References for treatment guidelines

[Scillydreamer]

I'm sure I have read somewhere on here that there are official guidelines/advice that symptoms should be relied upon to determine treatment rather than blood test results. Can anyone point me to something? My doctor is suggesting I only need injections every 6 months as a result of blood test B12 being 2000 10 weeks after injection despite my symptoms returning after 4 weeks and improving again after the injection 2 weeks ago.

Thanks

[Foggyme Administrator]

Hi Scillydreamer. Your GP is wrong...of course your serum B12 will be high - it should be after injections and is what can be expected - as you know 😀.

All the guidelines state that following commencement of injections, further testing of serum B12 levels is not required - unless looking for low levels - in which case more B12 is required.

I see Hidden has given you the link to the BCSH guidelines, so here's some information that may help you with your GP:

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

No idea why your GP is suggesting injections every six months...ridiculous 😣. Not in line with any of the guidelines. Also - if you have any neurological symptoms, after the loading doses you should have every other day injections until no further improvement - for some this can take many months.

Here's a link to the BNF treatment/frequency guidelines about that (your GP will have a copy of this book on the desk):

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Also - a recent research B12 treatment review paper (by a haematologist) makes the following points:

Concerning treatment of confirmed B12 deficiency, well-defined guidelines have been enunciated, the details of which still apply. Some important principles need emphasizing. Where the cause of the deficiency is not known or irreversible, treatment must be lifelong...[ ]..It should be noted that patients with pernicious anemia at times report that the recommended treatment schedule is not adequate to relieve all their neurological symptoms and therefore often request, or may even treat themselves with, B12 injections more frequently than the guidelines suggest. No biological basis for this apparent increased requirement for B12 replacement is known, but because there are no reports of adverse effects associated with excess B12 intake, there is no reason to advise against this practice. [On the last page of the paper - link below]

Note: this excert speaks to pernicious anaemia but the treatment of pernicious anaemia is the treatment of the B12 deficiency if causes - so, by logical extension, it also refers to B12 deficiency (whatever the cause and even if there is no confirmed diagnosis of PA in place).

And oh is it good to see a haematologist write (in a research paper, no less) that more frequent injections of B12 - even if self-injected - will do no harm - and there is no reason to advise against it. Eureka 😀

Here's the full research paper:

bloodjournal.org/content/bl...

Post again if you need any more help with your GP.

Good luck 👍

[Scillydreamer in reply to Foggyme]

Fabulous thank you. GP s going to love me when I turn up with all this paper....though to be fair he has been good, just ill informed compared to all of you! I think he was up for me having it earlier until he saw my most recent results.

[Foggyme Administrator in reply to Scillydreamer]

P.s. Just edited to insert more information - in case you haven't seen it 😀

[potter5 in reply to Foggyme]

Hi Foggy me, may I ask your advice please. I was diagnosed last June with b12 deficiency serum level 166. Initially 6 loading doses then 3 monthly. Saw consultant neurologist in November who recommended 1 injection weekly, I have posted this information up, I also self inject 2 times further weekly in line with NICE guidelines. I have many neurological symptoms, the worst of which are the feeling of cotton wool stuffed feet and toes and banding round ankles, most of the other symptoms have abated somewhat but do flare up again e.g. electric shock feelings in hands, sore tongue., palpitations. When the guidelines say every other day until no more improvement, should I have had more improvement, it has only been slight. After injection the cotton wool feeling eases a little and banding feeling slackens but comes back quickly. I have also read that after about 6 months you are likely to make no further improvement, although consultant said it could take a couple of years. I just don't know what to do any more. Afraid to reduce the injections but on the other hand is 3 a week too much after so many months. I would appreciate any advice. Thank you, Potter 5.

