armour v coma and death or AF and death

I can not take either levo or lio thyroxin without getting AF - so I have been on armour for 5 years.

my gp phoned me today to say that the pct, or whatever they call themselves now have said that no gp around ipswich can prescribe armour thyroid any more. I am on a low wage so can not access it privately................

anyone any bright ideas of what I can do ??

39 Replies

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  • Ouch, so sorry this is happening to you x

    I believe you can appeal. I'm just having a trawl through recent posts as I know this has come up a lot recently. Here's one for starters: healthunlocked.com/thyroidu...

    And another: healthunlocked.com/thyroidu...

    Have they given a reason why? Is it on grounds of cost or so-called lack of evidence for it working any better than Levo?

  • Re this being Ipswich, this might be a place to start on starting an appeal, or at least getting some info about how to appeal:

    ipswichandeastsuffolkccg.nh...

  • thanks, I have taken a week off work so I can write and complain - cant stay awake after work :(

  • Ritz, what did you do 2 years ago when they threatened to stop Armour?

    I'd appeal to the CCG. Attach medical reports to back up your assertion that Levothyroxine and Liothyronine caused AF, and point out that the costs to the CCG of treating you for heart attack or stroke if you're forced back on Levothyroxine and T3 will massively outweigh the cost of prescribing Armour which you've been stable on for 5 years. Copy your MP on your letter.

    Thai NDT, Thyroid-S and Thiroyd, is used by many members and is much more affordable than Armour at £35-£38 for 1,000 x 1 grain tablets.

  • Thanks for your post. I am awaiting the arrival of Thai NDT. Having been on Levo for 17 years. What does AF stand for? I have been suffering from unexplained muscle and joint pain for 18 months or more now so am hoping this will help.

  • Swicheroo1, AF = Atrial Fibrillation. Musculoskeletal pain is often due to low/deficient vitamin D. Ask your GP to test or order a private test from City Assays thyroiduk.org.uk/tuk/testin... Post the results and ranges in a new question and members will advise.

  • Muscle/joint pain can also be due to being undertreated with thyroid hormones.

  • Thanks for your post. Yes I have been on high vit D3 capsules for 18 months and although I have improved I am still not right. Also recently diagnosed with a leaky heart valve. Hopefully changing my meds to Armour will help.

  • The only time in my life I had muscle/joint pains so severe I could barely walk and body was so painful was when I was on levothyroxine. Always make sure you use the same make each time as fillers/binders in some might have an unpleasant affect upon you.

  • my very understanding gp kept on giving it to me - but has now been told to stop by the ccg - who I am writing to the ccg now

  • Thats totally scary and unacceptable to deny you the one medication you are well on

    Thyroid-s is though available pretty cheaply online

  • Armour costs them less than liothyronine (T3) so that shouldn't be an issue.

    Can your doctor still prescribe it on 'Named Patient Basis' ?

    see this thyroidUK page - print it out and show it to him

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

    Recently someone posted a spreadsheet which showed where NDT had been prescribed all over the country. Browsing through it I noticed that there had been several prescriptions for Armour in and around Colchester. Would a referral to the hospital in Colchester be any help? You are allowed to choose which hospital you go to.

    Keep fighting. Best wishes

  • It was rod who posted the spreadsheet.

  • Hello ritz,

    I'm sorry to hear this awful news. I too was recently told my T3 had been blacklisted and so wasn't to be prescribed any more.

    Your GP can appeal and if he is denied, then you can appeal on the basis that only Amour suits you including any info, test results, literature, anything you think of and ask your GP for all correspondence.

    Your local CCG should have forms for individual finance requests for " named patient requests" for any drugs outside of those allowed, and guidance on the application procedures.

    I am supporting my appeal (if it is needed) by including genetic testing that shows I am absent of a gene used in the synthesis of thyroid hormones. I also have other medical history evidence to strengthen my claim.

    You can also raise a complaint through your NHS but I need to check the procedure myself. Also send copies of all correspondence to your local MP and ask him to help.

    I was also told to advise Lynn.mynott@thyroiduk.org.uk

    Armour should not be refused entirely on the basis of cost as healthcare professionals have a duty of care and decisions should not be made entirely on the basis of cost of the medicine.

    Good luck and dont give up. You are entitled to feel well no matter what medication you require.

    Flower

  • I would speak to your MP as you need thyroid hormones to give you life and synthetic thyroid hormones don't agree with you because your heart reacts badly. Due to the fact that you have a serious life-long condition and all medications after diagnosis is free, you will be forced to either have a very poor quality of life (heart damage? )or be forced to purchase your own.

