Current T3 Liothyronine situation in UK?

[Girtonian]

Hi everyone, can anyone tell me the current situation for getting/not getting T3 in the UK? Is there any sensible way forward to getting it alongside T4 currently please?

I have Hashimoto's, diagnosed in 2016 and treated with T4. I felt well at first but then brain fog etc returned. I tried very hard to get T3 in 2018 - had a private blood test, which showed my T3 levels were middle of the range so could probably benefit from being improved, found an NHS consultant who had prescribed it in the past, but was told by him he was not allowed to prescribe it because of cost and NICE guidelines etc and (most annoyingly) that he thought my symptoms of tiredness, poor concentration etc were probably due to depression, not my thyroid at all! I vowed I wouldn't give up, but a couple of months later had to start breast cancer treatment (thankfully successful) and I had to focus on that.

Scroll forward to 2022. I'm fed up with brain fog, finding it hard to read a book, slow cognition, mono focus, thinking and moving so slowly. My T4 levels are always at the top end or slightly above range and TSH below range. I'm on 100 mcg per day and have been almost since this started in 2016.

I also find I get wobbled, stressed, upset so easily, and this can leave me wiped out for a few days. I practice mindfulness and daily meditation, which helps me function, but this feels like a very physical reaction to stress. I imagine my adrenal glands may not be quite functioning properly. My cortisol levels were flagged up as low in (I think) 2017. I had the synacthen test back then but results were deemed ok and I was not referred.

Thanks, I would love to hear others experiences. I'm seeing my GP, who also has hypothyroid, so is usually sympathetic, on Monday.

PS I am strictly gluten free, also cows dairy and nightshade free. I take all the vitamins recommended on the Thyroid UK website. These things undoubtedly help hugely, but I would so love to feel brighter and more alert again.

# liothyronene

[SlowDragon Administrator]

It’s possible, but difficult to get T3 on NHS

Roughly where in U.K. are you, some CCG areas are worse than others

First step is to get FULL thyroid and vitamin testing done.

Always test early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

Remember to stop taking any supplements that contain biotin a week before all blood tests as biotin can falsely affect test results

Suggest you come back with new post once you get test results

Or add any recent results here

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

More likely privately than on NHS

[e-mail]

Private prescription enables access to Thybon Henning 20mcg tablets at 50p each (typical daily dose T3 is between 10mcg and 20mcg daily)

NHS currently paying £72 per 28 tablets 20mcg T3

Prescription numbers for England searchable by CCG

openprescribing.net/analyse...

[Girtonian in reply to SlowDragon]

Thank you SlowDragon.I am in Cambridge, my local CCG is Cambridgeshire and Peterborough Foundation Trust. I will try to get FULL thyroid and vitamin testing done. I have to say I hated having to try to get enough blood by using a finger prick last time!

Yes I always make a 7am appointment for my bloods and take my levo AFTER having the blood test done and 24 hours since the last dose.

I take ALL the vitamins listed on the TUK home page in the doses listed there too. It's quite a collection. I take these away from my morning levo dose, usually in the evening. I don't think any contain biotin...? I don't know what that is?

I have emailed TUK for the up to date list of endos who are sympathetic to prescribing T3.

My latest results from GP surgery:

TSH 0.11 (range 0.35 -5.50)

Free T4 19.6 (range 10.5 - 21.0

No Free T3 test of course as GP doesn't do it, but I remember it was right in the middle of the range last time I had it tested.

Thanks for your help,

Girtonian.

[Girtonian in reply to Girtonian]

Hi again, so I have looked up biotin and I see it is B7. I do take a B spectrum capsule so will take a look at the label (I’m away on holiday just now) and skip it for 7 days prior to next blood test.

[Girtonian in reply to SlowDragon]

Hello SlowDragon, everyone.Here are my results from 10 March. I'll make a new post for comments as well.

Looks to me like my ferritin needs improving and it's interesting that my T4 level is down a bit, perhaps because of not taking B7/biotin (as an element of my B complex vitamins) for a few days before the blood test. I didn't know previously that that was an issue.

Talking to my GP again tomorrow. She has hypothyroid herself so a bit more understanding than some - although has already reminded me she can't prescribe T3 - although she did say she is aware some people buy it themselves. I'm in Cambridgeshire and Peterborough Foundation Trust area.