[Foggyme Administrator in reply to potter5]

Hi Potter5. Your neurologist is right - for some people it can take up to two years for neurological repair to occur, especially if B12 deficiency has been present for some time before treatment commenced (neurological repair takes longer that repair to other systems on the body) 😣. Whatever you read about no further repair after six months is not accurate, and not in line with reports we hear in the forum.

It might give you hope to hear that there was a recent post here where someone reported that their neurological symptoms had suddenly abated after over a year of every other injections 😀. It's also worth noting that individuals respond differently to their requirements for frequency of injections - some maintain every other day (or even daily) injections indefinitely, in order to get and keep well - and that's not a problem if it keeps symptoms at bay.

So keep with the every other day regime of injections 😀. B12 is not toxic, you can't overdose and it's not addictive (a very strange notion that some GP's seem to trot out, on occasion).

Here's some information that you may find reassuring:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

Also - how are your folate levels (GP should have checked them). B12 and folate work together so if folate is deficient or too low in the reference range the body cannot utilise B12 properly - so worth keeping an eye on.

The good news is that you are seeing improvements in some areas so the B12 is doing its work - and will also be working away on your neurological 'network' - even if you can't actually feel the benefits, as yet. As before, these improvements take longer.

Take care, keep on jabbing, put up a new post if you need any more help or support....and let us all know how you get on.

👍

[potter5 in reply to Foggyme]

Thank you so much for reply and reassurance Foggyme. I had some good advice for other people on site but because my injections were ongoing for so many months, I didn't know whether to cut back, or supplement further with sublingual. I will continue with the 3 injections each week. My folate is about 12 . I eat lots of leafy green vegetables with lemon juice and lots of potassium rich foods. Also take Pure encapsulations ONE multivitamin 2 x weekly. Without this forum and information and a feeling that other people know what you are going through, I would have been lost. Thank you again for support. Best wishes Potter 5

[Foggyme Administrator in reply to potter5]

Hi Potter5.

About the folate... you don't give a reference range for the folate...two ranges that could apply are:

Adults: 2-20 ng/mL or 4.5-45.3 nmol/L (approximately - ranges may vary at the upper and lower ends due to testing equipment used and local calibration of that equipment).

If the first reference range (ng/ml) was in use, then folate is probably okay.

If the second reference range (nmol/L) is the one that applies to your results, then folate could be a little low - in which case you could try taking a maintenance dose of 400mcg of folic acid a day.

Good luck 👍

[potter5 in reply to Foggyme]

Hi Foggyme, the reference they use is ug/l range 4.6 - 18.7. When I first got my bloods taken last June B12 b12 serum 166 and folate 8. although folate has fluctuated up and down since then, going as low as 6, doctor has never suggested supplements because it was within range but from information I had gathered I knew it needed to be higher to help with b12 uptake, latest folate test 11 ug/l but I cannot find the blood results. I did a few months ago supplement for a number of weeks with folate and now take a multivitamin with 400 mcg twice weekly. I will keep an eye on it as you suggest. Thank you so much again for your help and advice. 🙂

[Scillydreamer]

Thank you!

[clivealive Forum Support]

I mentioned the below in my second reply to you this morning:

"In your case and despite your (now) high B12 level your doctor should take note of the following regarding your symptoms:"

" False normal B12 results and the risk of neurological damage "

(U.K. N.E.Q.A.S Haematics.org.uk)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

[Scillydreamer in reply to clivealive]

You did, thank you. Read so much yesterday that I started losing track of where I had seen things!

[clivealive Forum Support in reply to Scillydreamer]

Sorry! It can be a bit of an "overload" at times

Hope you got a good night's sleep

[Scillydreamer]

Will do, at the moment I am gathering paper and keeping a daily record of how I feel, so that IF my symptoms reoccur I can go back with evidence and ammo to get the injection sooner than Dr is suggesting he wants to give it to me. So may be a few weeks before I report back in on this specifically. But hopeful that dealing with the vit D and folate deficiency will mean B12 symptoms don't reoccur so early in the cycle.....