this is my first post. I have been experiencing many of the symptoms of functional b12 deficiency/pernicious anemia for close to 7 years. My doctor was reluctant for whatever reason to authorize the injections, even though I had a positive parietal cell antibody test.
I guess my question is. Im due to start my treatment a week from Monday. Three loading dose injections for the first 2 weeks, then 1 very 3 months for life. I have some b12 ampoules I bought from Germany. Im wondering if it would be wise to self inject after the 2 week loading dose, as I believe I have some nerve damage? Will the doctors know if I don’t tell them?
anyway thank you for reading. Hope to be an active member of this forum.
MikeyO 🙂
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MikeyO
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7 years was a long time for symptoms to be left untreated so quite posible you have suffered nerve damage. My loading dose was every other day for two weeks ! I had such awful neurological symptoms that after my first three monthly injection and still no improvment in symptoms I requested to be given them 2 monthly - this the Dr reluctantly agreeded to.
Symptoms can often feel worse before better as the body heals. I took it into my own hands to self inject but it's your choice if you tell your Dr or not. My Dr didn't agree with my self injecting but then it wasn't her who was suffering and her life wasn't on hold.
I was then refered to a neurologist and waited months to be seen. In that time had I not have injected I would have suffered further damage. There seems to be a lot of stigma with treating this condition and sometimes we have to make our own decision.
I hope you now make some headway with regard your recovery.
I found this link very useful provided by a members here to serve as discussion with your GP or help guide you if you decide to SI yourself: cks.nice.org.uk/topics/anae...
Here it says for treatment "For people with neurological involvement -
Seek urgent specialist advice from a neurologist and/or haematologist.
Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:
Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months. "
These guidelines are under review and should be updated in November 2023 which should further help all people with PA/B12 deficiency
There are incredibly knowledgeable folk here and you will be well supported, good luck on your healing journey!
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
In a person with both B12 deficiency and folate deficiency, it's vital that both deficiencies are treated. B12 treatment would be started first. Treating folate deficiency without treating a co-existing B12 deficiency may lead to neurological damage.
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Were you tested for coeliac disease?
NICE guidelines Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested.
Have you got results for folate, ferritin (and other iron tests) and Vitamin D as forum members often report deficiencies in these. Full Blood Count (FBC) might also be useful.
Thyroid
It's quite common for forum members to also have thyroid issues.
In UK, GPs often only test TSH which won't give a full picture of thyroid function and it's possible to have thyroid issues even with a normal range TSH.
I suggest putting any thyroid results along with an outline of your story on Thyroid UK forum on Health Unlocked.
I usually urge UK forum members to track down the local b12 deficiency guidelines for their ICB (Integrated Care Board) or Health Board. Try a search online, a search on this forum or submit a FOI (Freedom of Information) request to ICB/Health Board website asking for a copy of or link to local b12 deficiency guidelines.
Read blog post below if you want to know why I urge UK forum members to do this.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, more B12 books, more B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
I know the protocol isn’t probably the most optimal. I was hoping for at least monthly injections after the initial 2 week loading dose period. It was a battle even getting my doctor to agree to any injections at all. My doctor was adamanat, that as my serum b12 levels were always elevated at 2000pg/ml that there was no need for b12 treatment. Luckily the NHS website had information regarding functional b12 deficiency and I urged my doctor to look up the information and he finally agreed to administer treatment. My haemoglobin and red blood cell count levels were always below normal yet my serum b12 was always elevated together with a positive parietal cell antibody test, I’m surprised he didn’t put two and two together that my body has an absorption problem.
Sorry if I’m rambling on. I know my treatment could be more aggressive to reverse years of non treatment, but it’s at least a small victory. Maybe after the initial loading dose period I’ll take stock and see if I can push for more frequent injections. I’m just apprehensive about annoying my doctor and risk having treatment stopped. I’ll have a read at the resources posted in this thread. it’s a lot to take in, but I’ll do my best to digest as much information as possible.
Take care everyone. Let’s keep pushing for better health.
It seems Drs are incapable of putting two and two together and the joining up the dots. I agree with you it's a lot to take in and at times all the info can be overwhelming.
