B12 2000

[Bellmitzi]

Hi all I get b12 injections every 3 months I used to feel better after having them started about 3 years ago now no effect at all my b12 results is 2000 is this too much or just not working at all I'm very weak aching constantly thanks my ferritin was 19 too

[Foggyme Administrator]

Hi Bellmitzi. The first answer is no, your B12 level is not to high. It's what you would expect for someone who is on B12 injections (mine is always over 2000 and we have seen them as high as 5999).

Many GP's are ill-informed about B12 deficiency so yours may well try to stop your B12 injections. This is wrong and if you have trouble with this, please come back for more advice.

I note that your ferritin level was 19. You don't give the reference range but this looks to be very low and might well be the cause (or one of the causes) of your problems. Whilst it may well be within the reference range, it will be bumping along the bottom so, whilst your GP may again say that this is 'okay', for many people it's not. The level could do with being between 80 - 100.

Low ferritin levels can give you some of the same symptoms as B12 deficiency ( fatigue, weakness, shortness of breath, pins and needles and a craving to eat none food items such as dirt, ice, hair etc. (called pica).

I once had a ferritin level of 14 and felt very ill indeed - it felt very like my B12 had stopped working.

Also - has your GP checked your folate levels? Vitamin B12 and folate work together so if you have a low folate level then this might impede the absorption of B12.

People who inject with B12 can also get low potassium levels so it would also be a good idea to get you GP to check these. These should be done routinely as part of the B12 treatment regime, but most GP's don't realise this and fail to do it. But it's important that you don't supplement with potassium unless this is under medical supervision as too much can be dangerous. You can add potassium to your diet by eating bananas and using low salt, if you need it. And there's also lots of advice about dietary potassium on the Internet.

So, in conclusion, the first thing to look at is the levels of other vitamins and minerals. Perhaps your GP would do some blood tests for you (FBC, ferritin, folate (again), potassium, magnesium - as a minimum).

In the meantime, carry on with your usual B12 regime and you'll certainly begin to feel better when you get your ferritin levels up.

Good luck and please post again if you need any more advice or support X

P.s. Have you read the pinned posts to the right of the forum when you log on. They contain some excellent information and will give you all the basics about B12 deficiency and PA.

[Bellmitzi in reply to Foggyme]

Hi thanks very much for the reply I have been craving ice and for two days peanut butter which I haven't touched for 40 years since having my son that's what I craved I have got thyroid problems at the minute as well but I'm waiting to see an Endo now my vit D was down as well so I am supplementing now but I'm really aching as if someone hit me all over and this isn't going now at all really feeling unwell but look fine so everyone keeps telling me much appreaciated again

[Bellmitzi in reply to Bellmitzi]

I will check everything I'm taking but I am so fed up of feeling ill I'm prepared to try and take anything as the doctor isn't interested until I posted my results online the surgery told me results were fine but I rang and told them then I was out on ferrous Fumarate thanks for reply much appreaciated

[Gambit62 Administrator in reply to Foggyme]

Potassium is not a general issue with B12 - just that it can be a depleted during loading regimes. As Foggyme implies you should not supplement potassium directly without consulting your GP first as potassium levels are very delicately balanced.

[Bellmitzi in reply to Gambit62]

Thanks for taking time to reply I will check all my supplements now as I'm prepared to try anything even to feel normal for couple of hours thanks again

[bquoss in reply to Foggyme]

Good to read. Could you share information about high b12 blood test readings of 2000 or more being normal for those of us on injections for pernicious anemia? My internist gently suggested I inject less frequently because blood levels were near 2000. I was at 2 x week methylcobalamin. Now at 1 x week I don't feel as well as before (greater fatigue, GI difficulties, leg pains from residual neuropathy). It took years of injections before neurological symptoms retreated so that I could walk easily again, so I don't want to go backwards. Thank you.

[fbirder in reply to bquoss]

Inject at whatever frequency makes you feel better. Some people may find that using hydroxocobalamin requires less frequent jabs than does methylcobalamin - so it could be worth trying that.

The last two serum B12 tests I've had have been 5999 - which is the highest value that particular assay can manage. Luckily I have a GP who has read Martyn Hooper's book, so he doesn't fret unnecessarily.

There's a document in the Sichting Tekort pinned post about how ridiculously high levels aren't a problem. May be worth printing it out for your internist - if just to help them stop worrying.

[Bellmitzi in reply to fbirder]

Thanks very much for this info I'm prepared to try anything as it's a constant up hill struggle I will look online regarding injecting for any info I will keep you informed Thanks for reply much appreaciated

[Foggyme Administrator in reply to bquoss]

Hi Bquoss. In his book 'What You Need to Know About Pernicious Anaemia & B12 Deficiency' Martyn Hooper talks of problems with the treatment of B12 deficiency and the withdrawal of treatment due to high B12 levels. He quotes, as follows: 'The simple fact is that any patient receiving replacement therapy injections of B12 will have high levels of B12 in their blood' (p130). So, the high levels are inevitable and simply show that you are having B12 injections! Incidentally, the book is well worth a read.

The Stichting Tekort document fbirder mentions also refers to the extremely high doses of Hydroxocobalamin given to treat carbon monoxide poisoning (I would love to see those serum B12 levels)! Good idea to print it and show it to your internist.

U.K. Guidelines for the treatment of B12 deficiency also state that once treatment with B12 has commenced, then no further testing is necessary (unless checking for low B12 levels). (Contained in the PAS pinned posts).

Incidentally, the PAS pinned posts - to the right of the page when you log on - are well worth a read if you haven't done so. You might find something else that you could wave under your interns nose. And talking of the intern - the comments he made (gentle or not) show what little knowledge he has of B12 deficiency and it's treatment. So take courage and go armed with info...

I agree with fbirder...there is no necessity for you to reduce your B12 injections to a level where your symptoms return. However, if you wanted to you could try slowly increasing the time between injections with the proviso that the frequency would be increased again if symptoms return. But again, no necessity to do this if you are happy and well on your current regime. Or try the Hydroxocobalamin, as fbirder suggests.

But whatever you do...oh please don't go backwards 😀.

Anyway, hope this helps.

Take care X

[PAS-admin Partner]

Agreed. Ferritin is too low and if D was low, that will probably be a/the cause of your symptoms.

[Bellmitzi in reply to PAS-admin]

I don't see any improvement at all after my b12 injections when I started them I was great for weeks now no improvement at all I'm supplementing on other vitamin but actually feeling worse would it be a good idea to take more b12 any reply much appreaciated thanks

[Gambit62 Administrator in reply to Bellmitzi]

unlikely that it is B12 that is the problem so supplementation is unlikely to help. There is a huge overlap in symptoms of B12 dericiency, and Vit D deficiency. Also an overlap with iron deficiency - the ferritin results. Best to sort those out and then come back to B12 - and/or look for other potential causes if resolving the the ferritin and D doesn't work.

[Bellmitzi in reply to Gambit62]

Thanks I'm just wishing for a miracle cure like us all hoping the Endo I see will maybe able to help me as I have no idea on what vitamin ranges should be and mine seem to be all out sync I am under a neurologist also but I will be saying how ill I feel as he does get my gp moving also had cervical cancer 11 years ago but didn't feel like this even then thanks ever so much again

[Marz in reply to Bellmitzi]

Low Ferritin - along with all the other LOWS - will affect your conversion of T4 which is a storage hormone into the ACTIVE thyroid hormone T3.

Hope you soon feel stronger ....

[Bellmitzi in reply to Marz]

Thanks very much fed up of feeling a wreck like so many of us but all the advice on here is great your advice is much appreaciated Thankyou