I may well be completely off mark here, but my dad (79 years) has deteriorated significantly over the last 6-9 months. He was a big long distance walker prior to this and very sharp and over the last 6-9 months has developed pelvic discomfort (all investigated and not thought to be prostate etc.), pins and needles in hands and feet, a wide based gait (he struggles to know where he is putting his feet, but he still walks as much as possible. He has got a lot slower at walking and gets anxious easily (never used to) and is struggling more with concentration than before, and he is finding it difficult to drive now.
Am in the middle of the Could it be B12 book, as I am insufficient currently and wondered about B12 and pernicious anaemia (my dad seems to tick off a lot of the symptoms on the pernicious anaemia website, but appreciate there are lots of other things that can also cause them)
However his bloods have come back as follows:
Hb 135 g/L (130 - 180)
MCV 89.3 fl (80-100)
MCH 31.3 pg (27-32) g/L
MCHC 351 g/L (320 - 360)
B12 319 ng/L (187 - 883)
Folate 4.0 microgrammes/L (3.1 - 20.5)
I discussed with the GP re starting 1000 microgrammes methycobalamin supplements as a trial, and although it was our suggestion and not the GP's, he did say it would be unlikely to harm. Assume we need to supplement folate also.
He is being investigated further with MRI brain (spine already done) and nerve conduction studies and we will be seeing a neurologist also.
We are scratching our heads a bit, but value any wisdom you may be able to share - even if only to tell me I am clutching at straws (obviously if dad is to have anything, I would really love it to be treatable!).
Thanks very much in advance!
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kreamtee
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It must be so worrying having an elderly parent suddenly deteriorate like that. He could be experiencing B12D. A lot of medical sites dealing with the elderly say that they need higher levels of B12. I remember reading somewhere that the B12 levels in the elderly should be over 500. When you get older your body struggles to get nutrients from food. B12 isn't toxic so it won't hurt to try giving him B12. I suggest you do as I do. Dilute sublingual B12 in water and get your Dad to drink it throughout the day. Diluted sublingual B12 is more likely to absorbed than pills. And taking the B12 in water with help with his water intake - as you get older you need to drink more water.
I buy very high strength B12 liquid (5000 mcg) and take 15,000 mcg daily (about 3 teat pipettes). You can buy it from Amazon etc.
Thanks so much for replying and the advice. B12 is such a contentious subject isn't it. I certainly don't want to make things any worse for my dad, but if there is a potential to help then I would like to....
And yes, it is definitely a very worrying time - it is the uncertainty I think more than anything else, and watching a loved one change so quickly is very sad.
But will remain positive that this is a journey - and we will get there hopefully!
I'm afraid that most doctors don't want to know about the elderly. They dismiss B12D symptoms as just old age. They don't realise that probably most 'old age' symptoms are due to low levels of B12. One of my elderly relations has become very unsteady on his feet with a strange gait. His doctor just told him to drink more water. No tests were given. Sadly my relation is old school and completely trusts his doctor. It's a disgrace.
Looking into my crystal ball I predict that you will get no help from your doctor. Luckily there is a wealth of information and help on this forum.
Am so glad that dad seems to have a very lovely GP... I suppose he is looking at figures and thinking there isn't a problem at moment with B12.
Yes, I think it is really tricky with things like this (and thyroid disease! I have Hashimoto's), and finding a sensitive and open clinical ear - understanding all their pressures.
Thanks again for your reply and great this forum is here!
Personally I would pursue additional testing before any supplementing. His b12 is trending low and he might be functionally deficient already. Active b12, MMA, homocysteine, and especially intrinsic factor antibodies.
And as the good book says, PA tends to run in families so if you are both deficient, it hints at PA.
Which means tablets may not be effective. It sounds like he might already have neurological involvement so injections are the best choice. As you will also read in the book & in the literature, one can very well have neurological damage without any red blood cell distortions (Hb, MCV, MCHC, RDW etc). In fact hematological changes may be a late-stage finding.
Folate is also low but best to wait to start b12 first, as there is some evidence in the literature that taking folate without b12 can accelerate nerve damage.
Yeah testing for PA privately is prohibitively expensive Can you try to at least push for GP to test intrinsic factor antibodies? You could use the argument that your GP is investigating you for PA as well... Privately i think it's about 130 quid via Medichecks including the blood draw.
