B12 levels while on 8 weekly injections

[cec57]

Hi all I’m in the UK and am wondering what your B12 levels should be when on 8 weekly injections.

After loading doses I started on 12 weekly jabs. After a few years I had symptoms again so it was agreed that I move to every 8 weeks.

I started having Symptoms again and my doctor has agreed that if my levels are under 1000 I can move to every 6 weeks.

I had the test and my levels are 428ng/L and my serum folate is 8.84ug/L so I should be OK when I go back to the doctors.

I’m now wondering is 428 low considering I’m on 8 weekly jabs.

I’m asking this as I got the impression that the blood test was a bit of a rouse and that my doc was expecting my levels to be higher.

I would welcome any input on this as I don’t really know that much about B12.

thanks in advance 😁

[charks]

From what you say your GP means well but doesn't fully understand B12D.

You really need levels of 2000+ to make sure you stay symptom free.

Your level of 428 is really low. You need more injections if you want to lead a 'normal' life. A lot of people find they need injections every other day.

However I think you will find it very difficut to convince your GP. Maybe you should consider the DIY route. Like many of us have been forced to do. .

[Gambit62 Administrator in reply to charks]

charks on average patients with PA report that they need to maintain their levels at or above 1000. However, this is an average and as such does not apply to everyone - there are some who need much higher levels and others for whom much lower levels are okay. Symptoms are more meaningful than continuous blood tests.

@cec57 - if you can get your GP to listen then you really need to have B12 injections at a frequency that prevents symptoms returning - if that is two weeks then it should be every 2 weeks though it can be difficult to get GPs to agree to this (and they can get asked questions by pen pushers about the numbers of B12 injections they are giving which can be difficult for them) but if your GP is willing to listen and learn then you may be able to get injections and if they can train you to do them yourself then they don't have to worry about the time of nurses administering more frequent injections.

[Nackapan]

You don't give any ranges.However as your doctorx assumes the level should gr over 1000.

Go fof the 6 weekly theyve offered and monitor your symptoms

It should go on how you are .

I presently have a 2 weekly NHS prescription

[Adsypadsy]

Hi,I was on 8 weekly injections, my B12 level was anywhere between 1500 and 2000 and I was still symptomatic around week 5 or 6. GP not interested in increasing the frequency so I had no option but to SI. I mainly inject on alternate months so on a 4 weekly cycle, and also any time I feel symptoms coming on.

If GP is willing to increase your frequency to 6 weeks, grab the opportunity.

Not sure what reference range your GP uses but I would expect your levels to be much higher on an 8 weekly cycle.

Good luck.

[wedgewood]

Levels are not the most important consideration . It’s symptoms that are the most important criteria . You need injections often enough to keep symptoms of P.A./ B12 deficiency at bay . If you cannot get these from your GP, then you need to self inject . Do not get fobbed off and end up with any irreversible symptoms please.I speak from personal experience. Battling with medical ignorance is exhausting and risky . We are all different and need different regularity of injections . Not the “One size fits all “ approach . Best wishes .

[Hockey_player]

Keep track of how you feel. I was doing injections every 4 weeks, but at the end my toes would start bothering me again. I do better with injections every 3 week. It's normal for your B12 levels to be really high when you are supplementing or injection.