Just a question?

[RJGFiona]

Hi I am a week into my loading doses for a B12 deficiency and I have been told I will be in them for life due to not being able to absorb B12 naturally. Can I just ask there are alot of posts about people who inject themselves and I can't help but wonder why. Have they been diagnosed with a deficiency of just doing their own thing? Also is this forum global or just the UK? Sorry for all the questions but it will help me understand the forum more.

[clivealive Forum Support]

Hi RJGFiona unfortunately there are many doctors who either have a "lack of knowledge" about B12 Deficiency or they stick rigidly to the guidelines regardless of whether their patient's symptoms need more frequent injections and it is these folk that self inject.

Hopefully you will not have a "one size fits all" doctor.

This is a pretty "worldwide" community as we have questions from Australasia, North America, Canada and European countries and you are welcome to ask as many questions as you wish although at this time of night there aren't many of us around in the U.K.

How are you coping with the loading doses? Don't worry if some symptoms appear to get worse before they get better -it is quite common.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

[RJGFiona in reply to clivealive]

Hi thankyou for your reply. I go for my fourth loading dose today and so far I don't feel any worse and I think I have a little more energy.

The information on the forum is very helpful, also concerning as the medical profession seem to underestimate the severity of the symptoms.

[LtAngua52]

Hi.

I've found doctors know very little and don't want to learn more! I had to fight to get injections at all, and fight again to get them every 6 weeks as my neurologist recommended. However, they start wearing off after 3 weeks so I self-inject in between. Many people find they have to do that because of the level of medical ignorance surrounding b12 deficiency. It does take a while to start to feel better, particularly if you have been deficient for a long time.

It's a choice between taking the steps of self-injecting and get well, or follow a doctors advice and stay ill. It can be scary at first, but so worth it. I wish you the best of luck.

[RJGFiona in reply to LtAngua52]

Hi thankyou for your reply. Sounds like you've had a terrible time to get listened too.

I fear my GP is going to be abit like this, which concerns me as I don't want to feel any worse.

I hope you continue to feel well x

[RJGFiona]

Hi thankyou for your reply. I'm sorry you've had a battle on your hands with your GP. I hope you are feeling better with the injections. Can I ask what symptoms you had/have neurologically? I have visual disturbances, poor memory it's like a permanent brain fog and coordination/balance problems which I hope the injections will help with. x

[pitney]

Hi RJGFiona, I could not get by on the bi monthly injections that I got from my GP and he refused to do it monthly so I now self inject every month, still get some symptoms but they are less intense and my nausea has improved greatly

Hope you start to feel better soon and best wishes to you

[RJGFiona in reply to pitney]

Thankyou x

[Callo56]

HiRJGFiona, it can be scary when you're first diagnosed - I found it a relief that I finally knew why I was feeling as ill as I did and that I wasn't losing my marbles!!! It's true there are many many GPS out there who know next to nothing about B12 deficiency /PA but don't lose hope, there are some who listen and are willing to learn. I have a great, young GP who will read any articles and information I provide (this site is great for guiding you to articles, books and websites that contain the information you need).

Good luck!

[RJGFiona in reply to Callo56]

Thankyou x

[Miss-guineapig]

I have not long finished my loading doses. I live in Scotland and have a great GP. From what I read, a lot of people in other countries, mainly America self inject. I also get my own injections done but only because I am a trained nurse/health visitor and it saves an appointment with the practice nurse. My GP is fine with this so long as I inform the practice so my records are up to date. She writes the prescription when required however the majority of people in U.K. As far as I am aware will get their jabs in the surgery. I actaually feel well for now xx

[RJGFiona in reply to Miss-guineapig]

Hi thankyou for your reply, the forum makes sense now. I am glad you are feeling better I have my 5th loading dose tomorrow and all though I'm still tired at least I'm not falling asleep 😁 I asked the nurse what my B12 level was and apparently it was 70 she said they treat patients from 115 or below. Hopefully I won't have any issues x

[Miss-guineapig]

That's a great start, wishing you well x

[Ryaan]

Doctors stick to the guidelines of the country. In UK it’s 6 loading doses over 2 weeks then 1 shot every 3 months, which is not enough for a lot of people so we resort to Self Injecting.

For example I need 1 injection every 2 weeks because symptoms start to return in 3rd week.

So your Doc will go according to the guidelines of that country.

The forum is worldwide but treatment depends on the guidelines of your country for your Doc. Most likely that’s what he will follow.

Make sure your Folate and Ferritin levels are good as you need this for the B12 to work properly, so make sure you’re not deficient or on the low side.

[RJGFiona in reply to Ryaan]

Thankyou that's very helpful 😁