Just my own hypothesis but I think IFAb is more likely to be picked as you get older. GPs tends to think only people over 60 can have PA, and I suspect in some people, IF is more active as you get older, whatever the cause. And it's not uncommon to hear people getting several negative results before getting a positive one. Personal anecdote - I've had 4 negative IFAb tests in the 6 years since I developed severe neurological issues nearly overnight, from B12D, and similar for my sister. Not one positive result. My mother, near 70, recently had some mild symptoms. IFab test, positive! Go figure.
Yes, I will try re IFAB and GP. Am awaiting my IFAB too! Really interesting to hear your story and that if your family (and sorry to hear)
Will talk to dad about the private options too - looks like Medichecks do the whole gambit for £280 (eek!
Have Hashimoto's and so I know B12 deficiency is common with Hashi and the lovely autoimmune link makes PA more likely. My B12 was 111 pmol/l in August (lower bound for normal range is 133) and now is 100 pmol/l. They say this is the "indeterminate range", but I do have neuro symptoms - in fact tingling in hands has just woken me up. I started methycobalamin 1000mcg daily on Monday with GP blessing after bloods (no MMA (GP couldn't order) or homocysteine though)... Wondering if should have gone for cyanocobalamin, but think will see how goes and if no improvement may talk to GP re injections (which seem to be in guidelines for people in my range with symptoms). Does this sound reasonable? Sorry - I should probably start a new chain… ! 😊
Thank you for all your help - really good of you to reply. 😊
Oh my, that's not an intermediate range, that's way below range 🤦♀️ No need for mma or homocysteine to show the very obvious deficiency. Injections at this point regardless of whether or not it's PA, as you have neuro symptoms and low B12.
Indeed might be worth adding a new post. I can't access UK guidelines, foreign IP addresses are blocked, so someone else will have to comment wher NICE or BCSH guidelines say anything about your particular scenario. I hope IFab comes back soon!
Methyl is fine to take as long as you don't react to it - some people have issues tolerating methyl forms. But you can add in cyano, hydroxo, or adeno tablets as well. As i keep forgetting and others keep reminding, methyl does not convert to the 'adeno' form, whereas the the others do, so you can top up with one of those. At this point, tablets won't do any harm, but may not make much of a difference either. Make sire to take at least 1000 mcg.
You can start a symptoms log/diary to note doses and changes in symptoms. It's useful, especially in the early days.
jade_s "methyl does not convert to the 'adeno' form, whereas the the others do"
hmm but they all convert? some forms could convert with less efficiency in people with genetic defects in B12 metabolism (rarity unknown) ... but all B12 forms are broken down to the base cobalamin molecule, before being converted to whichever active forms are needed.
kreamtee , 111 is very low ... and with neuro symptoms, please look to injections, the situation is very serious and requires prompt and adequate treatment.
Thank you. I realized today i had been making this comment without double checking it and after reading some papers realized it was wrong, but i haven't had a chance to correct it. So i appreciate your correction. Indeed they all convert to adeno, and i also read about the possible genetic inefficiency but haven't read further on that yet.
Thanks very much for the clarification and the backup re my low B12. It is tricky isn't it, as it seems that different labs create different reference ranges, and then add these "indeterminate" ranges etc. I guess that it is why the symptoms are so important. Hopefully IFAB back this week coming and will speak to GP about injections (even if IFAB negative).
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
Some health professionals have wrong ideas about B12 deficiency
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
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.
From personal experience, it is possible to have severe B12 deficiency with normal range serum B12. I had dementia type symptoms and many other neuro symptoms including spinal symptoms with serum B12 results from 300 - 500 ng/L. I had had a below range serum B12 result in past.
UK guidelines (NICE CKS and BSH links) suggest that people who are symptomatic for B12 deficiency should be treated even if serum (total) b12 is within normal range.
I'd want to know why the NHS is not treating him....
What has the GP said about his folate, which is only just within the range?
In a person with both folate and B12 deficiencies, B12 treatment would be started first.
Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
There are some medicines/drugs that have been associated in some studies with low B12 levels and some with low folate levels eg metformin, a diabetes drug, PPI drugs, some anti-epileptic drugs and others.
Any concerns about medication should always be discussed with a doctor. Local pharmacist may also be useful.
Internal parasite infection may lead to low b12 levels eg fish tapeworm.
If he's ever lived or stayed in an area where internal parasites are common this may be worth mentioning to GP or if he eats raw or uncooked fish.
One clue that there might be an internal parasite is an increase in eosinophils, a type of white blood cell. Eosinophil results can be seen in Full Blood Count results.
Low b12 (and low folate) may lead to enlarged red blood cells (macrocytosis).
Low iron may lead to smaller red blood cells (microcytosis).
