T3 on the NHS

[mushumouse]

I find myself in a very difficult situation and wanted to see if anyone has any advice.

A few details about me:

- Total thyroidectomy in 2016

- I have trouble converting T4>T3, so after over 4yrs I’ve finally got my meds regime right (T4+T3 combo) and it has changed my life.

- was treated by Bupa for the first couple of years (employer benefit) but they no longer cover me as it’s “chronic”

I transferred from Bupa > NHS late 2019, already on T4+T3 combination. I found a much more progressive endo than my previous one (not focused on TSH) and he upped my dose of both meds, got me optimal and changed my life. My NHS GP prescribed my T3 based on his guidance, no problem.

I then moved house to a different area where T3 was Red listed on the drug formulary (it was Amber listed where I lived previously) and my new GP refused to continue the prescription. I had enough T3 to keep me going for a while so left it for the moment.

Now there has been a recent change on the formulary for where I live - Red > Amber, so I emailed my GP asking her to add it back to my prescriptions.

I get a text message from her saying she has authority to prescribe it and has sent it to the chemist (this news made my day! It really look a massive weight off my mind).

3 days later I receive a subsequent text from her saying I need to see an NHS endo and she can’t prescribe it, I need to get my private endo to prescribe it instead.

This was obviously confusing as my endo is an NHS endo! It seems my NHS endo is saying I can see him as an NHS patient, so I don’t have to pay for the appointment privately, but he won’t approve prescribing T3 to me on the NHS, so I have to pay him a “prescription fee” (£50) in that NHS appointment, for him to write me a private prescription. Aside from the £50 twice a year, the other issue with this is that post-Brexit I believe it is very difficult / expensive to get T3 (my old pharmacy in Germany is no longer shipping to the U.K.).

Is this right? Why can he write me and my GP an NHS letter saying that T3 is right for me and has changed my life, but then refuse to prescribe it on the NHS, only prescribe it if I pay him?!

Has anyone been in this situation? Have you had to do a trial on Levo only to prove you need it? Last time I was on Levo only, my blood test results were T4 top of range, T3 bottom of range. My resting heart rate was high 30’s at its worst. I work full time and have two toddlers, so going back to T4 only terrifies me

Thanks for reading

[SlowDragon Administrator]

Brexit has stopped access direct from Germany

But specialist pharmacies in U.K. are able to supply Thybon Henning 20mcg tablets at £1 per tablet on private prescription

U.K. T3 (morningside healthcare, Mercury Pharma or Teva) available via NHS ....price is dropping slowly. Now £118 for 28 tablets

[shaws Administrator]

Make an appointment to see your local MP and tell him also how much mental suffering you're undergoing at present due to now being refused an essential thyroid hormone that has restored your health since ? but is now withdrawn.

It's awful that people who need the 'life-giving' T3 in the UK are denied (they've already removed NDTs through misinformation, despite it saving lives from 1892 and still does today, except it is banned).

How difficult life becomes for a section of those who're hypo who now cannot get a prescription that enables them to be 'fit and well'.

Not all can afford private consultations and pay for our life-giving thyroid hormones.

I already know of someone whose life could 'no longer continue' due to her distress and constant ill-health. Probably the death certificate would say 'whilst mind was disturbed'.

Where is the 'vocation' in helping sick people recover their health?

The thousands who are fine on levothyroxine will not be searching the internet, they'll be out and about and feeling 'normal'.

For us for whom levo does nothing at all but increases awful symptoms causes enormous strain and I've already read someone's last testament of her reason to take her life. This is awful in a 'supposed to be' welfare system, whose first aim is to be concerned and restore patients' health, whatever they suffer from.

[DizzyD in reply to shaws]

It's heartbreaking shaws to read that some distressed thyroid treated, or should I say mistreated/undertreated, patient's final solution is to end their life. So very tragic indeed.

There is limit as to how much suffering one can endure. Suffering is subjective but when one looses hope of any recovery or improvement to their health and quality of life, reinforced by ignorant, uncaring, money driven gate keepers in our health system, there can be horrendous consequences with death certificate stating "whilst mind was disturbed". Ohhh for the truth the to be investigated.

Only last week i seriously looked into carting myself off to Switzerland to end my life. Unfortunately thyroid related health decline would not qualify me as a candidate. Nor would my declining brain function be able to deal with the massive amount of red tape issues.

So inspired by your comment I am planning to go see my MP asap re: mental suffering and the lengths I have to go to in order to obtain thyroid medication and treatment which is very costly and stressful to say the least.

Thankfully, I have the means to go private, for a while at least, but this does not always go in my favour. Private endocrinologist will not prescribe me T3 but he does prescribe NDT so I am lucky to a certain extent.

My heart goes out to people who have to endure levothyroxine treatment only which may not improve their thyroid health at all without the addition of T3.

In memory of those who have chosen to depart from this world due to a decline in health due to unresolved thyroid health problems.

I am not being morbid....I AM FACING REALITY AND BEING HONEST

[SlowDragon Administrator]

NHS prescription for T3 can initially only be prescribed via NHS endocrinologist and hospital pharmacy as 3-6 month trial

Then endocrinologist writes to GP to formally request they take over care and cost of prescription

Obviously it’s all about cost and they will put as many hurdles in the way as possible

Moving areas...in theory you should not need to re prove that you need T3

That’s just another hurdle being put in the way

Which CCG area are you in

You can search prescription rates in England here

openprescribing.net/analyse...

[Babette]

I've asked my endo what the situation is with prescribing T3 on the NHS and it seems that endos have to jump through hoops to justify it. It's crazy. If you have a clinical need and can get it privately, you should be able to get it on the NHS. I do have sympathy for the endos if they're not being allowed to treat their patients.