Advice please.

[beaton]

I'm worried about my daughter. In her late 30s, diagnosed about a year ago with injections every three months. Her next injection is due next week, so not feeling well right now. Is it right that she feels so ill :- Brain fog and extreme tiredness sore lips and headache continually. Last night her heart was going haywire, so much so that she asked her daughter to cook the evening meal and told her if she passed out not to worry. The doctors have told her in the past that they won't change her dose or timing as the more B12 she is given the more the body craves. Is this right? and should she feel so very ill? She's a single mum of four who works full time, so a busy person who can't afford to be so ill.

Thanks.

[Hidden]

Good morning Beaton. Your daughter is very lucky to have you fighting her corner.

There’s tons of replies here saying quite the opposite from these lazy gps who don’t seem to have any interest in learning about these deficiencies and the effects on people’s lives.your poor daughter must be so drained with 4 kids and a job to hold down.

That’s is such inaccurate information to give her tell them to say that to diabetics.The body does not “crave” it the body needs it to function or we die.

Tell her to get her latest blood test results and post them here then the more experienced members can give her the advice she needs,I’m no expert just a fellow sufferer newly diagnosed with p.a who now self injects because of ignorant doctors not doing their jobs properly.

Well done mum for getting her help x

[beaton in reply to Hidden]

Thank you Thrones.

[Hidden in reply to beaton]

Your welcome x

[fbirder]

Tell her to ask the idiot doctor to look at the entry for hydroxocobalamin in the British National Formulary - bnf.nice.org.uk/drug/hydrox...

The recommendations were changed almost two years ago to allow dosing every two to three months, rather than every three months.

She might also like to ask the doctor where it says that B12 is addictive. Because that is total balderdash.

[Woodswefn]

Sack the doctors! The body doesn’t “crave” B12 when it is getting enough. If you are getting enough, symptoms go away!

NHS guidelines are based on cost savings, not on data from clinical practice or research. Initial B12 replacement therapy requires injections of 1mg (1000 mcg) EVERY OTHER DAY until there is no more improvement: up to 8 weeks. After that, individual needs vary. If symptoms return in a week, you need an injection once a week. If they return in two months, you need injections every two months.

You can also get detailed information from an expert retired doctor on the nonprofit website b12d.org. This includes a free book written by doctor, who treated people with B12 deficiency in the UK for 46 years. He had to fight the NHS over and over to give his patients the frequency of injections they really needed. So many doctors and administrators lare ignorant about this.

The blood tests in use now for B12 are terribly inaccurate! This is complicated. There are both inactive and active forms of b12 in the blood. There is no agreed international standard “normal” range. And individual needs vary.

In many cases, diagnosis relies primarily on the doctor’s knowledge of symptoms. I had to read hundreds of pages of medical literature in order to figure out what was wrong with me. I wish I had found Dr Chandy’s website earlier: it would have saved me a lot of time and suffering.

Since I now know more about this than the six doctors who couldn’t help me, I decided to rely on Dr Chandy’s thorough research and experience as my guide. I have been giving myself injections for three weeks. It’s complicated: there is a lot to learn. For example, I felt better for a while, then worse after the first two weeks of injections. I learned that once B12 therapy is started, supplements of potassium and folate may be needed, because all three of these substances work together in some essential body processes. B12 is harmless, but it is possible to take too much of those other two. That is where blood tests will be useful. The book will tell you everything you need to know.

[beaton in reply to Woodswefn]

Thank you Woodswefn. I shall pass all this information on to my daughter, especially supplements, which might help.

[JanD236 in reply to beaton]

Just to mention that information I’ve previously read on this forum suggests that you should not supplement potassium (unless under medical supervision).

Perhaps it’s best to google ‘potassium rich foods’ and obtain it through diet.

I’ve also read that the need for increased amounts of potassium is short lived and applies in the first few weeks only when correcting a B12 deficiency.

[beaton]

Thanks Jan.