New here! I paid for the DI02 test which came back saying the gene was defective in ability to generate T3. Doctor and endocrinologist agreed. Now the consultant wants to see me as they believe I’d benefit from T3. I’ve been advised by the receptionist at the hospital that they’ve previously not prescribed T3 due to funding. Can the NHS prescribe T3? Really worried I won’t be able to get the treatment I need. I’ve never felt so unwell since I was diagnosed in 2016. Please tell me there is hope 🤞🏻
Advice on NHS prescribing T3: New here! I paid... - Thyroid UK
Advice on NHS prescribing T3
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3kitties
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helvellaAdministratorThyroid UK
Yes - the NHS can prescribe T3. It always has been able to. However it is true that a huge effort was made to clamp down on prescribing on grounds both of not understanding it and cost.
The price of T3 has gone down. However it is important to realise that any decision to prescribe is not a foregone conclusion. Cautious optimism! 
Thank you for replying.
At the moment I feel like something has to be better than this. If they can prescribe them I’m willing to give anything a try 😢
In case you wish to know what is available - but I don't includes prices because they can change too quickly.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
From Dropbox:
dropbox.com/s/wfhrlmb5983co...
From Google Drive:
Hi. Yes the NHS can prescribe T3. I too have the defective gene. In fact I have just been to collect my 1st prescription of T3 by morningside today. I discussed with GP pharmacist what the House of Lords discussed on 6th July. Google it. They stated basically it was the CCG that were not reacting to the instruction from NHS England that certain patients could be prescribed T3 to benefit them. I start a 3 month trial. I have come on here tonight to get advice on taking it as I am a little apprehensive.
Endo just said take 10 mcg twice daily but I feel I need to be cautious and take it gradually.
Do I reduce Levo for 3 or 4 days before commencing with 5mcg T3 on a morning for 4 days and then increase to 10 mcg daily.
Advice please. I can't seem to find previous advice
Your previous posts and replies are on your profile - here:
healthunlocked.com/user/ric...
Thanks for sending link. I've found info. The GP would only prescribe 5mcg tablets for 28 days to allow me to titrate on them and then switching to capsules 10mcg due to cost! Hope this works. My max dosage by Endo is 20mcg daily. He only said take 10mcg morning and 10 mg afternoon but been advised on here it needs introducing gradually
SlowDragonAdministrator
Roughly where in U.K. are you
Some CCG areas are worse than others
Approx 59,000 prescriptions in England in last year
Typically 6 prescriptions per person per year
That’s an increase from 57,000 approx 18 months ago
Searchable by CCG area
openprescribing.net/analyse...
price of T3 dropped significantly
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
tukadmin@thyroiduk.org
Thanks for your response, it sounds like things are getting better 🤞🏻 I’m in Cheshire, by the sounds of it the endo’s dept didn’t sound too confident but if I can go armed with facts I’d feel much better!
908 prescriptions for T3 in last year in Cheshire
openprescribing.net/analyse...
Hello slow dragon I would like to ask you if you have a number fo Suffolk being prescribed t3 as I’m still fighting was put on a trial but still being left to get on with it myself , well that’s what I feel, I ran out for a week,then hospital gave me two more weeks until they had the meeting, I rang drs again after meeting and was told there was another meeting either this week or next week,I rang hospitable endocrinologist secretary she’s on holiday left a message with the other secretary about problem , haven’t heard a thing I’m just so fed up about it all , hope you don’t mind me jumping in,but I saw your answer about Cheshire, thankyou
Suggest you write new post of your own about this
Obviously that’s totally unacceptable to start then not have ongoing supply
TaraJR may have info too
Thankyou I will
Kowbie so sorry to read this. Sadly, it's not unheard of. The state of T3 prescribing can be woeful. T3 is a vital medicine for those who do need it. You can't be just left in the lurch without any! Suffolk formulary info says you can be transferred to you GP after a 3 month trial with an endo, so hopefully it will fairly soon be transferred for ease.
ipswichandeastsuffolkformul...
If you're on Facebook do join us on ITT Improve Thyroid Treatment, as we have templates which include all the national guidance that CCGs (now ICBs) and drs should be following.
