What to expect?

[AmyG6500]

Hi folks, well thanks to this forum and Martyn Hooper, I found a private doctor who is happy to do a therapeutic trial of B12. He wants to see me weekly for 3/4 weeks and then he will teach me to self-inject.

So, I've had my first dose. No ill effects except for spots. How long does the fatigue and brain fog take to ease? Anything else I should expect? The doc thinks I should feel better within 3/4 shots and wants to know this is the right diagnosis before he sends me off to SI.

[clivealive Forum Support]

"How long is a piece of string?

We are all different and a lot will depend on how long you have been B12 Deficient.

It is not uncommon for some symptoms to appear to get worse as the B12 starts repairing the damage done to your nervous system due to the deficiency so please don't worry too much. The same with the spots - hopefully they will stop coming.

Do you know your Iron and Folate levels as these work together with the B12.

Do you know the cause of your deficiency?

I'm not medically trained but there are others on here who will be able to give you good advice.

[AmyG6500 in reply to clivealive]

OK, I'll look up the iron and folate levels. They were in range but then so was my B12. Hence no NHS treatment and a therapeutic trial.

[AmyG6500 in reply to clivealive]

Hi clivealive my folate was 11.9ug/L (4.00-20.00ug/L) What am I looking for on the full blood count for iron? I am prescribed ferrous sulphate anyway so it's probably quite high.

This is a therapeutic trial of B12 as the serum B12 test was high in the range. I have PA in the family and almost all the symptoms. (I actually did the survey on Dr Chandy's B12 site and scored 100%) Also, discussion with Martyn Hooper led me to think trying B12 with a private doctor and then SI would be worthwhile.

So I suppose I'm saying I don't know the cause of the deficiency but my GP has diagnosed CFS and washed her hands of me, even though I took in the new guidelines. (She did also test for thyroid, diabetes and coeliac, all clear, unless of course all of them have unreliable tests like the serum B12 one!)

[Cherylclaire Forum Support]

Great to have some cheery news. Best of luck, Amy. Hopefully, the spots will calm right down given time, and you can enjoy all the benefits.

I had a loading dose initially of 6 in a month: the fifth one was a turning point, the sixth obvious general improvement: quality of hair, skin (except for the spots that is) mouth and gums- and comments from others about how well I looked.

Some symptoms that I did not realise were symptoms disappeared (although come back when low, so I now use these as indicators re B12 levels - eg: splits at corners of my mouth).

Progress on some things seems to be quite fast, others seem to take a long time: it helps me to record progress, so I can see what is happening even when progress is gradual. Keeps you positive. If you do decide to make a chart or keep a symptoms diary, you don't have to show it to anyone else if you don't want to (leave a column or two empty, in case you discover a symptom or two)- some GPs might welcome the info, others might find it obsessive !

[AmyG6500 in reply to Cherylclaire]

Hi Cherylclaire , That's a good idea. I'm already in the habit of writing other things down because I know I won't remember them. x

[Sleepybunny]

Hi,

doc thinks I should feel better within 3/4 shots

It can take some people a long time to show improvements especially if they have been untreated for a long period of time.

[AmyG6500 in reply to Sleepybunny]

Thanks Sleepybunny , that's good to know. I will find something on the PA society website about it I expect and I can show the doc that. He has great respect for Martyn, which is a huge help.