Levels of B12 in blood still very low after 6 weekly injections

[Paulaw22]

I’ve found out today that my b12 levels in my blood are still only just above the minimum even though I have hydroxybalim every six weeks.

What can I do? Having visual disturbances, migraine , tingling, fatigue, sleep problems,breathing problems and problems feeling hot or cold.

What should I do? Seeing a locus GO tomorrow at my local practice

[Sleepybunny]

Hi,

Would GP consider giving you another set of B12 loading injections or increasing the frequency of maintenance injections?

bnf.nice.org.uk/drug/hydrox...

Are your levels of iron and folate good?

b12deficiency.info/b12-test... see link at top of page about folate and ferritin

I hope you find the help you need soon.

[Gambit62 Administrator]

it isn't that your levels are still low its that your levels fall quicker than most and you need injections more frequently.

After an injection serum B12 levels will be astronomic - they will then decrease over time as your kidneys reduce the excess B12 - how quickly they do this depends on how much B12 there is in your blood - generally about 1/2 of the B12 from the shot goes in the first 24-48 hours.

[christinezzzzzz]

Hi Paula, I feel for you I really do in having those symptoms. I was the same, & doctors couldn't understand my breathing issues but I wasn't getting enough oxygen around my body , balance issues & the blurry vision can be a worry, but you really are not getting near enough B12 to correct your symptoms. I am no expert & the other comments given are sound advice. Folate helps with the conversion of B12. What level is your MVC (mean corpuscular volume) I only ask because although I am told my B12 levels were in range , other blood readings ones more on my red blood cell volume & count were high which showed me to have macrocytic anaemia which shows why I had the same kind of symptoms as yourself. I now inject every other day rather than my 1 a month at the doctors & only after two injections I feel a slight difference. Even the tightness,pain & burning sensations in the underside of my feet are reducing & I am walking better, steadier. All the best to you & I do hope they resolve these symptoms for you, if not you may want to consider doing your own injections. Let us know how your consultation went today. x

[Wowo23]

Hi Paulaw22. I'm so sry you are going thru this. Every 6 weeks sounds like an awfully long time in between injections. I agree with christinezzzzzz. There are so many levels besides b12 that need checking. MCV, folate, instrinic factor and rbc. All these have to do with PA. I have high MCV and instrinic factor and anemia. Because of these levels, i take weekly shots. It took a few months of regular injections to help the symptoms. Plz talk to your doc, get other levels checked and get a more frequent injection plan

[Paulaw22]

Doctors won’t give injections less than 12 weekly normally and I can’t do it myself. Saw a locus doctor at my surgery as I had to go in straight away as my levels had dropped to 245! He said he will give it me every 4 weeks if he has to.

I only have my bloods done prior to my injection so there shouldn’t be anything left of the B12. I’m not sure about the levels of iron in my blood I will ask him when I go after Christmas.

PA is surely when your intrinsic factor is very low surely, not high?

B12 dificiency is when your not taking enough food in with B12. My intrinsic factor was extremely low so I had to have a loading does then 12 weekly injections

[Paulaw22 in reply to Paulaw22]

I lack intrinsic factor so I cannot convert B12 from food at all! I have old fashioned PA my GP said technically I shouldn’t be here. My levels have constantly only been just over 300 for the last 6 years. I cannot take iron tablets as they just lay in my stomach and I get symptoms of severe infection.

I’m going to the hospital in February so I will ask them . As with Christinezzzz my breathing is problematic but I don’t think I could have Hydroxibalim less than four weekly? The locum GP is thinking about giving me the other B12 injection in between as it doesn’t hang about the body as much as the one we are given in the UK