If symptoms persist request for two monthly injections albeit my Dr didn't want to prescribe them with a little persuasion and a few articals of B12 info batted in her direction she could hardly refuse.
I forgot to mention that I’ve got an Active B12 test with medichecks this coming Wednesday. Hopefully this will allow me know how much of my b12 is actually being used by my body. Surprisingly, the NHS doesn’t test for the active functional part of B12. Needs a massive rethink to be honest.
I’ve already ordered 6 packs of b12 ampoules from German Amazon & Versandapo respectively. I may order more and go on an aggressive SI protocol after the 2 week prescribed loading dose.
I tested negative for Intrinsic Factor antibodies. I had a reading 1.45. In regards to the MMA & Homocysteine, I’m not sure if the NHS tests for those. I did consider going for a private test through medichecks for MMA & Homocysteine levels but the price is out of my my budget.
It’s strange that I have tested positive for parietal cell antibodies, but negative for intrinsic factor. I thought that intrinsic factor is produced in the parietal cells. I’m confused. However I had one two many symptoms indicative of a functional b12 deficiency/pernicious anemia.
Hi, it is likely that as you have parietal cell antibodies you are not producing intrinsic factor, or not much of it, so are less likely to get a positive test for intrinsic factor antibodies. If the deficiency is functional, it could be further downstream anyway, not necessarily PA (or you could have both), so the active B12 test may not add much. I believe that the NHS can test MMA and homocysteine although it seems they often don't. I think at least MMA may have been tested for me but no result yet - via Neurologist referral to Adult Metabolic Inherited Diseases - so you could always try asking for a referral. Ideally these would be done before you have the injections, but not always possible and it can take time for them to correct, even with the right treatment. Best wishes.
I was supplementing with a multivitamin that contained Cyanocobalamin B12. I was told to stop supplementing on 28th September and then retest in a month.
A blood test which I took in early September had a few abnormalities. My AST serum level was slightly raised at 69IU/L and Serum ALT level was slightly raised at 55IU/L. I was diagnosed with fatty liver disease in 2018. These levels are an improvement according to my doctor.
My Neutrophil has always been low. According to my doctor it is normal due to my ethnicity.
My Red Blood Cell count has always been low-normal or below range. My latest reading was 4.04. Haemoglobin estimation was below range at 126g/L. Platelet Count was also below normal at 123 and Mean Platelet volume was below range at 13.6fL
I have an Active B12 test scheduled on Wednesday. I’m going to wait and see the results and possibly order a MMA & Homocysteine test. My first B12 loading dose injections start in a fortnight from Monday.
Multivitamins typically contain only small amounts of B12, how much was in it and for how long were you taking? If you had PA or absorption issues, such small amounts would be very unlikely to be absorbed in any case. Hard to see how they would elevate your B12 all the way to 2000, afaik that usually only happens with injections.
If the cause of the elevated B12 is not the multi, your doctor may need to investigate other causes as outlined in this paper : academic.oup.com/qjmed/arti.... Warning that some details of the paper may be upsetting.
ah. 600mcg is a hefty enough dose. Didn't expect that in a multi. Fair enough! It might indeed explain the elevated B12 then. Your diagnosed liver issue might also play a role. But whether your levels will drop in a month is another question. But in any case B12 blood levels should never be used to assess efficacy of treatment or need for injections, especially when supplementation has been in the picture. I received a misdiagnosis myself ("B12 overdose", which isn't a thing) based on even smaller supplementation levels. Glad to hear you'll receive loading doses but it sounds like after that you should be on alternate day injections until no further improvement since you mentioned nerve damage.
Yes, I would suggest to wait to see how you feel before starting to self-inject. I wouldn't conclude that B12 is definitely the issue unless other causes have been ruled out, but is certainly worth seeing whether B12 improves things.
Positive Parietal Cell Antibodies could be due to Pernicious Anaemia, but it can also be due to other things, so hope your doctor has looked into that.
Your B12 levels are very elevated, which, as other have mentioned, in the absence of injections could be indicative of some other kind of illness, which I hope your doctor has looked into. It would also suggest you are able to absorb B12 from diet/supplements, so it's unlikely that you have Pernicious Anaemia as in "autoimmune atrophic gastritis".
