Hi all
Hope you’re as well as can be at this time.
I have monthly b12 injections via NHS.
I’ve been supplementing in between SI using ampules from Gold Pharma.
But - I don’t feel I get same relief from symptoms from Gold Pharma B12. I really don’t.
Does anyone else use B12 from Gold Pharma and can comment on its quality?
(Haemotoligist insists there’s no reason for my B12 def and has all but convinced me my symptoms are all in my head. I’m wondering if this is too 😢).
Sharon x
People on this forum use German online pharmacies ,and mostly buy Rotexmedica B12 depot ( depot indicates that it is Hydroxocobalamin, not Cynocobalamin ) Supplied in packs of 10 - 1mg x 1ml ampoules I have heard that this German manufactured B12 is sometimes used by the NHS.
Several German online pharmacies supply UK . The pharmacies most often used are — bodfeld-apotheke.de. and versandapo.de , but there are others .
Thank you so much - I will try one of these in future. Seems only delivering to Germany right now.
Just had a quick look on their site under hydroxocobalamin and don't see any reason why the Hevert Depot ampoules shouldn't be just as good as any used by NHS surgeries as they appear to be 1mg (1000ug) in 1ml hydroxocobalamin.
One of the products offered
VITAMIN B12-DEPOT-INJEKTOPAS 1500ΜG 10 AMP,
are the stronger formula Pascoe brand ampoules I use, which are 1.5mg in 1ml - although I see they only offer them in tens and I usually buy mine in the bigger boxes of 100.
I guess you must be thankful that your surgery stores theirs properly - some people complain about the opposite problem and some of us suspect that they might not be stored well (though saying that, my emergency ones I keep in my car always work OK when I use them up from time to time.
I doubt it is "all in your head" - a stupid thing said all too frequently - but if it really was, there's no harm in it if it works!
Normally placebo works by being more effective the "worse" (by perception) the administration route so injecting yourself should work better, not worse, if it was all placebo!
If they are so convinced that it is "all in your head" and you are inventing a condition that is relieved by sticking needles in yourself, they ought to be taking your mental health more seriously and referring you for a therapeutic course of (much more expensive) psychology/psychiatry.
My cat also needs B12 injections and that's not "all in his head" - or mine! Just vets take a more pragmatic approach.
Good answer deniseinmilden . I have used Hevert in the past , but find Rotexmedica more convenient as they are 1ml instead of 2ml . Also Hevert are more expensive .
Ah, I beg your pardon - I was being careful to check the active ingredient was 1mg and I overlooked the carrier quantity (2ml)- thank you for pointing it out: I'll try to remember for future reference.
That might explain the lesser positive response - if Sharon75 was to use a 1ml dose from each ampoule then it would only be delivering half the active ingredient.
As always your suggestions on product and suppliers are the best.
Thank you! Keep safe! x
I’ve noticed that sometimes people get confused when they see 2ml , and think that’s 2mg
I'm sure it's not a sales ploy!
And I'm not cynical (or sarcastic!) 😜 x
Thank you. I know deep down it's very real but when you hear something often enough you do wonder. I'm lucky I have a sceptical but sympathetic GP. Also know too many of us who suffer are treated with the same doubt over our symptoms.
Hi,
"has all but convinced me my symptoms are all in my head"
Sadly there is a lot of ignorance about B12 deficiency in the medical profession including among haematologists.
I was diagnosed with hypochondria, psychosomatic symptoms, ME/CFS which is seen as a mental health condition in my part of UK, Fibromyalgia plus a few other things. I had had B12 deficiency in the past for which I was not treated correctly.
I kept begging for a trial of B12 injections because I had many typical symptoms including neurological problems and I discussed possibility of b12 deficiency with all the specialists I saw. I was refused a trial of B12 injections on several occasions because most of the more recent B12 tests were within normal range.
When it got to the point that my spine was affected and I had dementia type symptoms, I felt I had no option but to self treat. It took months before I saw an improvement (I'd been ill for over 15 years) but now my friends comment about how far I've come in terms of recovery. Some symptoms appear to be permanent though.
"Haemotoligist insists there’s no reason for my B12 def"
I have never found a definitive reason for why I had severe B12 deficiency symptoms but looking back over my life I can see many risk factors for B12 deficiency. I do not have a PA diagnosis.
