B12 injections not effective any more :(

[Jein]

Hi everyone, I have been on B12 injections for over 20 years and always found myself so tired the two weeks leading up to the injection (3month injection) and full of energy when administered, the last 12 months I’m so tired tired in morning when I wake, tired at work, I go straight to bed when I get home sleep 16 hours or more, sleep all weekend and I’m not depressed or anxious. I was thinking maybe it had something to with being 49 year old female...

if anyone can advise how to reapproach this wit my Doc

[clivealive Forum Support]

Hi Jein you are certainly not alone with this dilemma.

Are you actually diagnosed with Pernicious Anaemia?

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms per the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

With neurological symptoms you are entitled to have injections at least every eight weeks according to the above and it's possible you may need the even more frequently.

Sadly many doctors believe that "one size fits all" and you may have to battle it out with him/her as I did six years ago with my own to get an increased frequency that met my need in the run up to my next scheduled injection.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

Do you know what your Folate level is?

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I'm still "clivealive" and over 75.

I wish you well

[Gryphon1 in reply to clivealive]

Which folic acid is best or should I take methylfolate confused!! Could you maybe advise which you take as you seem well informed and helpful and I have dealt with this for along time and I appreciate your helpfulness on site. I have no one to take to doctors and am agrophobic which makes it difficult to get tests and results and fight for help.

Thanks

[clivealive Forum Support in reply to Gryphon1]

Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember. These can be bought cheaply over the counter at chemists or supermarkets but have a word with the pharmacist (or your doctor) for advice on dosage.

Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk. In addition, some cereal products in the UK are fortified with folic acid.

Remember I'm not medically trained.

[Gryphon1 in reply to clivealive]

What is the brand and which online is best, like I said I am agrophobic so cant get to pharmacy for advice bad enough trying to talk to doctor on phone cant get results or help from them, nurse has to come out to give injection every 8 weeks but says she doesnt know about folate and b12 links told me to ask doctor!!? Going around in circles, just about got iron tablets from GP as they said they don't prescribe anymore. Symptoms not getting any better with just injections so thought your posts seemed possible problem.

Thanks again

[clivealive Forum Support in reply to Gryphon1]

You can order the ones I take from Healthspan online and they deliver free in the UK in packets which fit through the letterbox, Folic Acid 400μg tablets cost £8.45 for a year's supply (360 pills).

googleadservices.com/pagead...

I hope this helps you with your difficulty.

[Gryphon1 in reply to clivealive]

Thanks very much for all your help will look into it now. Thanks for getting back to me so soon very helpful as always. I hope it helps as I am not good at getting help from GP glad you're here . Thanks again

[Gambit62 Administrator]

Jein, has your thyroid been tested?

symptoms are very similar to B12 deficiency and something like 40% of people with PA go on to develop hashimotos (auto-immune thyroidosis). Ask for a full thyroid panel (not just TSH but T4, T3 and antibodies). Post results on TUK

healthunlocked.com/thyroiduk

the fact that you have had a significant change in response really suggests that there is something else going on.

other possibilities would include vit D, iron and diabetes.