Veggie since 11 years old , have symptoms of B12 deficiency, yet levels are normal.

[Felix666]

Hi l have been a veggie since 11 years old, and since my 40's l have had all the symptoms of B12 deficiency, but when l got tested it came back normal, how can a person who has not eaten meat since 11 years old now 53 have normal levels, yet have symptoms of B12.

[Nackapan]

Everyone functions at different levels.

Alsi there is something called functional b12 deficiency.

Aksi the ' normal' levels ate set too low

Also te serum test only tells us what's in the blood . It's not all active so may nit be getting ti the cells.

Why arnt you taking b12 supplements ?

As we age we dint absorb b12 as well.

Everyone over 5o needs supplements I now know especially if you a vegetarian.

I was caught out and wrongly assumed I was absorbing all the b12 from my mixed diet including meat.

[Felix666 in reply to Nackapan]

I am taking a vitamin B12 oral spray (methylcobalamin) daily which does help my weakness in my limbs and bone crushing fatigue 4 times a day, but yet my tests for B12 say l have normal levels before l started on my own back to take the oral spray.

[Sleepybunny]

Hi,

From personal experience I know it is possible to have severe B12 deficiency with an in range B12 result.

"when l got tested it came back normal"

Have you seen the actual result or were you just told that it was "normal"?

The best advice I ever got was to always get access to or copies of my blood test results.

I was told on several occasions that everything was normal but when I got copies, I found abnormal and borderline results.

Link about writing letter to GP if symptomatic for B12 deficiency with an in range B12 result.

b12deficiency.info/b12-writ...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

I wrote very detailed replies on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about tests for PA, list of B12 books, list of B12 websites, more UK B12 documents, letters to GP about B12 deficiency and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

[MoKayD in reply to Sleepybunny]

My sister has been on PPIs for most of her adult life. After I diagnosed myself with B12 deficiency I told my sister she should have her B12 level checked. At first her doctor told her it wasn't necessary but finally last year she insisted he include a B12 level check with her yearly physical. Afterwards she told me the blood test results showed her level was in the normal range. Just last month we were discussing her continuing fatigue and other health issues and I brought up B12 again and asked her exactly what was her number. She found her paperwork and told me it was 181. I told her that was below normal and she should be having shots. I can't understand how her doctor could tell her that 181 was within the normal range. She has an appointment with her doctor next week and I have armed her with all the information she needs to forcefully explain to her doctor that she needs shots.

BTW, so far, because of me, my daughter, my sister, and my cousin's daughter are all receiving shots for B12 deficiency. I wish I had a soap box to stand on.

[Sleepybunny in reply to MoKayD]

"I can't understand how her doctor could tell her that 181 was within the normal range."

In many parts of UK the local CCGs or Health Boards are using their own local guidelines on B12 treatment.

List of CCGs (England)

england.nhs.uk/ccgs/

Health Boards (Wales)

wales.nhs.uk/ourservices/di...

Health Boards (Scotland)

scot.nhs.uk/organisations/

Health and Social Care trusts (NI)

online.hscni.net/hospitals/...

These local area guidelines often vary from what is in BSH, BNF, NICE CKS guidance.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

cks.nice.org.uk/anaemia-b12...

I suggest your sister gets hold of the local area guidelines for her CCG/Health Board and compares them to national guidance in links above.

I hope your sister is not in Gloucestershire. There are other areas of UK whose local guidance on treatment is unhelpful.

Gloucestershire has new guidance advocating oral B12 treatment instead of injections for majority of patients with B12 deficiency. See blog post below.

b12deficiency.info/blog/202...

"I have armed her with all the information she needs to forcefully explain to her doctor that she needs shots. "

Might be worth your sister putting her concerns into a letter to GP.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

In UK, letters to GP are supposed to be filed with medical notes so hopefully less likely to be ignored by GP. Also useful to have a paper trail in case there is a need for a complaint in future. Always keep copies of any letters written.

Pandemic has complicated things and often GP practices are using temporary guidelines for duration of pandemic.

See PAS news item below for details of up to date BSH guidance on B12 treatment during pandemic. Some GP surgeries are using out of date BSH advice.

pernicious-anaemia-society....

More info in my replies on this thread

healthunlocked.com/pasoc/po...

I left a long reply in this next thread with info on impact of pandemic on B12 treatment in UK.

healthunlocked.com/pasoc/po.....

[MoKayD in reply to Sleepybunny]

I'm sorry, I should've said that I live in the US. Thank you for your response though. Here in the US, there are no official guidelines for B-12 deficiency, just suggested treatment protocol. What type of treatment you receive is really up to each individual doctor and/or the patient's insurance company. My daughter's employer provides not very good healthcare insurance and she had to pay out of pocket for each of her shots. She, almost immediately, started self injecting. I have good insurance and I pay $1.86 for each shot and can get them whenever I feel like I need one. My doctor is very proactive when it comes to B12 deficiency.

[Alfabeta in reply to MoKayD]

Hi

PPI’s are listed on the NHS as contributing to b12 deficiency- one day someone will sue given the frequency with which they are doled out.

[wedgewood]

If you are a vegetarian , but eat eggs , cheese, milk yoghurt and butter , you could absorb some B12 from those foods. And as Nackapan points out, , there a B12 deficiency called functional deficiency ,where b12 levels show normal , but you are actually deficient . You could take B12 tablets ,and if that improves the symptoms you speak of , then you would know that the cause was dietary. . Of course vegetarians can also develop Pernicious Anaemia ,and if that were the case,the tablets would not help , but injections would .