If you have the symptoms of B12 deficiency, with other reasons for symptoms excluded, you should be treated.
UK documents
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Have your doctors considered these possibilities?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Diet?
Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12?
If yes to B12 rich diet then any B12 deficiency is more likely to be due to an absorption problem in the gut eg PA, Coeliac plus other conditions.
Have you been tested for PA (Pernicious Anaemia)?
PA test results are not always reliable; it's possible to have PA with negative test results.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
No support meetings during pandemic.
Blog post about how PAS can support PAS members seeking PA diagnosis
martynhooper.com/2017/06/24...
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Coeliac Disease?
NICE guidelines Coeliac Disease (UK document)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
H Pylori infection?
patient.info/digestive-heal...
Exposure to Nitrous Oxide?
gov.uk/drug-safety-update/n...
Internal parasites eg fish tapeworm?
If you want to know more, search online for " B12 deficiency parasites".
Crohn's disease and other gut conditions?
Damage to terminal ileum (the part of the gut where B12 is absorbed)?
I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
Please be aware that many UK forum members have had their NHS B12 injections stopped/delayed/frequency reduced or swapped for oral tablets during pandemic. There are many recent threads about this on the forum
If this happens to you, come back to the forum for support.
I am not medically trained.
Wow - thanks for all this information! Yes, tested negative for both celiac and PA. But positive for H-pylori a couple of years back. But yes, I have a very good and animal rich diet.
What's interesting is that my mum, brother and aunt also B12 deficient...
You've had an awful time Sleepybunny but I'm glad you've taken the decision to SI and feeling some benefit!
Hi again,
"Yes, tested negative for both celiac and PA"
As I said above, PA tests are not always reliable so it's possible that you have PA even if you tested negative on Intrinsic Factor Antibody test.
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK.
If you're in UK, did your GP follow this process?
PA can run in families and you mention other relatives with B12 deficiency.
Do any of them have a PA diagnosis and does your GP and any specialists know you have relatives with B12 deficiency?
Perhaps you can pass on some of the B12 info onto them and refer them to some B12 websites.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
B12 Deficiency Info website
B12 Awareness (US website)
B12d.org holds support meetings near Durham. Not during pandemic.
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
More UK documents/articles
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed last year.
pernicious-anaemia-society....
NICE CKS
cks.nice.org.uk/anaemia-b12...
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 does not show updated BNF info.
"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.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
More about Coeliac disease
Coeliac disease can also run in families.
When you had tests for Coeliac disease, did you have the two tests I've listed below?
1) tTG IgA which checks for an antibody to gluten
2) Total IgA which checks which patients have IgA deficiency.
UK GPs sometimes forget to do a Total IgA test. I suggest you check your medical records for which tests were done.
People with Coeliac disease who have IgA deficiency will have a negative result in the tTG IgA test because their bodies cannot make the antibodies to gluten that tTG IgA test looks for.
Patients with IgA deficiency will need alternative tests for Coeliac disease. See link about Coeliac blood tests in my other post.
Before you had blood taken for Coeliac tests, did your doctor tell you to eat plenty of gluten in more than one meal per day for several weeks before the blood was taken?
One reason for a negative result in tTG IgA test is that patient was not eating enough gluten before blood taken and therefore not producing enough antibodies to gluten to register a positive result.
UK guideline state that patients who have negative Coeliac tests but have symptoms consistent with Coeliac disease should be referred to a gastro enterologist.
"But positive for H-pylori a couple of years back"
H Pylori can be quite persistent, are your doctors sure it has been eradicated?
Did doctors follow the NICE treatment pathway?
pathways.nice.org.uk/pathwa...
Treatment affected by impact of pandemic?
If your treatment or your relatives' treatment had been affected by impact of pandemic, have a look at following information.
GPs' decisions can be challenged.
PAS ( Pernicious Anaemia Society) should be able to pass on useful info
There are useful leaflets/articles that PAS members can access in library section on PAS website eg "Treatment is for Life"
pernicious-anaemia-society....
Concerns about Treatment?
Concerns about treatment could be put into a brief, polite letter to GP.
