Why aren’t we prescribed T3 in Scotland? Only levothyroxine

[1123ayoung]

I asked endo about t3 and said they don’t offer it here. Only levothyroxine.

I’m on alternate days with Levo 100mg - 125mg.

My antibody test came back well over a 1000. Does this mean it’s hashimoto?

Thanks in advance x

[Nanaedake]

Which antibodies were tested?

[1123ayoung in reply to Nanaedake]

Endo just said he’d check my thyroid antibody. Said a normal result is 100 or under but mines was greater than 1000 x

[Nanaedake in reply to 1123ayoung]

I presume because you are diagnosed hypothyroid it was TPO antibodies but without the actual blood test result along with lab ranges we're just guessing which is entirely unsatisfactory. You need to ask for copies of results and keep a record of everything tested. There are a range of antibodies that indicate different things, even for thyroid disease.

TPO and TgAb confirm Hashimotos if elevated. TgAb is found in other conditions too. TSI is found in Graves disease.

[1123ayoung in reply to Nanaedake]

Thank you. I will ask for a print out of my blood work

[Hidden]

T3 is being restricted to secondary care only because of the cost. Check out Elaine Smith who is fighting to get it prescribed in Scotland. There was a recent debate in Parliament on the topic

[SlowDragon Administrator]

It should be available via endocrinologist if your results show poor conversion

Post your results here. TSH, FT4 and FT3

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels stop Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

You need to correct low vitamins FIRST, plus likely to need to be strictly gluten free, before considering if need T3

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

[littlemo76]

I wrote to my MSP who wrote to Grampian Health board. Id been on a trial for 14yrs of levo before they tested antibodies n after landing in A&E i had to wait another 8mnths to see NHS endo, who incidently spent the whole consultation asking who id written to n what Dr Toft had said... i seen him privately n even he recomended a trial of t3 after finally diagnosing Hashis. Got letter in couple days ago to say they NHS Grampian wnt prescribe T3 as there is no clinical evidence to suggest it works!! 😠 nothing to do with costs! Grrrr

[Babette]

It looks as though it should be available: "As T3 is licensed, it can continue to be prescribed on the NHS. There are no plans to remove T3 from NHS Scotland."

Source: theyworkforyou.com/sp/?id=2...

Good luck and keep fighting!

Bx

[SlowDragon Administrator]

Here's the recent Scottish parliament debate

scottishparliament.tv/meeti...

[SlowDragon Administrator]

and article recently published in Sunday Post

sundaypost.com/fp/i-was-sca...

[littlemo76]

Both the NHS endo and my GP couldnt give a stuff what Dr Tofts recomendations were as he is retired!! They are stricly going by guidlines from health board. As far as they are concerned Toft left the NHS. His opinion counts for nothing!! Im seriously considering seeking legal advice.

[1123ayoung in reply to littlemo76]

Yeah he just left as I was diagnosed unfortunately.

I just still don’t feel like me if that makes sense. Still very over weight, fatigue and low mood. I do take an antidepressant but I think if we were prescribed t3 I maybe wouldn’t need AntiD.

I feel like any GP or endo I speak too aren’t interested or lack of understanding.

Very frustrating x

[littlemo76]

Oh dont worry i will show him the letter. I'll also send it to Elaine Smith MSP im sure she'l have somthing to say!

[susiebow]

Hi,1123ayoung,just to let you know,I get t3 prescribed in Tayside,no problem my gp and Endo happy to let me have it.I can pm Endo name who works out of Ninewells an Perth Royal Infirmary.

[bazdapuff in reply to susiebow]

Hi susiebow, very late response to this thread but if you get the message could you let me know the name of your endo who prescribes T3? I'm Glasgow based but happy to travel! My current source of T3 has failed and I have a two-week old baby to care for so am dreading the energy crash / depression that will hit when I run out of T3 in a few days.... Any help hugely appreciated!

[larksnest]

T3 is prescribed in Scotland, I live in Edinburgh and get an NHS prescription for it. Can you see another Endo?

[1123ayoung in reply to larksnest]

Really?

I attend the royal infirmary in Edinburgh and they don’t offer it there. So the endo told me when I enquired.

Where are you about in Scotland if you don’t mind me asking? X

[Maggiemo in reply to 1123ayoung]

Dr Nicola Zammitt at ERI will prescribe it.

[1123ayoung in reply to larksnest]

Sorry re read. Edinburgh! Are you private health care? X

[Kacee]

You should have results for Thyroglobulin Antibodies and Thyroid Peroxidase Antibodies. It is not only in Scotland where Endocrinologist do not offer anything else except Levothyroxine T4.

The Chief Medical Officer Directorate Pharmacy and Medicine Division states:

'The prescribing of T3 continues to be an option for clinicians, based on their clinical expertise,and taking into account the healthcare needs of individual patents.'

But, and this is the crux of the problem: Clinicians do not take individual healthcare needs of hypothyroid patients into consideration.

