Lets start the queue for T3!

[shond2015]

I don't know about you but I wanted you to know that personally, I am celebrating the small victory we hypothyroid sufferers won regarding the prescription drug list and the NHS decision to allow T3 back on the NHS list... I am sooo happy! In fact...I am still bubbling with excitement.

Like thousands of you, I too, was so angry about the 21st century attitude toward hypothyroidism....and I was left fuming over the many injustices and ignorance (and ARROGANCE) surrounding which drug should be prescribed to us sufferers from people who, before the debate/review, probably had never even heard of the word Liothyronine let alone understand its meaning. (even my own MP probably didn't even know what hypothyroidism was until it hit the news headlines - thanks to TUK)

Like many of you, I did my part - such as completing the NHS survey (and talking many of my family to supporting me on this)...I also wrote to the 10 most influential decision makers in the country which included Sir Bruce Keogh and Simon Stevens (NHS England) and I wrote to every Parliamentary Minister with even the slightest association of Health. I know they all got my letter because the response I got from Simon Stevens secretary.( Simon Stevens couldn't be bothered to reply personally!) thanked me for all my letters and offered a collective response.

The fact that so few of us (5,800 to be exact) were able to influence the decision makers sufficiently should be seen as an absolute victory. And I sincerely thank all those who like me, fought like tigers (behind bars!!) to get this victory.

Yes I know that we still have to jump through a few hoops to get it.. and No..it isn't great having to join the queue to get a decent Endo who is thyroid educated and 'patient compassionate' .but the fact is... its a GREAT STEP FORWARD......and those who are wholly dependent on T3 (me included) may no longer need to panic or become highly stressed about how they are going to obtain their next supply line. because once prescribed...you can be sure of a reasonable quality drug that is fully licensed.

To improve our health care even further, we may need to use the power of our voice again to effect further changes......but for now...it is a small triumph for all those of us who suffer.

I urge all those who are newly/recently diagnosed and currently being treated with T4 therapy (Levothyroxine) ...but still feeling like **** to have the courage to challenge your GP and request the Endocrinologist pathway to T3.

T3 has been my life saver....

so again, a sincere thanks to everyone who took the trouble to make our voice heard...and most especially, thank you to Lyn Mynott and her team. Getting the issue broadcast on BBC was absolutely brilliant!!!! thanks.

[Snoddyoddbod]

I’m going to see my Gp on the 14th of December and I’m going to hit him square in the jaw with it !!!! I totally agree it’s a victory. And from little acorns mighty oaks grow. So onwards and upwards people!!!!!!

[shond2015 in reply to Snoddyoddbod]

Snoddyoddbod

Fantastic! Let me know how you get on!!

[shaws]

Those for whom levothyroxine works that's great but to insist that levo alone must be prescribed and we have to get an Endocrinologist's confirmation for T3 means they will be busier. The waiting times will be longer too and most Endos aren't in favour of T3 so for many who've already done that journey have mostly been very disappointed. We've also heard that from the horse's mouth when a speech was given at Conferences. Also in the BTA's/ATA guidelines. Latest 2015 states:

L-T4 is the treatment of choice in hypothyroidism. The

goal of therapy is to restore physical and psychological well-

being and normalize serum TSH (Table 1).

•

The adequacy of therapy should be determined both by

clinical and biochemical assessment, and undertreatment and

overtreatment should be avoided due to their detrimental health

effects (Table 2).

•

There is insufficient evidence to recommend monitoring

serum T3 as a therapeutic target in hypothyroidism (Table 3).

•

A proportion of patients on L-T4 therapy have persistent

symptoms despite normal serum TSH levels. Such symptoms

should be acknowledged and alternative aetiologies sought

(Table 4).

•

There is insufficient evidence that combination therapy

with L-T4 and L-T3 therapy is superior to L-T4 monotherapy

(Table 5).

•

L-T4/L-T3 therapy may be considered as an ‘experimental

approach’ in compliant L-T4-treated hypothyroid patients who

have persistent complaints despite reference range serum TSH

values, provided they have received adequate chronic disease

support and associated autoimmune diseases have been ruled

out (ETA) (Table 5

–

6). There is currently insufficient evidence

to support the routine use of such a trial of L-T4 and L-T3 out-

side a ‘formal clinical trial or N of 1 trial’ (ATA) (Table 5).

btf-thyroid.org/images/docu...

[Nanaedake in reply to shaws]

I don't think the 'victory' will change the situation in this part of the country one bit. GP's might possibly feel a bit more sympathetic toward T3 but their hands are tied by the Endocrinology route and whom they can refer patients to. I've consulted 3 Endo's and there is no one on the Thyroid UK list anywhere near this area so T3 will remain out of reach.

[bantam12 in reply to Nanaedake]

Plus the "victory" isn't miraculously going to change the minds of Endos and GPs who don't believe it works nor is it going to overcome the cost so in reality probably little will come of it.

[shaws in reply to Nanaedake]

I was told in my surgery that they wont prescribe T3 now, only T4. They did prescribe and know I've bought mine for a couple of years now, particularly since MP ran out of T3 altogether and they were doubtful about prescribing on a 'named-patient' basis.

There may come a time when, for one reason or another, we may not be able to source. For instance, say we went into 'care' of some sort (or into hospital) I doubt they will prescribe T3 but only T4. I wouldn't think a person would have the option of choice and they would become very unwell.. They will insist that's all that is prescribed - that T4 is equal to T3. How can we protect ourselves especially if communication was a problem?.