    I believe NDT is cheaper than UK T3. Just in case - this is a report which was sent to the British Thyroid Association who ignored it as they've been brainwashed into believing levo alone is best when you and me and many others cannot recover our health with it.

    thyroidscience.com/Criticis...

    For your MP and the case is before the Scottish Parliament at present:

    thyroidnation.com/fighting-...

  • thanks I tried my mp but he doesn't seem to be interested in the decline and death of someone who would never dream of voting for him

  • If it's good enough to be prescribed for Hilary Clinton! Complain as others have said and contact your MP.

  • unfortunately my mp is "dr" poulter who has not answered my emails over the years...........why would he I am not stupid enough to vote for him

  • Ha ha - the incredible disappearing 'Dr Dan' - we know all about him think he's busy getting divorced!! My husband wrote to him when we discovered he was (allegedly) paying his mother over 45k to be his 'office manager' and guess what, no reply for us either!

    Will see what happens to me as think London doctor will want me to have Armour, and I will get her to write to my doctor in Ipswich.

    Best

    A

  • Your Ipswich MP is Ben Gummer who is the current Parliamentary Under Secretary of State for Health. He has a good reputation.

    Do contact him - Google for him to find various ways to make contact, including Twitter.

  • Hi,

    I am sorry you are having so much trouble getting your medication. On ,Admin deleted site> you can get 1000 tablets of either Thyroid S or Thiroyd from Thai in about two weeks for £43 including the p&p. There are two companies who offer it and both are reliable.

    I have been taking the Thyroid S for 3 months now and definitely feel better so I think it might solve your problem. Each tablet is the equivalent of one grain or 60mg.

    I hope this helps you.

    Katrina

  • I thought I was sending the above as a private message.

  • Katwoo, I've deleted the site from your post. You can edit your own posts by clicking on the v down arrow and selecting Edit and click Edit response to submit.

  • Sorry, I was just trying to help again! :-(

  • Hi Ritz,

    In August I was prescribed Armour by my endo in Colchester Hospital. do you think your GP practise would refer you to that area? The endo is called Dr B and is very nice. Unfortunately though my surgery took issue with my endo and didn't want me to have it (because it's not licensed) . So I have to go to the hospital to get repeat prescriptions, which is probably what you will have to do.

    If I can be of anymore help please feel free to contact me.

  • If you didn't get the name of your Endo from Louise please send her an email with details of your Endo to put on her list. Thanks.

    email address: louise.warvill@thyroiduk.org.uk

  • Hello Shaws,

    I have done as you asked and sent the details to Louise.

  • The PCT has been okaying the prescription for this long personally I think this doctor is LYING! Doctors have a yearly drugs allowance and if they exceed it they are fined. Your NDT probably takes the amount over the drugs limit. Contact the PCT directly and find out which doctors prescribe.

  • no I don't think she is lying, she was very angry and upset and has been letting me continue on it despite the pct saying no more about 2 years ago

  • The PCT should contact you directly if they want to stop your prescription they simply do not work like that.

  • but why would they bother..........they have no interest in my health only their budgets

  • If you read the guidelines of the BTA they make False Statements about NDT. So much so that Dr Lowe sent them this article and also to the RCoP - he also sent three yearly reminders but never got a response.

    thyroidscience.com/Criticis...

    Considering that NDT has been in use in some form from 1892. It seems so cruel to deny someone who is badly affected by synthetic products.

  • Hi

    I live in Ipswich area and gave spent a fortune on private endos and doctors who haven't heard of (or pretend not ti) NDT. A and E at Ipswich didn't know what liothyronine was either. will ve v interested to see how you get on. have been to London today and think doc will prescribe Armour and write to my zGP so that will be interesting

    A

  • it will indeed as you come under the same pct or what ever they call them selves now. my gp said it was a blanket ban...........who knows why ignorant people do these things

  • I think it is because the Guidelines of the BTA who make False Statements about NDT. Dr Lowe sent the RCoP and the BTA the following and despite 3 annual reminders they never did respond. Dr Lowe has since died, unfortunately, and he was also an Adviser to Thyroiduk.org.uk.

    thyroidscience.com/Criticis...

  • I hardly have enough energy to type never mind argue with ccg.........just starting chemo again

  • Rod's sheet of surgeries prescribing NDT or T3 - but this is 2014 info sorry.

    healthunlocked.com/thyroidu...

  • yes it lists mine but now they say no........and as I am starting chemo again I hardly have the energy to answer this never mind argue with ccg.........

  • thanks for taking trouble to reply Ritz.

    You've been thro' this horrid situation before, take it easy & concentrate on getting stronger first (easy for me to say).

    I hope it all goes well for you sweetie, we will be thinking of you ((hugs)) Jane x

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