Does anyone actually have an NHS 'named patient basis' for NDT?

[lau99]

Hi all, I hope everyone is well .

I am doing a lot better nowadays, having been on Armour for about 9 months now. My memory is much better, I have more energy (and a full-time job in health research ), my muscles no longer ache, and I don't have random dizzy/fainting spells. My stomach bloating is considerably improved (as are my...bathroom habits), and my tummy bloat actually fluctuates now, rather than being permanently pregnant-looking. I'm still in the process of 'de-puffing' all over, but i've lost about 11kg since starting NDT (only 5-7kg off my pre-thyroidectomy weight and 3kg off my ideal weight). I've yet to stick to a consistent workout routine (or clean up my diet...) so I attribute most of these changes to the medication and supplementing folate and Vit D.

I'm still not back to the 'old me', and unsure I ever will be after experiencing something so upsetting, but it's a nice change from the last (almost) 4 years. All of that being said though...the price of my medication is a big point of contention for me. I am so immensely grateful to have it, but I worry that this may not be sustainable long-term.

Does anyone know of anybody/is anyone actually on a named patient list for NDT/DTE? It seems virtually impossible, but the open prescribing document says otherwise...and I am definitely holding onto (a likely naive) hope.

[Hookie01]

Hi ya, I do not have any info for you but I just wanted to sat that I'm so pleased that you are feeling better, it's so good to hear a happy story. I'm also quite jealous as would love to go on NDT lol. I really hope you are able to continue on NDT, its so horrible feeling so unwell. Good luck x

[lau99 in reply to Hookie01]

Thank you Hookie, that's really kind of you to say I'm still not 100% and have better and worse days, but I hope it becomes easier for everyone who would benefit from NDT to be able to get it in the future.

[Delgor]

Hi lau, I too would like to echo Hookie's sentiments as it is good to see people doing well when they've known the reverse. I've been on NDT for almost 30 years and unfortunately have never been able to get it funded although I believe I'm right in saying that some people who have had thyroid cancer managed it. We can all live in hope!

[lau99 in reply to Delgor]

Thank you both so much. I feel so much more normal on NDT. Though still not quite like "myself", I hope that will come with some more time. Yes, I had a feeling that it might just be a fraction of a very specific population who doctors prescribe it to, as opposed to just those who can't stabilise on the synthetic alternatives...there would probably be far more named patients than there likely are, if that were the case!

[pennyannie]

Hey there :

Glad to read of continued well being and general health improvements :

I failed to get either NDT and T3 on the NHS and as you know I'm self medicating NDT.

The improvements are subtle and you need to build back some 4 years of ill health so just stay with it - and my weight loss was the very last piece of my improvements and after around 18 months of self medicating.

You can see through open prescribing which surgeries are prescribing but unless it's a single doctor practise and when I tried to get a doctor's name from a group surgery I was told it wasn't possible.

As I understand things in my neck of the wood - those on NHS prescribe NDT are in care homes and elderly and relocated with existing prescriptions and the thinking goes not to upset elderly patients who have been settled on NDT for some decades.

I'm afraid Armour is probably the most expensive of all the brands of NDT.

Well down on the job - hope it includes thyroid health treatment options as that takes just a minute !!

It's this - there are no options but you can have an anti depressant :

Onwards and upwards -

[lau99 in reply to pennyannie]

Thank you for the kind words and insight, Penny. Aside from feeling particularly wobbly and headachey in the first couple of weeks on Armour (and at one point, being overmedicated for a short while on it! that was definitely new), I have no side-effects. There are still some "remnants" of being hypo that will hopefully fade with time, as you suggest from your experience

And thank you for sharing your source via PM as well - I am sure it will come in handy when I need it. I still have so much anger and sadness at the NHS, I feel it isn't a tall request to be treated adequately with a medication that works. I'm sure it's that passion that helped me get the job! I definitely hope to do thyroid treatment/services research, perhaps for my PhD someday.

[FancyPants54 in reply to lau99]

Hello @lau99. Can you describe how it felt to be over-medicated on NDT? I'm newly onto Armour and I'm suffering. But it doesn't seem like symptoms from an overmedicated list and my bloods were certainly not high in range. Both Frees below 50%. I'm getting debilitating anxiety. Never had it before. I'm currently taking 2 grains, or I was. I tried an increase to 2 & 1/4 a few days ago, but no - don't think that was right at all. I'm wondering if the anxiety is because 2 grains has built up and is too much. It's a slower, softer medication than T3 & T4. It's kind of crept up on me.

[lau99 in reply to FancyPants54]

Hi FancyPants54,

To be honest, I had no idea I even was overmedicated most of the time - it just happened to show up on a routine private blood test, and we reduced my dose by half a grain. I think the fact that I didn't really notice might be a bit unusual, though

That being said, I did have a slight inkling that I might have been on too high of a dose (at the time, I was on 4 grains) because I would get random anxiety and heart palpitations that would sometimes last for a couple of hours. My blood pressure was also slightly high.

Perhaps you may have increased your dose too quickly? From what I understand, many people feel best when starting Armour very slowly and building up...if you've only been on it for a short time, 2 grains seems like quite a lot to me.

[Brightness14]

Slightly upsetting but true. When I was young my mother had always helped to look after my cousin as he had lost his mother aged only two years old.

She had graves but was never offered a thyroidectomy and was in her twenties when she passed away. This was in 1932. Another cousin of mine also has Graves. It was so sad to lose your thyroid but you are well on NDT and have a wonderful life to live to the full.

[lau99 in reply to Brightness14]

I am sorry to hear this, that is a very tragic story and must have been painful for everyone involved.

I am immensely grateful to have found a treatment that works for me so far. Having Graves' disease has been very traumatic for me, as have all of the treatments thus far - particularly the carbimazole and thyroidectomy. I wrote this post because it concerns me that I have only been able to feel well on a medication that I have to pay several hundreds for every time I need it dispensed, when the NHS promises free healthcare for all, and I was only talked into having the operation under the pretense that I would be supported by the NHS in becoming well afterwards...

Thank you for the kind words and encouragement. I will do all that I can to live a happy life.

[tattybogle]

i'm so pleased to hear you are doing better now Lau99

consider yourself awarded an "I'm a Warrior ~ Don't Mess with Me " badge .

(since it's a 'thyroid' badge , if you want it done properly ~you will of course have to make it yourself , sorry 'bout that )

[lau99 in reply to tattybogle]

Thank you, tattybogle I think I still have a ways to go, but this is definitely the most normal that I've felt in a long time...I hope it continues that way, so that I have the energy to make sure that more research goes into this subject - it's far too important to ignore.

I'll wear my DIY badge with pride!!