Hi. Last year during lockdown I started with various symptoms.. in August I finally got an appointment with my doctor and mentioned the 2 that were bothering me most, which was pins and needles and numbness in hands and feet and random stabbing pains all over. I had bloods taken and my B12 was at 140. So I got loading doses in September. By December the symptoms were back and after another appointment they decided I needed b12 injections as I'm on omeprazole, which prevents b12 absorption as I'm sure you know. So I've now had 2 injections 3 months apart.
To the point... one of the other symptoms I was experiencing was speech issues. Big trouble finding words, like they were deleted from my memory... happening most days ..and sometimes coming out with totally the wrong word altogether... ialso stumble over words and get tongue tied easily. When they diagnosed low b12 I read this can cause speech issues so I didn't think much of it. However, now I'm 6 months later having had loading doses plus 2 other doses and I still have this issue. I'm also still getting pins and needles at times - I sleep on my hand but I always have... now I wake up in the night and it's numb...
Pernicious anaemia was ruled out for me I believe when they did bloods but I'm posting here as I'm hoping people have the knowledge to help me.
I've googled and everything I read about these speech problems is suggesting early dementia or brain tumour and it is TERRIFYING me. As I'm actually on injections for b12 I'm struggling to see how it can be caused by that although I am desperately hoping it is...!!
I'm 44 if it matters. I have a history of depression and anxiety... mainly anxiety if you haven't already noticed. I tried today to get a doctor appointment with no luck. I am so scared right now... can anyone help? 🙏
Written by
silliebillie
To view profiles and participate in discussions please or .
Yes. They tested to see if you have Pernicious Anaemia. They tested this by looking for something called Intrinsic Factor antibodies. IF is a protein needed to absorb B12.
The problem is that half of all those with PA test negative for those antibodies.
So a positive result means you do have PA. A negative result means nothing.
Ah! Parietal Cell antibodies aren’t recommended any more because too many people without PA have them. Your negative result means you probably don’t have PA and it’s the PPIs that are causing your deficiency.
Thanks so much! Yes that is what they said... the PPIs 😊I had to fight to get 3 monthly injections... can't see them giving me then any more regularly.. but also my speech problems don't seem to fluctuate.. I had my last injection 4 weeks ago and its the same as ever
It means her gastroenterologist isn't up to date with the latest thinking on PA.
Gastric parietal cell (GPC) antibodies have a low specificity for the presence of pernicious anaemia as, despite being positive in 80% of pernicious anaemia subjects, they are also positive in 10% of normal individuals. Positive GPC antibodies may cause gastric acid achlorhydria and progression to pernicious anaemia may occur. However, a positive GPC antibody test is not definitive for pernicious anaemia (Khan et al, 2009).
Anti-GPC antibody testing for diagnosing pernicious anaemia is not recommended.
That was the only test I got and it was negative My b12 deficiency isn't dietary and I was on no medications .
Definitely an absirbtion problem
Frequent b12 injections is the only thing that's helped ne
That feeling of dementia is scary.
I went to get a plate and really could not remember where they were kept.
I couldn't find words. Short term memory awful . My memory usually relued on by many.
Fortunately all improved very quickly on every other day injections .
I have numerous other symptoms and I think it varies from Person to person what are healed first
Dirsnt really matter why yoh b1e deficient the symptoms are the same. So treat first then ppl at possible causes . You might not even need your medication with enough b12.
Hi!I totally understand your problem and fears but want to reassure you that it is very likely to just be due to the B12 deficiency and you need much (MUCH) more frequent B12 injections until all your symptoms have gone away and then you will need them as often as necessary to keep them away.
It is completely reversible with enough B12 injections for long enough.
I had got so I could barely walk or talk and couldn't remember anything for about 18 months, to the point that I have totally lost two years of my past. I've needed daily injections for nearly 6 years now but have got most of my cognitive function back, despite a range of problems going against me. I have now got to the point where I am able to reduce my frequency of injections. I am a fairly extreme case but I wanted to use it as an example to reassure you that with enough B12 and supporting supplements you can be OK again.
You ought to be on every other day injections until your symptoms go away (usually a couple of weeks, ie 6 injections) and then you will need top-up injections to keep the symptoms away maybe every few weeks. Depending on what is wrong with your digestive system that is causing the need for the omeprazole, you may need slightly more frequent injections than some people because the underlying issue might be causing a B12 deficiency, as well as the omeprazole blocking your absorption.
The next step is trying to persuade your Drs to do the more frequent jabs for you - or possibly getting your own.
Are you under a gastroenterology team? If not, a referral to one may help you more in the longer term too.
For information on actually getting the treatment of more frequent jabs that you need see replies by Sleepybunny and Foggyme.
I will post links to them after this so you can go to their profile by clicking on the link and then look under the heading "replies".
They give masses of information so don't be overwhelmed by it - just take one bit at a time.
The bit that may most persuade your Dr is from the British Standards in Haematology.
