Ups and downs update

[Kerrieblue]

I finally received a phone call from my GP who was incredibly nice and friendly. But…… she wasn’t prepared to act on the advice I quoted from both NHS and NICE that as I was still suffering from pins and needles I needed every other day B12 injections until there was no further improvement. After mentioning this several times to her she eventually said she thinks I should have an urgent referral to a haematologist, which to be honest I don’t think is necessary, from every thing I’ve read and all the advice I’ve been given on this forum I believe I just need more frequent jags. When I asked how long it would be before I received an appointment she said maybe instead of requesting this initially she would contact the haematology dept at my local hospital and ask their advice. Please keep your fingers crossed someone there knows what they are talking about! Treatment for Pernicious Anaemia seems so incredibly hit and miss. Thank you to everyone who replied to my previous post, your help and information has been invaluable.

[Wheat]

🤞best wishes.

[Kerrieblue in reply to Wheat]

Thank you

[Sleepybunny]

Hi Kerrieblue,

Might be worth following up your phone conversation with a letter to GP and maybe putting quotes from NICE etc in it.

I think letters are harder to ignore and it does mean that there is a permanent record of your queries in your medical file. Letters to GP are supposed to be put in your medical records.

b12deficiency.info/writing-...

Have you managed to find the local B12 deficiency guidelines for your ICB (Integrated Care Board) or Health Board?

List of ICBs in England

nhs.uk/nhs-services/find-yo...

Are you registered for online access to your medical records?

If not, see your GP surgery website for Patient Access/Online Access/Emis Access etc.

Some people use NHS app to access their records.

nhs.uk/nhs-app/about-the-nh...

It's also my understanding that you can ask for access to/copies of written medical records.

Some forum members including myself have been told everything is normal and have then found abnormal and borderline results when accessing records.

Some have found mistakes in records as well as well as comments and diagnoses they are not happy about.

I think GP surgery can refuse access if they feel that to allow access could cause harm to someone.

GP surgery has to correct factual mistakes eg wrong name, wrong address, wrong date of birth. They do not have to change a diagnosis just because a patient disagrees with it.

If a patient disagrees with something in their medical record, they can ask to have a note inserted in their records saying that they disagree and can give their reasons why.

transform.england.nhs.uk/in...

patients-association.org.uk...

Referrals

These links might be helpful.

NICE guidance Suspected Neurological Conditions

nice.org.uk/guidance/ng127

NICE guidance - when to refer B12 deficient patient to a neurologist/haematologist/gastro-enterologist

cks.nice.org.uk/topics/anae...

Coeliac disease

Just curious, were you ever tested for Coeliac disease?

See NICE guidelines Coeliac disease below.

They say anyone with unexplained B12, folate or iron deficiency should be tested.

nice.org.uk/guidance/ng20

People with coeliac disease can get a negative result in the usual test for coeliac if

1) They have IgA deficiency.

IgA is an immunoglobulin.

2) They were not eating enough gluten before blood tested.

More info on Coeliac UK website.

coeliac.org.uk/home/

Some forum members have found they benefited from going gluten free even if coeliac tests were negative.

Many UK forum members turn to some form of self treatment if NHS treatment is not enough eg extra injections from private GPs or beauty salons (expensive), High dose oral B12 eg 1000mcg or above (doesn't work for some people). Last resort for some is self injection...there are threads about this.

[Kerrieblue in reply to Sleepybunny]

Thank you so much detailed reply

[Jillymo]

🤞your gp isn't contacting my heamatologist ( a London top leading specialist ) who told me she knows nothing about B12 deficiency ! ! !

My Gp insisted I were seen by a neurolgist. I waited over a year to be seen ( he was a horrible ) who simply dismissed all my symptoms and labelled me with FND. I now self inject.

[Kerrieblue in reply to Jillymo]

Oh dear, you’re not the first to tell me horror stories about long waits and bad service, self injecting seems the only sensible way to go, pity it is so awfully expensive. xx

[Jillymo in reply to Kerrieblue]

It's not that expensive and the needles are cheap, it depends on your budget I suppose. I found the normal loading dose and 3 monthly injections prescribed me was not keeping me stable.

Ask your Gp to put some urgency to her letter for you to be seen. 😘

P.s Love your cats. 😍

[Kerrieblue in reply to Jillymo]

Hi there, thanks for your reply, I found a full kit of 15 injections for £240 so that would do a month EOD Glad you like my cats, they’re on IG @ Turbomantomcat if you want to see more of them x

[Jillymo in reply to Kerrieblue]

Thats expensive for 15 ! I get mine from Germany from Versandapo.de, shop around.

I'm off to look at your cats, my daughter works for cat rescue.

[Lincsangel1 in reply to Kerrieblue]

Hi...I self inject daily...the ampoules work out at less than £1 eachI order from versandapo.de or apohealth.de... or when I'm in gran canaria..as I am now..I can buy them over the counter for around 40p per ampoule.

Needles and syringes are extremely cheap from Medisave.co.uk..or free from a local needle exchange

[Kerrieblue in reply to Lincsangel1]

Thank you so much for this, I’ll look into the websites.

[Wwwdot in reply to Jillymo]

Hi Jillymo

What is FND?

🤗

[Jillymo in reply to Wwwdot]

Functions Nurological Disorder - its a label they stick on people when they cant find an answer for their symptoms.......

Despite my long list of autoimmune conditions the consultant didn't bother to investigate and simple gaslighted me due to his ignorance.

[Wwwdot in reply to Jillymo]

Thank you, I will watch out for this. Sadly … a bit like every undiagnosed gastro issue is labelled IBS?

[Jillymo in reply to Wwwdot]

Strange you should mention gastro ! After waiting over a year and a half and having my Appt canceled because the consultant went on strike I have an appt for the 10th of July.

Keep fingers crossed. 🤞

[Wwwdot in reply to Jillymo]

Hi Jillymo

That’s really good news. I do so hope you get what you need from that appointment- take all your evidence and ammunition and let’s hope you don’t need to use it! 🤗🤗🤗

[Kerrieblue in reply to Wwwdot]

Thank you

[Sleepybunny]

Hi,

There are other threads about self injection on the forum which may be worth searching for.

[Kerrieblue in reply to Sleepybunny]

Looking into them, thank you

[Lincsangel1]

This is the one I order

Photo

[Kerrieblue in reply to Lincsangel1]

Thank you so much for your help. Is there any problems getting it delivered or import taxes?

[Lincsangel1 in reply to Kerrieblue]

No..no problems at all.. and no import tax to payIf you want to private message you I can send you the link..for some reason it won't let me copy/ paste on here.

I always pay via paypal when ordering..that way you don't have to put your address on their website which is expecting a German address

I have ordered many times from versandapo.de...delivery is usually around 5 days

[Kerrieblue in reply to Lincsangel1]

Many thanks, just out will PM shortly. Appreciate your help

[jade_s in reply to Kerrieblue]

Hi Kerriblue, i just want to mention it's ok to share info on the forum if you specifically ask for it first. Especially for help with ordering and things like that, it's no problem. Sorry if i made you paranoid earlier.

[Kerrieblue in reply to jade_s]

Your advice has been invaluable, thank you xx

[Hockey_player]

Self-inject? (like the rest of us who want control of our lives)