In spite of very low B-12 levels (95), macrocytosis and neurological symptoms, the GP only gave me 5 loading doses. This was a concession as he wanted me to try 2 X 50 mcg tablets daily for three months and then retest levels.
My symptoms got worse, especially the neurological ones until I couldn't even hold a conversation. I spent many hours composing a polite email to the GP, quoting NICE guidelines (again), and listing my symptoms and concerns, but trying not to put his back up by sounding accusing. To my surprise, he called the next day to say he'd spoken to a haematologist who said that with my numbers and symptoms I need to have injections every other day for at least 4 weeks, and then do a full blood count and check for macrocytosis, but NOT B-12. He even agreed to show me how to self-inject, and has given me some spares in case I break some of the vials.
I doubt I could have got this without the support and information from you guys. Thank you so much! I feel so relieved to have a haematologist overseeing my treatment and am on good terms again with my GP, who has hopefully learnt something new. Anyone else out there struggling to get the treatment they need, please do keep arguing your case and quoting NICE.
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Maisiethedog
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Glad that your haematologist knows their stuff about B12...some of them don't.
You could access your medical records at some point as I'm sure haematologist would have corresponded with your GP and get a copy of any letter from haematologist to GP and put it in a safe place in case you need it in the future.
"and am on good terms again with my GP, who has hopefully learnt something new"
Your GPs may be interested in link below which is to a PAS page with info for health professionals. It is free for health professionals to join PAS as associate members.
In case there are issues in the future with treatment, might be worth looking at my detailed replies on forum threads I've linked to below...
They have lots of B12 info which you may find useful eg symptoms lists, causes of b12 deficiency, B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
There may be some info you can pass on to others who are struggling to get a diagnosis or adequate treatment.
If you are in Gloucestershire, have a look at this blog post below which discusses the treatment algorithm for B12 deficiency that the CCG in Gloucestershire uses.
Unfortunately I think the GP just had an informal chat with the haematologist, but I'm sure he'll have made a summary in my notes. As Nackapan says, I will still have to make sure they carry on with alternate days until no further improvement.
Thanks for all the other info. I am still prepared for more battles ahead, so this will be really useful.
I tested negative for IFABs and the gastroenterologist was not able to find any other cause, so having ruled out diet, I guess we may never no what the problem is, although I know the AB test can't rule out PA.
I came across one debate in Senedd that mentioned B12 deficiency.
I think it would be great if BBC Wales did a programme about B12 deficiency.
May be interesting for you at some point to mention you are in Wales in the title of a post as this hopefully will attract attention of other forum members in Wales.
Your quite right FlipperTD, but the fact maisiethedog had to inform him of NICE guidelines would she have got the right treatment ? To me its maisiethedog efforts in pointing out the guidelines. So congratulations maisiethedog and this website in informing everyone, sleepybunny endless advice on writing letters etc.
Thanks for that. What I appreciate about this GP is that they were prepared to listen and learn, and that's refreshing. We certainly don't all know everything about everything, and it's the ones who 'know that they don't know' who are the smartest ones, [IMHO!] We shouldn't have to point out the guidelines, but sometimes it's better to do so.
I agree with you both. It shouldn't depend on the patient to educate the doctor and get the right treatment, but at least mine has listened in the end, even though we've wasted a month. I was pleased that he was so upfront about what the haematologist said, even though it kind of puts him in a bad light.
The good thing is he didn't get arrogant and go on the defensive (which many doctors do) which is a credit to him and taking advice from a haematologist. It's good to hear, wishing you a speedy recovery.
If you have neurological symptoms it is dangerous ! Dont loose your time, you have to self inject every other day. My B12 was 50 pg/ml with neuro symptoms in 2017 , i nearly was half mortal, now i am much better. Be patient and believe in yourself ! Good luck !
Wow, that was low! I'm so glad you're feeling better now. How long did it take and did all your symptoms disappear?
Yes, it's the neurological symptoms that concern me the most, especially as they've become noticeably worse in the last month. Apart from the tingling, my brain really doesn't work properly any more. I can still hold a short simple conversation without too much trouble, but I get stuck with anything more involved. I lose my thread, forget what the other person or I have said and so many words are missing or come out wrong. I frequently end up stammering or completely stuck. Writing is easier as I have longer to think and I can look back.
I am hoping it is all reversible. It would be very scary if I didn't know why. I can see why some patients are misdiagnosed with dementia.
"Yes, it's the neurological symptoms that concern me the most"
Do you have any balance issues? Symptoms that affect spinal area? A strange way of walking?
If yes, might be worth drawing GPs attention to increased risk of damage to spinal cord if B12 deficiency is not treated adequately as this could make them sit up and pay more attention and hopefully ensure you continue to get adequate treatment.
I'm not saying you have this...I'm not medically trained but I am saying your GP should be aware that SACD, sub acute combined degeneration of the spinal cord, is a possible consequence of B12 deficiency.
