Advice please

[Star-crossed]

Hi everyone have any of you tried the B12 patches? Just wondering before I go down the self inject route.

Thanks

[Sleepybunny]

Hi,

Yes I tried patches but they did nothing for me. Sub lingual (under the tongue) lozenges help a bit but the best effect for me is from injections.

Have you been diagnosed with B12 deficiency?

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

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).

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

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...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

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.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

I am not medically trained. More B12 info in pinned posts on this forum. I have written other more detailed posts that may be of interest if you search for them.

[Star-crossed in reply to Sleepybunny]

Hi, yes I was diagnosed last year with PA had loading shots then every 3 months. GP will not budge in giving me them more frequently even though I have neurological symptoms hence I thought I would try the patches. Thanks for your reply x

[wedgewood]

I tried patches when I was desperate , and I’m sorry to report that they did nothing at all for me . Our resident scientist , fbirder , explained that the B12 molecule is so large that it’s more or less impossible for it to be absorbed by means of a patch . I also tried the sprays and sub-lingual lozenges , to no avail . Injections are the most efficacious method to get b12 into your cells . Self-injection is cheap . If you are needle - phobic , there is a device that will help , but it costs about £90.00 . Best wishes .

[Star-crossed in reply to wedgewood]

Thanks for the advice, where do you get your B12 and needles from? Fed up of trying to talk to the GP they just don't listen x

[wedgewood in reply to Star-crossed]

I get my VitaminB12 ampoules from German online Pharmacies. Either bodfeld-apotheke.de or versandapo.de. These sites are in German, so you may need a translation app . Some people use Google chrome . Search for Rotexmedica B12 depot . if you want 1mg of b12 in 1ml . Today they cost €6.66 for a packet of 10 You can buy as many as you like , and the courier will cost €9.00

If you want 1mg x 2ml. search for Hevert Today’s cost is €11.48 for 10

The above prices at Bodfeld-

Versandapo.de Prices Rotexmedica €8.49 for packet of 10 .. Pack of 100 €52.89

Hevert €12.49 for pack of 10

I have to say that I prefer the 1ml ampoules because there’s less to inject and Rotexmedica is cheaper .

You can pay with PayPal .

For needles , syringes, swabs, sharps box ( for disposal of needles) go to medisave.co.uk

You will need to decide whether you want to inject “sub-cut” ( subcutaneously ) or I.M. ( into the muscle ) I use I.M. into the thigh muscle which is nearest the surface at the middle outside third of the thigh . ( google all this) But some people use sub-cut . I use a long coarse needle to withdraw the b12(1 1/2 x21g - the needle touched the bottom of the glass and makes it blunt , so I then change to a finer, shorter needle - 1inch x 25g I always use a 2ml syringe .

[Nackapan]

There has been a recent post about them.have a look. Im injrction stays the most effective and sure route if absorbtion problem.

[Sleepybunny]

Hi again,

"Hi, yes I was diagnosed last year with PA had loading shots then every 3 months. GP will not budge in giving me them more frequently even though I have neurological symptoms"

I recommend that you consider joining and talking to PAS (Pernicious Anaemia Society) soon.

PAS membership

pernicious-anaemia-society....

PAS Contact details

pernicious-anaemia-society....

It is best to phone if needing individual advice. Contact form is okay for general enquiries.

In some cases they can intervene on behalf of PAS members by writing letters eg in the case of someone who is not being treated according to the guidelines. Even if they cannot intervene in your case, they can at least point you to useful info to pass to GPs etc. If you ring, you are likely to speak directly to the chair of PAS, Martyn Hooper.

PAS members can sometimes arrange for their GPs to speak to PAS.

Help for GPs

1) Might be worth drawing GPs attention to the section on PAS website for health professionals. They can join PAS for free as associate members.

pernicious-anaemia-society....

2) PAS library section on website has some useful leaflets/articles that some on forum have passed to GPs eg

"An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society....

PAS support groups can be a source of useful info eg helpful GPs in area. There are 13 PAS support groups in UK. There may be one close to you.

pernicious-anaemia-society....

I am sadly not surprised that you have been driven to consider self treatment. It happens to many on forum but there is still a chance that with support from PAS and info from this forum you may be able to convince your GP to consider more frequent injections.

I often suggest people struggling to get adequate treatment should consider writing a brief, polite letter to GP that has evidence that backs up request for more frequent injections .

In UK, my understanding is that letters to GP are filed with a patient's medical records and are therefore less likely to be ignored than info passed on verbally or on photocopied info.

Letters to GP could include symptoms, blood test results, relevant personal and family medical history, extracts from UK B12 documents. Keep copies of any letters you write.

I sometimes sent a letter to GP before next appointment to give them the chance to do their own research. I always requested that a copy of the letter was put in my medical file.

UK B12 treatment

See BSH, BNF , NICE CKS links in my other post for info about UK B12 treatment.

Recommended UK B12 treatment for B12 deficiency without neuro symptoms is...

6 loading B12 jabs over 2 weeks followed by a jab every 2 or 3 months.

May be worth pointing out to your GP in any appointment or letter that BNF guidance changed recently. It used to say that maintenance jabs should be every 3 months, it now says every 2 or 3 months for those without neuro symptoms. Your GP may be using a copy of BNF that has not been updated.

Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms is...

A B12 jab every other day for as long as symptoms continue to get better then a jab every 2 months

There is no set time limit on the every other day loading jabs so they could continue for weeks even months as long as symptoms continue to improve.

You appear to have been put on the treatment pattern for those without neuro symptoms.

I suspect you only had 6 loading jabs rather than weeks or months of every other day loading jabs.

If this is so then you may be able to persuade your GP to consider repeating loading doses this time using every other day loading doses.

It's possible that your GP genuinely does not know that the treatment pattern for those with neuro symptoms is more intensive, may be because they have not read the relevant section in BNF book.

Local Guidelines

Some parts of UK are using local guidelines for B12 deficiency that have not been updated for many years. May be worth tracking down the guidelines for your area and comparing them with national guidelines eg see BNF, BSH , NICE CKS links. It could explain why your GP is reluctant to consider more frequent jabs.

Another possibility is the cost implication of more frequent jabs. Injectable B12 is cheap but nurses' time to inject it, is expensive. If you think cost is a factor in the decision not to increase your jabs then may be you could ask to be taught to self inject which would save GP surgery money.

Unhappy with Treatment (UK info)?

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. This may be relevant to your situation.

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/

Consequences

Is your GP aware that there is a risk of permanent neurological damage in people who are not treated adequately for their B12 deficiency.

May be worth drawing GPs attention to this info.

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...

Some UK GPs may find it hard to cope with assertive patients so be prepared for GP/patient relationship to come under strain and have a back up plan eg another GP surgery.

Might also be worth taking someone supportive with you to appointments. Even better if person is well-informed about B12 deficiency.

It's my impression that GPs are sometimes kinder and more willing to listen if a witness is present.

I'll add more if I think of anything so check back later.

I hope you get the treatment you need.

[fbirder]

Patches did nothing for me, which isn't surprising as the skin is made to keep things like that on the outside. Or, if they're supposed to be on the inside, to keep them on the inside.

If B12 (or any important chemical) could easily pass across the skin then we would end up leaching most of our B12 out every time we took a shower.