Seeing My MP next week begging for availability of NDT.. need your support

[Redditch]

I don't get on with LEVO or synthetic T3 and am really well on Armour.. I have ridiculous trouble getting hold of it.. I have to see a private consultant (which my Private Health plan calls "maintenance" and won't pay for) get a private prescription and then pay £159 for 6 weeks supply so I want my GP to prescribe - I don't mind paying for the drugs but I want it more readily available to UK patients..

I need your support... tell me your stories about NDT, issues you have getting it. I want evidence that this is a widespread issue in the UK..

[shaws]

I think the success of this site is due mainly to 'levothyroxine only' fits all patients. Some do well on it but the majority who don't are left struggling with ill-health through no fault of their own.

I am now on NDT and I have put my story on Webofstories under Thyroid UK. The British Thyroid Association condemn the use of dessicated thyroid hormones but Dr Lowe did a scientific Rebuttal to them which was ignored. Even though a GP can prescribe on a 'named-patient basis' few, if any, will do so :-

These links may need to be copied and pasted onto a new tab.

webofstories.com/play/54570...

thyroid.about.com/b/2009/03...

stopthethyroidmadness.com/t...

thyroiduk.org.uk/tuk/treatm...

thyroid.about.com/b/2009/02...

In this final one you will see the BTA's stance on Armour.

british-thyroid-association...

[Redditch in reply to shaws]

thanks Shaws.. I have a recent letter from the MHRA about why NDT isn't on their "list" and am raising this as far up the tree as I can.. already have letters from Jeremy Hunt and the Earl Howe.. am pushing hard for the accessibility of NDT in the UK

[Hidden in reply to Redditch]

What you are doing is fantastic.You can use me as an example of someone who has paid for my own medication for 15 years.

[Redditch in reply to Hidden]

janjan I will.. thanks for your support I am just so cross that this medicine is off "the list" for reasons that are NOTHING to do with cost or efficacy.. just to line the pockets of the levo makers...

[Hidden in reply to Redditch]

My endo also used the excuse that 'batches of armour are inconsistent' and i could not convince him otherwise. They ignore the fact that some Teva thyroxine was recalled, also batches of T3 and that there was recently a shortage of T3. I have always been able to get hold of armour.

[Redditch in reply to Hidden]

we need a twitter campaign.. I am not on twitter..

[Hidden in reply to Redditch]

nor am I.

[Hidden]

I have been paying for armour thyroid since 1998-that is a lot of money to keep me alive! I am Dr Skinner's patient and without him I don't know what I would do. I have seen 2 endocrinologists since 1998, both have agreed that I need T3. The first, in 1998, had never heard of armour, but asked for me to send details to him, which I did.He prescribed T3, but I had already seen improvement on armour and didn't want to rock the boat. Last year I saw another endocrinologist, hoping that he would prescribe armour. He noted that I had 'shown improvement' on armour, all blood tests he did were normal e.g. cholesterol-but he still only prescribed synthetic T3. I did try it, but unfortunately I felt unwell on it.It is so wrong that we have to pay for our own thyroid medication. However I use the pharmacy called Pharmarama and my armour costs are now quite reasonable, although previously I was paying far more.I haven't yet totalled the cost over 15 years!

[Jeannie in reply to Hidden]

Hi. I pay approx. £92 for 3 months worth. Springfield pharmacy. What do u pay

[Redditch in reply to Jeannie]

I paid £159 for 56 1and a half grain tablets

[Hidden in reply to Jeannie]

I used to use Springfield but pay much less with Pharmarama. A prescription for 2 grains of armour a day for 3 months works out at £57.60, including postage and packing. I buy it in one grains.

[Clarebear in reply to Hidden]

I agree - Pharmarama seemed the best value. Luckily I do now get Armour on NHS prescription. Good luck with your campaign - NDT should be available to all. Xx

[Redditch in reply to Hidden]

thanks for the info jan jan.. do you have a prescription or are you just managing your own condition?

[Hidden in reply to Redditch]

I have a prescription from Dr Skinner and my GP has agreed in writing to monitor me.It's crazy that the practise will pay for T3 but not armour!