As you mention, you may have some kind of functional deficiency, and apart from your symptoms, evidence for that would be if you have MMA / Homocysteine tests and find them elevated despite your elevated B12, or if you find that your symptoms improve with B12 treatment.
You mention taking high dose B12 supplements, has that impacted your symptoms in any way?
The guidelines are every other day until no further improvement if neurological involvement is there, so perhaps if you have neurological issues you can highlight that to your doctor. (cks.nice.org.uk/topics/anae... What are the neurological issues you are facing? The guidelines say that you should ideally see a neurologist if that is the case. You say your believe you have some nerve damage, a neurologist will be able to check that.
Since the doctor is giving your B12 injections, you can see how you respond to them. I wouldn't necessarily jump in with the every other day self-injections after that, unless you are concerned you have urgent B12 related neurological issues which may get worse without sufficient treatment. Otherwise, I'd see what improvement I have in my symptoms from the injections and see how/whether that improvement wanes with time before deciding I need to self-inject. If your symptoms improve and then return two weeks later, you know you need more injections and can explain that to the doctor.
I couldn’t tell whether or not the high dose b12 supplement intake has affected me positively or negatively. I just feel unwell nearly everyday. The supplement is a fitness multivitamin. I exercise 5 days a week with what energy I have. ☹️
The symptoms I have:
1) Chest Tightness (sporadic, used to be constant pain between 2016 & 2019)
2) Shortness of Breath/Unable to Breathe deeply/Always Sighing/Air Hunger
3) Dizziness when walking/gait and balance issues.
4) Numbness in hands (Sporadic) can’t make a tight fist at times. Grip strength has declined.
5) Chronic Fatigue
6) Disturbed Sleep
7) Low Mood/Irritability
8) Brain Fog
9) Possible infertility/ low libido(My hormones are normal according to a recent test)
Really hope that the B12 injections sort this for you. Keep a diary of all the symptoms so you can look at it more clearly and see what improves, what doesn't and when. If things improve after the loading dose you can see whether that improvement sustains and make sure you have frequent enough injections to keep improving. If you don't see any improvement it may be worth continuing the injections for a while and then take stock. Some people notice immediate improvement on injections (me), others say it can take longer. 🌼
I really think you need to see a neurologist. Might be worth getting someone to film these issues to show GP/neurologist if it can be done without risking your safety.
If GP is reluctant to refer you, you could maybe put a request for a referral into a short polite letter to GP along with evidence that supports the request eg symptoms list, quotes from NICE CKS and BSH documents.
Does your GP have a list of all your neuro symptoms? See Symptoms lists in one of my other replies.
Some of the many neuro symptoms I had were.....
tingling
pins and needles
insect crawling feelings (formication)
burning sensations
electric shock sensations
water trickling sensation along spinal cord
numb spots
backache
migraine
memory problems
brainfog
bladder issues
difficulty getting the right words out (nominal aphasia)
going blank in the middle of a sentence
trouble following complex stories, films etc
dropping things
clumsiness
bumping into things
periodic limb movements (jerks)
restless legs syndrome
muscle twitching
eyelid flickering
strange behaviour eg car keys in the fridge, boiling the kettle without any water in it
proprioception problems
Proprioception is awareness of your body in space. If balance is worse when your eyes are closed, it's dark or your view of surroundings is blocked then that is suggestive of possible proprioception problems.
Make sure any neurologist checks your proprioception sense.
Two neuro tests that can help to diagnose proprioception problems are
1) Romberg test
2) Walking heel to toe with eyes closed
These tests should only be carried out by a doctor at medical premises as there is a risk of losing balance and getting hurt.
There are many other possible neuro symptoms associated with B12 deficiency.
Spine
B12 deficiency may lead to damage of the spinal cord if treatment is inadequate or diagnosis delayed. The myelin layer around nerves may get damaged.
I am not saying you have spinal cord damage, I'm not medically trained.
I am saying that your GPs and any specialists you see should be aware that SACD, sub acute combined degeneration of the spinal cord, is a possible consequence of b12 deficiency (can also happen in folate deficiency but I think this is rarer).
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