They insist that Liothyronine T3 is not effective and thus denying thousands of people existing with hypothyroid/hashimoto's an alternative option when they do not feel well on T4 alone.

There is even the disgraceful suggestion that patients who continue to be symptomatic despite being on T4 are delusional and need to be treated for being psychological impaired. When patients do not feel better they must all be nuts!

This is utterly disgraceful and ignores a little known fact that many NHS Endocrinologists actually get paid by the big Pharmaceutical companies to promote T4 and ignore patients symptoms.

It is not simply due to the ridiculous cost of T3 because NDT is available much much cheaper and has been more effective with many hypothyroid patients in alleviating their symptoms. Also, should we not expect better from our NHS than allowing a 6000% increase in a life saving drug without the NHS sourcing an alternative supplier?

Doing some research is a real eye opener and highlights the shocking state of affairs and complicity between pharmaceuticals and clinicians.

The oath 'DO NO HARM' is being dispensed with where remuneration is involved. It is like bashing ones head against a brick wall and,considering that the debate about T4 versus T3 and NDT has been going on for over 5 years is indicative that the Pharmaceuticals are winning and , who knows whether or not politicians have a stake in them? The comments from some politicians and so called 'experts' are so alike that one has to wonder if they are reading from a prepared script.

This is a potentially fatal illness but can be greatly alleviated and people can live well for decades on T3 or NDT. But, while big corporations are holding all the power,politicians, Clinical Commissioning Groups, Health Boards and Medical 'experts' will sing the same out of tune song.

It does not chime with those clinicians who listen to their patients, it does not chime with patients who experience no relief from T4 and it does not chime with people who are forced to self medicate out of sheer desperation. It does not chime with people who experience well being on alternative treatment.

Welcome to the NHS's idea of thyroid treatment in the 21st century.

[Maggiemo]

You are entitled to a second opinion and can ask to be referred to any consultant working for the NHS anywhere in Scotland. I have a relative who comes from Argyle to see a consultant at Edinburgh Royal Infirmary. My own consultant at ERI, Dr Nicola Zammitt, does prescribe T3.

[Kacee in reply to Maggiemo]

An Endocrinologist in Fife refused to see my daughter and when our GP referred her to the RIE the Endocrinologist there made it quite clear that she does not agree with T3 and, had she been triaging appointments, she too would have refused to see my daughter as only Levothyroxine T4 is the 'all singing and dancing' drug. The Endo at the RIE stated that she does not agree with patients lobbying as it puts pressure on clinicians to prescribe drugs they do not believe in and, what's more -remaining symptomatic on T4 could be due to other causes but no further tests were going to be carried out. The Endo also mentioned that treating patients from a different Health Board area would cause no end of problems. Another Endo in Livingstone said she could not see my daughter as an NHS patient because of being from a different Health Board area but could see her privately.

We had to pay privately to get the test for antibodies because the NHS does not pay for anything else now except TSH levels. Physicians who agree with Dr Toft and others who dare to voice their doubts about T4 are denounced as 'quacks' and patients doing well on T3 or NDT are experiencing an ''placebo effect' and remaining unwell on T4 simply indicates that you have an overactive imagination and need antidepressants.

There is currently a test trial for T3 being carried out in

Edinburgh, but being cynical I can't help wondering how the tests are

going to be carried out. If it is done by clinicians who have a vested

interest in promoting T4 it raises questions how far ethics will be

compromised.

Maybe if ALL the patients diagnosed with hypothyroidism/Hashimoto's wrote to their MP, the House of Lords and to the papers as well as contacting BBC Panorama, TV morning shows and radio stations to highlights this profoundly immoral stance from clinicians it may make an impact. The fact is that people need and deserve better testing and better treatment than is currently on offer.

[JMo1]

Does it have to be a Consultant who refers you outwith your own Healthboard? My GP told me she couldn't refer my daughter to an NHS Doctor in Edinburgh. She said it had to be a Consultant who referred outwith Glasgow. The endo at the Royal Hospital for Children in Glasgow had refused to see her despite the fact she was very unwell with numerous symptoms of hypothyroidism (letter stated it wasn't necessary as her TSH and T4 were within range). I would like to try to get her to a good NHS endo if that was a possibility?

[Rudegirl]

I am in Livingston .. my gp is excellent although she can’t prescribe NDT .. she does monitor me closely & is very interested in my self medicating .. she believes in me feeling good & not what my blood levels are .. although other doctors freak out when my results come back ..

[susiebow]

Hi 1123ayoung,I did get t3 from Dr Jordon from Ninewells,but she also comes to Perth.I did not feel much better on it though,my gp said just as well as gp s have been directed to stop it.But he couldn't really as it was prescribed by Dr Jordon my endo.

[thyroidnodules]

Ilive in scotland and am on trial combo t4 and t3. Its probably about costs as its expensive and i wonder due to the state of the nhs due to covid if she will keep me on it as it was meant to be a trial but due to covid i havent seen my endo for over a year