Advice please, do NHS endocrinologists ever pre... - Thyroid UK

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Advice please, do NHS endocrinologists ever prescribe T3?

ShatteredofLee profile image

Hi,

I have an appointment in two months time with an NHS endocrinologist, and I've seen posts on here about is it NICE guidelines? Basically, are NHS endocrinologists ever able to prescribe T3?

I've recently had another blood test done (fasting 24 hrs), and it still shows high TSH and high T4. I have quite extreme hypo symptoms. Although my system seems topped up with T4, not a lot is converting to T3. I'd like to know if NHS can ever give T3, because this indicates there's a conversion issue. Here's results as follows:-

TSH 5.79 (range 0.27-4.2)

Free Thyroxine 22.8 pmol/l (range 12-22)

free T3 4.4 pmol/L (Range 3.1-6.8)

Many thanks

41 Replies
SeasideSusie profile image
SeasideSusieAdministrator

ShatteredofLee

I've recently had another blood test done (fasting 24 hrs)

Nobody here would ever suggest fasting for 24 hours. Thyroid tests should be done as early as possible in the morning, no later than 9am, before eating or drinking anything but water, with last dose of Levo 24 hours before blood draw. Absolutely no need to go without food for 24 hours.

Yes, some NHS endos will prescribe a trial of T3 although there are some areas where the health authorities dont. To know if anyone in your area has T3 prescribed you'd need to say which CCG (Clinical Commissioning Group) you are under in England, or if in Wales or Scotland or Northern Ireland which Health Board.

It's unusual to have a high TSH with a high FT4, when did you take your last dose of Levo before the test, we should take last dose of Levo 24 hours before blood draw, and if we take Biotin or a B Complex we should leave this off for 7 days because it can give false results.

Hello seasidesuzie, thanks for your reply, sorry misspell I didn’t mean fasting 24 hours I just meant no Levo for 24 hours. I know, it’s an unusual combination of high tsh and high t4, but I’ve done two blood tests four weeks apart n they both back that up. I’m in England, in south east London?

Hello ShatteredofLee :

Your TSH is high showing your need more thyroid hormone replacement but your T4 is just over range and your conversion of T4 into T3 very low.

The accepted conversion ratio when on T4 only is 1 / 3.50 - 4.50 T3 /T4 with most people preferring to come in at around 4 or under :

To find your conversion ratio when on T4 only you simply divide your T3 into your T4 and I'm getting yours coming out at 5.18 : so there is an obviously conversion problem:

Your T3 is coming in at 35% whilst your T4 is coming in at 108% and ideally these need to be balanced in the ranges and generally we feel at your best when both T3 and T4 are in or towards the top quadrant.

You can run a T4 slightly over range if this gives you a higher proportion of T3 as it is low T3 that gives you the disabling, insidious symptoms of hypothyroidism.

T4 is a storage hormone and needs to be converted by your body into T3 which is the active hormone that the body runs on and is said to be about 4 times more powerful than T4 with the average person needing to utilise around 50 T3 daily just to function,

No thyroid hormone replacement works well until your core strength is strong and solid and it is essential that your ferritin, folate, B12 and folate are maintained at optimal levels. They may well be in the NHS ranges, but not high enough for those of us on thyroid hormone replacement.

I now aim for my ferritin to be around 100 : vitamin D at around 100 : folate around 20 and active B12 70 + or serum B12 500 + : range dependant but aim for 50% ++ :

However whilst the essential vitamins and minerals need to be at optimal levels I think there is something else to consider here.

Since you have had a partial thyroidectomy you have lost partial thyroid production.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at about 10 mcg + a measure of T4 at about 100 mcg.

So it seems logical to drop a little T4 and add in a little T3 to rebalance, reboot the remaining gland and restore balance as we really don't know how much thyroid is left, and how well it is coping trying to fully support you.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Since you have had a partial thyroidectomy you should be better placed to get T3 prescribed as you have had a medical, surgical intervention, and lost some of your own thyroid hormone production which included T3.

Thyroid uk does have a list of sympathetic endos and specialist, both private and NHS who may be better placed to prescribe T3 - Liothyronine so it might be sensible to see if there is someone within travelling distance to you that you can ask to be referred to.

Wired123 profile image
Wired123 in reply to pennyannie

Everything that pennyannie said is spot on, make notes and have all the facts to hand including your ratios so the doctor cannot refute.

Also see if you can be referred to a named consultant from the TUK list otherwise you are very likely to get fobbed off.

There’s also an NHS website where you can see how much Liothyronin is being prescribed by your health trust. I can’t remember the website but I’m sure one of the other members will know it. This will give you some comfort if the hospital you are going is showing prescribing history of Lio. If your local hospital/trust is not prescribing then no point going there, ask GP to refer you elsewhere.

