Vitamin b12 deficiency

[verabarbleen]

Hi there just after some advise . I recently had a blood test after feeling rubbish for quite some time and my vit b12 has come back as 184 ng/l on the note on my test result (on the patient knows best app) it says that anything between 180 and 320 needs to be retested in 3 months if vit b12 deficiency is suspected .
The doctor got back to me and said it was on the low end of normal and I can buy some of the vitamins which I have done. Just wondered if anyone has any experience with this and if so how long untill the vitamin tablets start to work? I have so many of the symptoms of low vitb12 but Google tells me all different things!
Sorry if my post doesn't make a lot of sense I'm trying to cook dinner with a 2 and 4 year old interrupting me every 5 seconds !

No help but bumping for you X

You can get b12 in nutritional yeast, think Boosh does it, I get that from sainsburys, all supermarkets will do it, just add to all cooking, is delicious and super full of nutrition, specifically b12, worth getting as well as any supplements as so easy. Like literally add to anything, soup, pasta dishes, curry, chili, over jacket potatoes etc, lovely fried with onions/mushrooms/sausages etc for a fry.

I was diagnosed with B12 deficiency and was prescribed tablets to take. Re -testing didn't show much improvement so I was expecting to get jabs at the doctor. When I looked into it I found that the absorption wasn't too good from the pills (also there are two forms of B12 and the tablets I was given were the least effective) I found there was a B12 mouth spray which I now use. I now need to be re tested

Try to get Pure Methylcobalamin

oh yes the spray, super easy! also well worth it.

@tonyhawks23 Yes, it's also in marmite but whether you can absorb it from food depends on something called 'intrinsic factor' which is what the blood test looks for.

@LucifersLight Yes, that's the one. My prescribed pills were cobalanin which were ineffective

I take it in a b vitamin complex spray as I was low on it. We have pernicious anaemia in the family so I was tested for the intrinsic factor but that's normal.

Just turns out my diet was a bit crap. I was also very low on vitamin D. Unsurprisingly I felt horrendous and the difference getting levels right was like night and day!

There's a very good FB group for information and treatment.

(2) Pernicious Anaemia/B12 Deficiency - Support Group | Facebook

A routine blood test showed my B12 level as 285 so my doctor ordered an Intrinsic Factor Antibody test which came back 'Positive' (way out of range). So I have Pernicious Anemia despite having zero symptoms of B12 deficiency.

Tablets don't work for me as I can't absorb B12 at all; I get a B12 injection every other month.

Try taking the supplements or one of the oral sprays as well as increasing dietary B12. If you don't have any absorption issues then I would think you'd see an improvement within a couple of months. If no improvement see if your GP will order the Intrinsic Factor Antibody blood test to see if you have PA. Good luck!

Thanks for all the replies, really helpful I will look into the spray 😊

Just want to ask about the levels I think 184 is quite low but the gp didn't seem to worry but everywhere online says that under 200 is low. Is 184 lowish in your experience?

Different labs often have different reference ranges, but 184 is low. I'm in the US and most doctors here like to see you at 400 or higher. Are you vegan/vegetarian? Do you eat animal protein such as eggs, chicken, beef?

What symptoms of low B12 do you have?

I think it's reasonable to have a trial period of 2-3 months where you are taking B12 supplements and boosting you dietary intake. But if your symptoms don't improve or you're experiencing neurological symptoms like a pins and needles sensation in your hands or feet, I'd push your GP for further bloodwork.

Most symptoms of low B12 are reversible with treatment but if the neurological stuff is left too long it can be difficult to get back to normal.

@GulfCoastBeachGirl thankyou for your reply. I do eat meat more than I'd like to be fair but we don't have a lot of money and mil works for a butcher so we get lots for free so it can't be dietary as we do have a very varied diet. I have pins and needles in my hands and feet when I wake up in the morning and I have pale lips, fuzzy head , tired all the time I want to cry but I have two very small kids so just assumed that was normal , my memory is bad and it's always been very good . I get dizzy and I also have random diarrhoea sometimes. I also have gallstones I don't know if that is linked somehow as that can make me feel crappy too. B12 was tested last summer and was 340 so it has gone down a lot in less than a year .