Free T3 4.9 (3.5 - 6.5)

TSH 01.12 (0.35 - 5.50)

FT4 18.8 (10.5 - 21)

Vit D 64.4 (50 - ?75)

Folate 13.92 (5.38 +)

Ferritin 64 ug/l (10 - 291)

Vit B12 606 ng/l (211 - 911)

[SlowDragon Administrator in reply to Girtonian]

Vitamin D needs improving to at least around 80nmol and around 100nmol maybe better

How much vitamin D are you currently taking

Do you also take magnesium supplements

Ferritin is ok

Just look at eating good amounts of iron rich foods in diet

If taking iron supplements you need full iron panel test 3-4 times year. Iron can be high, even if ferritin is low

Yes GP can’t initiate T3 …..but if you get T3 prescribed by endocrinologist, after 3-6 months trial via hospital pharmacy, ongoing care and cost of prescription passes to GP

Price charged to NHS for T3 is dropping. At highest £268 for 28 tablets 20mcg (when only one supplier exploiting situation). Now £72 for 28 tablets 20mcg

[Girtonian in reply to SlowDragon]

Thanks so much for your detailed response.Yes, I take vitamin D 1000 iu , magnesium 100 mg.But I confess to not taking them every day, recently more like 2-3 times per week. I am switching time to lunchtime or dinner time as I so often don’t feel like gulping all my supplements down at bedtime. I was taking them at bedtime because people said magnesium could make you feel tired and I feel tired enough already!

[SlowDragon Administrator in reply to Girtonian]

When do you take levothyroxine?

Waking or bedtime

Vitamin D

Likely to need higher dose than 1000iu per day

Suggest 3000iu for 2 months and retest

Vitamin D mouth spray is good option

Doesn’t need to be four hours away from levothyroxine as it’s absorbed in mouth not gut

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

[Girtonian in reply to SlowDragon]

Thanks. I've ordered some of the Vitamin D + K mouth spray. I take my T3 in the morning - I did try in the evening for a week or two a few years ago, I don't remember exactly why I stopped but I think I didn't find it any better. Might be worth another try I suppose.

I'm also wondering about supplementing iron as my ferritin levels seem a bit low at 64 ug (range 10 - 291). I'll obviously try to eat more iron rich foods. Do you have any suggestions for iron supplements? My doctor wasn't really concerned about my iron levels but she mentioned Floradix, however when I looked at the contents on Amazon it's not gluten free, as it contains wheat germ and yeast extract. There is Floravital, which is dairy free and yeast free, but that looks like it would double up on the B vitamins and zinc I already take. I then looked at 'Zen naturals high strength iron drops' but the reviews look a bit mixed. Sigh.

[SlowDragon Administrator in reply to Girtonian]

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator in reply to Girtonian]

FT4: 18.8 pmol/l (Range 10.5 - 21) 79.05%

FT3: 4.9 pmol/l (Range 3.5 - 6.5) 46.67%

Helpful calculator for working out percentage through range

thyroid.dopiaza.org

So yes….not good conversion of Ft4 to Ft3

[fuchsia-pink]

As you've found out, not all endos support T3. The cost has come down quite considerably in the last few years, but you still need to see an endo who is supportive- so email Dionne at Thyroid UK for the list of T3-friendly endos - [e-mail]

You don't need to see the nearest person but must obv be reasonably convenient. And if your CCG is still opposed (some are I understand) it may be worth seeing an endo who can issue a private prescription, as you can get a 20mcg lio tablet for 50p these days

Good luck x

[Girtonian in reply to fuchsia-pink]

Thank you

[Picketywitch in reply to fuchsia-pink]

When I started on T3 the tablets cost 9p. This was when only one company had the license in the uk. It has gone up astronomically. Don’t know why.

[fuchsia-pink in reply to Picketywitch]

Since then, there has been some serious price-surging - followed in recent months by some HUGE fines on the drug companies and the price dropping to something more reasonable. But the all-mighty NHS, with its potentially huge purchasing power still pays a much higher price (wholesale) than we can now pay (retail) with a private prescription, and that is shaming

[TaraJR]

Unfortunately Cambridgeshire CCG is not a good one for T3. All national guidance says patients should be given T3 if they need it, a trial can be started in secondary care, then prescribing passed to a GP after a successful trial.

But over half of CCGs still refuse to comply, or don't comply completely.

There's been a national campaign on the go for nearly 5 years for this situation to be sorted. Things are shifting, but of course the pandemic put everything on hold.

If you're on facebook, join ITT Improve Thyroid Treatment for template letters to use to back up your position.

[Girtonian]

Thank you, I will join the ITT group.

[Girtonian]

Aww I’ve now got shingles. Soldiering on though.

[helvella in reply to Girtonian]

Poor you. Just getting over it myself so you have my full understanding.

I am using amitriptyline (35 mg at bed-time), capsaicin cream (0.075% up to every four hours), and some CDB oil and balm. To begin with, I also had Zapain.