Blog post from Martyn Hooper's blog about PA, mentions SACD
Hi Sleepybunny, my "brain" symptoms are almost identical to yours, as well as the tingling in hands and feet, burning sensation on lips. I am taking care walking around the house, after hitting a few doorways. I can't really put my finger on it, but I just don't feel quite right, not exactly lack of coordination, just I don't quite fit into my surroundings. I listed all my symptoms to my GP, who I think told the haematologist, which was maybe why he was alarmed enough to get me straight back on injections.I think this would all be quite scary if I don't know why it was happening.
I'll check out your links. Thanks again for all the helpful info. It would be amazing if Wales could really lead the way on recognition and treatment of B-12 deficiency.
Hopefully it will help someone even if it doesn't help you.
I think PA and B12 deficiency from other causes is massively under diagnosed.
"I just don't feel quite right, not exactly lack of coordination, just I don't quite fit into my surroundings."
If you have concerns about the possibility of damage to spinal cord then consider asking GP in a letter to be referred to a neurologist to be assessed for SACD.
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.
Link has letter writing templates that people can base own letters on.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
Proof a letter was received may be helpful in case there is a need for a formal complaint in the future.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
Proprioception
Your description of not quite fitting into your surroundings made me think of proprioception problems. Proprioception (sometimes called position sense) is awareness of where your body is in space.
Proprioception problems can occur in B12 deficiency and also folate deficiency.
Do you have balance issues
when it's dark
when your eyes are closed
when your view of your surroundings is blocked?
For example, I used to fall off the pavement if someone walked directly towards me and I could no longer see into the distance ahead of me.
I also used to misjudge where things where when I reached for them so that meant broken crockery.
The following neuro tests only be carried out by a medical doctor at medical premises due to risk of loss of balance.
Never at home!
I stupidly tried the second one at home and almost walked into a wall.
Two tests that may help to diagnose proprioception
1) Romberg test
2) Walking heel to toe with eyes closed
Videos of these and other proprioception tests on Youtube.
If no tests are done by neurologist with patient's eyes closed then it's possible that proprioception sense has not been fully tested.
A person with proprioception issues may be fine walking heel to toe with eyes open and then find it extremely difficult to do the same thing with eyes closed.
Be warned that some neurologists may lack understanding of B12 deficiency.
I saw at least 5 neurologists and only one raised B12 deficiency as a possibility despite me having over 40 typical symptoms including many neurological symptoms.
Below is a list of some of the neuro symptoms I had
tingling
numb spots
pins and needles
electric shock sensations
burning sensations
insect crawling sensation (formication)
tinnitus
muscle twitches and fasciculations (ripple like movements)
flickering eyelids
restless legs syndrome RLS
periodic limb movements
dystonia type symptoms
vertigo
migraine (especially visual migraine symptoms)
clumsiness
dropping things,
bumping into things
word finding problems
balance issues
brainfog
mild proprioception problems (problems with awareness of body in space)
memory issues
confusion
struggling to understand complex stories/instructions etc
loss of ability to do mental arithmetic (had always been good at maths)
strange behaviour
There were also some neuro psychiatric symptoms such as mood swings.
There are many other possible neuro symptoms that can be associated with B12 deficiency.
Does your GP have a list of all your symptoms especially every neurological symptoms including any symptom affecting spinal area?
Symptoms Diary
Worthwhile keeping a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received.
This could be useful evidence of improvement or deterioration in symptoms and may help you and GP/specialist to work out how often you need injections.
There are UK forum members who manage on NHS treatment levels but I think that every PA and B12 deficiency sufferer I have met face to face has found that NHS treatment was not enough for them.
Some including myself have had to resort to treating themselves.
Oral B12 treatment
Some forum members manage by using high dose oral B12 tablets although others report that these are ineffective.
Be aware that there are moves across UK to put more patients currently receiving injections onto high dose oral tablets.
This is sometimes promoted as easier for patients. Cynical me suspects a cost cutting measure.
Gloucestershire already has a treatment algorithm that seems to put most patients onto high dose oral tablets. See blog post below.
Have at look if you have time at my recent thread "Article about audit of B12 treatment" which may give you an insight into how GPs surgeries and CCGs/Health Boards might review patients currently receiving B12 injections.
"It would be amazing if Wales could really lead the way on recognition and treatment of B-12 deficiency."
Perhaps someone in the BBC Wales building opposite Cardiff Central station would be interested in researching for a documentary about PAS (Pernicious Anaemia Society) and PA / B12 deficiency.
Health is a devolved issue in Wales so perhaps your local MS (Member of the Senedd/Aelodau o'r Senedd /AS) would be interested in B12 deficiency issues.
Article written by someone from Cardiff Metropolitan University about patients's perception of B12 deficiency treatment changes during pandemic.
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