I think I worry more as my dad is early 60s and has early onset dementia. One of the medications he received was b12 so now I'm worried sick I'm going to get it. I'm 36 and he is 66

@verabarbleen I'm sorry about your Dad. Early onset dementia/Alzheimer's is particularly cruel. Do you know if he was ever diagnosed with a B12 deficiency? That would be useful info to have as sometimes these things seem to run in families (B12 deficiency).

So it appears that you're getting enough B12 in your diet. Some medications like Metformin or PPIs (for reflux/heartburn) can cause low B12 because they block absorption.

The neurological symptoms are worrying, and being constantly exhausted is awful when you have two little ones to care for. Do you think your GP would consider just ordering the Intrinsic Factor Antibody test so you could (maybe) rule out Pernicious Anemia? Or would they consider a series of B12 injections just to see if your symptoms improve significantly?

That is very helpful I have been taking lansoprazole daily since last summer to help with the pain killers I have to take for the gallstones (on the waiting list for surgery)
I'm not sure if my dad was diagnosed with a b12 deficiency. He did have a terrible diet though I'm hoping it's not connected as i really don't want to get the same thing he has 😓 .

You have been so helpful I will give the docs another ring maybe if I mention my dad and his illness they might listen: thank you so much for taking the time to reply . You have made me feel a little less crazy!

@verabarbleen Just wanted to add that the goal of B12 treatment is to alleviate your symptoms. I wouldn't get too obsessed with the "numbers" (B12 level) as the important thing is to get you feeling well again.

Once you start treatment the level of B12 in your bloodstream should rise, but the important thing is that you should start getting relief from your symptoms.

Our local lab actually adds notes if people are on the low end of normal for B12 ‘consider treatment if patient symptomatic’.
The ‘Normal’ range for B12 in this country is set really low, it’s available to buy to inject over the counter in Germany as it’s such an important vitamin.
Many beauty/aesthetic business can now give B12 injections, it’s usually around £15, so if your Dr won’t consider injections then you could pay for a loading dose if you could afford it.

I had recurrent pins and needles. Apparently my folate is low so despite not being pregnant or planning to be, I have to take folic acid daily again.

It has made a massive difference to me. I also take a generic b12 vitamin as I wondered if that was lacking too.

I have Gilbert's syndrome and b12 deficiency is associated with this. 1 take tablets with 1000 micrograms of b12 per day - this is 40000 the daily recommended dose, but floods my system enough that I reach normal b12 levels. I tried going to half the amount and within two weeks had symptoms again. Two weeks was the improvement time for me. I feel miles better on it

184 is low, but unfortunately doesn’t qualify for NHS B12 injection.

You can pay for these privately for around £30-£50 at lots of medical aesthetic clinics.

Make sure it’s a healthcare professional treating you, as they will prescribe Hydroxcobalamin which is the best form of B12

You will find that the injection gets in your system much faster than oral tablets .

@verabarbleen I have been taking lansoprazole daily since last summer

That is really important! That type of medication is known to cause B12 deficiency when used long term as it reduces stomach acid which can make it hard for B12 to be absorbed.

Mention (or remind) your GP that you are taking this. It could make a difference in how they treat your deficiency.

And try not to worry too much about your dementia risk. There are so many factors that determine our individual risk of developing Alzheimer's dementia and family history is only one piece of the puzzle. Read up on risk factors you can control and do your best to work on those. Many (if not most) people have at least one relative with dementia; it is sadly all too common. Take care.

It does qualify for NHS treatment. My level was 280 and I am on lifetime injections.
I guess it's an NHS postcode lottery!

Not necessarily. It depends entirely on the labs reference range and if you actually have pernicious anaemia or just low B12 due to dietary/medication reasons but can act still absorb B12. @bunnyrabbitsandbutterflies