I have been asked by my GP to pay for my B12 ampules! Is this normal?

Hi everyone, with help from another B12 support website I sourced acetic acid free B12, it's Cobalin H Hydroxocabalamin. A woman who advised of this gets it free via her GP, it's the one her practice uses for everyone. I have interstitial cystitis where I have to avoid all acids, so a very valid reason to request the acetic acid free one. I have been asked to pay £10 for 5 ampules. I admit to being annoyed as i'm already funding my thyroid medication.

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  • I would ask for a meeting with the practice manager , make notes before you go so as not to forget anything and be prepared for fight , if necessary take a witness with you who knows your condition .

    What they suggest is quite wrong .

  • Hello johnbarriesmith, that's a great idea. I will write to her/him outlining why I object to paying and then ask for a face to face meeting. Thank you for your response!

  • Hi Helcaster......do you mind me asking why you are funding your own thyroid medication??? regards lovelyme

  • Hi lovely me, a good 50% of thyroid sufferers are funding their own Natural Desiccated Thyroid and/or T3 medication. There was a recent poll on thyroid UK. Levothyroxine which is the only treatment available on the NHS for Hypothyroidism just doesn't work for some people. I don't know if you are a thyroid sufferer yourself,but I took levothyroxine for 2 years and it didn't benefit me at all. I am a very poor converter of T4 to T3.

    Thyroid Patient Adcovacy wrote to Jeremy Hunt the Health Minister who said we should get alternative treatment to levothyroxine on the NHS. GP's just won't budge on this, more than likely because it's more expensive than levothyroxine, which is pennies.

    Sorry if you are already aware of the above, it's a very sore subject!

  • Hihelcaster

  • Hi helcaster......yes I am on levothyroxine and it certainly works for me I was once on 150mg I am now down to 100mg...I think being on b12 injections has helped lower my dose---not sure!! No I was not aware that G.P. would not help with other treatment..just cant believe it ..how can they get away with it!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I do sympathise with you!!!!! regards lovelyme.

  • Hi lovelyme, i'm really pleased levo works for you. I got up to 200mcg and still had all my symptoms, the only improvement was it made my heart calmer. When I started Armour most of the swelling in my face and body improved. I had been hypo for over 20 years undiagnosed. I don't think it's going to be a 5 minute job to feel and look a lot better! I had so much mucin under my skin I was rock hard and couldn't pinch anything. There's still a long way to go and i'm hoping between b12 injections and armour my swollen tongue will improve too.

    I honestly feel like writing to my MP, after all doctors are public servants paid out of the public purse.

  • hi helcaster...cant do any harm writing to your M.P. good luck to you with getting your medication sorted out!! there must be a way!!! regards lovelyme.

  • Hi Helcaster, My GP also wouldn't prescribe my NDT on the NHS either -however after two years of paying for it privately I shopped around at other surgeries to see who would take me on and prescribe a NDT -I put together the argument that it was cheaper to prescribe the NDT then Levo plus a host of other medications that I needed on top to manage symptoms which would be costly -they agreed with me and touch wood I have had the NDT on the NHS for two years -albeit it has to at a GP's discretion -I did have one sticky point when the GP who had agreed to prescribe it when I joined the practice withdrew his consent but luckily another GP agreed to provide his authority instead as he could see it was doing me good......My oh my -the NHS is a funny old place that's for sure!!!!

    NB -haven' been diagnosed with PA but I definitely suffer with B12 deficiency -the difference that 5000mg of B12 sub-lingual plus a good B12 complex with folate in has been massive -I started with 1000mg which helped for a while but had to increase to 5000. Am afraid I've opted the self treat route -just can't face another battle with the docs and damaged being caused whilst they make their minds up. After 10years of poor treatment for my thyroid I don't want any more long protracted ill health and sadly I have absolutely no faith in docs anymore.

    Hope you get sorted soon :) x

  • Hi waveylines, i'm so pleased you have your NDT prescribed now. The practice I left to move house prescribed it, but not my practice in the sticks. After over a year a new GP has joined the practice who I really like. I really begrudge paying, I pay for T3 too. I'm struggling because my hypothyroidism was overlooked for over 20 years. I don't think my receptors are working well. Cimetidine I have to take messes up absorption of thyroid meds and B12.

    I have asked at 2 pharmacies 20 miles apart in my rural area and they didn't know of any GP's who prescribe.

    Thank you for your reply. X

  • Hi Helcaster,

    that's a real shame -so sorry to hear that -awful that that Cimetidine messing with absorption of thyroid and B12 -that must be a nightmare for you!.

    Apologies re GP Surgery suggestions, I feel like I might have inadvertently rubbed your nose in it further..... lol

    It is all wrong really -people should really be able to access the medication that works for them.

    Really hope you find a solution that works for you. x

  • Hi Waveylines, absolutely a big no on that one. I love it when someone beats the system!

    Like you say the number of drugs you can be on treating hypo symptoms. I had 11 consultants at one point over a 15 year period, not one of them diagnosed hypo. I had to make a case for myself with my GP to get her to do the blood test and the rest is history. By then I felt I had heart failure I could only walk to the nearest bench, you know the feeling!