A person who has B12 deficiency ( and/or folate defic) with iron deficiency may appear to have normal sized red blood cells on Full Blood Count (FBC) as the effect of iron deficiency can mask the effects of B12 deficiency (and/or folate defic) .
Things can get quite complex if person has all three: B12, folate and iron deficiencies.
Many on this forum report folate, iron and Vit D deficiencies as well as B12 deficiency.
Has his Vit D been tested?
Thyroid
I suggest you put any thyroid results along with an outline of his story on Thyroid UK forum on Health Unlocked. Many forum members here also have thyroid issues.
In UK, GPs often only test TSH which won't give a full picture of thyroid function.
There are other thyroid tests that GP or a specialist can order.
I've written this to help your dad but I hope some of the info will help you.
A negative result in IFA test does not rule out PA. See diagnostic flowchart from BSH Cobalamin and Folate guidelines.
Your GP may not be aware that it is possible to have Antibody Negative PA.
PA can run in families, so can Coeliac disease and there are other auto immune conditions that can be associated with B12 deficiency eg Crohn's disease.
Please pass the info on to others you think might have B12 deficiency.
I suffered for years from unrecognised and untreated B12 deficiency but improved once I got treatment.
Thanks so much for this and for sharing your personal experience.
Have a bit of a plan - have found a urinary MMA that Regenerus labs do, and IFAB antibodies can be done through superdrug doctor and think we will try to purchase these privately for dad.
I think they don't think treatment necessary as B12 "normal", no anaemia, and would have expected something given the symptoms (however, I can see that this is not always the case!)
Yes - folate is low too and thanks for the advice - I know not to start anything with folate until sorted B12.
We have a referral to the neurologist, and definitely "on it" with following up MRI and nerve conduction study referrals etc.
He has negative coeliac screen, TSH normal (am also a member of the fabulous thyroid group as have Hashimoto's - don't think dad has any hypo/hyperthyroid symptoms at moment). His serum ferritin is amazing (much much higher than mine!), Vit D is low so we will be supplementing, He has no indigestion and don't think the internal parasites should be an issue. He is also on no medication at all at moment - and is usually fit and well with no other conditions. A really useful checklist - thank you!
Sadly we seem to be having a bit of autoimmune bad luck in our family - my son was diagnosed with Type 1 diabetes last year, and I was diagnosed with Hashimoto's this year, so I wouldn't be surprised if dad does have something autoimmune going on.
Thanks SO much for your help and advice - it can feel a very lonely place when you have medical problems in the family. Also thanks for the tip re ICBs - I did have a look but couldn't find a local guideline, but I have my local guideline which is helpful also.
I usually suggest people protect their privacy but if you both don't mind people knowing his ICB/Health board then if you mention it on this thread, forum members might be able to help you find the local B12 deficiency guidelines for his area.
Posts from this forum can appear on other websites eg NHS website.
You may want to change the setting of the post to a more private setting 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.
If this has worked, next time you log in to this thread, you'll see the word private in webpage address. I think Admins can help if there are any difficulties.
"I think they don't think treatment necessary as B12 "normal", no anaemia, and would have expected something given the symptoms"
You are right to expect that he should have some treatment.
50% of people with B12 deficiency do not have anaemia.
See links below about the wrong ideas health professionals can have about B12 deficiency.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have
If you have the time and energy, I suggest you read the UK B12 documents I've linked to in other posts eg NICE CKS, BSH and BNF and look for useful quotes to include in letters to or to point out in conversations with GP.
NHS link about B12 deficiency and Folate deficiency
"Some of these symptoms can also happen in people who have a vitamin B12 deficiency but have not developed anaemia."
If I have time I'll try to post some quotes that might be relevant to you and your dad.
Age prejudice
I sometimes thinks that the health concerns of older people are too often put down to "old age" when there could be a treatable condition. I am pleased that your dad has you looking out for him.
The UK blogs below have stories about older people with B12 deficiency from PA and other causes. Some of the stories are sad to read.
There are stories about older people with B12 deficiency in the books I mentioned in my second post.
I watched my mum fade away into dementia and I suspect that she had undiagnosed B12 deficiency.
I'm glad your Dad has a kind GP but would also add that if his GP is really keen to help then the GP will do some homework on B12 deficiency.
Maybe you could lend a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" to GP or suggest his GP looks at the PAS page for health professionals.
Copies of Martyn Hooper's books and Sally Pacholok's book "Could it be B12?" might be available from your library service.
