid function and utilisation of levo. Personally I only feel my best when my Vit.D level is at the very top of the range; aching bones and tiredness signal a need to increase supplementation for me.
hi yes t3 is available on nhs it does flag up amber I take it has a special due to corn allergy my usual pharmacy has refused to get it I’ve had to go to other chemist been difficult has it I now nhs available had to prove my corn allergy Hope I will get end of week
Next hurdle is thyroxine I won’t be using the usual pharmacy get consultant to write to g p good luck xx
I saw a consultant privately about 2 years ago and was prescribed T3 and when the time came to renew both T3 and T4, I got them both via the NHS and so it has continued. I read somewhere that if an Endo privately or otherwise has prescribed it, the NHS will fund it, so worth checking ...good luck!
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