B12 not improving

[Purplegirl2]

so I’ve been on twice monthly b12 injections and then my doc will order a blood test to check my b12 levels. It will still hoover around 300 usually. Tbh I find it weird that she keeps retesting my levels now that I’m already supplemeting. In the past even after doing weekly injections for like 2 months I still can’t get above 450 mg. My doc thinks anything below 500 is too low. My brain fog is very bad & depression is worse. I just want to feel improvement but I can’t figure out a good regimine. Is there something else I should be supplementing with along with getting the injections that I might be lacking in that is impeding my ability to benefit from the injections?

[Scott-rock]

she shouldn’t retest the level, it’s also possible that you need more regular doses.

[Nackapan]

Level is very low on regular b12 injections .Ask for more

[MrsTuft]

you need more frequent injections and then time to heal.

[Lurcher-lady]

Not a medic but did they test folate?

[Wwwdot]

Hi

You are not getting B12 regularly enough for it to make a difference.

Keep a journal of treatment, symptoms activity. This is your evidence.

Look to self inject every other day until your symptoms go or don’t get worse.

If you can afford to or have health insurance (through work perhaps) go see a P.A. consultant- I see one in Cambridge.

As advised get your folate, iron and vitamin D levels checked as B12 healing your damaged body will need these and other things known as “cofactors” to do the repairs.

Read up on P.A. so you know more than your GP - not difficult as they know very little on the whole. Martyn Hoopers books are easy to read and digest.

Best of luck. And I hope you start to feel better as I know from experience how debilitating it is to struggle with B12 deficiency.

[MrJustatip]

Hello Purplegirl12. I was just checking my email and noticed your post here. You mention how your levels hoover around 300. Is that the number from your lab test, where they tested your B12 and it came up as 300 for the level? I'm not sure just where it was, but I've read several times that anyone 60 years old and older needs their levels to be 1000 or more. Don't know your age, but even those 30 or 40 need levels of over 500. thanks

[Purplegirl2 in reply to MrJustatip]

thank you. I’m quite young (only 21) and I’ve struggled with this for 4 years already. My docs highly suspect it is autoimmune since I eat a normal diet and because of my age. My IF antibodies were negative but my parietal cell antibodies were positive.

[Wwwdot in reply to Purplegirl2]

Purplegirl

You are the same age as my daughter - it’s hard at your age “causing a fuss” but you must.

You sound level headed and it’s important you persevere to get the treatment you need to live your life to the full.

This forum will support you all the way - the members here have helped me turn my life around and the same will happen for you too.

🤗

[Purplegirl2 in reply to Wwwdot]

Thank you so much for your words of support. I appreciate it so much. Navigating my PA challenges felt so lonely and frightening before I came across this forum.

[Sleepybunny]

Hi,

Articles on Testing B12 during Treatment

Some details may be specific to UK or Netherlands.

pernicious-anaemia-society....

stichtingb12tekort.nl/engli...

Have you got recent results for folate, ferritin (and other iron tests) and Vitamin D?

[prillyb12]

I just increased my B complex and my methyl folate because I'm starting to think my B-12 injection every 2 weeks isn't enough. Can you experiment on your own? I believe I'm feeling a difference, an improvement and it's only been 2 days.

[Purplegirl2 in reply to prillyb12]

it’s been hard for me to self inject but I can at least get started on weekly injections again. But ideally I would like to option to self inject 2x or 3x a week. Anything to get my life back. It’s such a struggle I’ll be honest, it’s affected my coursework and ability to function.

[MrJustatip]

Hello Purplegirl12, I don't know about your situation of course, but depending on your age, anything under 7-800 (lab levels) is suspect to me. My levels were 301, to begin with June of 2022 and I was dx as being folic acid def. Testing lab level is important, but since 3-7 is considered acceptable levels what if your labs keep coming back as 350? it will say you are in the ok range. (????). I now take Vit. B12 sublingual, B12 tablets, also use B12 patches and occasional shots. It's helping but according to everything I've read, it takes from 6-12 months to recover back to a healthy state. Sooo frustrating. My wife and I both are struggling and are irritable with each other more than we have ever been - ha ha). Anyway, you have to stay on top of the B12 thing for yourself, the doctors only do their jobs. Research, research research. That's what I do. One tip; we try to NOT use any vitamin products from China, (very bad for you). Good luck. Mr. J a T

[Purplegirl2 in reply to MrJustatip]

Thank you Mr J. Since this post I’m feeling much more confident in my PA care. My doctor is amazing and does it all for me now (making sure I’m getting prescriptions, teaching me how to self inject, switching from intramuscular to subcutaneous…). I feel cared for and it’s such a relief not to have to figure out my care all on my own. Hematology was definitely the right choice for me, neurology was not good at managing my PA. I still keep up to date on my research (grateful for my university email that gives me access to all of the journals). I have enough evidence at this point that it is definitely PA (it always drops after a period of infrequent injections like from 350/400 down to the 200s if I don’t get it enough. And the antibody test also confirmed the diagnosis. My goal now is to get my b12 as high as I can this year (and maintaining it) so I can feel better.