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Pernicious Anaemia Society
16,697 members11,567 posts

Doctors have stopped my b12

Hi All,

I am seriously fed up. I was diagnosed with B12 deficiency back in 2013 but not PA.

My injections have been stopped once before but I managed to see a senior nurse who took pity on me and started then again. They then took blood tests in January and I was told that my levels were in the normal range. So my injections would stop, 3 mths on and I'm feel exhausted, fuzzy head, forgetful, emotional and numbness in fingers. I went back and requested another blood test. I have been back for my results today. My levels have dropped by 200 but I'm still within the normal range. I have tried to argue that it is clear that my body isn't absorbing b12 because of the dramatic drop! Ive been told to return in 3 mths. I'm so frustrated and could cry. I don't think I'll make the 3 mths feeling like I do. What can I do? Is it worth tackling the doctors or getting some b12 for self injection. Where can I get this and is it easy to inject? Please help as I feel exhausted ☹

30 Replies
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I understand exactly how you feel. A GP did the same too me and I ended up so ill that when I finally ended up in my local hospital I was told that if I hadn't gone in I'd probably be dead within 48 hours!! I've been left with no feeling in my feet, limited feeling in my lower legs and hands and a curve in my spine.

Thankfully I'm now with another GP surgery and they are happy for my too SI, I've provided most things myself, they supply me with a new sharps box as and when I ask and I order my b12 ampules from them every few months.

Good luck and keep fighting

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Wow! That's scary! Just wish GPs understood it more. It's hard to fight with no energy. Sorry that happened to you and glad you now get what you need

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Try getting in touch with the Pernicious Anemia Society, they maybe able too help

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Do you know how I contact them? Will they help? Because tests said I hadn't got PA

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go to the PAS website and all the contact details should be on there.

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Thank you xx

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Hi Alison , I’m sorry to read your story , it’s such a familiar one . This is a brilliant group,and has helped me a lot with my husband , I inject him every week with b12 and he is a lot better but long way to go. I found all the info where to get needles etc ; videos on injections ; co factors needed to help with absorption etc , . Please consider joining pernicious anemea /b12 deficiency support group as they are also very very helpful , you only have to answer 2 simple questions to join and be on FB . Best of luck ,

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Thank you. Do you have any links to where you buy equipment from. I'm a little bit scared to inject myself and got no one else to do it ☹ is it difficult and can you do damage if you don't get it right? Thanks for your help. This really shouldn't be a common problem. It's just wrong! GPs don't seem to understand how it makes you feel

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You won't do damage, Inject it intramuscular to work best, if you have lots of fat, it will still work. Make sure you give yourself the right dose. 1ml and 1CC are the same, a full insulin size 1ml/1cc needle. I had no detectable b12 by the time a doctor figured out what was going on. 1 shot a week for a month, 2 shots a week for a month, 1 shot a week for a month and then 1 shot a month. I even went on sublingual b12 for a year 5000mg a day and did fine. Shots are the most sure way. My case was in 2001. No doctor I had or have seen sense have seen a case like mine. I was misdiagnosed several times and even told it was stress or I needed counseling because there were so many symptoms. Don't screw around, take your B12.

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Hi,

Some links that may be of use

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone so messages can be left.

They may not have resources to help people who are not PAS members so may be worth joining.

pernicious-anaemia-society....

PAS support groups in UK

pernicious-anaemia-society....

PAS support groups can be useful source of info on helpful GPs and how people supplement b12 if NHS treatment not enough.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Some very useful info in above link.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

"diagnosed with B12 deficiency back in 2013 but not PA"

What did GPs think had caused your B12 deficiency in 2013? Might be worth getting copy of medical records/test results to see what was written in 2013.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Why did GPs think it was not PA?

Did you have an Intrinsic Factor Antibody test? Was the result of IFA test negative in 2013?

IFA test results are not always reliable. Is your GP aware that it is possible to have Antibody Negative Pernicious Anaemia? See flowchart link below.

UK b12 documents

If you're in UK, I'd suggest reading all of these.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

Were you tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

coeliac.org.uk/coeliac-dise...

H Pylori infection?

patient.info/health/dyspeps...

B12 books I found useful

There are stories of injections being stopped in books below.

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

UK B12 blogs

There are stories of B12 injections being stopped on these blogs.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Some UK people have been helped by B12d.org

b12d.org/

"my injections would stop, 3 mths on and I'm feel exhausted, fuzzy head, forgetful, emotional and numbness in fingers"

Are your GPs aware of the neurological consequences of b12 deficiency? Numbness in fingers is a neuro symptom.

Do you also have pins and needles, tinnitus, tingling, tremors, memory issues, balance problems?

I hope your GPs are aware of the risk of permanent neuro damage including spinal problems, if B12 deficiency is under treated. Might be worth passing relevant info to them.

Stopping injections in someone who is symptomatic for B12 deficiency and whose symptoms deteriorate without B12 does not make sense to me.

PAS news item about Neuro Consequences of PA

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, avialable to PAS members only.

pernicious-anaemia-society....

Link about writing letter to GPs about under treatment of B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Person who runs B12 deficiency Info can be contacted by e-mail. Details on website. May take a while to get a response by e-mail. She responds to comments left under blog posts on the website.

I am not medically trained. I hope you get the help you need.

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Thank you xx

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Please don't panic about self injecting. It really isn't difficult at all. Cheap as chips too - what an amazing thing to be in charge of your own health!

