I am very concerned re my husbands B12 treatment. After low private blood tests because of neuropathy and word finding issues Gp tested for PA and late onset coeliac. Gastroscopy showed extensive damage to gut and gluten free diet now in place. B12 injections were given once a week for 8 weeks. I asked if he could have every other day as advised by NICE and was told g astrologist recommended weekly. There was some improvement seen by podiatrist after 8 weeks. Some feeling in parts of foot but not all. Now nearly 3 months since last injection and memory snd neuropathy much worse. Quoted NIcE guidelines and asked for EOD to improve again. Gp says maybe dementia and needs to do other tests first and wait for next injection on Dec 8. I think this wait is unnecessary as improvements were seen before but not enough. He says B12 looks fine. What can we do?
worsening neurological symptoms B12 o... - Pernicious Anaemi...
worsening neurological symptoms B12 only 3 monthly
Hi,
I'm surprised that his GP won't consider more frequent injections as B12 deficiency can mimic dementia.
What were the results of the tests for PA?
I'm guessing he had an Intrinsic Factor Antibody (IFA or IFAb) test.
A negative result in this does not rule out PA but some doctors may not know this.
Testing for PA
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines (UK document) which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
PAS membership is separate to membership of this forum.
You do not need a confirmed diagnosis of PA to join PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
Support groups can be a good place to swap information.
Coeliac disease
Has the gastro enterologist confirmed coeliac disease?
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
cks.nice.org.uk/topics/coel...
More info on Coeliac UK website
I'm going to add more to this thread so check back later.
I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.
many thanks he tested negative for PA and positive for coeliac so malabsorption. I explained how much better he was on weekly after about the 5 th week but needed more frequent as guidelines. He says wait and see. I dont think we should. Thank you I will read all those links.
Some UK forum members treat themselves as a last resort if NHS treatment is not enough.
Some get extra injections from UK private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people and some turn to self injection (SI) using injectable B12 from Europe.
Petition
There is currently a petition to get injectable B12 available over the counter in UK
change.org/p/dr-june-raine-...
Tracey Witty of B12 Info.com (formerly B12 Deficiency Info) has campaigned on this issue for 8 years.
b12deficiency.info/eight-lo...
Its vital to get adequate treatment. Inadequate treatment for B12 deficiency increases the risk of developing permanent neurological damage.
There have been forum members who had SACD, sub acute combined degeneration of the spinal cord from delayed diagnosis/treatment of B12 deficiency.
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Make sure his folate and iron levels have been checked and make sure you see the actual results.
Your husband's GP has mentioned the possibility of dementia.
If there is a risk that your husband may lose the capacity to act for himself in the future, he may want to look into making Powers of Attorney.
Symptoms diary
Might be worth keeping a daily or weekly symptoms diary as could be useful evidence of improvement or deterioration in symptoms to show doctors. Maybe pick up to ten symptoms to monitor and note any treatment given.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link above has letter templates covering a variety of situations linked to B12 deficiency.
I think Point 1, about under treatment of B12 deficiency with neuro symptoms might be relevant.
1) Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
2) Keep letters as brief, to the point and polite. Harder to ignore a letter in my opinion.
3) 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 useful if there is a need for a formal complaint in the future.
4) My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are a record that an issue has been raised. I included a request in letters that a copy of letter was filed with medical notes. Useful to have a paper trail in case there is a need for a formal complaint. Keep copies of any letters sent or received.
5) Letters could contain some of the following
relevant test results
date of diagnosis
relevant family/personal medical history
quotes from UK B12 documents
requests for referrals to relevant specialists
The shorter the letter, the more likely the GP is to read it in my opinion.
NHS Complaints
patients-association.org.uk...
Care Opinion website
People can leave reviews of health experiences and sometimes GP surgeries/hospitals etc respond. Reviews can be anonymous.
Local MP or devolved representative may be worth talking to if struggling to get adequate treatment.
A few people go to the Press/other media if unhappy with treatment.
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
Link to a thread on Patient Safety I started recently, it has lots of useful links for people who've had difficult health experiences.
"He says B12 looks fine"
I think GPs sometimes pay too much attention to numbers and test results and not enough to symptoms.
Do you and your husband check his blood test results?
I learnt to always check results myself after being told everything was normal/no action several times and then finding abnormal and borderline results when I checked myself.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
Has your husband got results for folate, ferritin (and other iron tests) and Vitamin D?
Forum members often report deficiencies in these.
It's also common for people on this forum to have thyroid issues.
Might be worth posting any thyroid results on Thyroid UK forum on Health Unlocked.
Some UK B12 articles/documents
Worth reading thoroughly as may have useful quotes to put in letters to GP/practice manager etc.
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines (aimed at health professionals)
b-s-h.org.uk/guidelines/gui...
