B12 frequency & levels

[HBerry]

I am curious to know those of you who take weekly or daily injections of B12 and have been for a longer period of time (6 months plus), what are your average levels? I have been taking injections weekly for about 4 months and my levels are at 1800. My doctor says that she wants me to go to once a month. I convinced her every 2 weeks. She also said that she doesn’t want it to get over 2000. Not sure why? Are your levels high and you still feel like you need daily or weekly injections? Should I trust the numbers?

[Nackapan]

I'm on 2 weekly and numbers were high. (B12 done by lab from earlier request put in too soon so computer initiated it) 1500 + . I had an injection after a week last as feeling so ill again. I thought go by symptoms. I've nothing else ongoing medically (to my knowledge) as it must otherwise get confusing as symptoms can overlap.

I thought results weren't that accurate and just said above a certain number

Most will not know ad they are not supposed to be done! Or needed when on regular injections.

My Gp asked if I wanted levels checked though? ? They go by numbers. I wasn't challenged when I simply said wouldn't that be a waste of time.

[HBerry in reply to Nackapan]

Thank you for the response. I live in the US and it appears that doctors are just not up to speed on this. I thought I would give it another try to go every 2 weeks. I’ve already done this once and we switched back to once a week. My next scheduled shot is Wednesday. As of today my symptoms are inching back. Mainly in my lower legs and overall fatigue. I honestly believe that I should be getting shots twice a week and I know my GP will never do that. For some reason she is stuck on once a month. I have a degenerative disc in my lower spine and migraines but other than that I healthy. Nothing else on my bloodwork points to anything. I eat healthy, don’t drink anymore, gave up caffeine walk daily and lost 45 pounds. I’ve been doing everything I can I just need a doctor that understands.

[wedgewood]

I also have weekly injections of B12 , and have done for the last 3 years .

I self-inject because my GP would not let me have more than one injection in 3 months, in spite of numb feet ( diagnosed as idiopathic) terrible dizziness and confusion . I do have diagnosed P.A. ( positive to Intrinsic Factor Antibodies ) My Active B12 ( I don’t know my serum B12 ) is

300 pmol/L, which is as far as the measurement will show . So I’m off the scale !

If you have read the paper produced by the Dutch Stichting B12 Tekort and the B12 Research Institute you will know that you cannot overdose with vitamin B12 ( look under “pinned posts “ on the right )

. This does not apply to some other B vitamins . Doctors often do not know or acknowledge this .My doctor told me that too much b12 was toxic . Couldn’t tell me how much or point to any proof .

If you find that you really need to inject more often than the doctor will allow , you may feel you need to self - inject to keep symptoms at bay . If this happens , you can get help on this forum as to how to do this .

[HBerry in reply to wedgewood]

Thank you for the response! I had already previously mentioned self injection to my doctor. She was fine with that but still seems to think once a month is enough. I live in the US and I think that may be the ‘standard’ here. Seems arbitrary to me. I may have a steep uphill climb with trying to convince her that I need injections at least once a week. Did your GP test you for intrinsic factor or was it a specialist? I think I would like to know this.

[wedgewood in reply to HBerry]

My GP didn’t test me for PA . I had very low serum B12 , but she thought it was normal , and sent me on my way . I felt so very ill that I consulted a private GP , who tested me ( positive to Intrinsic Factor Antibodies ) I was lucky , because 50% of the time , PA patients can get a negative result , but do actually have PA .

I am sure that you can have a test done by a private laboratory , ( we can here in UK ) but you will need to have a venous blood sample taken before you send it to the lab. But bear in mind it is notoriously unreliable if you test negative ( but not if you test positive !) Hope this helps you ! Best wishes.

[HBerry in reply to wedgewood]

Yes, I have heard that it may be difficult to get the proper diagnosis for P.A. even after the test. The way I think about it is that I have been taking oral supplements all along and I do not see any improvements with just them. It’s got to be an absorption issue. I have an appointment with my GP tomorrow so hopefully I can make her see the light. Thanks again!

[Gambit62 Administrator]

well your GP is woe-fully unaware of how an injections works if they don't want your levels to get over 2000 because they will be well over 2000 everytime you have an injection and then fall as excess is removed by kidneys but how long this takes can vary and for some it can actually take a year or more - but that doesn't mean they are okay during that time.

Serum B12 tests the amount of B12 in your blood. It doesn't test how well B12 is being use in your cells and having high B12 levels can affect how efficiently B12 gets from your blood to your cells.

Repeated testing isn't recommended by the BCSH guidelines because the normal range for serum B12 just doesn't apply after injections

onlinelibrary.wiley.com/doi...

- the upper limit of the normal range is totally useless. If your levels come back low then that is significant and means you need more frequent injections to avoid periods of deficiency and the damage that will do.

