I’ve been having three monthly B12 injections since January and now GP is saying I don’t have a problem with my B12 as the latest blood test shows a value of >1350.
I’ve read somewhere that B12 readings are irrelevant/ should be ignored once injections or supplementing starts?
Can someone please explain why please?
(a bit worried that the GP might use the results to justify stopping the injections)
Thanks
It seems that you have Pernicious Anaemia . You should be on B12 injections FOR LIFE . Waste of time to be testing you one treatment starts . Ask your GP to please refer to the guide lines . Your levels need to be high and stay high . We all have different requirements for the regularity of the injections . If 3 monthly keep your symptoms at bay , then that should continue for life .
It’s true you don’t have a problem with B12 , as long as you continue to get injections. Best wishes .
I get tested annually, but I make sure I schedule the test BEFORE my quarterly jab is due OR at least 10 days after I have it. My understanding is that, if you’re tested within 10 days of getting the injection, your reading is stupidly high because your body hasn’t assimilated it yet.
Hi Edso
Wedgewood has given excellent advice … echo, echo, echo.
You need to ensure you continue B12 injections by hook or by crook. You NEED them FOR LIFE as Wedgewood explained. 🤗🤗🤗
Serum B12 measures all the B12 in your blood - not just the proportion that is bound to a transport protein that allows it to be used in your cells.
After an injection interpreting serum B12 results becomes more difficult. The injection will make your serum B12 reading above the measurable range and then it will gradually fall over time as unbound B12 is removed - mainly by your kidneys. Although the average is 2 months for hydroxocobalamin (1 month for cyano) there is considerable variation in individuals - for reasons that aren't known.
Also, even in people who have no absorption problem serum B12 levels vary considerably though they will tend to be quite steady. In an individual with an absorption problem they will be falling as the stores used to regulate levels become depleted. Whilst stores will last years in people who don't have an absorption problem they will not be used effectively in people who have absorption problems because their release relies on the same damaged absorption problem for reabsorption so most will just pass through the gut.
As a result it becomes more or less impossible to provide any meaningful interpretation of serum B12 levels after injections and is why it is better to go by symptoms post injections.
The BCSH standards say that testing is not necessary after injections have started - personally I think it should probably state that test results after injections should not be used as the basis for determining treatment, but things rarely get stated so clearly. Sorry its a while since I looked at the standards in detail so I can't remember where that is stated but I think it is quite early on.
onlinelibrary.wiley.com/doi...
very helpful and informative answer - I’m learning something new everyday from this forum - thank you Gambit 😊
Helpful and contain footnotes from.medical journals -
onlinelibrary.wiley.com: British Journal of Haematology Aug 2014: "Guidelines for the diagnosis and treatment of cobalamin and folate disorders" (Devalia et al) p9/23:
"No further testing is required" (....I agree with Gambit62 re. wording)
BCSH Guidelines (p8): "No further testing for cobalamin levels is required."
(....again, not that helpful)
How about cks.nice.org.uk/ anaemia-b12-and-folate-deficiency: p18 of 28, under the heading "Monitoring":
"Ongoing monitoring of people being treated with vitamin B12 or folic acid is generally considered unnecessary (unless a lack of compliance with folate treatment is suspected, or anaemia recurs)."
(....better, as only folate can have a "lack of compliance" if B12 deficiency assumed to be being treated with injections !)
We can only hope that the new NICE guidelines, due to be published in November this year, will be more proactive in their protection of those with B12 deficiency whose GPs are constantly trying to find reasons to stop ongoing B12 treatment via injection.
Very helpful, thank you !
I had bloods done at the GP, due to a multitude of symptoms, exhaustion and memory loss being the main. The lab report came back 132ng/L abnormal. My GP (each and everyone of them at the practice) have refused to treat me as they follow local guidelines, which state that they do not treat unless levels are 115ng/L. They are not following NICE guidelines.
I wonder if anyone knows how those who decide on local guidelines could find a reason for such a very low starting-point for "normal" ?
My B12 level ( 196 ng/L with a range given of 197 ng/L - 771 ng/L ) got me treatment. Which was a relief, as by that point I was exhausted, unable to think straight, struggling through my working day, mercurial in mood, had daily diarrhoea, lower back pain and left hip/groin pain. Bowel cancer was ruled out thankfully.
Later, my regime was restarted at 2 injections a day, as functional B12 deficiency was diagnosed by my GP and confirmed by the testing laboratory because my methylmalonic acid (MMA) was raised. Serum B12 does not always tell the whole story. The MMA had not been forming sufficient links with the injected B12 to reach and repair cells and tissues. By that stage my blood was swimming in B12 - but quite useless to me ! It took three years for my MMA to drop into range despite all those B12 injections.
I don't think I could have continued downhill until I'd hit 115 ng/L.
GPs need far more education on identifying the symptoms of B12 deficiency - at which stage they would realise quite how devastating this can be.
Your GPs are wrong. The local guidelines are wrong. We are not all the same.
I would record your symptoms on a daily basis, and if there are too many, just choose a few: the severe one/s , the one/s that are most frequent, the one/s that are most visible, the one/s that stop you living a normal life (can't go to supermarket because of sensory overload / can't walk further than the end of the road because of muscle weakness or foot drop for example). A photo or two of visible but unpredictable symptoms might help. A partner or family member who can support you and is able to recognise your symptoms would help too, especially in appointments. Just having someone who understands what a struggle your life has become is helpful, let's face it.
Have folate, ferritin, vitamin D and thyroid checked, as these can also be affected.
Any autoimmune (PA, vitiligo, psoriasis, Grave's or Hashimoto's thyroid conditions etc) in close family worth pointing out.
Read new NICE guidelines, BCSH (British Committee for Standards in Haematology) and BNF (British National Formulary, known as the Doctor's Bible) guidelines. Surely your GPs have flipped through at least one of these. If not, introduce them to a couple of relevant pages - get your highlighter ready.
Don't give up and don't continue to deteriorate. 132 ng/L is already way too low.
My mother had been diagnosed as having Pernicious Anaemia.
For many years she had B12 injections at surgery every 3 months.
She was then advised that her 'bloods were fine' and needed no more P.A. injections.
Both my sister and myself thought that was 'good. Unfortunately it was a disaster as mother developed stomach cancer and we both believe it was due to the withdrawal of Mother's B12 injections.
I also have this condition and GP told me I can have as many injections I think I may need so I have decided to have B12 once a month.
B12 injections stopped by GP
GP stopped B12 injections
MCV 95.3 fL and MCH level 32.2 pg (27-32) but gp refusing trial of b12 injections
B12 levels whilst on B12 injections..
