Borderline B12

[chocaholic38]

Have been having a few symptoms which my GP is convinced is migraine related, however decided to do a medicheck b12 active test. Received results today which are 47.4 pmol/L (range 37.5-188).
I have been advised that the result is borderline and now to have a MMA blood test.
Does anyone know if this is something my GP will do? Or would my levels have to be low? Thanks

Ours wouldn’t for borderline low, they would ask about diet and, if all sounded good there, they would do an intrinsic factor blood test to see if it was an absorption issue, rather than a dietary one.

I think diet should be fine, I am gluten intolerant but I have a varied diet.

I have also been on omeprazole for years which I have read can stop absorption.
Will make an appointment with GP, As I said not sure they will do much because it's only borderline but I have neurological symptoms that just won't go away even with the increase in migraine prevention tablets.

You can have functional neurological disorder, which is where you have neurological symptoms but no abnormalities in brain structure. It’s like a software problem rather than a hardware problem. It’s not the brain itself that’s going wrong, it’s the neurotransmitters and signals.

Since you mentioned gluten, you can also have gluten neuropathy which affects your nervous system if you eat gluten.

Omeprazole affects magnesium absorption as well I believe, so that may be another possible cause of your symptoms.

But to specifically address your question, in my experience if your levels of anything are “normal” your GP won’t do anything further.

Dya regularly have potato and eggs ?

I don't eat any gluten at all so don't think it will be that.

I do eat potato's and eggs yes.

The right hand side of my body is numb, I have random nerve pains in legs and arms. surely that warrants some more investigation? I just feel I keep being fobbed off with it must be migraines, which is why I done the b12 test.

Gluten neuropathy is when you don’t normally eat gluten but you get a dose of it by accident and your body reacts badly, affecting your nerves. It can take months to recover.

Check your iron, Vit D, Vit B, magnesium, calcium. Get some supplements even if you’re technically within range. You can have normal blood levels of magnesium for example, but your body is still deficient and causing symptoms. You may have to take them for weeks or even months to see any improvement.

Random nerve pains are a good sign - usually the serious diseases that cause brain damage will start in one part of the brain and thus affect one part of the body. If your nerve pains are all over your body that points to something more systemic, either a vitamin deficiency or a functional neurological disorder. FND can be triggered by lots of things such as stress, anxiety, illness, depression, an accident, a virus, but basically your brain chemicals are out of whack.

If you eat GF then you could be missing B12, and other, vitamins. Non GF foods containing grains are generally fortified whereas GF products are often low in B vitamins, calcium, vitamin D, iron, zinc, magnesium & folate.

You can still be symptomatic with B12 in the lower end of the normal range like yours. Try a high strength supplement or book into an aesthetic’s place for B12 injections, they range from £15+ depending on area. I actually thought I had MS, and was having investigations, until all my symptoms resolved with B12 injections. Levels are set really low in the U.K. so you’d be hard pushed to get a GP to agree to them if you don’t have pernicious anaemia and can’t absorb B12 through diet.

Thanks for all the replies.
I think I will need to see what the GP suggests, I have always been low on iron everytime I am tested. But my stomach doesn't cope well with the tablets they prescribe. So that probably is low. Although I had bloods done about 2 months ago from the gp and was told all were normal

I don't think I feel brave enough to try the injections myself just yet, but might have to depending how the gp appointment goes.

What number is your b12 ?

It was a private test done with medicheck. Active b12 test: 47.4 pmol/L (range 37.5-188)

That doesn’t sound right? The NHS says normal is 115 pmol/l ? (the NHS usually uses ng/l which is doubly confusing)

From what I can work out there is 2 types of b12 tests. Total b12 & Active b12.
NHS test is total, which could come back normal however you could have low levels of active b12 (which is what the body can actually use)

It's all a bit confusing

I have always been low on iron everytime I am tested. But my stomach doesn't cope well with the tablets they prescribe

Try this. Iron bisglycinate has better bioavailability than ferrous fumerate and doesn’t cause any of the awful side effects.
https://www.amazon.co.uk/hz/mobile/mission?p=wjBybPZj9UNjxGhjw4dWc36lLwpF7p34t3KS%2BwA1EHH9gTH4NkLv1L2YJ0N8ECgcz8zpS5T5YsRr0%2Fdhyr6MepAJH2uj3RPB940fqA5k8uTnmKh%2BbYXpqcrDrQNUFboCDHRJXHAEIyRUCFSmLzCfXBjo3c%2Bfiua5pUGYpgsfLqn4T4sKWIEyGSJnrK%2BLDVobrQL1spCNK5wfHXt2DRnRaClNa6%2BRp2vCsTH%2BouXEsRjPeGAX0KYcakXmV6cuOajCo%2BNV9GqJyVhKSw7gOs%2Fct9GTGWMS9dEx0UMByojRI2IEg58sF2hIexvMfa6IwowR2RuPXOnf1NMZfDKirP6KxohVnK5MS954PHyAlvMeu4ycZD0HHx7ybZtGmNJ6GUriQHyBfzbkP4rxYa2lEa7cQQ%3D%3D&ref_=ci_mcx_mi&pf_rd_r=2HZMFV9J3KGCSGPNG74K&pf_rd_p=030783ae-f333-4801-8db8-e1448fd1d560&pd_rd_r=d12b863e-f409-4d9e-b653-fac1afdcc1df&pd_rd_w=NOxHa&pd_rd_wg=Qq0Eb

Thank you!! I will give them a try.