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Do you have links to where I can buy the things I need?

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And thanks for the responses. Really means a lot.

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I really feel for you alison687

Just because you haven’t been diagnosed with PA, it doesn’t mean you haven’t got it . Your symptoms at present so horrid that you need injections and here’s how to do it .I can only tell you what I do . I have to self-inject because one injection every three months was no good to me ( I had been diagnosed with PA , after positive result of an Intrinsic Factor Antibody test .)Totally numb feet , which my GP said was “ideopathic” nothing to do with PA. And all other symptoms returning . So I HAD to self -inject to keep well . I get B12 Hydroxocobalamin ampoules from” versandapo.de in English” This is a very reliable German online pharmacy , widely used by members .

Google all of that and you will get onto their site in English . I’m you accidentally getbonto the German one , just scroll till you find the 🇬🇧, and click on it . You will need to register for your first purchase . Search for Hydroxocobalamin, and a drop down list appears , click on Hydroxocobalamin acetat . The you will see the choice . Either 1mg x1ml ampoules or 1mg x 2ml . However many you buy , the shipping costs €9.00. I buy 100 Rotexmedica . Cheapest and very good .They have about 2 1/2 years use by date . You can pay with a card or Paypal .

Needles , syringes (2ml) swabs and sharps box from Medisave.uk . You need to decide if you inject I.M. ( as the doctors do) or sub-cut ( sub-cutaneous ) look at videos on line . It means if you buy in bulk (100 of everything )an injection costs about £1.00 Now is that good value or what ?

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It is very good value 😊 I actually hate injections and never really got used to having these at the doctors surgery. What is sub cut? Sorry for all the questions xx

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Some members on this site use sub-cutaneous injections . You need a much shorter needle, and you self -inject into,the belly . ( google it and you will find a video I’m sure ) I don’t use that method . I inject I.M. ( Intra muscular )with a 1” x25 gauge needle.into the middle outer 1/3 of my thighs , where the muscle is nearest the surface . Google it all There’s lots of info . I prefer now to self inject . It’s totally painless .I been doing it for 2 1/2 years . It has given me my life back .

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It sounds good - well apart from the injection 😁

I will have a Google tomorrow as I am really struggling today to keep my eyes open. Thank you so much for your help x

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Thanks everyone for the advice. I've watched a few videos on YouTube, they all seem to be putting injection in different places on the thigh. Can anyone advise of a good video to watch? I watched one with a doctor self injecting 1 into her arm. Imagine this is quite tricky if by yourself. I am scared to do the needle but can't carry on this way.... so need to try it... eek

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I was honestly s**t scared the first time I self-injected . Now it’s just a weekly routine . You can do it and change your life . Yes some of the videos are not very good . You just inject into the middle outer 1/3 of your thigh, and alternate right and left leg .Its very impractical self injecting into your arm . You have a much larger surface area to inject into using your thigh , and you can alternate legs . I use a long needle to extract the B12 , then use a fresh one to inject (1” X 25 gauge ) . This means it is really sharp and has not been blunted on the glass ampoule .

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Does anyone else suffer with being exhausted but then going to bed and not being able to sleep? Is this also a symptom?

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allison687, must tell you that the test for PA , the Intrinsic Factor Antibody test, is extremely unreliable . (About 50 % apparently ) so if you test negative, it doesn’t mean that you don’t have PA . I was lucky . I tested positive first time . Your symptoms should be treated . , no matter what the test outcome .

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I have taken the plunge and ordered some supplies. Hopefully it will help. I broke down at work today because I'd made a mistake. Normally I would think we are all human. Thank you for all the advice and help. Xxx

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Time to change doctors.

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Hi Alison687. We all know how you feel. This is a great place to get the information and the support you need. There are a few folks on this site that can help you with getting the B-12 at cost online. I can attest that self-injecting is very very easy once you get past the first initial anxiety of it all. Keep being your best advocate and don't feel bad about challenging your doctors and getting a second, third, or maybe even a fourth opinion. I hope to feel better soon!!!

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PHONE THIS NUMBER THEY CAN HELP B12 ACTIVE

Nutristasis Unit at St Thomas ' HOSPITAL

02071886815

Search on the internet and you will get their website £40 and get your B12 active test done and you'll have to get a registered haematologist to take the Bloods I got mine done for free by my GP try and stay off the B12 injections for a week or as long as you possible can then take the Bloods send the Pack back by prepaid post. A person at the end of the phone will speak you through everything, 08001214433very easy to do

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Hi,

I would add that results of tests such as MMA, Homocysteine and Active b12 may be affected by recent B12 injections or other b12 supplementation.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

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Well Yes, this makes sense to me. Infact a nurse at the same practice said it's pointless having blood tests because it will show inaccurate levels due to your injections. Unfortunately the doctors aren't budging even though I've said to them my levels have dropped over 200....

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Well, my needles, syringes, swabs etc have come. Just waiting for the actual b12.

Had persistent eye twitch in my right eye for 4 days now - very annoying and yet another symptom. I will be writing a letter of complaint to my GP surgery when I feel less exhausted.

Thanks again for comments

Xx

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I think in my b12 haggled brain I've ordered the incorrect b12. I'm so stupid! I think I have ordered the cyanocobalamin instead of the hydroxocobalamin! I could seriously cry. I hate that your brain doesn't function correctly and you do stupid things like this. Is this going to be ok to use? Because I will have 100 vials soon!!!

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