B12 Level After 6 Months Without Injection

[Dfthbhjj]

Hi, my GP recently stopped my B12 injections which I have been having every 3 months for the past year as my intrinsic factor test was negative. I had previously asked for a greater frequency I injections because I was feeling like there were some benefits for a short while but these benefits were short lived.

My serum b12 was reasonable last time I was tested but not really high even then. So I've been taking oral supplements she prescribed for me for the last month or so. I can't see how to these will work as before I started the injections I was put on oral tablets but when retested the b12 level had actually gone down, my diet is really rich in meat and dairy (the things I eat too much of really so I'm sure I have an absorbtion problem). the last injection I had was in July and I'm now really struggling, I'm sleeping 12 to 16 hours some days.

I had a head MRI a while back and it showed some areas of the brain that have been starved of oxygen, I'm awaiting a neurologist appointment but was rung by the consultant the other day to ask a few things prior to seeing me. He is going to arrange some more scans before the appointment to give more information. He says it looks like I've had some kind of stroke and the problems I'm getting on my left side (numbness, burning sensations in hand, arm, leg and feet, vision problems, problems with bed wetting etc) are all consistent with a stroke if done kind.

So I guess it may be this in addition to the b12 are causing the problems, there's a lot of overlap between the two conditions. I also get really bad shortness of breath when I do even mild exertion and I have a real problem with hyperhidrosis.

I'm due to have a B12 test again at the end of November, hopefully the level will have gone down enough that she agrees to give me injections again. Does anyone know if I last had an injection about 5/6 months prior to having a blood test if the blood is test is likely to show a reasonably low serum b12? I know once injections have been commenced the serum b12 level is useless, so could my level still be high despite feeling like I desperately need the injection?

The neurology waiting list is about a year but hopefully I'm nearly there now,

[Nackapan]

Ask your doctor to look at the guidelines he/ she has.Once on b12 injections, further testing is not necessary.

Meaningless infact.

So many misinformed doctors are stopping b12 injections from unnecessary bloods done.

Even with a high level it might not reach cell level hence needing high levels of B12 in your blood

Good you are having other investigations.

Meanwhile your b12 injections should continue.

PAS has plenty of information.

NICE guidelines were updated in March.

3 monthly you werec having is the minimum regime .

High levels on injections not seemed dangerous .

If neuro symptoms shoukd at least be 2 monthly.

You know your body and how b12 helps you.

Stopping for 6 months is bound to set you back.

Are your other blood results okay

If an absorbtion problem other things often get deficient.

Ferritin

Vitamin D

Folate

Iron

Are commonly low if B12 low.

Point put the test used to diagnose Pernicious Anaemia only picks up 40-60% .

So even with a negative result if you are responding to B12 injections shoukd NOT be stopped .

No training and the complexity of B12 does not help your cause.

If you eat lots of B12 it's obviously an absorbtion problem.

You know all your medical history to address this .

Or take it into your own hands.

Oral B12 has not worked for you in the past it won't miraculously work now .

Point this out to your doctor .

[Dfthbhjj in reply to Nackapan]

Yes so my ferritin and folate have been consistently low, below the normal range but she has never really addressed this in any way. I don't think I've ever had my vitamin D level tested.

I started to believe all my symptoms are related to the stroke or whatever it may be as she seems to think, but stopping the injections and now having gone 6 months without the fatigue has definitely got really bad again so I'm convinced it must be the b12 that is at least partially responsible for my symptoms.

I said to her about fact that the oral B12 didn't work before, she said oh you probably just didn't take it for long enough for it to work. I think it was three months I took it before, surely if it was going to work that is long enough for it to at least show it some improvement/increase in blood level?

[Cornwaller in reply to Dfthbhjj]

Your GP is quite ignorant re b12. I would decline a b12 test as they are recommended against in the NICE protocols and ask for your b12 injection. If they refuse I would inform that you will be making a claim of negligence as they are not following the NICE protocol.

However the more important thing is you get injections at the frequency you need. If you look through this site there is plenty of details about how many members of the forum manage this type of situation.

Best wishes.

[Nackapan in reply to Dfthbhjj]

Of course. Everything yph say makes perfect sense.

B12 .

You cannot overdose.

It needs to start again .

Once back on B12 Injections then take folic acid.

400 mcg daily is actually recommended by NHS if of child bearing age.

Even if not its a sensible dose .

Low ferritin shoukd also be addressed.

See another doctor .

Keep it simple.

5 worst symptoms since injections stopped

Ask for b12 I jectikns to restart.

Say you've read the NiCE guidelines and don't understand why stopped ect .

Wd all may have other things to be investigated bug meanwhile Eliminate many symptoms with regular B12 .

[Sleepybunny]

Hi,

Sorry for really quick reply as I'm about to go out.

I'm assuming you're in UK. Let me know if you're not in UK.

Have you thought about joining and talking to PAS (Pernicious Anaemia Society)?

Based in UK. They have overseas members.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS support groups in UK/USA/Sweden and Australia/New Zealand

pernicious-anaemia-society....

B12info.com has lots of useful info.

b12info.com/

Letters to GP about B12 deficiency

b12info.com/writing-to-your...

If you're in UK

I left detailed info in this thread which might be useful. It has some links for those struggling to get treatment for B12 deficiency in UK.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

"my GP recently stopped my B12 injections"

Similar stories have been posted recently on this forum.

If you click on Posts tab then search for "Injections stopped" that may show the similar threads.

Will try to add more if I have time later.

I'm not medically trained.

[Gronny]

Hi similar happened to me I was very ill before doctors realised I was b12 deficient had an MRI becyatse i was having terrible migraines along with other symptoms ! The MRI revealed I had had a large bleed but my neurologist said it was not a stroke as my blood pressure was like that of a teenagers. I ended up going private to see what was going on as I had also been diagnosed with fibro ! Turned out my b12 was literally on the floor and he was surprised I was actially walking around ! Has regular Jan’s for 13 years now ! Don’t think I’ll ever be quite the same I’ve still got a few problems but I think some is down to getting older as well! Due to cutbacks a few months ago they’ve decided to stop my jabs coz they said my level was high now ! I really can’t be bothered to fight it so I’m self injecting ! I was topping up anyway! Sorry this ended up long