Vitajab B12 injection : Hello, I have... - Pernicious Anaemi...

Pernicious Anaemia Society

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Vitajab B12 injection

Pippi39 profile image
Pippi39

Hello, I have low levels of b12 and have been told to take two tablets per day for the next 3 months and then one for life. I have see that you can have a vita jab injection at Lloyd’s chemist and was considering doing this to boost my levels.

Has anyone had one? Is it safe? I feel very tired and sore and was hoping it might help. Thank you

38 Replies

I woukd get a copy o your blood results. Do you know why your b12 levels have dropped. ?

If due to diet the tablets may well be absorbed . Worth a try

If an absirntion problem b12 I jectiins are needed.

There is a drive at present to give tablets. If no result or improvement insist on b12 injections s bnf guidelines.

I've no idea about the Lloyd's b12 inje tion.

I imagine as a reputable chemist will be okay check on the sort of colbalamin it is.

Most in the UK have Hydroxocobalamin.

First injection shouks be in a meducsj setting.

Pippi39 profile image
Pippi39 in reply to Nackapan

Thank you. I suppose I am just looking for a quick fix which isn’t the answer! I will keep taking the b12 tablets until I see endocrinologist again.

If my b12 levels haven’t improved then further investigation will be needed.

Thanks for your advice

As you have been told that you should supplement with B12 FOR LIFE , your doctor has diagnosed an absorption problem , which is most likely Pernicious Anaemia. This means that you don’t produce the Intrinsic Factor needed for absorption of B12., and that you have low or no stomach acid ( Hypochlorhydria/ Achlorhydria) The treatment for that is vitamin B 12 injections FOR LIFE . Do tell your doctor that you want to be treated according to the LATEST medical protocol . You are obviously suffering with the symptoms of B12 deficiency , because tablets are either totally useless to P.A. patients , or are insufficiently absorbed.

Best wishes .

P.S. I’m assuming that you are not vegan or a strict vegetarian .

Pippi39 profile image
Pippi39 in reply to wedgewood

Thank you. No I’m not vegan or vegetarian. I’m a bit lost with what to do now. Perhaps I need to do a private test

wedgewood profile image
wedgewood in reply to Pippi39

If your doctor has prescribed tablets which do not work for you , you need injections , and you must have them . I just looked up for information about the Vita-jab from Lloyds Pharmacies . They are the usual kind, like ones you would have from your GP.( Hydroxocobalamin) Administered by a Pharmacist , they would be fine . But if you need injections you should be able to get them at your surgery .

Pippi39 profile image
Pippi39 in reply to wedgewood

GP would not acknowledge that there was a b12 issue. Said I was in range and there was no discussion to be had. Endocrinologist recognised level too low but said tablets would be fine

wedgewood profile image
wedgewood in reply to Pippi39

I see . , You dont have to have a low B12 reading to have B12 deficiency . Doctors are very ignorant about B12 deficiency sad to say, They should know that, and treat symptoms not blood results .

Pippi39 profile image
Pippi39 in reply to wedgewood

No not low enough to have deficiency but I’ve had so many symptoms. I will keep going with the tablets and review at next blood tests. It’s just rubbish not feeling great. But Hashimotos might be contributing to that as well.

wedgewood profile image
wedgewood in reply to Pippi39

“ Normal” levels of B12 in U.K. are set much lower than other western countries . Germany for instance. Having lived inGermany for 19 years,I know that. Yes and autoimmune conditions seldom come alone . P.A. and Hashimoto’s are both such conditions , just 2 of over 100 .

mm5577 profile image
mm5577 in reply to wedgewood

I was diagnosed at age 57 with chronic pernicious anemia. Had to go on disability. I was being treated until I lost my insurance. I am now on medicare. The problem is my current doctor refuses to give me injections or anything. Told me to take OTC pills. I have neuropathy horribly, vision loss, headaches, hearing loss, memory loss and now Im having palpitations. This is the 3rd Dr Ive been to and none of them will give me injections or help with my treatment. Its like they are in denial. I feel like I'm dying and the damage is not reversible. I did find a site online where I can order my own B12 and will have to purchase needles and saline myself. Problem is, they wont just sell you needles, (unless your a druggie on the street then they are free) Biden’s world (idiot).

