Good morning everyone, I am so glad I have recently found this forum, I thought I was going mad & so depressed, I was trying to work out how I could end it ☹️. I also have non existent B12 levels, my doctor said he hadn’t come across it before. I was only given a blood test because my depression counsellor noticed the problem with my speech & memory. She sent me for a dementia test, which I failed badly, I thought I had done v well (my mum recently passed away with dementia & my brother has had it for 3 years, he is now 68. Due to my age 60, they thought they should check there wasn’t another reason for the dementia. My doctor has said that he doesn’t have a lot of knowledge of PA. I was put on the loading B12 injections & kept waiting for improvement, which wasn't happening, then after the 3rd injection I started getting bad reactions to them & my doctor stopped them. Now waiting for results of 2 nd dementia test, which I couldn’t answer every question. I was taken off antidepressants to see if that may be the reason I am soooo tired & brain fog But that doesn’t explain the pain in my hands, arms & feet. So waiting to find out if they come up with anything else after Christmas. Very worried ad my ‘sick’ pay from work runs out on the 10 Jan & as I do a very stressful fast paste job, I know I can’t do it at the moment. Sorry I have gone on s bit, I don’t want to burden my family as my 30 yr old daughter-in-law is fighting stage 3 breast cancer & I feel we should all be supporting her & my son as they have 3 small kids. what to do next. Sorry I may have jumped about a bit it has taken me quite a while to write this & take out spelling mistakes, sorry if I miss any. I don’t know what to do next, thanks for taking the time to get to the end of this.
Also non existent B12 : Good morning... - Pernicious Anaemi...
Also non existent B12
Tcurrybums,
Dont apologies, we are on this website because we are all experiencing (or experienced) the same things.
WIth B12 some people bounce back quite well, but others dont especially if you have been deficient for along time. I took along time too recover and the pain etc was horrendous.
Have they checked folic acid, iron as these are also important with recovery. ALso there is a possibility that having started on b12 injections you potassium levels may have FALLEN (this would only be temporary) and vital that you eat foods like bananas and veg etc.
Memory problems are one of many symptoms of b12 deficiency.... please dont panick , Others will respond
With more help, please keep us updated and remember we are all here to help and advise.
Wishing you all the best.
Sometimes with the injections they take a long time before doing good and symtoms can get worse before getting better. Personally I feel if your B12is very low your injections should not have been stopped.
Like you I were depressed, my memory had gone and I were having dificulty walking to name just a few of my issues. Have you noticed any blurring of your vision or issues whith your speach or cordination ?
You dont want to be labeled with dementia if the majority of your ailments are due to B12 deficiency. It is often far to easy to latch onto one illness such as dementia when another can cause similar issues.
I am not a Dr but know from my own experience the malfunctin and cognitive issues I experienced together with both joint and bone pain. The weakness and lethargy was second to none I was literally dragging myself around.
The loading dose of B12 did nothing with regard my symptoms. I was then put on 3monthly injections but still felt dreadful so the Dr agreed 2monthly but still no improvment. Through doing a little research , reading and speaking to others on this site I now self inject .
After injecting I feel worse and all the symptoms come back such as - numbness, pins and needles, stinging, burning and numbness in my legs and feet but with time this improves. If you have been deficient in B 12 for a long time there is no quick fix.
Take a good look at your symptoms and write down any that you feel do not fit into the criteria of dementia. Sometimes we have to be our own detective's to come up with answer's.
I hope you find some answer's soon.
Thank you everyone for your replies from my post yesterday, it is much appreciated. I have spoken to my Dr again this morning with the results of my 2nd dementia test. He said it was an improvement on the last one, but still failed on cognitive questions. I said that I am still experiencing problems such as pain in hands, arms, feet & restless legs. Balance, fatigue, headaches, etc. He said it can’t be due to B12 as I had 3 of the 6 injections. When I asked for the recoded level he said they reported they were below the level that could be recorded. He also said I am not ameamic & my folic levels are ok. So he said my symptoms can’t be due to lack of B12 as my levels should be topped up but will do another blood test at the beginning of Feb to check then. He has made another appointment to see me on 7 Jan and discuss it further.