In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.
Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
If treatment has been affected make sure GP knows about any neurological symptoms the patients has.
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs
May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.
People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.
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.
If you have neuro symptoms, have you ever been referred to a neurologist?
If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets, I think it is important to keep GP informed.
If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.
Impact of Pandemic
Many on forum have had B12 injections stopped/delayed or swapped for oral tablets during Covid crisis.
Many on this forum have been put in a situation where they have no alternative but to source their own supplies and self inject.
Injections stopped due to pandemic
Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.
From PAS website
pernicious-anaemia-society....
There are lots of comments under the posts as well.
From B12 Deficiency Info website
b12deficiency.info/blog/202...
Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.
b12deficiency.info/blog/202...
Most recent blog posts/news items about stopped injections
From 1st April
b12deficiency.info/blog/202...
PAS statement published 11th April
pernicious-anaemia-society....
Blog post about Covid crisis from B12 Deficiency Info from 18th April
b12deficiency.info/blog/202...
Blog post about e-mail campaign from B12 Deficiency Info from 19th April
b12deficiency.info/blog/202...
BSH guidance
If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice about B12 treatment for doctors to use during pandemic.
PAS news item about BSH advice published 25th April
pernicious-anaemia-society....
Latest version of the BSH advice for GPs etc during pandemic.
Be warned that your GP may not know that BSH have revised their advice within last few days and they may be using an earlier version.
b-s-h.org.uk/about-us/news/...
Click on General Haematology tab in link above
then
Click on BSH Advice on Supplements tab
I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.
There are moves afoot in some areas of UK to make a permanent change to oral tablets.
See link to another forum thread below about treatment in Gloucestershire.
healthunlocked.com/pasoc/po...
Alternative B12 treatment
Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.
At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.
WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.
B12 article from Mayo Clinic
ncbi.nlm.nih.gov/pmc/articl...
Suggests
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable
3) Successful treatment should not be stopped
Symptoms Diary
I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.
You are so wonderful for all you do for people here - and, I have no doubt, in every bit of your life.
It's really good to know you are on our support team as only experiences like yours can drive such a deep level of understanding of what we go through.
Keep safe! x
I’ve just been onto Goldpharma.com website , and I can’t say that I like the look of it —- There are no contact details . You can email them on their own form , But they don’t give an email address , phone number or geographical address . Most of their injectable B12 is the cheaper Cynocobalamin. But they do have some Hydroxocobalamin which is what you get from NHS .
There is no clue as to where they are operating from , it’s all rather clandestine .
Which kind of B12 have you been ordering from Goldpharma ?
There’s a post on this forum a few years ago on the subject of Goldpharma which says that it is based in China and that the B12 is made in Taiwan.
***Update***
Thank you all for taking the time to reply.
The plot thickens…
I’ve only just noticed this batch of B12 I’ve been using is Cyanocobalamin and NOT Hydroxocobalamin.
My partner orders it and injects it. He must have reordered cyanocobalamin by mistake, been using it for weeks and didn’t even realise.
I’ve had a SI of Hydroxocoblamin (NHS one) and within 12 hours my symptoms disappeared and feel MUCH better.
So it could be that cyanocobalamin doesn’t work well for me. We’ve ordered hydroxcobalamin from GoldPharma (others only delivering to Germany due to coronavirus).
Remain dubious about the company (and site) but I will see how the Hydrox works!
Sharon
Cyanocobalamin as opposed to hydroxocobalamin could easily explain the difference and just reinforces how much it so isn't "all in your head"!
They are very real symptoms and you are sensitive and sensible enough to be able to feel the difference!
Give yourself an extra bit of credit and respect. Good for you!
I order from Versandapo.de and self inject. I feel as though the injection doesn’t do as much as (or the same) as when I get my prescription injections here in UK).......I don’t know if that’s the case or if it’s in my head......but it feels like that.
Hello. Your Haematologist is the person who tested you for Intrinsic Factor? Either way I would get a second opinion. If they used that phrase "it's all in your head" you should consider reporting them to your medical board.
ordering B12 ampules 
Delivery time of B12 ampules. 
Report Returning Symptoms to Pharma Co's
B12 ampules enquiry
