I am new to this group but have been able to find out so much more about Pernicious Anaemia from your helpful posts. Like so many members I have struggled to get a diagnosis for many, many months and am still struggling to receive appropriate medical assistance. I now have a Pernicious Anaemia diagnosis, with gastric parietal cell antibodies, along with neurological symptoms.
My G.P. arranged 5 loading doses and three monthly B12 injections. I find it takes a week for the injections to have any effect and about a week later the benefit is wearing off. I find dizziness is one of the most challenging symptoms and this symptom remains most of the time. I have been informed that only a Consultant can order loading doses every other day until symptoms start to improve when Pernicious Anaemia with neurological symptoms is present, so I am left struggling.
I am thinking of arranging an appointment with a Neurologist but I am having great difficulty finding any Consultant who as an interest in Pernicious Anaemia.
Written by
yorkshiregirl4
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I think that it’s more or less impossible to find a consultant with an interest in and good knowledge of Pernicious Anaemia.
I’m surprised to hear that only a consuktant can prescribe every other day B12 injections for neurological problems arising from P.A. I don’t think that is true . A GP can prescribe EOD injections when he believes it necessary . Surgeries like to employ as few nurses as possible . ……………….…
If you read posts on here , you will find out that most of us have had to resort to self-injecting. . When /if you reach that stage , let us know . We are here to help . Welcome and best wishes .
Many thanks for your kind reply. How depressing, your news about consultants. Although I have had so much mis-information from doctors that I guess it really isn't a surprise.
Many thanks for your kind reply. I am afraid I don't know what Cawthorne means. Whereabouts is your helpful Neurologist based? I seem to have wasted so much time with unhelpful doctors which we all know is exhausting.
"I have been informed that only a Consultant can order loading doses every other day until symptoms start to improve when Pernicious Anaemia with neurological symptoms is present"
Like wedgewood, I don't think that's true either.
Link below describes recommended B12 treatment in UK and referral to consultants
Best bet is probably to submit a FOI (Freedom of Information request to your ICB asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
From your name, I'm assuming you're in Yorkshire.
Some Yorkshire B12 deficiency guidelines (may be out of date).
Point 1 is about being under treated for B12 deficiency with neuro symptoms present.
Vital to get adequate treatment. There have been forum members who developed spinal cord damage from delayed or inadequate treatment.
If GP is reluctant to prescribe the treatment pattern for B12 deficiency with neurological symptoms then may be worth discussing with GP whether this puts you at increased risk of developing neuro damage. Maybe show them the article below.
PAS article about SACD, sub acute combined degeneration of the spinal cord
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
Self treatment
Some UK forum members turn to self treatment when NHS treatment is not enough. I was forced to treat myself when NHS refused to treat me.
Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some as a last resort turn to self injection.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you for all your advice. I have now emailed the local ICB. I have been reading postings on this fabulous site for some time and am now realising why so many members have had to SI their B12, particularly as my symptoms increase with inadequate treatment. It is great to hear from folk like you willing to share your experiences to help others, thank you. I believe my GP has not listened to my symptoms so will probably send him a letter confirming these and then cannot claim to not know. Many thanks
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
I think many ICBs and Health Boards will update their local B12 deficiency guidelines after new NICE guidelines are published in Nov 2023.
Keep an eye on your local guidelines. Sometimes they change unexpectedly and not always for the better.
See blog post below about a UK area with unhelpful local B12 deficiency guidelines.
Well done. I don't think these doctors realise the massive difference B12 injections make to us and the enormous difference to quality of life they are removing without a second thought. Does anyone have any suggestions about accessing appropriate loading injections , other than SI? I live in S.E. England.
Hi. I’ve finally got a GP that is listening to me ,though they are based at another surgery but also combined to my practice. I’ve had no b12 injections for two years because of Covid. I was given the b12 supplement tablets in place but left me with side effects. I am having on going symptoms at this present time not sure if there another symptom of b12 deficiency . A general question to everyone. I am 65 years old with a soar left nipple and very painful swollen breast. Ive had a mammogram + ultra sound thankfully all clear. I have had antibiotics for a possible infection which I have now finished. I saw another consultant yesterday who was very reassuring but still have this problem.Has anyone suffered any issues with their breast this would be of interest to know. Thank you.
Thank you. I rang my GP today and requested some bloods to be done as I am not happy with the recent doctors comments who I saw at my nhs breast clinic yesterday.I can’t make out why no one has suggested any bloods taken which might indicate what is going on.
Those who present with neurological symptoms need to be treated frequently for nerve repair. If you consider the long wait people are to expect for a neurologist appointment, it would be far from ideal for a GP to make patients wait for a consultant's report before treating nerve damage appropriately.
I got two injections a week directly from primary care - for six months.
This was meant to be three injections a week, requested by my GP as the nearest to EOD they could manage - but nurses could never book in more than two ("too busy"). Some were very reluctant, but no matter. I gradually made improvements - and occasionally recognised my old self.
This was a frequency adjustment because I was clearly deteriorating on the usual (6 loading then every 3 months) regime. My GP had my methylmalonic acid (MMA) tested and it was found to be raised. The testing laboratory confirmed her diagnosis of functional B12 deficiency and the frequent injections began immediately. (Renal problems had already been ruled out as the cause of raised MMA, later SIBO was also ruled out.)
Although one injection a month was decided upon for a maintenance dose, this frequency did not help me maintain my improvements - and so I started self injecting.
My GP was exceptional.
Read the NICE guidelines - for GPs to follow - about those with B12 deficiency who present with neurological symptoms.
The new guidelines will be published in November. Let's hope that they are not so roundly ignored as the last ones have been !
Many thanks for your reply. It is always interesting to hear how other members have managed to get treatment. You are very fortunate to have such an exceptional GP, even though your loading treatment plan should also be available to me as well. My GP has refused loading doses in excess of the five I have received but I may be able to use your loading schedule as a suggestion. Kind regards and thanks for your help.
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