Due to raised levels of B12 showing in blood test they have stopped all treatment saying I have recovered. Does this happen?
For the past few months I have been self medicating because I reached a point of exhaustion, tightening of the chest and sore mouth with continuous ulcers. I have not heard of anyone 'getting better'.
No, you do not get better from PA or B12 def, if there is an absorption problem then that is not healed by giving injections. It happened to my daughter, but she wanted off the B12 injections so it was with her consent that she stopped having B12 treatment. After 7 months she was back to one infection after the other, iron def, ditsy and useless at driving etc, so she (and GP) agreed to have the active B12 test. Which resulted in her going straight back onto B12 injections for life now. Active B12 was low, MMA far to high.
As you are self injecting (?) just keep that up if you want, or comply with GP and give him/ her a copy of the:
British Society for Haematology Guidelines for the diagnosis and treatment of Cobalamin and Folate disorders:
bcshguidelines.com/document...
They recommend:
No further testing for cobalamin levels is required once on treatment.
And:
Recommendations
Patients suspected of having pernicious anaemia should be tested for intrinsic factor antibody. Patients found to be positive should have lifelong therapy with cobalamin (Grade 1A).
Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response. (Grade 2A)
(b) Borderline or normal serum cobalamin, in the presence of anaemia or other symptoms (false normal cobalamin levels)
Serum cobalamin levels around the normal range have been reported in the presence of significant anaemia(Devalia 2006, Galloway and Hamilton 2007) or other problems(Mahood 1977). This may be a technical problem with the assay due to the presence of high levels of intrinsic factor antibodies (Hamilton, et al 2006). Further confirmation of tissue deficiency may be obtained by checking plasma methylmalonic acid and homocysteine, and empirical treatment (as for pernicious anaemia) initiated immediately pending results of second line tests. If possible, pre-treatment serum should be stored in case future further investigation is necessary by the laboratory or UKNEQAS. Confirmed false normal results should be reported to the Medicines and Heathcare products Regulatory Agency (MHRA).
I hope this helps,
Kind regards,
Marre.
Whilst being deficient in B12 can stop, the deficiency will have occurred for a reason - generally malabsorption of some sort - and that won't have changed so stopping your treatment is most definitely (unless they were sure that the reason was diet/drug interaction) the wrong thing to be doing. Stopping the treatment is the reason why you are having all the symptoms again.
Assuming you are based in UK
Would you be able to see another doctor? If not - go back armed with the NICE guidelines quoted below and demand to be given your treatment again - take a friend with you if you can ... and if you get no-where you could try contacting the PAS for support (join if you aren't already a member) and think about making a formal complaint.
There are no known dangers from having high B12 levels. Hydroxocobalamin is used at 5000 times the treatment dosage over 15 minutes to treat cyanide poisoning.
Once you are on injections you are on injections for life.
NICE guidelines aren't very clear but they do include the following
cks.nice.org.uk/anaemia-b12...
Although this is in the section on neurological involvement the FOR LIFE applies equally if there isn't neurological involvmenet
Maintenance dose (where the vitamin B12 deficiency is not thought to be diet related): administer hydroxocobalamin 1 mg intramuscularly every 3 months for life (standard dose)
Hi
My B12 jabs were recently stopped. My GP and a hospital consultant decided that my B12 had 'self corrected' following B12 jabs every 3 months for a year. They decided my low B12 was diet related and that the raised levels were nothing to do with treatment. It is so frustrating when this happens. I hope you have more luck with discussing it with your GP than I did. I've even changed GP surgery only to be told by the new doctors that they only give B12 jabs until your levels rise. They then stop treatment until your B12 goes down again to below 'normal levels'....
Even my dentist says I should be on B12 due to the inside of my mouth peeling.
I started self injecting weekly two weeks ago. I'm already feeling soooo much better.
Good luck and all the best with your doctors and self treating.
Glad that you have managed to find a solution for yourself and are feeling so much better.
Have to say that I am appalled by the attitudes of your GP and the new doctors
Are you based in the UK? If so you could try pointing out that they are not treating their patients in line with either BCSH or NICE guidelines, which are to treat in accordance with symptoms, not test results. The test results have been shown to be a poor guide to deficiency and the risks of permanent damage from not treating B12 deficiency are too high to make anything other than treating on the basis of symptoms so obviously the wrong thing to do. Would suggest you ought to complain about the treatment but would totally understand if you didn't feel that you wanted to get a reputation as a trouble maker.
Hi Gambit
Sorry for the delayed reply.
My first set of doctors said they don't need to read any info on B12 deficiency as they know everything they need to. I abandoned a pile of info on my GPs desk.
My new surgery are describing the NICE guidelines as 'woolly' and reminded me that they are ONLY ‘guidelines’. Therefore the clinician has the final say. They also stated that you can overdose on B12 and they are only 'protecting themselves'... I keep pointing out that you can’t as its water soluble, but round this area of the UK no one seems to understand.
I’m miffed that I found out that the GP and consultant lied about a test for PA which they said came back fine. But I now know for definite was rejected by the lab. But what can you do. If you complain they can make it difficult to get a GP anywhere as GP’s have way too much power.
I don't feel totally better with weekly jabs, but not as dizzy etc and still awake after 6:30 pm. I’m not as moody and can cope with being at work all day.
I just hope rules on buying B12 from abroad and syringes etc doesn’t change. 
Hi Gambit
Sorry for the delayed reply.
My first set of doctors said they don't need to read any info on B12 deficiency as they know everything they need to. I abandoned a pile of info on my GPs desk.
