Getting Desiccated Thyroid Prescribed on NHS - and how YOU did it?

[helvella]

I have been nudged to create a blog article about getting desiccated Thyroid (NDT) prescribed through the NHS.

However, I have no personal experience of this and am asking for help.

I’m moderately aware of what has happened in the past. But what I want is to describe the steps to getting a prescription now, or in the recent past. Including problems getting a prescription dispensed.

If you have tried - successfully or not - to get NDT on an NHS prescription, please let me know. Ideally, I’ll build a step by step “How to” guide and point out the barriers encountered and how they have been overcome.

Please, in particular, let me know which of the four nations you are dealing with. They are significantly different to each other.

Either reply here or send a Private Message.

[amala57]

Hi, I'm in England. My gp refused a prescription for NDT as it is unlicensed in uk. She said the ccg would come down on her like a ton of bricks. However, she can see that I am well on it. I have asked her more than once. My Endo refused too. He then discharged me.We are on our own.

[pennyannie]

Just for the record -

Graves Disease - post RAI thyroid ablation 2005 -

Spent around 2 years 2014/15 going around various out patient departments for help dealing with symptoms of having no saliva etc - lip biopsy negative for Sjogrens - only blood test flagged was low ferritin - colonoscopy and endoscopy arranged -

Collapsed with the pain being endured and woke up attached to various monitors with a man determined to finish at the back end as we had already had to abort entry by mouth - though I had had both these procedures previously without issues prior to my diagnosis of Graves and RAI treatment.

Bought a laptop - found this forum - refused ' named patient only ' prescription by doctor in around 2016 /17.

Refused both T3 and NDT by NHS Kernow / Cornwall 2018 and told by a diabetes specialist that as my TSH was suppressed I was over medicated and should reduce my T4 irrespective of my T3 / T4 blood test results.

I now self medicate NDT and much improved.

P.S, I forgot to mention that I paid to see the Head of Endocrinology on April 1st 2016 since I had RAI at the hospital and anxious to understand why I was dealing with what I understood to be RAI damage - he totally ignored my questions and just advised me to go on the internet - buy what I needed - and go to him privately to be dosed and monitored.

Same staff at hospital now as then I believe - so it's pretty much sewn up :

  helvella see PS as to the set up in Cornwall :

[debjs]

I have been fortunate to be prescribed NDT by my GP, since 2012 following a year of being seriously unwell on Levo following my thyroidectomy. Not had a problem with supply though needs a few days to be ordered. However my GP is approaching retirement age so I suspect I will be encountering problems when that happens.

[nightingale-56]

I was told I couldn't have either NDT or T3 on NHS, and as I had just gone through complaining and reached the Health Ombudsman, I couldn't face another fight, so went private and improved while on WP Thyroid. This, then went off the market and I am now on compounded NDT from Roseway Labs, which is not quite so good, but the best I have found so far.

[HealthStarDust]

Fantastic idea and thank you!

[Jumbelina]

Thank you for this initiative helvella- great idea

[BB001]

England. I previously had an endo who 'consulted with a team' who agreed that it was appropriate for me to remain on Thyro-Gold a bovine desiccated thyroid as I had become allergic to levothyroxine. He couldn't prescribe though as bovine desiccated thyroid is not a prescription medication. This was extremely helpful, as it meant that if I was taken to hospital they would have to continue my Thyro-Gold. At this point no-one ever mentioned liothyronine to me as an alternative to levothyronxine, I had to find out about that myself. Then search for an endo who was up-to-date with the latest research on poor converters of T4 to T3 and would prescribe T3. Initially he prescribed T3 privately, then he moved me over to his NHS clinic. Sorry, I can't help more. Prior to going on Thyro-Gold, I was privately prescribed porcine NDT but it made me swell up .

[Hypopotamus]

I originally got NDT from my endo in 2007. He had never heard of it so I took in some literature that I had printed off. I also showed him a spreadsheet of my finances at the time, and having read that, he said that he would ask if he could prescribe Armour, which he eventually did.

That lasted a few years before he was told not to prescribe anything but thyroxine due to the cost. He was convinced that NDT worked, but could not override those who mad ethe rules at the hospital. So I have been buying my own since then.

In short, if the hospital or medical practice says NO, then there isn't was way to get MDT on the NHS, not matter how you plead with your care-giver.

[joydot]

I buy my own. Nhs medics are totally intransegent re NDT.

[Tweetypie28]

I was prescribed NDT by a private endo 12 yrs ago but she didn’t raise it enough to rid me of symptoms. She “hinted” I could find a way to source my own so I did and never looked back.

When the doctor found out I was on ndt I was hauled into their office and read the riot act about how the CCG would not allow them to prescribe this medication, how it was unlicensed blah blah blah. Made me feel 2 yrs old and scared tbh. But I felt the best I had in years so carried on self medicating. I’ve had a great 10 yrs in terms of health but because of recurrent UTIs the doctor has ran some tests and found raised ALP and CRP and wants to see me. I’m scared to go for an appt because I’ll have to confess I’m self medicating. I have a suppressed TSH and no doubt they will say I’ve caused my raised ALP. I hate being in this position. The NHS have failed me. My hypothyroid journey before diagnosis was appalling and I was close to giving up. Ndt saved me and I’m so angry it’s not licensed here