Two other books worth reading (in my opinion)
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
My understanding (I'm not a health professional) given your Dad's symptoms is that he should be on every other day loading injections for as long as symptoms continue to improve followed by maintenance injections every 2 months.
This is the BNF treatment pattern for those with b12 deficiency with "neurological involvement". See BNF hydroxocobalamin link. GP can also find this info in their BNF book Chapter 9 Section 1 sub section 2.
Are there any blood relatives who have been diagnosed with PA, Coeliac or other gut conditions that could lead to B12 deficiency? Make sure his GP knows if there are.
I'm assuming your Dad still has capacity to act for himself. He may want to look into Power of Attorney for the future.
Thanks Sleepybunny - but no problem as can access the guidelines another way (and have seen lots of them and read all the national documents etc . I discussed a range of options with dad including doing MMA pand IFAB privately first, but he was keen to start methycobalamin supplements at 1000mcg per day sublingually just to see if any improvement and take that to the doctors if there is improvement as a means of perhaps asking for injections. I recognise the supplements may not work for him and injections would, but we will continue to pursue. We will do IFAB when he tests his blood again as I know this won't be affected by supplements. Hopefully in time we will also understand if there is something else going on too.
Thanks so much for your help though - it has been really invaluable!
I've added a few details to my reply above that might be relevant.
GPs can be reluctant to accept the results of private blood tests but if the rpivate results show something significant it should be enough to nudge GP into ordering the same tests on NHS.
Many on this forum resort to treating themselves if NHS treatment is not enough.
There are forum threads about self injection.
There is currently a petition to get injectable B12 available over the counter in UK.
Apologies for bombarding you but I forgot to say that I urge UK forum members to find out what's in their local b12 deficiency guidelines.
Search online for local B12 deficiency guidelines for his ICB (Integrated care Board) or Health Board. You could also search forum posts or submit a FOI (Freedom of Information) request to ICB website, asking for a link to or copy of local b12 deficiency guidelines.
"he was keen to start methycobalamin supplements at 1000mcg per day sublingually just to see if any improvement and take that to the doctors if there is improvement as a means of perhaps asking for injections"
Probably worth him keeping a daily symptoms diary, maybe tracking up to ten symptoms. He could score the severity of each symptom each day and note date and amount of any treatment. A diary could be useful evidence of improvement or deterioration in symptoms to show GP or specialist.
Treating without a confirmed diagnosis can sometimes make it harder to get a diagnosis.
See link about "What to do next if B12 deficiency is suspected".
I didn't really mention before that B12 deficiency can have a massive effect on mental health. Folate deficiency can also affect mental health.
"He is being investigated further with MRI brain (spine already done) "
If NHS remain unhelpful about giving treatment, it may be worth mentioning to doctors that inadequate treatment can increase the risk of permanent neurological damage including spinal cord damage (SACD - sub acute combined degeneration of the spinal cord). See PAS article on SACD.
May be worth him accessing his medical records to find out what was in the spinal MRI.
Bear in mind that research articles are aimed at researchers and health professionals and may contain upsetting details.
Radiopedia.org has a good brief article on SACD.
If SACD is found it needs prompt and aggressive treatment.
B12 deficiency and the brain
B12 deficiency can lead to white matter lesions in the brain.
Search online for " B12 deficiency white matter lesions" if interested.
Misdiagnoses
May be worth the family looking into common misdiagnoses of B12 deficiency. It's often diagnosed as something else. There are people who have been diagnosed with MS (Multiple Sclerosis) when it was B12 deficiency.
Thanks Sleepybunny . Yes, discussed the issues about diagnosis difficulties if he starts Methycobalamin now, and we jointly ummed and ahhed, but ultimately he decided to go for trialling supplements (it does make me feel uncomy too). Diary sounds like a great idea! And thanks for the extra links will look at. His MRI of spine was normal so very much hoping not SACD. Will be keeping a close eye on him for sure and am very much hoping we get to the bottom of it all 🤞.
I know what you mean... Will check. Also just read that IFAB antibodies can give a false positive if you have had B12 recently. Oh dear. Think we will have to go on symptom improvement/not and take it from there! 😊
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Can you try to at least push for GP to test intrinsic factor antibodies? You could use the argument that your GP is investigating you for PA as well... Privately i think it's about 130 quid via Medichecks including the blood draw.
B12 injections will alleviate pernicious anaemia symptoms 
Pernicious Anaemia 
Assistance required with interpreting B12 and Pernicious Anaemia Blood Tests.....
Help with B12 and folate levels
How to use the term "Pernicious Anaemia" correctly
