Hello. I have having Vitamin B12 injections for a few years. I am a senior (& carer). I have an underactive thyroid & Sjorgren's syndrome (both which cause me to be tired). Yesterday I had a letter from GP surgery to say that some patients who were on Vit B 12 may be able to just have them twice a year or discontinue and replace with tablets bought from chemist or supermarket. I am one who has been identified as someone that would benefit from a trial off this injection. A recommended blood test in 6 months time to check that I am in the normal range. if I wish to discuss further, to ring for a telephone appointment with the nursing sister. When I was originally diagnosed, I was told that my body would not absorb the vitamin from tablets. Can this decision for this trial be forced on me, do I not have to agree ? Grateful for advice.
Vitamin B12....do I have a say ?? - Pernicious Anaemi...
Vitamin B12....do I have a say ??
Hi,
Are you in UK? I am going to assume you are. If you are elsewhere then some info below may not apply.
I am not medically trained.
Do you have a PA diagnosis (Pernicious Anaemia)?
If yes, then I suggest you contact PAS (Pernicious Anaemia Society) as soon as possible. Best to phone. You would need to be a PAS member to get support. Costs about £20 to join for a year. They have a lot of experience in supporting people who have had their injections stopped.
I think PAS would be very interested to hear from you about this letter soon as there may be many others, including PAS members who are affected by it.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone so messages can be left. May take a few days to get a response.
PAS support groups in UK
pernicious-anaemia-society....
Blog posts from Martyn Hooper's PA blog about supporting people whose injections have been stopped.
martynhooper.com/2016/09/23...
martynhooper.com/2016/04/24...
If you do not have PA diagnosis, do you mind me asking why you are having B12 injections?
B12 Deficiency Info website
B12 Deficiency Info blog post about help if injections being stopped.
b12deficiency.info/blog/201...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Lots of useful B12 info in link above.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
"letter from GP surgery to say that some patients who were on Vit B 12 may be able to just have them twice a year or discontinue and replace with tablets bought from chemist or supermarket"
The only reason to discontinue B12 injections is if the cause of the B12 deficiency was temporary. Pregnancy and a temporary dietary change are two temporary causes I know of.
If you have a PA diagnosis, treatment is for life and stopping treatment may lead to risk of neurological damage. There are other causes of b12 deficiency that require lifelong B12 treatment.
PAS library section on website has a leaflet "Treatment is for life" , access for PAS members only.
pernicious-anaemia-society.... See Page 1 of leaflets.
"some patients who were on Vit B 12 may be able to just have them twice a year or discontinue and replace with tablets"
UK b12 documents make it clear that oral b12 tablets are only recommended for dietary B12 deficiency and even dietary deficiency requires b12 injections if neurological symptoms are present.
I am not aware of any research in UK that recommends reducing B12 injections to twice a year. If I got this letter, I think I would ask in a letter for a copy of the research/ guidelines that recommend this...as far as I know there aren't any in UK.
"When I was originally diagnosed, I was told that my body would not absorb the vitamin from tablets"
The GP who originally diagnosed you made it clear that you have an absorption problem in the gut.
Recommended UK B12 treatment for B12 deficiency without neuro symptoms
6 B12 loading jabs followed by a jab every 3 months.
Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms
A B12 jab every other day for as long as symptoms continue to improve then a jab every 2 months.
As you can see, UK recommended treatment is not 2 jabs a year.
Uk b12 treatment info can be found in BNF, NICE CKS, BSH links
I suggest reading all the following UK B12 documents.
UK B12 documents
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
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
Challenging GPs
Some GPs find it difficult to cope with assertive patients. My preference was to put queries about treatment along with supportive evidence eg symptoms , relevant family history, extracts from B12 documents into a brief as possible, polite letter. In UK, my understanding is that letters to GPs are filed with medical notes so are a record of issues raised. In my opinion, letters are harder to ignore.
"Can this decision for this trial be forced on me"
I don't know. If I was in this situation I would be writing a letter to GP pointing out that the treatment suggested was not the UK recommended pattern of treatment and why was I being asked to take part in a trial of a treatment pattern that was not in UK guidelines.
If I had a PA diagnosis, I would be speaking to PAS as soon as possible.
The cynical part of me suspects a cost-cutting exercise.
Other help
1) Local MP may be of assistance if you are being denied NHS treatment you are entitled to.
parliament.uk/mps-lords-and...
2) Some UK forum members have been helped by B12d.org
Books
B12 books I found useful
"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. I gave my GPs a copy of this one.
"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.
If finance is an issue, then most UK library services will have a copy of at least one of these that can be reserved.
Consequences
The consequences of untreated or inadequately treated b12 deficiency can be very serious.
Is your GP aware of the risk of neurological damage if B12 treatment is inadequate eg SACD?
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See Page 2 of articles
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Help for GPs
1) There is a section on PAS website for health professionals. They can join PAS for free as associate members. Perhaps your GP would be interested.
pernicious-anaemia-society....
2) PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment"
pernicious-anaemia-society.... See Page 1 of articles.
I'll add more to this post if I think of something so check back later.