You could also try seeing someone privately on the TUK list and then asking to be transferred to their NHS list if the doctor does both.

pennyannie profile image
pennyannie in reply to Wired123

Thank you - and the CCG / surgery where you can check out numbers of prescriptions of T3 - Liothyronine is analyse/ openprescribing - or Analyse / OpenPrescribing ??

You enter your CCG and you get up a table of number of presciptions being prescribe month on month -throughout the region :

I think the name of the game is best when your CCG isn't too high in the firing line.

Once a clinical need is identified by a medical professional and T3 prescribed for a 3 month trial if this works for you your surgery needs to agree to pick up the tab:

I failed to get a trial of T3 back in 2017/18 despite having had RAI thyroid ablation.

When I checked out on openprescibing my CCG area was top of the list and were refusing any new patients and actively encouraging those on T3 to switch of T4 - which is totally ludicrous as T3 is T3 and T4 is T4 - they are not identical and totally different hormones.

But then, I'm not a doctor - so presume they know better ?????

It's all about finances, and sad to say, it seems many endo's are unable to do their job to the best of their knowledge and it seems just follow the hospital guidelines whether they are right or wrong.

shaws profile image
shawsAdministrator in reply to pennyannie

I think the very least a person should be prescribed if their thyroid gland is removed is a T4/T3 combination.

They've removed the oldest thyroid hormones through lies and without notice as they did with T3 i.e liothyroinine. Despite NDT (natural dessicated thyroid hormones) saving lives since 1892 - with no blood tests needed

I think we should sack many of them. We had wonderful doctors - all now retired or deceased or have lost their livelihoods. They didn't need blood tests - they treated our clinical symptoms and prescribed NDT, being made from animals' thyroid glands that provided all of the hormones a healthy gland would do.

I think these people are in the wrong profession as they've no idea how hypo patients need options to levothyroxine if it isn't improving their health and making them symptom-free and feel well. Millions of those with hypo seem to do well on levothyroxine alone and they wont be searching the internet for clues.

ShatteredofLee profile image
ShatteredofLee in reply to shaws

Thank you shaws,

Thank you Pennyanne, I was thinking it must be pointing to a conversion issue. If possible I’d obviously like NHS help and come to the same conclusion that t3 is worth a shot. just don’t know what the hope of that would be,

Well you have had a partial thyroidectomy and I believe that scores more on the chart than RAI thyroid ablation.

If I'm wicked I see someone with a big scar on their neck as a reminder to the medic why you are there, and what might be wrong, so thyroid registers in the medics brain.

It is a postcode lottery and when you have waited so long, it might just as well be for someone who might be prepared to help you, rather than a blanket " no " irrespective of how unwell you are.

It's obvious from your TSH being so high that T4 isn't working well for you.

Some people can get by on T4 only, some people find T4 stops being as effective as it once was, and some people simply find they need both T3 and T4 thyroid hormones dosed and monitored independantly to bring both these essential, vital, hormones into balance and to an acceptable level to the patient to restore health, well being and giving you back your " you."

20 years ago both you and I would have been offered some T3 with our T4 when symptoms were not relieved with T4 only medication.

Back 20 years ago we may also have been offered Natural Desiccated Thyroid which is pig thyroid dried and ground down into tablets referred to as grain. This treatment was used successfully for over 100 years to treat the symptoms of hypothyroidism but fell from medical favour when Big Pharma introduced T4 - Levothyroxine and the science of the blood tests and guidelines that medic all now seem to be wedded to.

I failed to get NDT or T3 through my surgery and hospital as these options are more expensive than T4 : I now self medicate and gave myself a trial of both these and they both worked. I've settled on full spectrum thyroid hormone as not having a thyroid I think replaceing like with like sensible and now take NDT which contains all the same known hormones as that of the human gland, plus it seems softer on my body.

Hi Pennyanne, thank you, it’s so good to get some perspective on what’s happening here. I’ve also sadly stumbled across a policy document for my ccg (lewisham/Greenwich/Lambeth) endo dept, which states to only prescribe liothyronine for a short term only if somebodies had a full thyroidectomy directly after op, and no other circumstances, in other words my chances of getting prescribed t3 or not are slim to zero. It’s so ludicrous given the evidence of what’s happening. Still it’s better to understand where I am and move forwards. Many thanks !

It's absolutely ridiculous :

So you are in London, so hopefully there are some medics on the Thyroid uk list who might be able to help :

I'll bet you will get prescribed if you go private :

We are looking at a two tier health system :

Alternatively Do It For Yourself : this is what many of us have had to resort to :

We would all prefer to be in the NHS system rather than out, but without your health it's pretty grim and when you know there are options it's only natual to want to try and get back to some level of well being, it's not as though we are not already trying, is it.

First step is to see where your vitamins and minerals are and build these up if necessary - this needs to be done irrespective of what comes next.