I also help to run Thyroid Support Group Norfolk and we have a few members in Suffolk, so you may be able to find some useful info about Suffolk on either group
Thankyou for replying I did join the Facebook site but I think I got in a bit of a muddle on there I thought I was replying to , I think it was Linda as she answered me and said she was putting what I had written somewhere else she told me to get my last blood test results, and that took a little while as was in the process of joining the hospital portal, when I got them I wrote again to her and that’s when I went wrong again, I think I must have answered myself ( a bit stupid I know but that’s me ) as I never got any replies, I’ll have to see if I can find it again but thankyou
Come back with new post once you get FULL thyroid and vitamin results
Hi. Sos been a while replying. I'm in N. Yorks. Ti be honest I thought I was going to have a battle to get T3. I was told by Drs pharmacy that her computer system was green flagged to prescribe T3. If not I was prepared to take them on. What is happening by refusing this medication is tantamount to cruelty. Especially those who can prove for example the defective gene. Your body is lacking and cannot function properly on just T4. Surely withholding T3 meds borders on medical negligence when it is deprived for reasons of cost as this has been recently. I was told by my GP recently when I enquired about T3 trial that it was 'witchcraft' and no Endo or GP would prescribe it in our CCG. You have to prove them wrong.
Never thought about it in that way as negligence but I suppose you are right! People should be entitled to medication if it’s available.
I’ve heard back from my endo who seems positive it’s just getting the care transferred to the CCG/GP which seems to be the sticking point.
Everything is so complicated!!
Good luck with everything x
SlowDragonAdministrator
Before considering adding T3 you need Vitamin D, folate, ferritin and B12 levels tested and at optimal levels
What vitamin supplements are you currently taking
What are your most recent vitamin results
Do you have autoimmune thyroid disease also called Hashimoto’s, usually diagnosed by high thyroid antibodies
What are your most recent thyroid results
TSH, Ft4 and ft3
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
Folate 17.2Ferritin 33.8
B12 204
Vit D 86.1
TSH 1.49
T4 14.10
FT3 3.8
All before 9am. I physically can’t get my iron levels up no matter what I do (weird/excessively heavy menstrual cycles don’t help - TMI!). Supplements are iron, D & magnesium. I was diagnosed after having a baby so not sure if it’s hashi as I got v little info from GP at the time! Because I take 75 I think the 50 & 75 maybe different brands?
Please add ranges (figures in brackets after each result)
Folate 17.2(4-25)
Ferritin 33.8(22-322)
Serum B12 204(150-750)
Vit D 86.1(50-150)
TSH 1.49(3.5-5.50)
T4 14.10(7.86-14.41)
FT3 3.8(3.70-6.00)
The meds are Accord & Wockhardt. I’ve had Teva before, to be honest I’ve never noticed the difference. They were 8.30am & I did take meds at 7 because I didn’t know what the blood tests were for! I had to fight them to increase it to 75 ages ago. The gp won’t increase now as he’ll ask me to wait for endo. I weigh about 70, put so much weight on in the last 4-5 months & I’ve done nothing different to my routine. It’s really starting to get me down as I just don’t know what’s happening & I want to try for a baby 🥺
So it was serum B12
B12 too low
Are you vegetarian or vegan?
If not request GP test for Pernicious Anaemia before starting on any replacement B12
You may need B12 injections
Low B12 symptoms
b12deficiency.info/signs-an...
Assuming you test negative for PA …..and don’t get B12 injections prescribed….
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
If you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
If don’t get injections….you still need vitamin B complex
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and separate B12
Not vegetarian, been gluten free for 2 years due to IBS symptoms. I was tested before going GF for coeliac but negative. Paid for antibody test and they were present but relatively low.
Had a full blood count test with haem etc all mid range so not P.Aneamia. I do take a multi vitamin that contains B12 & folic (pregnancy care). Would this not be enough?
Interesting you say about ferritin & hair loss - mine has started coming out in clumps recently.