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (lots of pages).
Local B12 deficiency guidelines
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board.
Try a search online or submit a FOI (freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines are being used locally and for a link to or copy of them.
Blog post below is about a UK area with unhelpful B12 deficiency guidelines
b12deficiency.info/gloucest...
Some health professionals have wrong ideas about B12 deficiency
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
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 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
This thread was started by someone with neurological symptoms.
Yes, you really do need every-other-day injections to rid your husband of the dementia and confusion-like symptoms. The neuropathy will begin to improve too.
I can only say this works anecdotally. But neurological symptoms and clear deficiency require every other day injections until no further improvement in symptoms. Those are the guidelines to be followed. They're there for a reason. But of course your GP 'won't know much about B12' because none of them do. So they will assume the gastro will know what they're doing.
It's worth pushing them for every other day and asking for a trial. If they don't work, then the GP can investigate other causes. If not, high dose sublingual could work for him. You can find strengths of around 3,000 mcg and there is no limit, i.e. you can't overdose.
Or, self-injection is most likely the best route to be honest. he will need much more than the gastro recommends because B12 affects so much of the body including how the brain and nerves function. When there's a leak in the gut, it's simply not enough to have once a week and expect it to repair. Sadly, the medical system isn't trained in nutrition and B12 falls under that bracket.
I would try to make one final case to the GP for every other day injections as a 'trial' to see if he improves. Otherwise, self-injection EOD may be the way to go to give him the best chance to recover.
Sleepybunny thank you for all of this. I am going to write to Gp and see if we can get proper loading doses. I initiated the testing for pa by sending medichecks results for low folate and low B12 taken during and after lockdown. The initial letter prompted a response with gp repeating bloods and test was neg for PA positive for coeliac. He stated need for B12 injections but wouldnt start until seen a gastroenterologist. Said waiting list was 6 months! Went privately in 10 days had gastroscopy severe damage now totally gluten free aware cross contamination etc. Consultant requested once a week inj for 8 weeks then 3 monthly. I questioned this as neurological involvement. Repeated calls to Gp practice to arrange B12 as per consultant advice told no appts available given date for 3 months ahead. I made a complaint after 4 weeks and said neurological sympyoms were worse. Inj started next day. No improvement until inj 6. That improvement is now reversing and is worse than initially we are 9 days off first monthly injection. Talking on phone has only prompted more blood tests and tests for dementia (not sure what). No F2F available four wks for telephone appt. I am going to use the links to write again today. We have access to all results and all coeliac recommended tests and actions have been done. We have POA for health and finance ready to go. Many thanks for your time and trouble.
Hi again,
"had gastroscopy severe damage "
Just wondered if you had access to the gastro specialist's report.
Have a look to see if it mentions "Autoimmune metaplastic atrophic gastritis (AMAG)"
This is a type of gastritis associated with PA (Pernicious Anaemia).
There have been forum members who have both PA and Coeliac disease.
Both are auto immune conditions and having one auto immune condition can increase the chances of developing others.
"test was neg for PA"
Might be worth asking GP in a letter or conversation if it's possible that your husband could also have Antibody Negative PA.
If GP says there's no such thing as Antibody Negative PA, maybe you could put this diagnostic flowchart under their nose.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
Have you managed to find the local B12 deficiency guidelines for your ICB or Health Board yet?
Your husband's GP is likely to refer to these for diagnosis/treatment.
I think people should be careful with their privacy but if you don't mind naming your ICB or Health Board on this thread, a forum member might be able to help you find them.
Threads from HU can appear on NHS website.
You may want to change the setting of your post to a more private one where only visitors to this forum can see it.
To do this
1) Go to original post, click More then click Edit.
2) Scroll down post to Share, click Community Only then click Post.
Sorry to hear this. I have a diagnosed/ confirmed functional B12 deficiency (I have a problem with transport or cellular access to B12), and am on 3-monthly injections; my symptoms return after 5 days. GP has refused more frequent injections, so I am going to a private anaemia clinic in Cambridge next week (and am travelling from London to do this) - the doctor there is willing to help with private prescriptions / self-injecting. I can PM the details if you think it would help?
'B12 looks fine' raises red flags for me. Once you have a B12 problem the 'normal recommended ' levels of B12 fly out the window. Most us on this forum need to maintain very high levels of B12 to see improvements. Personally I need 1700 +. Others need 2000+.
I agree with the others. It is very important to get your husband the right treatment before he has any permanent nerve damage. From what you say I don't think your doctor is going to be much help. Which is the case for most of us on this forum. I'm afraid that you will be yet another person who needs to take control of the situation yourself. Luckily you have found this forum which can help you.
Go back to loading doses however you can, even if that means self-injection.
Then go every other day until no further improvement.