Need to close - otherwise I can't turn off for hours :

Good morning :

Another option would be to " Go private " to at least establish a medical need for T3 :

I read of some doctors switching patients from their private to NHS list after the first private appointment ?

Who and where these folk are - I don't know but you're in London so are spoilt for choice and just need some feedback on who and where to go to ?

Once established and confidant on a dose you would be well enough to take on the CCG in your local area, knowing that if all else failed, you can tick along DIY until such time as the CCG give in or you choose to give up trying.

I found the whole situation very stressful and it all simply exacerbated the symptoms I was dealing with so I opted out and did it for myself - it's not ideal as I think we would all prefer to feel included but when push comes to shove and you face the brick wall you need to find a way around it .

shaws profile image
shawsAdministrator in reply to pennyannie

We cannot put a price on good health but it is a pity that many people have to pay for their thyroid hormones and may not be wealthy. If we were rich I'm sure we'd get whatever we suggested would suit us best.

I think if the thyroidectomy is because of cancer the guidelines state the TSH must be kept suppressed so as to stop any further mutations and T3 will suppress the TSH.

I think I read cancer patients on this T3 suppression regime do get switched to T4 after a period of time - and then I guess the " fun " starts up for them, if they can't restore health and well being on T4 only - and so the circle starts again.

I have sent you a PM, hop this will help you, worth a try. Good luck

shaws profile image
shawsAdministrator in reply to pennyannie

Levothyroxine (T4 alone and a synthetic hormone) was introduced by Big Pharma who saw the opportunity to improve their profits by replacing it for NDT

They paid the professionals (in USA) to prescribe T4 instead of NDTs according to Dr. John Lowe.

In the UK, NDT was removed quite recently by those who made False Statements in order to do so and who we'd think would be more knowledgeable than those of us on this forum.

It is very disappointing that they've removed two successful thyroid hormone replacements (i.e. NDT - the very first replacement made from animals' thyroid glands that saved lives since 1892. NDT - without blood tests - and had very proven success and people didn't die from then on). Then, to crown everything, withdrew T3 but it can now be prescribed but only through an Endocrinologist but many will not do so, and we cannot have options.

Melody79 profile image
Melody79 in reply to pennyannie

Can I ask how you worked out the percentage? x

pennyannie profile image
pennyannie in reply to Melody79

Well, I just do it as a fraction first and then work it out in my head :

Sorry, have I got it wrong ?

I usually write " around " or " about " to give myself a bit of leeway ;

I believe there is a calculator recommended by some forum members :

Melody79 profile image
Melody79 in reply to pennyannie

Oh no, i just wondered how to work my own results out :) Thank you x

pennyannie profile image
pennyannie in reply to Melody79

Ok -

there is a calculator that people refer to - hopefully a forum member will pop up with the link - have a feeling it's of Polish origin -

Probably why I thought I'de rely on my mental arthmetic but as the day goes on I tend to fade, whilst a calculator could well be the better bet !!!

chorobytarczycy.eu/kalkulator

Merci beaucuop -

As always, there to support me - many thanks :

helvella profile image
helvellaAdministrator in reply to Melody79

If you have Excel or other spreadsheet software available, you can use this extremely simple spreadsheet calculator. You can use Excel online if you have a Microsoft account.

dropbox.com/s/2hux0bhfw4avh...

OR

1drv.ms/x/s!ApABZQy11Bfcgro...

Yes, NHS endocrinologists do prescribe T3 - but do your research as not all do and some are better at thyroid than others...

In the meantime, given such a high TSH on meds I wonder, do you think you may struggle with dairy? To be fair, usually when people do, you see a high TSH and low fT4, yet your fT4 is ok, but I guess I thought I would ask anyway? You can get lactose free T4.

Hi Lotika, I’ve gone gluten free for a few months and sticking to it. Not cut out dairy completely though but don’t go overboard on it. Life gets quite challenging the more food groups get ruled out, so I’ll have a think about that one, thank you

SlowDragon profile image
SlowDragonAdministrator

It’s still a post code lottery....which CCG area are you in?

It is possible (but difficult) to get T3 prescribed on NHS

Initially 3-6 month trial must be prescribed by NHS endocrinologist via hospital pharmacy. Assuming trial goes well, endocrinologist writes to your GP to formally request they take over care and cost of prescription

Price of NHS 20mcg tablets T3 is falling.....now £118 for 28 tablets

English CCG area prescription rates

openprescribing.net/analyse...

