I have felt exhausted for years. I had blood tests in May that showed my b12 levels were 74. Iron was 23, so only just normal. Vitamin d was deficient (24). I had six loading doses of vitamin b12 plus loading dose of vitamin d and ferritin tablets. I felt like a new woman after the b12 shots but within a month the exhaustion had returned. My GP agreed to b12 shots every 10 weeks rather than every 3 months and ordered more blood tests. My b12 came back as 284, so within the 'normal' range but I can't help but think it should have higher as this was only three months after the loading doses. I didn't book a follow up call with my GP as I was scared they would cancel the b12 shots due to me now having 'normal' levels. I now have b12 jabs every ten weeks but my energy levels tend to dip a month after each one. Should I book a follow up call with my GP or is it possible they'll cancel my jabs?Background: I think I have autoimmune issues as I suffer from psoriasis, IBS and various other skin issues. I have also always been very thin. However the doc ordered tests for celiac and intrinsic factor and both were negative. I have a dark mark on my lip that has reduced slightly since the b12 shots but is still there and also have a fissured tongue.
B12 level after loading dose - should... - Pernicious Anaemi...
B12 level after loading dose - should I push GP?
- Blood tests
- Iron
- Vitamin D
- Vitamin B12
- Anaemia
- Intrinsic factor test
- Vitamin and mineral deficiencies
- Ferritin test
You already have one autoimmune condition (psoriasis). ‘Autoimmune conditions rarely come alone , so it looks as though you might have another one , namely Pernicious Anaemia ( or as it is called in sone medical spheres . Autoimmune Gastritis )
Having a negative Intrinsic Factor Antibodies test , does not mean that you don’t have P.A. About 50 % of PA patients test negative. Doctors should know this . You can try to get more regular B12 injections , but you may have to do what most of us on this forum do , and self -inject
The IBS symptoms could be connected to P.A. because P.A. causes low or no stomach acid (Hydrochlorhydria / Achlorhydria) . This causes bloating , pain etc
We are all different and need different regularities of injections.
If you find you need to do this , come back and ask for information. Injecting is not expensive—about £2. 00 for one everything included .
Injections are the most efficacious method of B12 treatment . You can use Intramuscular or subcutaneous methods . Both work equally well . Best wishes .
Thank you! How often would you recommend injecting? And where/how do you purchase the injections please? I have seen Germany mentioned...
Your aim is to inject often enough to keep the symptoms of B12 deficiency at bay .. so you could start off at every other day ,and gradually lengthen the time . There is no way of knowing how often you will need , until you start injections. As I said , we are all different .
We get our ampoules from reliable German online pharmacies . They are controlled by the German health authorities. There are about 2-4 who will supply U.K. There is one which you can get in English.
apohealth.de. Click Union Jack bottom left for English .
Our most popular B12 ampoules are the Panpharma B12 depot ( Hydrocobalamin as used in NHS . ) use the reference number 16199653 to get straight to the item . Come in boxes of 10 Fill out the address form carefully , first putting in your country , . Then it will accept your post code and address. But not until you have put in your country .
Don’t order more than £135.00 worth including delivery charges , or else you will be liable for tax in U.K. plus a charge from Royal Mail .
Needles , syringes etc can be obtained from medisave.co.uk
Sorry , I have to go now . Needles will have to be discussed at a later time- I must fly .
You need to decide on your injection method.
Thank you so much for taking the time to share this advice - I really appreciate it!
Also report to G.p symptoms are returning before next B12 injection.So glad the turn around in symptoms so good for you .
You didn't mention diet.
Do you eat everything all the groups of foods 🤔
If you do obviously an absorbtion problem.
Don't forget maintenence doses of folate .
NHS recommend 400mcg folic acid fir all child bearing age women.
Not just when pregnant .
Maintenence doses of iron should be monitored with a blood test .
Your b12 level is very low after loading doses.
The mrasurenent use useful and assuming a serum B12 test .
I would push for more Injections going by symptoms.
NICE guidelines
G.p needs to be aware you need more than 10 weekly for your medical record and knowledge .