@chocaholic38 you are certainly thinking on the right track, it took me ages to get to the questions you are asking. If you eat a diet full of animal products such as meat and dairy then it looks like you have an absorption problem.

Firstly you mention two things which could be affecting the absorption......
Gluten free diet - have you had a celiac disease blood test?
You are on a tablet that lowers stomach acid - is this a longterm thing? Stomach acid is required to draw out vitamins from food in the stomach. So if stomach acid is too low it will fail to draw out B12 from food. B12 is one of the most complex vitamins for the body to absorb given the journey is has to take in order to be absorbed.

Have you had intrinsic factor tested as I would also suggest that you request for that and possibly Parietal Cell Autoantibody too.

So to manage the symptoms if it isnt due to retricting meat and dairy from your diet you will most likely need injections.

I would say get your folate checked as B12 and Folate work codependently, if folate is low then the body can not convert B12 in the body. They both need to be high.
Then you need to have good Ferretin levels as when the production of b12 increases in the body this pulls on your iron stores to increase production of red blood cells. But be mindful that you Iron is not water soluble so you can overload the body if you take too much (so only if needed).
Vitamin D is another thing to check, most people in the UK are deficient. I get I high level oral spray one by "Better You" which Holland and Barrett sell.

I have actually just had a telephone appointment with my gp this morning. Apparently most of my bloods are normal b12 test in range at 359. Still waiting on the intrinsic test to come back, apparently it takes a few weeks to come back.

Had to go back in for more bloods on Tuesday as it flagged up low phosphate so they want to test vitamin d. Been given phosphate sandoz and to go back next week for more bloods.

I had the test for celiac a good few years back and it was negative so I trialed a gluten free diet and have been ever since. And I have been on omeprazole since before I went gluten free.

Not sure if low vitamin d would give me the symptoms I’m having.

@chocaholic38 even if the intrinsic factor comes back negative that doesnt rule out that you have problems absorbing b12. Was that b12 a "b12 serum" test your doctor did because that will NOT mean your b12 is in range. You need to ask the doctor to take an "active b12" like what you had private. These arent routinely carried out so im betting they did the serum b12. And you arent supplementing b12 are you or did i miss that somewhere..?

Do you have access to your test results..? If you arent on the nhs app then you can access all your results on that.

If you can request for your doctor to put you through for Hcy (homocysteine) and MMA (Methyl malonic Acid) these two blood tests will always test high when b12 deficiency is present.

Always go off your symptoms for b12 thats the biggest thing I can say. And with the pins and needles you are having that is a massive symptom.

Yes it was a B12 serum test. My gp won't listen regarding the active B12 test, she said they don't use that one and dismissed it when I tried to show her.

The recommendation on the private test was for a MMA test but like I said she wouldn't entertain the private test. I think she has basically ruled out there being an issue with b12 because my level was more than 190.

I can't access my results, I'm in Scotland so no app here unfortunately. I'm not sure if they would print them for me if I asked when I'm next in. No harm in asking I suppose.

@chocaholic38 find a different doctor. It is very hard to find doctors that are knowledgeable about b12. Stick at it and keep asking for those tests as they are the ones you need.

Did you mention you had an MMA test done too, have you had this back..?

You most certainly can have your test results you have a legal right to have any test results if you ask for them. If you go to the receptionist at your doctor's and ask for all test results back to a specific date they should get the admin team to print them out for you.

Let us know how you get on 💜

No I never had that test done, it was recommended after the private test but gp wasn't interested.
If my symptoms don't improve she will refer me to neurology she said. so I will keep pushing with it all.

Thanks for all your advice it's much appreciated.

Hey op did you order medichecks online? I had a serum b12 done last week with my full blood tests and the b12 came back really high 2300 I paid private for b12 injections last year and stopped in August. All my bloods came back normal apart from b12.

Sorry to ramble on I mainly wanted to know about the medi check blood test is the finger prick one?. I did one
for thyroid last year and the hospital said they never take them into account.

Forgot to say I have loads of awful deficiency symptoms that is the same as it would be too low. I have a doctors appointment next week to chat about my results

@Jodie782 yes it was ordered online. Really straight forward to do, finger prick test, I had the results within 2 days of posting. Just unfortunate my gp wouldn’t accept it.
My gp wasn’t even thinking along the lines of b12 or vitamin d until I asked to be tested for the b12, which amazes me after reading so many people are suffering with this.

I have joined a group on fb (vitamin b12 wake up) lots more information on there which may help.

Good luck with your doctors appointment 🤞🏻

Thank you, I shall order that now. I did the thyroid one that came back my t3 was abnormal but because nhs was normal they said they don't take notice of private bloods. Frustrating! Hope you're feeling better did you ever get to the bottom of it?