Check his thyroid just in case, as brain fog can play out there
I had memory, slurring and word-finding issues that I gladly told my GP about. I had just looked after my mother with dementia for two decades, the last three years 24/7. So I thought "Here I go".
The memory test was delayed so that it happened to come after loading. I scored 30/30 - I believe you only need 26/30 to pass.
My doctor pretty well rolled her eyes. But that is what proper loading and me quietly going every other day on my own did for me.
It is horrifying to think that my mother could have simply needed b12 injections, as like me she also started her dementia journey with gait changes, foot drops and falls.There are documented stories of misdiagnosis happening and caught after decades or with autopsies. It is horrifying to think about.
This is your life. Your husband's life. Not theirs, if they make the mistake. Fight for what you need but not to the point of not getting what you need in a timely manner. I went rogue almost from day one, and have zero regrets.
It is late here, so I apologize if it was not your post (I have read back "levels look fine" is indeed an issue and probable lack of understanding. ) Don't let them keep testing. It means nothing & causes issues in care, that can be detrimental.
On testing -
stichtingb12tekort.nl/engli...
A great overview -
It is very common for doctors to be very poorly educated in B12 deficiency, and it is also common for them to deny treatment or undertreat, with disregard fir worsening symptoms .I fought for treatment according to NICE guidance with objective accounts of symptoms nd scientific references, but the doctors still let me down, so I now buy my own from Germany and self-inject every other dy to keep symptoms at bay.
Buy Dr Chandy's book on B12.
Watch the film Sally Pacholok on youtube.
I'm guessing we can't mention other FB groups, but look yhrough the UK B12 groups til you find one that has info on sourcing your own supplies.
Sadly my doctor, and many others, would rather see a worsening quality of life than provide treatment. Very sad, but true. Im guessing its because theyve been wring so long tht they find it too hard to now do the right thing.
Lists of B12 books and films
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK BNF treatment info is out of date in above book. See BNF hydroxocobalamin link in one of my replies.
I gave a copy of above book to one set of GPs.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
The next book mentions dementia in one chapter.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Some of these books may be available from your local library service.
Films and videos about PA and B12 deficiency
PAS conferences
pernicious-anaemia-society....
Films about B12 deficiency
I really hope you find a way for your husband to get the treatment he needs.
I watched my mother fade away into dementia and knowing what I know now, I'm convinced she had B12 deficiency.
I started developing dementia type symptoms when I was in my late 30s but these disappeared when I started B12 treatment.
Misdiagnosis of B12 deficiency as other conditions (including dementia)
b12deficiency.info/misdiagn...
If you search online for "B12 deficiency dementia" it will show some research articles that might be of interest.
Maybe try pushing for weekly or monthly injections. Your GP might be more prepared to agree to that. My GP said that they only use every other day injections in a hospital setting when a person’s neuropathy is so bad that they can’t walk.
Hello, sorry for your husband's issues, how old is he? I am 69 years old and I have PA, def of folic acid, and low B12 value. One day while eating lunch, I had a problem catching my breath. Then I began to start crying. I just suddenly lost the ability to control my emotions and began crying very hard. I was crying as though someone I loved just died. I've since learned that Vit. B12 deficiency will mess with your emotions.
I went to the doctor for an annual physical and at the end of the visit, the Physician's Assistant asked if I had any other issues. So I said well, my eyes seem to be burning a lot lately. She called in the doctor who looked at me and said you have allergies and told me to buy some eye drops. Later I read in the books I mention below and from the internet as well, that a deficiency in Vit. B12 will cause your eyes to burn and makes it hard to drive at night. Also, I've since learned that B12 def. will also cause cavities and cause your teeth to go bad or fall out. I've experienced almost all of those.
I've been taking Vit. B12 shots once per week x 4 weeks in a row now, but have not had my labs redone since last time. I will tell you this; my Dr. said I had low folic acid, so prescribed folic acid tablets once daily, but did not mention that caffeine will keep you from absorbing folic acid (I drank coffee each morning -did that is), also did not mention that folic acid tablets without also getting Vit. B12 is useless. Also, when I have labs done, you must "INSIST" that they test for "ALL" the vitamin Bs, not just for B12. I'm gonna have my labs done every 3 months or so at least until my values improved. And if 500 is a good value for vitamin B12, and someone is at 501 that is a definite warning sign.
Now, I make sure they test me for every vitamin there is. You can be sure that the one you do not check for may be the culprit. I had one doctor tell me my problem was that someone had put a curse on me. Anyway, doctors know as much about vitamins and their effects on our health as you or I do. Please if you do not have it try to get your hands on these two books. "Could it Be B12" an Epidemic of Misdiagnoses (2nd edition), by Sally M. Pacholok and Jeffrey J. Stuart, and also "What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency" by Martyn Hooper. These two books have helped me a lot. My prayers are with you.