I presently have an NHS prescription for 2 weekly b12 Injections ( often opposed) but so far reinstated .
I tried oral / sublingual b12 and less frequent Injections.
On my record.
Did not work for me
Only set me back as not enough .
My mum has 8 weekly
My daughter 10 weekly but needing to get hers reinstated.
Good to have a back up of your own supplies .
Good to have the need of b12 on your medical record.
I inject subcutaneously at home with the prescription.
Have 6 weekly IM.
Both work just as well as long as frequent enough to your needs .
IM in theory should stay longer in your system.
In my experience in over 6 years not the case.
I.M gets into your system quicker but for me seemingly leaves at the same rate .
So glad you feeling so much better so quickly.
Obviously what you needed along with vit D iron s folate
Thank you for taking the time to reply. I have never been on a diet and eat lots of different things. Not a huge fan of meat - would probably naturally eat it three or four times a week - but have been forcing myself to eat more since realising my b12 was low and that doesn't seem to have made a difference. Have also been taking oral b12 and haven't noticed any difference with that. I have never had a huge amount of stamina so I now wonder if I have always been a bit deficient. I think the thing that tipped me over into utter exhaustion was being pregnant or breastfeeding for 50 months in total between 2017-2023 which I think depleted my stores. I take folic acid daily. How long did it take you to get two weekly injections? Did they take a lot of convincing?
I was also mustve been B12 depleted by pregnancies,breast feeding in Hindsight. However my tipping point was years later with the menopause.
It sounds like you have an absorbtion problem that can't be resolved with extra meat ( although that will help with iron) but not B12 .
Like you say your tipping point.
Injections helped you . That's the proof.
State to G.p .
A good clinical response .
How long after injection symotons return .
B12 stores known to deplete after childbirth. Often the culprit of post natal depression not thought of.
I think now post natal bloods shoukd be done to check status 🤔
I was put back on EOD b12 injections as had severe neurological symptoms.
Vertigo ect.
Then after months twice weekly and so on.
Only got to 3 weeks though and symptoms back .
It was a neurologist that suggested staying on 2 weekly and doing subcutaneous injections at home.
G.ps are usually comfortable with prescribing 8 weekly .
Can prescribe more frequently but usually with a specialists recommendations.
Your B12 blood level low after loading.
Mention that and above on 4th paragraph I've written.
Once in regular injections further testing not needed as levels supposed to be high . Whole point.
I've written in to the surgery points so on my medical notes.
Short and to the point.
Then on next consult a reference .
I also bought my own supplies as in the pandemic got very anxious about the possibility of not getting what I needed .
However my prescription was not stopped at that time and the Gp agreed for me to self inject .
I personally like the needs as above 2-3 monthly b12 injections on my medical record.
G.ps are notoriously undereducated about B12 .
Then assume everyone needs no more than 2-3 monthly.
Then a drive to stop them and put people on b12 tablets .
I personally have no other medical conditions to 'muddy the waters ' in a G.ps mind .
Only B12 got me functioning again eventually.
As also refused anti depressants many many occasions and othef drugs .
B12 deficiency for whatever reason is not taken seriously enough.
If diet related b12 tablets fine ax not an absorbtiin problem.
Few do okay on very large doses of b12 tablets/ sublingual as passive absorbtion can happen about 1%.
To be absolutely sure what you are getting b12 injections go straight into your blood stream .
Me and 3 generations of my family have lots of opposition from medics but plough on to keep awareness up and keep b12 prescriptions .
Don't delay until symptoms get worse.
Hope you get what you need and on the road to better health .
If your intrinsic factor test is negative, it is also likely you may not in fact have perniceous anemia, however all these things affect people in different ways. I myself have a positive intrinsic factor test with gradually declining b12 levels, but seem to have none of the complaints that other people have. I also take no other pills of any sort. The B 12 doses have no effect at all. I am becoming to think that diet may be the key thing here - all things in moderation, and I truly mean all things - no diets, no exclusions eat Maccas if you want from time to time etc....Some times I get little cravings for the odd thing eg ABC (anything but chicken) A solid dollop of marmite on a sandwich. I indulge these and seem to get by just fine.