I do wish I could find a doctor who would listen and understand the severity. At this point all I have to look forward to is death.

wedgewood profile image
wedgewood in reply to mm5577

canadadrugsuperstore.com

biosenseclinic.com

b12vitaminstore.com

These sites have B12 in multi-dose vials and single use ampoules .( Cynocobalamin) They also sell the syringes , needles and sharps boxes ( for disposal of needles ) that you need .. They all ship to the USA from Canada , I have not used them , because I am in U.K. and get my B12 Hydroxocobalamin from German online pharmacies .I have gleaned this information from USA members .

I would visit them all to see which is the best value .I don’t want you to be so depressed , because there is a way out of your situation . Do not give up .

Sending you Best Wishes .

MoKayD profile image
MoKayD in reply to mm5577

Hi, I'm here in the US. I just googled Medicare's policy on B12 injections and found this medicare.org/articles/does-... Make an appointment with your doctor and come armed with printouts of any information you can find relating to pernicious anemia and demand B12 shots. If he/she refuses to give you injections tell them you will do self injections and ask for the nurse to show you how to self inject and then ask for a prescription. You can take the prescription to any pharmacy and have it filled. The out of pocket cost is nominal. The pharmacist will give you the syringes with the B12 vials. I don't know why you would need saline. As a last resort try going to an urgent care place like Patient First or someplace like that. They will sometimes give B12 shots without a prescription.

scnuke profile image
scnuke in reply to mm5577

Let's not bring politics into this. The many problems with the USA health system have been around long before the current administration and have nothing to do with Biden. The sources Wedgewood cited are good. I have used Biosense Clinic for several years without problem. They do sell syringes and needles, but are pricey. You can buy all the syringes and needles you need from Amazon.com. Boxes of 100 3cc syringes w/needle and 100 needles for injection are all usually less than $20. I understand your anger, but it is a slow and frustrating process unless you get lucky and find a physician that is actually interested in the problem. Ask your Dr. for a Rx so you can self inject. Any major pharmacy can supply it at a reasonable cost. I now get a 30ml vial of Hydroxocobalimin for $23 at Walgreens with a Good Rx card. Cheaper than Medicare prices. Don't give up and direct your anger towards taking care of yourself. If you have PA, it is a lifetime challenge. Good luck.

Do you get the 30ml vial of Hydrooxocobalimin and the syringes and needles without a prescription?

No, my Family Medicine physician writes an Rx for the 30 ml vials of Hydroxo which I fill locally. It is very reasonable and I am trialing the hydroxo formulation. I have ordered multi-dose vials from BioSense in Cananada without the need for Rx. They have 5, 10, and 30 ml vials of cyanocobalimin which seemed to do almost as well, except it seems the hydroxo lasts a bit longer, but too early to tell with a high degree of accuracy. The pharmacy in Canada also offers syringes and needles, as does my local one, but I order from Amazon for cost savings. I inject every day, as well as use other injectables, so I go through quite a few. The Biosense clinic is not a "shady"operation at all, so you can feel safe ordering. Good Luck.

Thank you so much, scnuke. It is just the information I needed. Yes, I did quite well on cyanocabolimin myself both in form of injections and sublingual. I am glad to hear someone else injects daily. I think I prefer the multidose vials. The idea of those 1 dose thingys is very intimitdating although I ordered some and they are on the way but I will check out Biosense. After all, this isn't going away. We have to inject or something for as long as we live as far as we know.

Shadowlight profile image
Shadowlight in reply to mm5577

I send you best wishes, but listen to wedgewood's advice, please. I was diagnosed at 57 as well, when I was hospitalised with dementia and unable to walk. Still, the doctors undertreated me. I self inject now. Saved my life. I get my b12 from Germany, but plan to source from one of wedgewood's links next time.

If I might gently suggest that you may want to change your attitude, both personally and and your judgement towards addicts and politicians. This is not the place for that.

Don't wait for doctors to help. Take your life into your own hands.

ps: how are you on medicare at 57 (or maybe you're older now)? I'd love that. I'm 59 and on medicaid. I pay out of pocket for b12 and syringes. I self inject 2 to 5 times a week. Cheap at twice the price to have a quality of life.

Nackapan profile image
Nackapan in reply to Pippi39

Or just get back to your gp and discuss it. Do get your blood results printed off. It will give ranges. You don't seem to have been told much. This unfortunately is often the case.

Push.

As if you need injections s one off at Lloyd's pharmacy won't suffice.