Hello 😊. As fbirder says, it seems you need more frequent injections like many of us here do, but unfortunately it won’t be easy to get them unless you can find a very rare GP who is willing to treat symptoms rather than blood results.
I had to give up work due to feeling so unwell & a myriad of symptoms, including, as you say, ‘losing words’ & getting to the middle of a sentence & having no idea what word to say next or even where I was going with it!
It is very scary, but please be reassured that when you get the right frequency of injections, you will start to improve. Some improve very quickly, whilst for others of us, it can take much longer. Unfortunately, many of us have to self inject in order to stay well.
Have a good read of some of the threads on this site. There are some very knowledgable people who offer great advice & support.
Wishing you all the very best as you start your journey towards better health.
Your best long term bet is to rectify the cause - which is likely the ppis - apart from the b12 issue low stomach causes a myriad of other problems potentially - incomplete digestion and room for bad bacterial growth as well as poor absorption of other nutrients. This isn't the right forum to cover digestive issues but typically the cause of problems such as acid reflux is low stomach acid causing digestive issues coupled with dietary issues and incomplete emptying of the stomach. Good luck though...
I had every one of those symptoms. Word finding, slurring of words, thinking I am saying one word in my head and another one comes out, issues editing a sentence, stopping mid-sentence with no clue where I was going and other memory issues. Everything is pretty well gone now. Most went during the loading period.
Once in a while I still stumble through a word a tad or have problems finding one, but on a level which it is probably only noted by me. So do know they can go away. I know it must be scary for you.
I ignored my GP's protocol and went every other day in the beginning - after loading, with self-injecting. I believe that made a difference.
It is quite possible that you simply need more frequent injections.
I also find that a stressful time period seems to exacerbate these type of problems. I notice that I begin to leave entire words out of sentences. and my eyes/brain can't see it on the first read over. It does make me think about stress and needing more injections.
Hope this gives you some comfort around your symptoms.
Be careful about jumping to conclusions about PPI as the cause. I made the same assumption. I discontinued PPI and began taking sublingual. I discontinued injections and three months later I was the sickest I’d ever been in my life. As far as I was concerned, I was cured! Monthly injections are standard maintenance in the US, but many like myself need much more frequent injections to keep symptoms at bay. My primary care told me that although PPI’s do cause issues with B12 absorption it’s unlikely in severe cases with neurological involvement. Everything you are describing sounds like B12 deficiency. I also had a difficult time forming words and even writing. Ask your doctor for weekly injections until there is no further improvement and then the challenge will be to find a maintenance injection schedule that works for you. Good luck! If you don’t get the treatment you need, keep looking until you find a doctor willing to help you.
Hello, like others here the word forgetting, replacing words, stopping mid sentence etc was a significant issue for me until I got more frequent b12 injections. I have PA. I was also in PPIs which had been prescribed and were depleting my b12 further. However since not mentioned by others I want to point out a few things, Iron deficiency can also cause similar symptoms of forgetting words and is sometimes linked to a b12 deficiency so I would ask for your iron to be checked, In my case investigation revealed that I had low stomach acid not high and omeprazole was definitely not helping. Changing my diet helped along with increased b12 injections and I no longer take Ppi. Dementia is scary but your gp can do an easy test to rule it out and reassure you. I took. I’ve when my b12 was very low and we had a good laugh about some of my answers but she was able to reassure me I didn’t have early onset dementia, Also finally although PA has many symptoms and everyone is different, don’t always rule out that there could be other things having an impact. A hiatus hernia was adding to my digestive problems and peri menopause can have similar symptoms as well as thyroid issues so worth getting further tests too.
However, like others here my symptoms of word forgetting - it’s called aphasia I think - only got better when I moved to injections every 4 weeks, and is now often the first sign for my family to tell me I need my injection!
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test but sadly some UK Gps may be unaware of the possibility of Antibody Negative PA.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
B12 Deficiency Info website
Local Guidelines
Have you found out the local guidelines on B12 deficiency that are being used in your area of UK?
Each CCG/Health Board/NHS Hospital trust will have their own local guidelines on management of B12 deficiency.
Sometimes these local guidelines are not very helpful so worth knowing what you're up against. See blog post below.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date, See BNF link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
The word confusion used to really bother me. Tomato and strawberry got confused, as did cucumber and cauliflower. It doesn't happen so much now and is slowly getting better, but I'm sure I come across as the village idiot sometimes, especially when I get halfway through a sentence and just can't find the right word 🤣
Speech problems and memory loss or brain fogare common symptoms of B12 deficiency or P.A so don’t worry it most likely is that and it can be easily treated although can take a while to get everything better again. There’s no certain test to rule out P.A, it’s only 50% accurate.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Memory Problems, tingling hands and loss of sensation in finger tips and toes
Borderline B12 Deficiency with neurological problems
B12 supplements or B12 shots?
New here and looking for advice/reassurance on b12 injections...