Hope this is helpful
A marmite sandwich sounds great! I do eat lots (and probably have McDonald's once a week with the children 🙈). Sorry to hear the b12 doses have no effect for you but glad to hear you don't have the usual complaints - fingers crossed that continues
Even in those with PA the test for IF is only positive approximately 50% of the time.
Her very low results, low numbers following injections and symptoms are almost certainly because of PA. Diet alone will not improve her b12 and her nerve damage will most likely worsen and be permanent if not treated with b12 injections asap.
I agree. Levels still low on 6 loading doses.
I believe more permanent damage is done as too many rely on a positive IFAB result which leads to trials in tablets.
Delayed b12 injections .
Not enough B12 injections .
My guess is more than 50%have absorbtion problems that are undiagnosed
For a PA person your ferritin should be around 100. Your iron stores are low. Suggest you take elemental/haem iron preferably in capsule form. Three Arrows in the US will supply. Self-injection is also necessary, at least in the short and medium term. Lots of info how to do this on this site.
Thank you - really helpful 😊
Absolutely! Get them to read NICE guidelines. Once you start injection the blood B12 level test is of no value. I think once a week or every other day is the normal for this forum. Also look to self injection.vv
Thank you - yes, I have neurological symptoms so initial loading dose should have been every other day until no further improvement according to nice guidelines. Wish I'd found this forum and known that a few months ago! Definitely going to self inject if no joy with NHS.
Hi! I completely get that your 10 weekly injections don't last and that symptoms return. I was diagnosed with low B12 about the same time as yourself, had the loading doses then the plan was every 3 months.I found that my symptoms returned as little as 4 weeks after my jab so discussed this with my GP. I quoted NICE guidelines about treating the symptoms not the blood results. It also helped that at the appointment she commented that I looked so well and I had to tell her that it was because I had sourced a private B12 injection a week earlier.
She agreed to prescribe me the vials and the surgery give me the needles and syringes to self inject every month. I'm a qualified nurse, but they got the nurse at the surgery to take me through the procedure and she observed me doing the first one.
I've actually been giving myself them every 3 weeks so the symptoms don't return, and have been doing this for 7 months now. The GP remains happy to prescribe them.
I just thought this might help you discuss things with your GP. The biggest barrier to getting the injections more regularly seems to be the actual appointment at the surgery with the nursing team. My surgery are now identifying more patients who may be able to self administer.
Thank you - this is super helpful. I am on the brink of booking a private appt with a b12 specialist who said he can prescribe it for self injection. Or I was going to buy supplies from Germany. I didn't realise that was something that might be accessible via the NHS. Not sure how much luck I'd have though - last week my GP told me she thought I seemed anxious and like I was trying to do too much, and that I just needed to relax and not be superwoman. Never mind that I've switched to a fully remote job to save energy and spend many weekends in bed/resting! She also seemed not totally against self injecting though, but I assumed that would need to be self funded. Like you, the jabs have a big impact at first but I feel tired again at the 3-4 week point. I just want to not feel bone crushingly tired and to be able to function like me again. Thanks for sharing your story.
If you click on my name, my original post is there to read. Mine all stemmed from anxiety which I now know can be one of the initial symptoms. At 58, I thought I was just getting older and tired and achey. Hopefully if GPs hear of other GPs doing it they will feel more confident to prescribe and let us control how often we take the injections.
Yes definitely - the more we talk and share best practice the better. I thought I was getting older and tired and achy too and I'm 38!! So glad to have identified a (fixable) issue
I remember being so tired I cried, sooooo much better now. Try and stay on the right side of your GP but also think about self-injection, I used the 'Cambridge' specialist and it was very useful, kind of muddling through now reducing self-injection but staying with the iron, B6 and methyl foliate
Dr Klein? He was the one I was looking into after watching a webinar of his that was recommended on here the other day...
Assistance required with interpreting B12 and Pernicious Anaemia Blood Tests.....
Severe Calf Pain after loading B12
B12 levels after loading dose
Loading doses b12