You do not list your symptoms. But there are other conditions with some symptoms that are similar to 12 deficiency . So you need to be more specific.

[Felix666 in reply to wedgewood]

I am taking a oral spray, and l get some energy for a couple of hours, before it wears off, l use it 3 to 4 times a day

[clivealive Forum Support]

Hi Felix666 do you consume any dairy produce, eat Marmite, look at the side panels of some cereals packets (e.g. All Bran) which are now being "fortified" with Vitamin B12.

It doesn't take huge amounts to "top up" your levels if you have a "normal" healthy digestive system.

If you feel that you have "B12 deficiency symptoms" try taking a supplement of some form available cheaply across the counter (or online these days) at local pharmacy or health food store. It can do you no harm - and possibly will do you good.

I am not a medically trained person but have had P.A., just one of the many causes of B12 deficiency for over 48 years.

[Felix666 in reply to clivealive]

I eat eggs, cheese and drink soya milk with added vitamin 12 and vitamin D, l don't eat cereals, but they don't make any difference, only the oral spray helps.

[Alfabeta]

Hi Felix

Vegetarian or vegan?

[Felix666 in reply to Alfabeta]

Vegetarian

[Nackapan in reply to Felix666]

Hopefully as you are benefitting from the sprays it's a matter of taking them regularly to top up your good diet.

My sister has been a vegetarian for ? 40 years. Weve always thought vitamin s wernt needed with a good diet. She now takes high doses of b12 as was having deficiency symptoms and got scared seeing what was happening to me. Her levels were low but the oral supplements relieved symptoms and got her levels up. Mh husband has an autoimmune condition already. He got his b12 tested on my request. His levels were also raised with a low dose daily b12 tablet. Hes never taken vitamins but is over 50. So pleased as he has enough injections already. 4 a day

I truly believe its underestimated how much our absorbtion is compromised with age. As I've said ive now read everyone needs some help with fortified food or supplements in illness or over 5o or after childbirth ect.

So depending in your age thus hopefully can be rectified with just topping up your good diet. Hope so.

Of course if it turns out to be PA or an absorbtion problem there are thank goodness b12 injections

[Nackapan]

Also it is well documented however well you eat it's very hard to get enough b12 from diet alone if there vegan or actually vegetarian although the latter easier.

Most people manage on lower b12 levels as thats what they are used to.

However as we age we absorb less well.

I've many friends who have excellent vegertarian diets but need b12 supplements .

Theses alone have been enough to alleviate symptoms.

Fortunately for them as a known risk factor of b12 deficiency their doctors bothered to test them for b12 so caught early.

[EllieMayNot]

Like you, my B12 levels were quite normal (600s) but I suffered from functional B12 deficiency to the point of having degeneration of the nerves and seizures. It would appear that I had this problem for about 2 decades before receiving a proper diagnosis and treatment. If you have the symptoms, you may want to push for further testing (methylmalonic acid and homocysteine levels) or opt to self inject to see if there is any relief from your symptoms. Also, it would be a good idea to test for folic acid (folate) levels if you haven't already. You are wise to look for answers, many wish that we had pushed harder years ago instead of being told everything was normal when it clearly wasn't. Hope you find solid answers.

[Cherylclaire Forum Support]

I have been a vegetarian for about 40 years now. I was blissfully unaware of the existence of B12. For 35 of those years, I was a healthy, fit and active person, rarely at the doctor's.

For the last 5, I have been B12 deficient. I do not believe that this is because it took 35 years for the deficiency to manifest !

I also had low folate, ferritin (both low enough to cause symptoms but still inside range !!) and osteoporosis of the spine- so vitamin D on prescription.

Makes you wonder if I was eating at all - yet I've always had a very big appetite, varied diet and love my food to almost hobby-status !

My family history has plenty of autoimmune conditions- including Grave's disease, psoriasis, vitiligo. All my sisters' children have autism.

You could start by looking at your own family history for any clues .

You might want to list your symptoms and record when, how often, how severe.

I would take a serous look at your diet and ensure that eggs, cheese, fortified cereals, Marmite (y/n ?), fortified milk / milk substitutes form part of every meal. Perhaps keep a record of what you eat for a week or two.

Ask for a printout of your blood test results and check whether you think they are normal or not. Comparisons with previous blood tests might give you some idea of direction of travel.

If the B12 result is comfortably within normal range, please try supplementing by tablets first: if you can avoid injections for life by any means, I'd really recommend doing that.

All of the above might well give you plenty of evidence to present to your GP of a likely B12 deficiency problem with non-dietary cause, especially if the tablets don't work.

It is possible to have all of the symptoms with none of the numbers, as Sleepybunny has said above. Turner and Talbot's brief research (2009) on Functional B12 Deficiency is worth a read too.

[MagnumPI in reply to Cherylclaire]

Please research amalgam fillings. They contain mercury! I am having mine removed by a holistic dentist.

[Cherylclaire Forum Support in reply to MagnumPI]

Any particular reason for making that connection, MagnumPI ?

Interested to hear why.

[MagnumPI in reply to Cherylclaire]

chelationcommunity.com/2018... has some info about this also watch the panorama programme Poison In The Mouth (1994) PANORAMA, BBC on you tube. Had a cracked filling for a few years before removal and am convinced its all linked. Pregnant women and children under 16 are not allowed these fillings.

[Cherylclaire Forum Support in reply to MagnumPI]

I will look.

Interested because my mum and two of my sisters had all their amalgam fillings removed and replaced.

Let me know how it goes, okay ?