It's loading doses of y over 2 weeks depending on your symptoms continued or then maintenence . I think you need to find out more

Pippi39 profile image
Pippi39 in reply to Nackapan

My b12 is within range so GP does not see an issue that is why I went to an endocrinologist. B12, ferritin, vitamin d are all low but within NHS range. I have copy of blood results and endo has given me vitamins to take. The GP is useless unfortunately.

Nackapan profile image
Nackapan in reply to Pippi39

Good you have a copy. Did they test folate ,?

Low levels can give similar symptoms.

At least you know what to supplement for now .

Do keep a list of symptoms.

With an other autoimmune problem it's not unusual unfortunately. If uoh haven't tried tablets before worth a try. But if yoh don't improve push for better treatment.

Go for higher strength tablets. 1000mcg or take e smaller doses.

I tried this but even if I coukd absorb some it wasn't enough.

It should go by your symptoms as wedgesood says.

My husband responded to b12 tablets so just needed topping up ax obviously not absorbing enough from food. He has an autoimmune condition type one diabetes but obviously not PA

Functional b12 is when your levels are 'within normal but symptoms dictate deficiency

If you've had it tested before you would havd a baseline.

Everyone functions at different levels. Same with ferritin.

Hope you get it sorted.

Pippi39 profile image
Pippi39 in reply to Nackapan

Thanks so much for the advice

Take the tablets for a month. If you don't feel any better get the doctor to give you a blood test. If your B12 hasn't gone up it means you cannot absorb oral B12 and need injections for life.

If it has gone up substantially then B12 wasn't the problem and the doc needs to find out what it is.

Pippi39 profile image
Pippi39 in reply to fbirder

Thank you. I am having a test in June before I see endo in July. As I say, I have stopped asking GP as they are not helpful.

I have a similar problem. At the moment my GP thinks I don't need B12 injections. So I used to take tablets. Then I decided to experiment and up the dosage massively and changed to B12 liquid. I immediately noticed a big improvement. For example I had raynauds disease. It has now gone. I estimate I am now 95% recovered. But I am seeing a neurologist next week. I want to be 100% recovered and I think it will take injections. But if he refuses me I won't be too upset. At least I can lead a normal life now.

Pippi39 profile image
Pippi39 in reply to charks

Thanks for replying. Really good to hear that you are feeling better. Can I ask what liquid you take?

charks profile image
charks in reply to Pippi39

It's from Amazon. Nutrolia 5000mcg. And I also tuck a sublingual tablet in my cheek before going to sleep and leave there to dissolve. The facts are: I don't have access to injections. You can't overdose on B12. Only 1% of oral B12 is passively absorbed. I thought what the hell and decided to go mad. And it seems to be working.

Pippi39 profile image
Pippi39 in reply to charks

Thanks, you’ve made me laugh! I think you have the right attitude; we have to try what makes us feel better. I will have a look at Nutrolia. I need to raise my b12 levels quickly. Thanks so much

Can you write a list of your symptoms and post a pic of your blood test results? Pernicious Anaemia is an autoimmune condition which means that you are unable to absorb b12 from your diet / oral supplements. If you have it, you need (and are entitled to) b12 injections now, not July and from your GP not the chemist. Read some of Martyn Hooper's books (even just starting with free sample on kindle is helpful) and look at Pernicious Anaemia society too. There are a lot of knowledgeable people in this group who can help more if they have more to go on. amazon.co.uk/dp/1781610517/...

Pippi39 profile image
Pippi39 in reply to TFH1

Vitamin b12 serum 287ng/L (190.0-800.0)

Serum ferritin 36 ug/L (12.0-300.0)

Folate serum level- 13.5 ug/L (3.0-17.0)

I am hypothyroid as well. Just been told it’s Hashimotos at a thyroid scan I had. No one had mentioned Hashimotos to me until this week. I was diagnosed with under active thyroid 19 years ago.

GP having absolutely no discussion about b12. I am in range as far as they are concerned. That is why I went to a private endocrinologist. They recognised that vitamins need a lot of work but didn’t feel injections were necessary.

GP has reduced thyroxine dose from 125 to 100 because my tsh is 0.34

FT4- 17.2 pmol (10.0-20.0)

FT3- 4.3 pmol (3.5-6.5)

I get pins and needles in my sleep (hands). Back and neck muscle/joint pain.