If your b12 were below recordable levels, it is no wonder your dementia tests were poor ! I am afraid I disagree him regarding him saying it cant be due to B12. Just to reassure you, it takes around 3 to 4 months for your bloods to function properly after b12 administration, so dont be alarmed at the slow progression . I only wished you had found this site earlier and had continued b12 Injections.At least you are now communicating with fellow sufferers who are here to help explaining the ins and outs of b12 and give you encouragement.
Wishing you continued recovery back to a healthy future
Some people get symptoms like tightness of chest, heart palpitations, tremors during the loading doses as they are 6 continuous injections in a 2 week period. I experienced the above symptoms and my Dr decided to give me 1 injection per week rather than 6 in a row to introduce the B12 more slower in to the body over a longer period.
I don’t know if your Dr is willing to do that Incase that is the case. It felt like an overdose of caffeine for me so introducing it slower got rid of those unwanted symptoms. My Dr continued 1 injection per week for 3-4 months before I seen a significant improvement.
If you’re not having tightness of chest, heart palpitations, sudden feeling of anxiety like nervousness like a caffeine overdose then it may be well worth your Dr to look into whether you’re allergic to any of the ingredients but I wrote my own experience at the start of loading doses and spacing them a week apart helped resolve that issue.
I assume you’re having hydroxocobalamin as mostly used in UK by most Dr’s.
It’s usually very safe and effective but do get the Dr to further investigate.
He’s wrong about your levels should be back up so shouldn’t be any symptoms part as most people will tell you your body kicks into a healing process and symptoms can get worse before starting to get better as I mentioned it took me about 3-4 months of weekly injections to notice a good improvement.
But don’t panic, give it time and all will be well.
Edit: Vitamin D also helps with depression so levels should be checked.
Ryaan,
I was very interested to read how your doctors treated you over several weeks instead of 6 x injections every two days. I beginning to think this might be a good idea in that any medication introduce to the body is likely to wake the body up, but too much at once could possible put the body in shock and cause awful pain. My opinion only is a gradual increase regularly might alleviate this shock to the system that puts people off B12 shots.
I dont know perhaps others might disagree!
Yes it worked well for me as too much was causing problems.I think it’s a sensible approach or at least an alternative option.
My partner is suffering at the moment, been on b12 tablets for four years, doctor agreed to give him one injection and he has improved. Been in such pain and put on high strength anti inflammatory and pain killers and he went delirious. His body is not use to medication hes 75 and never ever had these before. Never smoked and hasn't has alcohol for years. Stopped the meds from the doctor and use over the counter. Now he has improved some what. When you wrote the comment above of introducing gradual b12 resonated with me in that getting his body adjusted to lower doses first gives his body time too adjust. I just wondered if tcurrybums had had the same treatment she would not have had the reaction she did and stopped the injection.
Apologies to tcurrybums for talking about you, only trying to help in finding a solution.
Hope your partner can get more injections from Dr and hope he continues to improve. Hope tcurrybums finds a solution within these answers as they can apply to her also.
Most of us on this forum don’t get the right treatment from our doctors hence turn to self injecting.
You are quite right..... I also self inject !
Thankyou for sharing your experience and merry xmas.
Thank you Sallyannl
Hi,
Might be worth joining and talking to PAS who can offer support and information.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS have some useful articles and leaflets
pernicious-anaemia-society....
They have a page for health professionals which you could tell your GP about.
pernicious-anaemia-society....
I am surprised your injections were stopped as PA requires life long treatment.
Did you have an anaphylactic reaction, a severe allergic reaction to the B12?
It is unusual but possible.
There is more than one form of B12 that can be prescribed.
Most UK people on here get injections of a type of B12 called hydroxocobalamin.
There is at least one UK person, think it's clivealive who gets cyanocobalamin injections.
If you had a severe reaction to one type of B12, maybe you could ask your GP about other types of B12.
Many forum members report that their symptoms get worse before they start getting better.
I had a lot of tingling and was told that it was the nerves waking up.
Some forum members have been helped by the person who runs the website B12 Deficiency Info.
If you have had B12 deficiency for a very long time then it could take many weeks for things to start improving.
I had dementia type symptoms such as
memory problems
struggling to get the right words out
doing strange things eg boiling the kettle without water in it
couldn't do mental arithmetic any more
It took many weeks of B12 treatment for symptoms to start getting better.
I often write very long replies but I didn't want to overwhelm you with too much detail.
Please keep asking questions.