    When I started armour it took months to see any changes. With me it was swollen tissues improving. I don't feel any less tired overall but that could be B12 deficient too. I've added in T3 again no miracle but my head is a bit clearer and my weight is more stable. X

  • 4 weeks ago was browsing for something on ebay then noticed Porcine Thyroid , there was actually a phone number , spoke to the owner who has auto immune too . I bought 1 pot to try , it is in capsule form with no fillers . have been on it for 3weeks with no side effects it is slightly kinder to my system than ERFA . Will go the full 6weeks and let you know ,But at under £30 for 90 130 mg capsules it was worth a try ..

  • Hi Barrie, I really hope it work well for you. Good to get a product with no fillers. I hate that I have to chew Arnour , it tastes disgusting!

    Can't remember what I pay for my Armour off the top of my head, but what really makes it expensive is the import VAT. Is this from a company in the UK?

  • yes they are in Dorset

  • That's fantastic! Knowing you don't pay import VAT on top makes it look like a real bargain. I paid over £22 in import tax last time and the Royal Mail handling charge, just over £7, it's such a kick in the teeth when Jeremy Hunt said we should get prescribed alternatives to Levo!

  • I will let you know when I have had the blood test after the 6 week period it takes the ERFA to clear my system , but there is no pain and no worse fatigue so Iam sure it is working ok .

    I contacted TPA but got an abrupt response (I am registered with them for over 4 yrs ) . If you dont try options you wont make progress .

    We have to be careful , a lady who I passed on my experiences

    with auto immune , fed back a scathing attack on me by someone on the forum I asked her to google dr weetman she agreed it sounded like him . He`s got 5th column to stop easy access to ndt in the uk .

  • Oh John thanks for the warning -is this man really so desperate that he is joining our forums to get the low down on us all!! OMG how low can you get!

    I know I currently get mine on the NHS -but would you mind keeping me in the loop of your NDT find? Have learnt over the years to keep alternate sources up my sleeve in case everything goes belly up! It's so sad that i have to be so distrusting of the NHS.....and its treatment towards my health....lol Hope you don't mins me asking?Thanks

  • I had a quick read up of Dr Weetman, what a complete b*****d another ignoramus who should be put out to graze! I'm not a nasty person at all, but I just wish these so called doctors could walk in our shoes for a month, they'd soon change their tune. Then of course remove their treatment so they have to take a chance on the internet and spend a lot of money. We're not bonkers it's just the doctors have forgotten to examine and listen to patients. The times i've felt I was teaching my doc with two diseases they seem to be really ignorant about, and of course now B12. I think they should stop checking boxes on a screen and do the job they were supposedly trained to do.

  • Sorry its me again , regarding our common thyroid problem , this man is in charge of our problems employed by the Royal Medical Colleges to enforce the Abbott/Synthroid Cartel , this is stopping us even getting a prescription to buy NDT .Google Prof Tony Weetman , he is a modern Joseph Mengeler who knows exactly what he is doing to patients just for commercial interest . He is responsible for my 33yrs of ill health , I spoke to him on the phone he is adviser to Teva , (Levothyroxine) after my encounter with Ciprofloxacin , got the Levo t cannot fail to work but strayed onto my troubles with"Human" insulin and yes he was aware that 25% of subjects in the Clinical Trials had adverse reactions but he still gave a licence to prescribe . Under freedom of information found 1200 people died mainly from insulin coma`s , not one had an autopsy , I know of 4 friends who this happened to . and I personally had 229 insulin coma`s between 1980 and 2006 , the NHS & Novo Nordisk must have been complicit in the cover up .

    That number of deaths ranks with Mid Staffs Hospital

    Sorry for the Rant , our health is not the priority it is commercial interest , just question everything .

    Kindest Regards Barrie

  • Hi Barrie, forgive the late reply. I had 2 of my grandchildren to stay and i'm only just getting back to normal in ever sense lol!

    I can see you've been to hell and back and I really understand what that can feel like.

    I had a hospital infection after major surgery I reported on the ward and it was ignored, I now have an incurable bladder disease that i'm sure could have been avoided if I had been given the antibiotics in time. 10 days post op I started to bleed so badly the doctor called an ambulance. I was admitted as an emergency and the infection was found. I then had the wrong antibiotics, so approx a month went by with this infection doing a lot of damage. It's triggered an inflammatory response that has been increasing for 15 years. It was a good 7 years of doctors covering their backs before my GP admitted this infection had totally ruined my health.

    I have learnt the hard way the gaps in doctors knowledge, their arrogant attitudes if you challenge them. I could honestly write a book exposing their failings and the damage they have done to me. I lost my career my marriage and a good lifestyle thanks to all this. I know there are 1,000's like me. It's made me very assertive and vocal when necessary with consultants. I just won't take anymore crap.

    Hugs.

  • amazon.co.uk/Could-be-B12-E...

    this is a great book about b12

  • Hi Suki65, i've had a look at this book and i'm going to get one for myself and one for my daughter.

    Thank you so much for your help!

  • I now take b12 500ug 2 a day and i am getting alot better i just wish doctors would listen to us take care

  • Hi suki65, that's brilliant you can feel things improving. I don't think doctors know all the symptoms or how dangerous this can be. Hugs. X

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