b12 deficiency

[MISSNEATS]

I have just finished B12 jabs and been told nothing more for 3 months but I feel just as tired if not more so. I had these symptoms for 2yrs before Doctors gave me the blood tests and before that I had pins and needles in my head and lost my hair so I am terrified that it will happen again. Where can I buy B12 injections. I returned to the Doctors this week and told him I have memory problems, and numbness in fingertips along with the extreme tiredness and he said there is no connection with B12 deficiency and when I said we I think there is he said its probably age but agreed to more blood tests. I feel so frustrated .

[Jose651]

I do understand. You haven't the energy to think never mind act upon what is happening or not happening in your case.

These injections may take a little bit longer to kick in. Don't give up. But the important thing here is to find the guidelines for GPs (in the BNF book ) on How to treat patients with neurological symptoms. Photocopy it and either bring it,or post it directly to him.

If you can, take someone with you to appointment. If you look on the PAS website you will find the Guidelines there.

Try to be strong Missneats.

Jose651 x

[MISSNEATS in reply to Jose651]

Hi Jose

Thank you for replying. I would never have thought (whilst I can)that so many people suffer with this and that the majority of the time if the doctors listened to us we would not be suffering. I have been looking on line to try and purchase some injections but I am not having much luck.

Neats x

[Softpaws in reply to MISSNEATS]

How about trying skin patches? I was diagnosed this year and also had neuro symptoms but only got 4 loading doses from the doctor and had to go back and ask for a further 2 doses. After that I was told there was no way I could get my injections less than 3 months apart.

I started using patches, sub lingual b12 and multi vitamins (with folic acid, magnesium and potassium) a month after my last injection. I found that using the patches Monday, Wednesday and Friday keeps me healthier and gives me a much better quality of life than just sticking with the injections from the doctor.

Might be worth a try before resorting to self injecting.

Keep well missneats.

[fbirder in reply to Softpaws]

This is excellent advice. Many of us find that the 'normal' frequency of jabs just isn't enough to keep the symptoms at bay. Some are lucky enough to have a GP that can think for themselves and provide a tailored solution, rather than blindly shoving a one-size-fits-all recommendation.

Luckily, many find help in the numerous solutions that don't require going down the route of self-injection.

Softpaws, and many others, myself included, find the patches a great help. These are available from Amazon in two 'flavours' - methylcobalamin and cyanocobalamin. It's generally considered that the methylcobalamin is better as it's the form of B12 that is active in the body. However, I'm trying out the cyanocobalamin patches and, so far, they seem to be working better. But, as is so common with PA, it really does vary from person to person.

There are also sub-lingual sprays, sublingual lozenges and nasal sprays, all of which avoid the problem of non-absorption in the gut.

I would suggest that you select one and try it for a couple of weeks. Keep a diary of what you take, and when, along with your symptoms and their severity. Then maybe try a different format. Repeat until you settle on a strategy that works for you.

It's probably a good idea to mention to your GP what you plan to do.

[fbirder in reply to fbirder]

Damn! Just found out that the cyano patches I got from Amazon are actually methyl.

I guess the reason they seemed to work so well was the fact that they're 5000ug instead of 1000ug.

[Sleepybunny]

"I have just finished B12 jabs and been told nothing more for 3 months"

If a patient has b12 deficiency and neuro symptoms, B12 treatment is more intensive than you are receiving. Scroll down to Management in link below. GPs will have access to BNF (British national Formulary) Info on treatment is in Chapter 9 section 1.2

Some gps are unaware that treatment for B12 defic with neuro symptoms requires more injections. I'm pretty sure someone with neuro symptoms and b12 defic is supposed to be referred to a haematologist. Pins and needle sis normally considerd a neuro symptom.

patient.info/doctor/pernici...

b12deficiency.info/signs-an...

pernicious-anaemia-society....

Symptoms list in PAS library section

Relevant info is also in "BCSH Cobalamin and Folate guidelines". This document cam e out in 2014. I have been told NHS should be following it in my area of UK. Its long. PAS have a summary on their website. I gave a copy of whole document to my GP. In my opinion it's well worth reading.

[brindlebride in reply to Sleepybunny]

What are do you live in??

[Juliehogan]

Hiya have you had thyroid checked? Sounds like you could have under active thyroid. Just a thought might be worth getting it checked. Good luck