It is likely the doctor didnt mention that caffeine will stop you absorbing folic acid because it is not true.
"A study on the effect of caffeine on homocysteine levels published in "The American Journal of Clinical Nutrition" found that caffeine intakes of up to 870 milligrams per day did not affect blood levels of folate, vitamin B-6 and vitamin B-12. This is about the amount of caffeine in 8 or 9 cups of coffee."
from : livestrong.com/article/5483...
The referenced study : academic.oup.com/ajcn/artic...
Please go ahead and enjoy your coffee. It presents no risk to your folate status at reasonable intakes. In fact 2-3 cups of coffee a day may even have health benefits.
B12 deficiency can cause problems with neurotransmitter production which can indeed affect mood due to lack of Serotinin, Dopamine etc.
OK, sure, one study says green another says yellow, one study says white and another says black. What I mean is studies and statistics are made to be rubbed the wrong way or to be made to show whatever results the ones doing the study wants. One thing I do know is this; Caffeine, (coffee tea, etc.) are diuretics, which make you pee, which affects B vitamins as they are water-soluble. Of course, anyone is going to pee whether they have any caffeine or not, but caffeine is going to cause more peeing and thus more loss of the absorption of the B vitamin you've taken.
Am I completely right in what I'm saying, maybe or maybe not, but I am figuring out a lot of this on my own. I am not a doctor, but I know my doctor prescribed an over-the-counter bottle of plain eye drops for my eyes when I told her that my eyes burned, especially at night when driving and she had already JUST prescribed folic acid tablets to me for a deficiency in folic acid. Later that same evening I read that one of the symptoms of folic acid deficiency is low vitamin B12. I have other symptoms of a vitamin B12 deficiency too, but I'm learning.
So, if I'm right I may be able to help someone, but if I'm wrong then lead me to know the truth. I'm open to whatever I can learn. I will still give advice to someone who I feel is reaching out for help, and pray that I have managed to help them if even in a small way, so help me God. Thanks
I did find a reference for folic acid deficiency causing falsely low levels of B12:
"It is important to note that as many as one third of patients with folate deficiency will have low serum Cbl levels (some with levels <74 pmol/L [100 pg/mL]) that return to normal with folate therapy. The mechanism for reduced serum Cbl levels in some folate-deficient patients is poorly understood; this finding is less frequent in alcoholic populations because of the tendency of liver disease to increase serum Cbl levels. If after administration of folate low serum Cbl levels do not return to normal, concurrent Cbl deficiency may be present."
jamanetwork.com/journals/ja...
With regards to your point about scientific studies more generally, of course there is always the possibility of mistakes, researcher bias, fraud or massaging of results in any scientific study. Some types of studies carry more evidential weight than others. There are studies that either contradict or seem to contradict each other.
But this shouldnt lead us to ignore apriori and en masse any and all scientific analysis, studies or results. That would completely remove our ability to learn from decades of valuable nutritional/medical research. This isn't about finding "the truth" but coming to a conclusion that bests fits the available evidence at this time. Further studies or better evidence might always lead to an update or revision of that conclusion.
This video explains how to cut through the confusion: m.youtube.com/watch?v=nJPcL...
Finally on the diuretic effect, one cross-sectional study conclusion was that:
"Conclusions: Coffee consumption was associated with reduced circulating B-vitamin concentrations. The observed effect profiles indicated that coffee consumption preferentially affected the upper, but not the lower, part of the B-vitamin concentration distributions. We hypothesize that coffee consumption may increase the loss of surplus B-vitamins by excretion in urine. "
From : academic.oup.com/clinchem/a...
Notice that their hypothesis is that they were seeing a loss only of "surplus" B-vitamins.
From what I can see on the balance of the available evidence, it does not seem likely that moderate coffee consumption of 1-3 cups a day will have any adverse effects on folate.
Thank you all. My letter to Gp produced the response that more B12 could be dangerous. I pointed him in the direction of research to no avail. I got copies of the results and B12 was below top of scale at 700. I said gastroenterologist advised keeping it well above the scale. Response was he couldn’t possibly give more B12 without consultant advice. By a miracle managed a phone call to that consultant. He has emailed for eight weekly injections to start immediately then 2 monthly. He also can refer us privately to learn to self inject if Gp wont play ball. Thanks everyone Im feeling hopeful! Hope you all find a way forward.
"more B12 could be dangerous." Based on what evidence? Where do they pull this stuff from? As a medical professional even if they're completely ignorant of a topic, they should at least do some basic research to check whether it could be true before they say something like that. It takes < 2 mins to check any trusted nutritional or medical source to discover that any claim that B12 could be dangerous or toxic is absolute nonsense. Sorry you have to deal with this Helsan.
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Are these neurological symptoms?