Thanks for articles, sorry for delay in replying x
Multivitamins are never recommended on here
As demonstrated by your results….they are doing little to improve very low levels
Can you recommend a B complex without folic acid? X
I already did …in my detailed reply about B12 and folate earlier
Thorne Basic B complex
Most important next step is to get increase in levothyroxine
The link for that one didn’t work but I’ll Google it now thanks for all the info ☺️ I’ll speak to the endocrinologist when I eventually get an appointment!
Just bought this as it was mentioned in one of the articles you sent. medino.com/product/solgar-f...
It’s ok, I’ve been a d**k!! Just bought the Thorne too 🤗 Took me a while but I get it now!!!!
70 kilo x 1.6mcg levothyroxine = 112mcg as the likely daily dose levothyroxine required
Some people need higher dose, a few need less
ALWAYS assume any blood test is going to include thyroid test
Last dose levothyroxine 24 hours before test
Vitamins are low BECAUSE you are under medicated
Assuming you do have high thyroid antibodies, you need coeliac blood test, BEFORE considering 3-6 months trial on strictly gluten free diet
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP or endocrinologist for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
chriskresser.com/the-gluten...
amymyersmd.com/2018/04/3-re...
thyroidpharmacist.com/artic...
drknews.com/changing-your-d...
Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease
pubmed.ncbi.nlm.nih.gov/296...
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
nuclmed.gr/wp/wp-content/up...
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
restartmed.com/hashimotos-g...
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Before considering pregnancy….all four vitamins must be optimal
B12 and folate are Goldilocks vitamins. You don’t want too much or too little
Both low B12 and folate are linked to neural tube defects…..Spina bifida
Low ferritin linked to increased risk of miscarriage
Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask GP or endocrinologist for full iron panel testing for Anaemia
cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Also See page 7 on here
rcn.org.uk/-/media/royal-co...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
An article about low ferritin and miscarriage that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
As you have discovered…. It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Heme iron v non heme
hsph.harvard.edu/nutritions...
Good explanations of iron
theironclinic.com/iron-defi...
theironclinic.com/ironc/wp/...
Helpful info on iron infusion and supplements
healthunlocked.com/thyroidu...
Was this test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test
On levothyroxine dose should be increased slowly upwards in 25mcg steps (or smaller if can’t tolerate 25mcg) until Ft4 is at least 60% through range
If ranges are 12-22 for Ft4 …..your very under medicated
Assuming this is Serum B12 ( range 180-760 approx ) any result Under 400 is far too low
Ferritin obviously terrible
Heavy periods are common hypothyroid symptom
When dose levothyroxine is increased this should improve
Request increase to 75mcg daily and retest in 6-8 weeks
Even 75mcg daily is very small dose
Likely to need further increase in levothyroxine after next test
Approx how much do you weigh in kilo
Teva is the only brand that makes 75mcg tablets
Teva upsets many people
Get BOTH thyroid antibodies tested with private blood test ….6-8 weeks after increasing levothyroxine to 75mcg every day
About 90% of primary hypothyroidism is autoimmune thyroid disease, especially if started after pregnancy
You can buy it yourself abroad or get a prescription from a private doctor but it’s not cheap. I’ve had to go private to get new meds.
3kitties whereabouts in UK are you? CCGs/ICBs/ Health Boards do vary in what they 'allow'.
Are on Facebook? If so, join us on ITT Improve Thyroid Treatment. We have various letters/templates you can show whoever you need to. They include all the national guidance that says if you have a clinical need for T3 you should be prescribed it.
Also tell whoever you need to that the price of T3 is now 80% less than it was at its height. We don't consider it a high cost drug any more.
The joint thyroid groups Thyroid UK, The Thyroid Trust, ITT, and Thyroid Support Group Norfolk have produced several major reports for NHS England and Dept of Health, and we're currently doing more work on that (fighting very hard!) to stop the nonsense around T3 prescribing
Thanks for your reply. I’m in Cheshire, the endos sept didn’t seem to think they have prescribed it in the past so wanted to go armed with facts! I shall join the Facebook now, appreciate all the help! ❤️
At moment you just need to get dose increased in levothyroxine
Possibly avoid Teva brand levothyroxine
Essential all four vitamins at OPTIMAL levels
Vitamin D is good
Ferritin obviously not
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
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