[roslin]

Hi redditch

I am about to go and see my MSP, to put to him the inequalities of NDT prescribing in this country( UK not just Scotland). I realise that Drs cant prescribe a drug that they are not familiar with but they can learn and it can be prescribed on a named patient basis, which many dont realise. I was on T4 for 35+ years and have draged myself along for the last 15 (if not more) years. I am on Armour for the last 2 months and I am doing much better although I am not on the right dose yet. I have also learnt from this website that NHS Lothian (where I live) has taken the decision not to prescribe NDT to anybody and I question the ethics of this. I have gathered some info (not that much as I was going to rely on my personal story)to present to my MSP and I can pm you if you are interested. Bear in mind that they are on summer break, mine comes back in august.

Roslinxx

[Redditch in reply to roslin]

Hi Roslin

Please tell me the name of your MSP so I can tell my MP

My MP is Karen Lumley, so please tell your MSP her name and if we all tell all of them, we can get this on the radar.. drop me an email and I will send you my stuff.. [e-mail]

[shaws in reply to roslin]

Did you see the video of the 3 Scottish Women who have taken their case to the Scottish Parliament Health Commitee? They are investigating. This is the link.

healthunlocked.com/!/#thyro...

[Redditch in reply to shaws]

they are in touch with me.. we are all fighting... I want to get some people to chain themselves to railings outside the GMC..

[Hidden]

bma.org.uk/practical-suppor...

As far as I am concerned most of our problems are because of the "incentives" GP's at least are signed up to. I don't believe they are all "not" as knowledgeable as they make out to be. Read the info in the downloads at the bottom of the page. My personal story sadly "not only thyroid" I believe is testimony to the information and guidelines for GP's.

bma.org.uk/practical-suppor...

[Natalie_Edinburgh]

I asked my NHS endocrinologist if I could try NDT and she refused and has suggested that I go private in order to get it. She is reluctant to prescribe for fear of getting into trouble. The only health based reasons she could give for not giving NDT were that it is not consistent dose for which she couldn't give her source of information (based on rumour I suspect) I have contacted the manufacturers and they assure me this is not true. And that it could be a source of infection as it is a non sterile animal product, which to me also sounds very flimsy with no scientific evidence and sounds like scaremongering.

[Redditch in reply to Natalie_Edinburgh]

it is absolutely RUBBISH that the doseage is inconsistent.. rumours started by the manufacturers of the synthetic CRAP that they prescribe to all of us but only half of us manage well on..

And that from an endocrinologist! How the hell do we fight this battle if our specialist doctors know absolutely nothing..,

[PinkNinja in reply to Redditch]

Totally agree! The raw material is compounded so that it contains a consistent amount of each hormone in each batch. There seem to have been far more recalls of synthetic thyroid hormones recently for efficacy problems.

[Redditch in reply to PinkNinja]

how many people could we get to chain themselves to railings outside the GMC?

[PinkNinja in reply to Redditch]

I fair few, I dare say. Although with all the brain fog, someone's bound to lose the key!

[Redditch in reply to PinkNinja]

Or get off at the wrong station! true.. need a better plan...

[shaws in reply to Natalie_Edinburgh]

Your Endo says exactly the same as the information on the BTA's site re Armour. Dr Lowe wrote a Rebuttal to them before he died. They never replied to him, despite two follow-ups. They just don't want to believe the truth:-

thyroid.about.com/b/2009/03...

and this NDT has never been recalled for inconsistency over 75 years. You cannot say that for levothyroxines.

nature-throid.com/

[Reefseeker]

Been paying for my own NDT for 18 months now after seeing Dr P and joining this forum for support in getting my own dose right. Definitely better on armour and would never want to go back to thyroxine after 12 years of no progress and getting slowly worse. Have not been to GP for over a year for thyroxine prescription, which they have not noticed, neither have they noticed I am not having blood tests annually. I get a family friend doctor in Cyprus to test T3, T4 and TSH each summer, and have absolutely no faith in my GP to listen to me so haven't bothered - especially after the endo told me 2 years ago that all my test results show I am fine (and ignoring the seesawing TSH over many years, amongst other things).