[Avidreader in reply to shaws]

My GP said the NHS wouldn’t supply me with NDT - I have to buy - 🤔

[shaws in reply to Avidreader]

NDT used to be prescribed but, just like T3, it was stopped being prescribed due to False Statements made about it, and considering it was safely used since 1892 up till the present time, it is scandalous. The following article was sent by Dr Lowe and, despite three yearly reminders for a response, they never did and Dr Lowe died unexpectedly.

I always assumed that educated people were courteous and truthful and that the Medical Profession were knowledgeable about what was prescribed plus the history of it, but on reading the following you just wonder why lies initiated the withdrawal instead of relieving, where possible, disabling clinical symptoms:-

thyroidscience.com/Criticis...

[Marz]

Whilst people remain under-treated by closed minds - Big Pharma will continue to make big bucks whilst each remaining Hypo symptom is treated individually - low mood, aches and pains, blood pressure, raised cholesterol and so forth.

It is my belief that it is Big Pharma who is behind all this with their influence over the various governing medical bodies. They are richer and thus more powerful than any government. Also Big Pharma has nothing in its tool box for auto immune conditions.

Look back at medical history to see how Big Pharma convinced the world that Levo was superior to NDT. They have not changed .... We are not dealing with the various medical bodies that dictate our health but those that influence them - a sinister scenario.

It saddens me that all the good work by so many here is not being intelligently understood - but I think we know why ....

[shaws in reply to Marz]

I'd like to know how much Big Pharma pays to 'Associations' or doctors.

[Marz in reply to shaws]

We will never know as it is mostly hidden by sponsoring Med Schools in the US - Lectures - Journalists - Conferences - Research. The list is endless. Then you have government ministers investing in drug companies.

Turkeys do not vote for Christmas .... 😊

[Marz in reply to Marz]

verywell.com/is-your-endocr...

So it is American - but I am thinking not a lot of difference in the UK

shaws

[shaws in reply to Marz]

You just wonder when those we thought had a 'vocation' we find out that they don't not like Dr P and Dr S who put patients welfare first and before their careers/livelihoods..

[shond2015]

Thank you to everyone for such valid responses. I completely agree with each and every one of you. I too understand the impact and influence that BigPharma has on the medical profession. However, I am not here for argument...you are my friends who have helped me get so far forward already. Without your help i would not have heard about Dr P, nor would I have become so knowledgeaable about the condition and the treatments available.

However.....in my view, this is a small victory. And I am delighted....it means that we have now got a little more arguing power for the next fight with the government. It simply could have gone the other way completely and then where would we be then? A much more despondent, angrier, frustrated group of victims than we must be at present..

None of us in this 21st century world should have to fight for what is our basic human right - to be treated appropriately in order that normal health can resume where possible.

But we must remain optimistic and positive. SO, when the waiting lists become a lot longer (IN PART, due to the world shortage of Endocrinologists) the battle may have to begin again for us to gain further reforms to the issue. We have to complain again...in large numbers.. but we are certainly in a much stronger place for this next battle than we would be if they had continued with the ban of Liothyronine through the NHS.

I understand how hard it will be for some of us to argue with our arrogant and ignorant GP after all, we have the 'flawed' blood test to argue. None of us want to, nor should have to do battle - this is draconian to say the least ....but it is what it is at the moment.

I have learned (and learning has been painful, stressful and unhelpful) since being ill with this terrible disease, one good process to help ourselves- especially when dealing with any GP/Endo, is to arm ourselves with our own clinical evidence - by monitoring our own health and keeping that daily record to show our GP it can have impact.... and if it doesnt.....we have to do what Dr Lowe, Dr Peatfield and many other experts in the field suggest. Change GP until you do find one that is sympathetic to the condition. Not easy....and made even worse by the symptoms we suffer which effectively reduces our ability to handle difficulties like this... but we have to do it. shouldn't have to, but we have to.

And in my view, getting T3 back on the list - however limiting at present - is most definitely a positive thing.

[netgrouchy]

Yay!!! Well done everyone who helped to make this happen!!! Here's hoping that everyone gets into the queue and that the added T3 is helpful in regaining health! Yiiipppppeeeee!!

[shond2015]

my feelings entirely!! (the yippee bit especially!)

[Cup-cake7]

Hi 😊👍🏼

Yes. Please may I ask you on personal level at what point did you give up on Levo? What dose?

[glamrocks4girls]

Totally agree Shond2015 and thank you (and everyone else) for the amount of work you put in. I completed the survey and wrote to my MP, who was reasonably supportive, but generally I have just worried and been stressed and angry for so long over this issue that this relatively small but positive step is very welcome. I have been one of the lucky ones who up to this point have never had any trouble getting liothyronine on the NHS but that didn't stop me worrying! I too am totally reliant on T3 and can't tolerate any T4. Let's hope that after all the publicity the NHS will actually do something about getting the cost down and then I will feel a little more confident that T3 will continue to be prescribed on the NHS.

[Angelic69]

If however you have had muscle weakness due to T4 that may have effected your heart musxcle that will be a no for T3 as if you have had issues with your heart they use that as an excuse not to prescribe it. please help.

[shond2015]

`Jeppy...I have private messaged you with the answer you requested. Best wishes, Shon D