Private prescription enables access to cheaper T3. Thybon Henning 20mcg tablets are £1 per tablet

Thank you SD, It’s strange because the south east of England does look like they prescribe t3 but lewisham/Greenwich don’t appear at all, meaning they don’t? NB That is still a crackingly expensive price for t3! Nevertheless, I’m going to have to do something, because Every morning I’m waking up theoretically with hypothermia (temp average 35 or 34), and my pulse is always below 60. I’ve been told I’m bracychardic? (Not sure what that is other than a slow heart beat?) sorry going on,

Have you thought of going private and having a trial privately. It will cost money but you will know in the space of a few weeks whether it works or not and can use this as evidence with your NHS consultant.

Ultimately try to go and see someone on the TUK list and ask if they can transfer you to their NHS list later.

SlowDragon profile image
SlowDragonAdministrator in reply to ShatteredofLee

Would agree with Wired123 ....going private initially is often easier option...then fight for T3 on NHS

Testing positive for Dio2 gene for example can help get T3 on NHS

thyroiduk.org/deiodinase-2-...

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 ...NHS and Private

tukadmin@thyroiduk.org

Wired123 profile image
Wired123 in reply to SlowDragon

Just keep the DIO2 result quiet if it’s not positive. You can be negative yet still need T3. Never give the NHS the chance to say no!

This is exactly what’s happening to me my last results tsh 9.1 t4 22.1 my temperature and pulse very similar each time they adjust my dose it’s never right, I’ve been accused of non compliance which I take offence to, as I had my thyroid removed 25 years ago, in desperation after the NHS endocrinologist wrote saying my t3 would naturally be borderline low it’s 3.0 I have made an appointment to see a private doctor recommended by Thyroid Uk this Friday praying for some answers, currently signed off work good luck

Lots of great advice already given. Id go private of it were me. Get a list of thyroid friendly docs from thyroid uk .I ended up on a ndt and have done very well on it....it was a long battle. Took me three years to get it on the nhs........that was nearly 15yrs ago and I know the situation has worsened. I think first off is to get your hypothyroidism optimally treated then take the nhs on.

You may find a nhs endo who will prescribe but frankly the ones I know of have all retired or been mistreated by the nhs.

There is an irrational obsession in the medical profession about keeping us all on levothyroxine under treated on that too.......it defies all common sense and certainly is not science based practise but the longer this nonsense goes on the more entrenched the medical profession has become. Essentially big pharam love it because if you are under treated or not treated you have loads of symptoms which the doctor will treat with a wide variety of medicatioms from blood pressure tablets to anatacids to pain killers, anti depressants, skin emolients, eye drops and the list goes on....its a national disgrace and I do hope that one day the s*** hits the fan and the NHS finally wakes up to all the huge harm they are causing. Its like the tale of the emperors clothes......no one dare say in the medical profession as they get shot down so this ridiculous situation carries on.

Excuse my rant but it breaks my heart to read posts like yours where there is clear medical Incompetence. knowledge is power so read up all you can, prepare for battle, keep posting on here and you will get great support.

Thank you so much,

Yes I get T3 in Kingston. When I got referred to them I was given a named doc who wasn't on the Thytoid U.K. list so I rang the hospital and asked if I could see a specific one and they said fine. When he retired his successors have all been ok giving T3. One specifically stated that their aim is to treat my symptoms.

Mollyfan profile image
Mollyfan in reply to JAmanda

My consultant worked at Kingston until he retired. May we’ll be the same person! He is fantastic!

JAmanda profile image
JAmanda in reply to Mollyfan

Could be, lovely Spring weather this weekend!

Mollyfan profile image
Mollyfan in reply to JAmanda

It is, and I think it will be just as nice in France! 😀

Postcode lottery, preston north west give nothing

Ccg graph Liothyronine
pennyannie profile image
pennyannie in reply to Dorey69

Thanks for that - I see my CCG are still top of the table so no change there in the last 3 years.

I know they were actively encouraging people to switch back from T3 to T4 and that no new prescriptions were to be issued just to try and take them out of the " lime light " ????

Have you tried doing the DIO2 gene test to help your case. If your test result is positive this will add weight to your case. Meaning you are a poor converter and struggle to convert T4 Levothyroxine to active T3 hormone. My NHS Endo wouldn’t even put me on a trial of T3 even though it was evident through my blood test results that I was barely converting, I only convert 8% from T4. My test came back positive. I took the result to my GP and he thankfully scanned it onto my NHS record. They can’t argue with the facts. I had to go private for a T3 trial. I had an immediate positive response. I could barely walk before my trial of T3 combined with T4 medications. Now I can walk 10 miles no problem. The DIO2 gene test is one test that just could help sway things. You can get in done through Regenerus Laboratories who are promoted through TUK. I now get my T3 off the NHS although the NHS Endo was very reluctant until he was reprimanded I was informed. I still keep intouch with my private Endo for backup as I trust him much more than any NHS Endo.

Just a thought to try and help.

Thank you that’s good to know. I’ll check that site out. I have another sister who’s on thyroid and a sister with type 1 diabetes, so we’re a family keen on endocrine disorders.

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