More B12 info in pinned posts on this forum
Hi sleepybunny I wonder if you can possibly give me some information.. after fasciculations started in my calves the morning after a workout at the gym (first time i had been!) sciatic type pain and burning in both thighs.. twitching and cognitive problems i suffered for 2 years i had many clear tests and scans emg's was sent to physio stretching my tight muscles for months the doctor then found I had low b12 ( level205) I asked for previous print outs over last 5 yrs of blood tests and my b12 was always under 300 but was never treated.. I started loading dose of hydro jabs last novemher and am now on one every 2 months.. theyl prob stop them some point as i have no anaemia and believe the use of lansoperazol ,omoperazol ibuprofen and a gall bladder removal lowered my b12 even more. I also sometimes take jarrows methyl b12 (1000) between my jabs however my pain has gone unless i do anything strenuous like gardening Imy muscles ache like mad after..I now also have some weird feelings in my toes which scares me..and I still have odd twitches and still have the fasciculations in my calves.. i have terrible anxiety because all this scares the hell out of me in case theyve missed something does this all sound like b12 to you even though i have b12 supplements?.my levels are now 2000 my folate is normal apparently so should i still meant to be taking that as well anyway?.. how often should i take methyl b12 and should i take it every day? I have no clue..my doctor is no help...I insisted to have another emg at kings London in 2 wks in case it's caused neuropathy in my toes I am so frightened since this started I've always been so healthy and used to garden all day but if im out there long my muscles ache and twitch the next few days... sorry this is so long but im at my wits end with worry with every new sensation ...thankyou x
Hi cuddlywuddly
Just a brief reply as this is someone else's thread. I'd suggest starting your own thread on the forum as you will get more replies this way.
To post your own thread..
1) Click on "My hub" tab.
2) Click on "Pernicious Anaemia Society" under Communities.
3) When you are on PAS page, click on "Write" tab at top right of page.
A lot of the symptoms you describe can be found on lists of B12 deficiency symptoms.
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member to use this)
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
I'd suggest reading through the links, especially the UK B12 documents in my posts above.
I am not medically trained.
I will do that..I'm a learner here ...thankyou kindly for your reply and advice x
Hi decoupagelady a wiser person than I have posted this previously:
Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same
If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.
If you agree to being tested "in 6 months time" that suggests you are not going to have any more injections between now and then because if you do that will "skew" the result.
I am not a medically trained person.
Thank you for your reply clivealive.
further to my response on your TUK post
The study/trial sounds as if it is fundamentally flawed anyway.
The PAS did some studies in the past and found that on average patients who have had injections need to maintain their levels at 1000 to remain well (sorry can't remember if that was pg/mol or ng/L). So, that means that most people actually need B12 levels well above the normal range.
Using a B12 serum level to monitor a B12 absorption problem post injections is at best difficult and, at worst, bad science and logic. Serum levels measure the amount in your blood, they don't tell you what is happening at the cell level. There are a few tests that can give an inidcation of what is happening in cells and tend to be good at helping to identify functional B12 deficiency (high B12 but not enough at the cell level), but there are some who question whether these really tell the full picture.
I suggest that you ring and ask for an appointment with the nursing sister and ask for a whole lot more information about the trial. Point out that whoever is running the trial should be following research ethics which would mean that patients involved should be giving informed consent but this does not appear to be happening. Until it does happen I would refuse to take part in the study - and if you are aware of other patients who are in the same boat I would suggest you advise them to do the same.
This is a link to the MRC (Medical Research Council) website and the area on ethics and the area on GDPR considerations which may be useful
and this is what the BMA has to say about consent to take part in medical research
decoupagelady , Sleepybunny Gambit62 clivealive
I don't know if this a new initiative to save money but I was talking on the phone yesterday to someone who had B12 deficiency due to taking Protein Pump Inhibitors. She has been told that her B12 injections were being stopped. She is still on PPI. She notices the difference the B12 injections make and gets more tired before her injection is due.
Is there anything that says those on PPI should have injections for life. I found on the NHS web site. "If your vitamin B12 deficiency isn't caused by a lack of vitamin B12 in your diet, you'll usually need to have an injection of hydroxocobalamin every three months for the rest of your life."
carrer999 - whilst PPIs can inhibit uptake of B12 they are often prescribed for symptoms that could actually be caused by a B12 absorption problem - such as low stomach acidity which, like high stomach acidity, results in acid reflux etc - so actually make an underlying problem worse.
I think your friend needs to find out precisely why her injections have been withdrawn when the general protocol would be for B12 injections to be for life unless the cause of deficiency is known to be dietary. There might be a case for injections not to be needed if the cause was h pylori infection which has now been treated.
I believe it is all about cost cutting myself too.
Hi,
Link about PPIs.
pulsetoday.co.uk/clinical/c...
I suggest your friend looks at the links about "Unhappy with Treatment (UK info)" in one of my posts above. There may be info on the leaflets that come with her medication about potential side effect of B12 deficiency when taking PPIs.
NICE guidelines Gastro-oesophageal reflux disease
nice.org.uk/guidance/cg184/...
Might be worth posting about PPIs as a separate thread carer999 so you get more replies.
You could also search PAS forum for other posts about PPIs. Just put PPIs in search box on PAS page.
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