My new surgery are describing the NICE guidelines as 'woolly' and reminded me that they are ONLY ‘guidelines’. Therefore the clinician has the final say. They also stated that you can overdose on B12 and they are only 'protecting themselves'... I keep pointing out that you can’t as its water soluble, but round this area of the UK no one seems to understand.
I’m miffed that I found out that the GP and consultant lied about a test for PA which they said came back fine. But I now know for definite was rejected by the lab. But what can you do. If you complain they can make it difficult to get a GP anywhere as GP’s have way too much power.
I don't feel totally better with weekly jabs, but not as dizzy etc and still awake after 6:30 pm. I’m not as moody and can cope with being at work all day.
I just hope rules on buying B12 from abroad and syringes etc doesn’t change.
Hi Linda 75, Well done and please share your secret as to where you can purchase them for self injecting x
Hi mini skirt
I got it online from a German site called goldpharma. The syringes were from the medi save.
I don't have the web addresses to hand.
This below listed (links) is what most people here use, and where they get their supplies, you can buy most forms of injectale B12 in most EU countries at pharmacies with out a prescription, just not in UK and Holland. Also OTC in Australia, most of South America etc.
Injectable B12.
goldpharma.com/article/1/ Search for 'hydroxocobalamin' and select: B 12 depot-rotexmedica 10 amp. (10x1ml)
mycare.de/ Search for 'hydroxocobalamin' and select: B12 DEPOT ROTEXMEDICA (10x1ml)
oxfordbiosciences.com/vitam... methylcobalamin, one has to mix it with saline solution the info is on their resources page (go to bottom of page) oxfordbiosciences.com/resou...
arnika-apo.de/ they sell methylcobalamin but its not visible on their website, you have to contact them, they speak english :
Tel.: 089 / 613 809 58
Fax: 089 / 613 809 59
Das Telefon ist an Werktagen Montag bis Freitag von 8:00 Uhr bis 17:00 Uhr besetzt.
E-Mail: service@arnika-apo.de
Syringes and sharp boxes:
medisave.co.uk/consumables-...
I inject IM (in a muscle), I inject prescribed NHS hydroxocobalamin, and selfbought cyanocobalamin, I find the B12 ampoules with 2 ml hurts/ stings less because it's half the concentration. B12 is thick stuff and the stinging is the fluid pushing apart the muscle fibres, so diluted its les thick and you inject slower, also 2ml is easier to suck up in syringe I find, if you leave some its not to much wasted... But we all are different. I prefer cyanocobalamin, it does not sting, but needs to be used more often.
I've never used methylcobalamin so can not comment.
For pain free IM injections:
Warm up the ampoule of B12 to body temp
Relax the muscle, give it a good hake
Inject slowly, if you feel it hurts start again is what I do.
I do not stab, I go slowly and on your leg you can find areas that have bareley any nerves, its only the prick trough the skin I feel then. Also having the eye of the needle facing you makes it easier to go in, why I do not know. I inject after a hot bath so my skin is soft.
Some more in here:
IM:
faculty.ksu.edu.sa/gemeay/s...
Sub cut:
cc.nih.gov/ccc/patient_educ...
If you go to the old PAS forum you will find numerous posts in the diagnosis and treatment section about self injecting, in the living with PA section there is a topic called tips for more comfortable B12 injections, see:
pernicious-anaemia-society....
I hope the above all helps,
Kind regards,
Marre..
All in this topic:
I'm now staying away from the surgery, I don't want to be labeled a trouble maker.
A few years ago my husband had a problem with dropped foot, it resolved after physio. Over the years he has developed severe pain in both lower legs, mainly the calf muscles, this has never been diagnosed or treated successfully. More recently he woke one morning unable to move his leg. This gradually resolved but the pain remained.
Once I became aware of B12 deficiency we requested a blood test. Serum B12 was 240, low within the range.
It was difficult to get the GP to prescribe the injections. I quoted NICE guidelines and made a bit of a fuss. He has had 4 injections over 2 weeks and is now declared well as his levels are high!
My husbands mother has PA but the GP said he could definitely tell us he did not have PA as no enlarged red cells!
I'm a nurse and I was ignorant regarding B12, but I am always trying to learn in every area of medicine. It seems the GPs are not and they just think they know best. They have to be open to patients having more knowledge about their condition, mainly due to the Internet. GPs should openly discuss things with the patients and should not make them feel patronised.
I felt humiliated when I was trying to discuss the B12 with the Dr, I'm used to talking to DRs but i was made to feel I was making a fuss!
Hi Fredapain
I fully understand how you feel. I have to work with doctors and nurses daily on a professional basis when I'm at work. I never feel intimidated when I challenge GPs on a professional level and advocating for others.
However, when it comes to advocating for yourself regarding something like B12 you can be made to feel so small. Recently I've been reduced to tears after seeing my GP.
Self treatment is really my only option.
I hope you and your husband find a solution.
Thank you everybody for posting in response. I have been to the doctors this morning and gave her all the info and a list of my symptoms. Next Tuesday I am having a blood test for PA and kidney function but going on my symptoms she thinks it could be DEPRESSION !!!! I give up.
Hi Jennie
I've only just read this thread and I'm shocked to hear your injections were stopped.
I would contact the chair of the PAS (Pernicious Anaenia) Tel. 01656 769 717
He might be able to advise you on what to do next.
I would also recommend that you look at this website.
There is a section on writing to your GP "B12 - Writing to your doctor".
There is also an e-mail contact address on the same page.
Have a look at this document.
Oh for heavens sake, you poor thing! No, you cannot be cured from PA. marre has the right idea here.
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