I always feel in pain. I’ve had a clicking in my throat but thyroid scan ruled out issues there. Vitamin d was low but in range so I’m taking spray 54 nmol (50-200)

Now gluten and dairy free

Female and 39

What is your B12 result? Although it’s not accurate because it’s total B12. In range isn’t good enough. Did you fast for the test? There’s many causes of B12 deficiency, mines coeliac so don’t absorb it. Tablets are a waste of time & symptoms will get worse if you don’t absorb. They ignored my low level & was put on drugs I no longer need that wreck your body. Often hypothyroid I have too goes with B12d.

Pippi39 profile image
Pippi39 in reply to Nessy50

Vitamin b12 serum 287ng/L (190.0-800.0)

Serum ferritin 36 ug/L (12.0-300.0)

Folate serum level- 13.5 ug/L (3.0-17.0)

I am hypothyroid as well. Just been told it’s Hashimotos at a thyroid scan I had. No one had mentioned Hashimotos to me until this week. I was diagnosed with under active thyroid 19 years ago.

GP having absolutely no discussion about b12. I am in range as far as they are concerned. That is why I went to a private endocrinologist. They recognised that vitamins need a lot of work but didn’t feel injections were necessary.

GP has reduced thyroxine dose from 125 to 100 because my tsh is 0.34

FT4- 17.2 pmol (10.0-20.0)

FT3- 4.3 pmol (3.5-6.5)

I get pins and needles in my sleep (hands). Back and neck muscle/joint pain.

I always feel in pain. I’ve had a clicking in my throat but thyroid scan ruled out issues there. Vitamin d was low but in range so I’m taking spray 54 nmol (50-200)

Now gluten and dairy free

I’m female and 39

Nessy50 profile image
Nessy50 in reply to Pippi39

Your B12 isn’t great neither is ferritin & Vit D getting that up should help, mine was around that but got it up to nearly 100 I take about 6,000 iu most days. Did the test your thyroid antibodies & high? Some people don’t convert T4 & need T3. The pins & needles sounds like low B12.

You couldn’t make it up; I thought you would need a prescription for the b12 as you do with Superdrug but apparently not. While this is a good thing it’s pretty patronising that people are being denied b12 by their doctors and that we're unable to buy them buy them in the U.K. but it’s fine to pay £27 for one.

It’s crazy. I did a test with Superdrug and it was within range. Therefore I can’t have injections with them. Vitajab allow you to have one a month for £27 but I doubt it would be enough

I reckon you could do 25 injections at home for that much.

Shadowlight profile image
Shadowlight in reply to Pippi39

I'll simply reinforce what others have said. The doctors either don't understand or are constrained by laws. Your best plan of action us to learn how to self inject. It sounds daunting, but it is really easily done. Ask anyone here for help.

I could have written mm5577's post (without the political overtones and offensive words about addicts). Diagnosed at 57. US. Nearly died. Still went under and untreated, until I found this forum. I originally sourced my b12 from Germany. Next time I'll probably use a Canadian company.

It literally saved my life. Don't wait until you sustain permanent damage. "Pins and needles" can turn into having no feeling in your hands and feet. I self inject 2 to 5 times a week. Some manage on once a month. Everyone is different. Treat the symptoms, not your b12 levels.

I took my life back from the doctors. Best of luck.

Look to posters wedgewood and fbirder. They are very well-informed.

Hi,

Some links that may be of use...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

If you feel you are being under treated, you might want to draw GPs attention in any letter or conversation to the increased risk of permanent neurological damage such as problems with spinal cord if a patient is under treated.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates people can base their own letters on.

Point 1 in above link is about under treatment of b12 deficiency with neuro symptoms.

Point 5 is about being symptomatic with an in range serum B12 result.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

Support

Are you a PAS member?

They can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS website has useful articles that you might want to print out for your GP.

pernicious-anaemia-society....

Have you found out the local guidelines on B12 deficiency that are being used in your area of UK?

Each CCG/Health Board/NHS Hospital trust will have their own local guidelines on management of B12 deficiency.

Sometimes these local guidelines are not very helpful so worth knowing what you're up against. See blog post below.

b12deficiency.info/blog/202...

Worth comparing the local guidelines with links below.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of above document

pernicious-anaemia-society....

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in this book is out of date. See BNF link above.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

I've written some very detailed replies in other threads with more B12 info eg B12 articles, B12 websites, B12 books etc

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

Contact your GP for your injection

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