Hi Sleepbunny, No problems until after the 3rd injection, then extreme pain in joints/ muscles, my fingers, especially my finger tips were really swollen (i had hands like ET!) & I also got tremors. I will definitely give the info for doctors to him. I am writing a list for him there is no way I will remember it 🤣 Thank you
I had all of those issues when I started on injections and I thought I was dying. Naturally I thought the B12 wasn’t working but by talking to people on here I discovered this was my nerves regenerating and things were oddly worse for a while before they got better. I also had horrendous ataxia and eye problems. In my non medical opinion your GP has done something very dangerous by stopping the injections and I strongly suggest you have the reinstated right away. You should also ask for the reason for your non existent B12 level. The most likely cause is PA. He can do other tests to confirm such as serum gastrin, MMA, homocysteine and serum pepsinogen. These can all help diagnose PA. He cannot unilaterally withdraw your treatment without cause.
Do you have a supportive friend, partner or family member who could join the forum as well?
I have a lot of information I can pass on.
PA can run in families.
Might be worth someone telling your brother's GP that a family member has been diagnosed with PA.
It would be helpful if you could say a bit more about the reaction you had when you were injected.
NHS link that talks about B12 deficiency, easy to read
nhs.uk/conditions/vitamin-b...
The link below is aimed at doctors and uses medical terms.
It mentions some side effects that hydroxocobalamin injections can cause.
BNF Hydroxocobalamin
Thank you, I have passed the info onto my niece on behalf of my brother. I have also asked my son to het tested as he has depression.
Hi again, there are several books you can purchase written by martyn hooper (PAS) and others who have this condition. They really are good, informative in fact I gave one to my previous surgery to educate them.At least with books you can pick them up at any time and read them when you feel you have the energy.
Thank you, I will have a look on Amazon.
Hi,
Has your GP arranged for you to see a haematologist?
The link below explains when a UK GP should refer a patient with B12 deficiency to a haematologist.
cks.nice.org.uk/topics/anae...
If your GP won't refer you to a haematologist, you could ask your GP to write to a local haematologist asking for advice on how to treat you.
I hope a haematologist might know how to treat someone who has had an allergic reaction to B12 injections.
PAS (Pernicious Anaemia Society) might have useful info about allergic reactions to B12 injections.
Might be worth asking GP if you have been checked for
1) an allergy to cobalt
There is cobalt in B12.
2) an allergy to acetic acid
Some B12 for injections has acetic acid in the mix.
If your doctor doesn't know a lot about PA and B12 deficiency, perhaps they would like to read the documents below.
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
BSH Cobalamin and Folate Guidelines (link to complete document)
b-s-h.org.uk/guidelines/gui...
B12 deficiency can have a massive impact on mental health.
b12deficiency.info/mental-h...
Two B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Lots of case studies.
NHS link about Hydroxocobalamin ( type of B12)
Easy to read
nhs.uk/medicines/hydroxocob...
Will do, thank you
The links below are to forum threads where I left very detailed replies.
If you read them, I suggest you take lots of time as there is a lot of information.
Maybe you could get other family members to read the information as well.
Some of it could be upsetting to read.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Have you been referred to an allergy doctor?
The guidelines below say that people who have had a severe allergic reaction should be referred to a specialist drug allergy service.
The guidelines are quite detailed so may be worth getting someone supportive to read through them with you.
NICE guidelines Drug Allergy
Below is BMJ research document (summary only), which confirms that, although there is really NO reliable test and it is symptoms that are important, your levels are non existent and should therefore be treated without further delay to avoid permanent damage.
UKNEQAS guidelines also point out that neurological symptoms should be treated with injections every other day without delay until no further improvement.
bmj.com/content/349/bmj.g5226
I would put this in a letter to the surgery and ask to be taught to self inject if no-one else available to do it. Tracey Witty's B12 website, that Sleepy Bunny has given below, has advice on writing letters and many research papers, etc.
Very Best wishes for urgent treatment Tccurrybums 🤞🤞
As Sally Pacholok says in her book, "Could it be B12? " - "It is up to patients and their families to be assertive" - and from our own family experience as well as seeing how Gps are now behaving, i.e. (stopping their patients' lifesaving injections, discouraging surgery visits, etc), I'd now be inclined to threaten legal action - (their worst fear)
Films and videos about PA and B12 deficiency
PAS conference 2019
pernicious-anaemia-society....
Films about B12 deficiency
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