Albeit we have had similar posts by Julian Owen some might find this of interest.

[Jillymo]

If only all our Gps / consultants had the same understanding of the condition I feel the number of people on this site would rapidly fall. I do hope the new guide lines will stops our unnecessary suffering. I am aware similar has been posted before but newbies perhaps wouldn't have seen.

cuh.nhs.uk/news/expert-call...

[Sleepybunny]

Hi,

Thanks for posting that.

For others reading this thread...

Julian Owen is one of the founders of Club B12, a worldwide group of researchers and doctors looking into B12. The group was founded after he suffered a personal tragedy linked to B12.

Tell your GPs and specialists about Club B12.

club-12.org/

[Jillymo in reply to Sleepybunny]

Thanks Sleepybunny Club B12 is a good one to have at hand.

Your full of useful information. 😘

[Bellabab in reply to Sleepybunny]

How come I did not know about it?

[Sleepybunny in reply to Bellabab]

Probably harder for members of public to find out about it when it's aimed at researchers and doctors. Club B12 is in the process of becoming a charity so maybe there'll be more interaction with public when that happens.

[Hockey_player]

Yes- I completely agree- people should get enough B12 to keep the symptoms away. I am in despair about the number of people who report a return of symptoms long before they can get their next injection.

[Jillymo in reply to Hockey_player]

I were given the same cap fits all dose of 3 monthly injections despite my neuropathy. It was nowhere near enough so it was a battle with my surgery but I requested to be given 2 monthly, it was granted. My symptoms still persisted so I took matters into my own hands and started self injecting. It is a dreadful situation to thing people are so desperate that they are forced to buy from abroad.

[PippyLou in reply to Jillymo]

Could not agree more Jilly! This one cap fits all is a disgrace and the fact that the UK makes it illegal to purchase B12 to self inject is disgusting The amount of money the NHS could save if they just educated all GP's about B12 and PA? How many antibiotics are prescribed and unnecessary tests carried out every year before the correct diagnosis of PA/B12 deficiency is made?? What angers me is that the clue is in the name 'Pernicous' = deadly! what other condition has this word in it yet whenever I tell anyone I have PA they grin and tell me to eat more spinach!!

[Jillymo in reply to PippyLou]

If spinach was the answer we would all have buck teeth and long ear's. 🐇

I have been trying to get answer's since 2019 ! I have had my colonoscopy and now waiting results. They have found an abnormality on my barium CT scan - I would like to know what that abnormality is ? Hey ho this is the NHS so perhaps i'm expecting too much. 🤔

[PippyLou in reply to Jillymo]

It took me from 2013 to 2018 to get diagnosis and have been battling since then to increase injections and get some answers about nerve damage to hands and feet I haven't even been offered a colonoscopy but I have had some worrying symptoms lately (bowel issues) and have an appointment with my GP 1st Feb to discuss them I wish you all the luck Jilly xx

[Jillymo in reply to PippyLou]

Insist on a referal to a gastrologist.

This is where the NHS money is wasted. It is like being on a damned roundabout but we cant get off. What makes me angry is they dont acknowledge our need for frequent injections due to nerve damage and neuropathy but there first port of call is to send us to a neurologist ! The loony I saw tried to label me with FND.

I was furious, dont give up the fight be insistent.

[3rdNettydoon]

Thank you for this.

[Darkvarnish9]

Unfortunately, my doctor and the hospital consultant, seem to think that it doesn't apply to them. My doctor actually said that palpitations is not part of the B12 problem. When I reminded her that it was on the NHS list that I had given her. Infact there was fourteen symptoms that matched but still no injections. I am now taking 24 tablets a day to keep all the symptoms away.I understand that you can get B12 from Germany. Looks like I'll have to go that route. I can easily have injections but the thought of doing it myself is a very different thing. It would be lovely if a company could bring out a eppy pen version. I could cope with that.

Thanks for making me feel as if someone is listening.

[Jillymo in reply to Darkvarnish9]

My Gp wouldn't even take my symptoms into account but at least she prescribed the one cap fits all 3 monthly injections. How are you getting on with the oral B12, has it helped with your symptoms ? If the oral tabs are keeping you symptoms at bay it sounds like your absorbing.

I can assure you your not alone so many of us have received the same attitude from our Drs.

I dont know about an eppy pen but many on here use sub cut and inject into the belly. I get my supply from Germany, like you I were dubious at first but you get used to injecting. Your not alone we are listening. 😘

[Darkvarnish9 in reply to Jillymo]

The tablets only help with symptoms, and only for a short time and then I have to take more to get the same effect.

[Jillymo in reply to Darkvarnish9]

Have you tried the B12 Patches ? It does sound as if you are absorbing.

If you have your blood results with the margins you could pop them on here for further advice. It would be interesting to know what your ferritin levels are ect. I know what your saying about keeping the symptoms at bay.

You could try pushing your Dr for a trial of injections or try seeing another Gp in the practice - or you could print this out and wave it at them........... cuh.nhs.uk/news/expert-call...

[Nackapan in reply to Darkvarnish9]

Subcutaneous might be less daunting for you.See other doctors ?

[Sleepybunny in reply to Darkvarnish9]

Hi, might be worth starting a new thread with your story.

Many UK forum members struggle to get adequate treatment so I'm sure you'll get some helpful responses. Following links might be helpful....

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

If you have time, search online for this UK document "NICE CKS Anaemia - B12 and Folate deficiency". Try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare them with NICE CKS Anaemia B12 and Folate deficiency.

Lots more info in forum pinned post "Various B12D/PA resources".

Will pass on more info if you start a new thread.

I'm not medically trained just someone who suffered for many years with unrecognised and untreated B12 deficiency.

[EllaNore]

Thanks Jillymo. Good info.

[Mixteca]

Agreed! If that were the case and they thought like Japanese doctors - effective screening, injections for anyone with B12 levels under 500, then this forum wouldn't need to exist. We'd all be well because deficiency wouldn't arise in the first place. Such a simple concept...