The best thing you can do, is what you are presumably doing, go by symptoms

[HBerry in reply to Gambit62]

Thank you for responding! Yes symptoms are my guide. I had previously tried going to once a month a couple months ago but I only made it 10 days before symptoms returned. At that point we switched back to once a week and now after a blood test of 1800 she wanted to go back to once a month but I convinced her to inject at least every 2 weeks. I am currently 12 days without my last injection and I can feel some symptoms returning though not as severe as last time. I think if a specialist (hematologist?) would be able to confirm my diagnosis than my GP would get on board. I live in the US so I believe the science behind B12 deficiency with neurological symptoms is lacking. I was functioning fairly well with once a week injections, however if it were up to me I think twice a week would be my preference. I know my GP would never agree to that.

I feel like I’m doing everything I can do on my own. I changed my diet to mostly whole foods, lost 45 pounds, walk daily, refrain from alcohol and caffeine. All my other bloodwork levels are within range. Hopefully I can convince someone to listen. So frustrating! Doctors would rather put you on antidepressants than a harmless vitamin.

[Cherylclaire Forum Support]

My levels, since having injections, has always been >2000 ng/L - I think this is only vague because the upper readable limit is 2000ng/L for the lab machine used. This is where I'd expect it to be. Now that this has been established, my GP has not checked it since, as there is no need. She is not worried and neither am I.

Back in 2016, when it was discovered that I was B12 deficient, my B12 level was 196ng/L. With a lower range limit of 197ng/L, I was very lucky, in that I didn't have to get worse to get treated. In some areas, the lower range limit is a lot lower.

Unfortunately, I got a lot worse after treatment started, but this seems to be fairly common. Now, finally, slowly, improvements appearing, but unless I inject frequently, they don't last. I now self-inject every other day and GP is aware of that, and knows why I do it.

I hope your GP is taking note of your symptoms and whether you are feeling better/worse. Wishing you well.

[HBerry in reply to Cherylclaire]

Thank you for your response! My B12 levels were at the lowest 196 too. I think because of my symptoms my GP requested the B12 blood test. I’m glad she did because I knew nothing of it. I thought they were testing for this during my annual physical but apparently not. I wouldn’t have known to check for this anyway. I was highly ignorant of what vitamin deficiency can do to your body. Who knows how long I was deficient. My bloodwork is now all within range (had low vitamin D too) so trying to find a proper diagnosis has been tricky. I will say that once I heard that I was B12 deficient and did symptom research nearly all the symptoms were a match. I am open to hearing other doctors diagnosis but I do believe that B12 is helping so why stop what works, especially if there is no harm in doing so.

[deniseinmilden in reply to HBerry]

Exactly! x

[Cherylclaire Forum Support]

It is hard work trying to find out where your balance is: B12, folate, ferritin, vitamin D, thyroid.... and can take a while before it gets better, no matter how hard you try to eat and drink the right things, stop eating and drinking the wrong things, exercise, don't overdo it etc etc. So you are already doing well if bloods are good. Well done- that took me an age to get right.

I think recording symptoms is really important: list them and record daily frequency and severity. It will help you to recall things when asked by GP or consultant - they love a specific date, don't they ? It might help as well if your short-term memory is, like mine, appalling. You might notice a pattern emerging relating to when injection is given. Better still, you might notice gradual disappearance of certain symptoms ! Sometimes, I just consult my previous diary just to make myself feel like I'm getting somewhere with all this.

[HBerry in reply to Cherylclaire]

That’s a good idea. I have trouble remembering to make note of daily symptoms. I need to make it a priority. I just made note of the last few days. I have an appointment with my GP tomorrow so I hope my last few days notes will help convince her to go back to weekly injections. Thank you!

[Cherylclaire Forum Support in reply to HBerry]

Any luck there ?

[HBerry in reply to Cherylclaire]

Yes, thank you! I was able to at least temporarily go back to once a week injections. Thank you for that as I have begun the slide into previous symptoms.

I have further confirmed that my GP is unaware of anything other than the numbers on the page. She stated that beets have the highest concentration of B12 available and recommended them as a source. Seriously now!

I need to find a good neurologist as my last didn’t appear to have the time to discuss all my symptoms. The medical field in the US is appalling. Hopefully I find one that listens to my symptoms so that I can begin experiencing with the frequency of injections that works best for me.

[Cherylclaire Forum Support]

Frightening, isn't it ? Here in the UK, our Health Minister promoted broccoli as a good source of B12. You really couldn't make this stuff up !

I met a good(ish) neurologist once: he listened to me pour my heart out, sent me for a brain scan and electric nerve testing and the only reason I said "-ish" was because he ended by saying "You seem to have a really good case, but I really don't know anything about B12 deficiency, so I would suggest you go back and repeat what you told me to the haematologist" - so there you are; a neurologist who admits to knowing nothing about B12 ! At least admitting it, I suppose.

At some point during the consultation, he suddenly out of the blue asked me "Do you yawn a lot ?" and I smiled and said "Yes, yes I do.." - then we both went off track, and I never got to hear what he thought about that, which is a shame because it felt like a nearly-eureka moment !

I know now that this is called "air-hunger" - can be a B12 deficiency symptom; mine is gradually going, but returns if I do too much. It's not like ordinary yawning, more like involuntary overlapping noisy gulping - making heads turn, especially at the supermarket checkout queue. For some reason, it makes people smile, so really not the worst thing !