B12 deficiency

[Megsgems]

Hey, hope someone could please help or provide me with advice. A little while ago I started my b12 injections with the doctor, I am now due my 12 week injection in early january. I am feeling very drained, tired, teary and not myself. I know the nurse said previous when I am due I will start to flag. But I literally feel so week, currently taking iron tablets too as prescribed. Is anyone taking anything else to help? Or have your doctors given u anything to help with feeling such low energy? It's really getting me down x

[Nackapan]

My daughter has the same problem. Her bloods were done to check everything else

She just couldn't make 12 weeks

Has asked for 8 weekly

Has been given 10 weekly

Will keep pushing for 8 weekly.

Everyone needs a different frequency.

As beginner 1 says.

The aim is to have your b12 injection before symptoms return.

I find keeping a record helps.

Initially I was so ill I went back onto every other day until no more improvement as per bnf/nice guidelines.

Talk or write to your surgery

I hope things improve for you

[fbirder]

Ask for 8 weekly jabs.

If your doctor says they aren't allowed to do that then it means they don't know that the recommendations in the British National Formulary were changed a few years ago, from 'Every 3 months' to 'Every 2 to 3 months'. Ask them to check the BNF.

[Sleepybunny]

Hi,

"A little while ago I started my b12 injections with the doctor"

"I am now due my 12 week injection in early january"

Did you have any neuro symptoms prior to starting treatment?

If yes to neuro symptoms, does your GP have a list of them?

See symptoms lists below.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of Peripheral Neuropathy

nhs.uk/conditions/periphera...

BNF recommends following treatment pattern if neuro symptoms present

A B12 loading injection every other day for as long as symptoms continue to improve then an injection every 2 months.

There is no set time limit on how long the every other day loading jabs can continue if neuro symptoms present. Could be weeks even months as long as improvement in symptoms continues.

If no neuro symptoms present, BNF recommends following pattern

6 B12 loading injections over 2 weeks then an injection every 2 - 3 months.

You appear to be on the treatment pattern for those without neuro symptoms and I suspect you only had 5 or 6 loading injections.

If you have not been given the appropriate treatment pattern, be prepared to fight for it.

You might be able to persuade GP to restart loading injections if neuro symptoms are present.

B12 deficiency that is due to diet is sometimes treated with low dose cyanocobalamin tablets.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxycobalamin

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

See section on treating those with neurological involvement in above link.

The info in BNF link above will be in Chapter 9 section 1.2 of the BNF book your GP will have on their desk or shelf.

NICE CKS

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

Local Guidelines

CCGs/Health Boards/ NHS hospital trusts in UK will have their own local guidelines on treatment/diagnosis of B12 deficiency.

I recommend you track down the local guidelines for your area and compare them with BSH, BNF and NICE CKS links.

I hope you are not in the UK area below as it has a poor reputation on this forum.

b12deficiency.info/blog/202...

I suggest any queries about treatment/diagnoses are put into a brief, polite letter to GP.

My feeling is that letters to GP are harder to ignore. Keep copies of any letters written or received, Can be useful to have a paper trail in case there is a need for formal complaint in future.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about writing a letter to GP if under treated for b12 deficiency with neuro symptoms.

Vital to get adequate treatment as being under treated increases the risk of permanent neurological damage.

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....

Have you considered joining and talking to PAS who can offer support and info?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Have your folate levels been checked recently?

See BSH guidelines link in this reply for more info about folate deficiency.

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, more B12 books, B12 websites, more B12 articles/documents, useful blood tests and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I have written other very detailed replies on the forum that you might find helpful.

Some people on the forum find that NHS treatment is not enough for them and they resort to self treatment.

I am not medically trained.

[Hil101]

I agree with everything written already.I have had to circumvent the NHS. I pay £35 for a B12 only injection or £45 for a B12 ‘cocktail’ in a central London private clinic. I have also topped up with B12 high dose patches. Doctor David’s vitamin B12 complex patches off eBay have helped. I find I am much better when the injection is the whole B12 cocktail but that may be just my body (I have 4 auto immune conditions including gastritis and coeliac disease)

I hope you get more frequent injections

[Narwhal10 in reply to Hil101]

Hi Hil101,I hope you don’t mind me asking and I understand if you don’t want to share but what autoimmune do you have ? This year has been a real eye opener for me. 😊

[Hil101 in reply to Narwhal10]

Coeliac disease, dermatitis herpetiformis, collagenous microscopic colitis and autoimmune gastritis. All are confirmed by biopsy.

[Narwhal10 in reply to Hil101]

Thank you for sharing. 😞poor you

[Hil101 in reply to Narwhal10]

Vastly improved by B12 plus other B vit injections! Far more effective than the corticosteroids the consultant wanted me to take

[fbirder in reply to Hil101]

Patches cannot work (unless you put an electric current across them, or the patch consists of dozens of tiny needles filled with B12).

[Hil101 in reply to fbirder]

So are you saying that nicotine patches, the morphine patches the NHS uses etc cannot work? I understand that we certainly absorb through our skin and here is the NHS stuff on morphine patches which I’m sure they wouldn’t be dispensing if they didn’t work:nhs.uk/medicines/buprenorph...

I was diagnosed with gastric atrophy such that I could not produce intrinsic factor. Within days of sticking on patches, I began to feel better. This was not a placebo!

[Hil101 in reply to Hil101]

To continue, the NHS website tells you precisely how much morphine the patches dispense. I can tell you they do not have tiny needles in them, nor are they dispensed with batteries!!

[fbirder in reply to Hil101]

Nicotine and morphine are small molecules that are lipophilic (like fats). B12 is a large molecule that is hydrophilic (likes water). To cross the skin a molecule needs to be small and lipophilic.

Here is a picture showing the size difference between B12 and nicotine.

b12science.com/B12Science/D...

Here's what the science says -

Physical and chemical properties have a decisive influence on the penetration of molecules through the skin. The most important of these seem to be :

- liposolubility (usually maximal when log Pow is between +1 and + 2).

- molecular weight (molecules with low MW pass more easily).

ec.europa.eu/food/sites/foo...

Vitamin B12 deficiency, which may result in anemia and nerve damage if left untreated, is currently treated by administration of cyanocobalamin via oral or intramuscular routes. However, these routes are associated with absorption and compliance issues which have prompted us to investigate skin as an alternative site of administration. Delivery through skin, however, is restricted to small and moderately lipophilic molecules due to the outermost barrier, the stratum corneum (SC).

A transdermal route for delivering cyanocobalamin holds promise when enhancement techniques are incorporated. Therapeutically relevant doses could be delivered through skin with the use of iontophoresis and microneedles.

mdpi.com/1999-4923/3/3/474/htm

Iontophoresis means putting an electric current across the patch. Microneedles is obvious.

If just slathering B12 onto a sticking plaster worked than none of use would need injections.

[Hil101 in reply to fbirder]

Very interesting to read that, why doesn’t it say that on PAS website? That would be helpful. I had also taken some sublingual liquid B12 at the same time as the patches but the consultant told me that I could not have absorbed it because of my stomach atrophy. I therefore assumed it was the patches that brought about the improvement and the consultant did not say that patches could not work. It would be helpful if consultants knew their stuff. Meanwhile, I cannot get NHS injections due to having had a private one which raised my B12 levels above normal - despite my diagnoses!

[Hil101 in reply to Hil101]

The consultant is only interested in prescribing me strong corticosteroids to damp down the symptoms of vitamin B deficiency