Is this low?

[Plucky1976]

I've been receiving injections 3x per week for three months now and my level 3 days after my last injection was 1300. Is that low?

[Gambit62 Administrator]

its difficult to say but it does seem a bit low for just 3 days after a shot - how were you feeling at the time?

serum B12 isn't a test that can be used to manage a B12 absorption problem after loading doses - you need to go by symptoms

[Plucky1976 in reply to Gambit62]

I tried going down to two days a week instead of 3 as I was feeling better but had a return of a couple symptoms so I decided to go back to the 3 injections per week. At one point all of my symptoms were gone but that only lasted a couple of weeks and one or two pop up for a few days and then go away. I have read that people have very high numbers after only 6 injections and I don't understand why mine are only at 1300 since I get them so often. I guess I was just hoping I wouldn't need them that often for this long. I'd feel better knowing it was definitely a b12d issue as I've never been tested properly other than my b12 being low and the injections helping symptoms. Id rather take the injections than not I just don't understand why I still can't go longer than 2 days without one even though I'm over 1000.....sigh

[Gambit62 Administrator in reply to Plucky1976]

B12 is a very individual thing - does seem as if your body does get rid of B12 very quickly - some people just do. You may find it useful to look at this rather old poll

healthunlocked.com/pasoc/po...

I find that my symptoms come back within 24 hours of a shot but manage to keep my levels where I need them using sublinguals and nasal sprays so I don't have to spend all my time pricking myself with needles.

[Plucky1976 in reply to Gambit62]

I have tried the sublinguals (2500) in between injections. Other than a burst of energy it doesn't seem to do anything for my neuro symptoms. The pricking is getting on my nerves lol. I just hate to think I will have to do that forever.

[Drumstix]

Morning Plucky11966,

I am in exactly the same situation in that I wrestle with needing to inject every other day. I have tried to go longer but it just doesn't work for me and it's hard to be doing this 'alone' with no guidance from the medical profession, who all seem to think we're all cuckoo! But...there are a huge number of people out there within PAS who are the same, and many have to inject daily. I see it as a scale; we're all different and have different causes of this deficiency, and to hugely differing degrees. So one person might need to inject daily (or more even), but the next person might be fine on monthly or even three monthly injections. It's a scale and my own place is every other day, this is where I get my life back, and no Doctor who doesn't know the first thing about B12 is going to stop me taking control of my own health. I see it as being lucky that I can at least take control, with the support of the PAS and their fantastic support and information. A lot of work is going on behind the scenes and I think that in 10years time it will all look very different? I really hope so!

Listen to your body and your inner self, you know you best.

I'm not medically trained, this is only my own take on my situation, but I hope it can help. Certainly you are not alone in any way, there are lots of us!

I would recommend going to your local meetings and talking to others. I found that quite a revelation and a massive confidence boost.

Good luck my friend!

Drumstix

[Plucky1976 in reply to Drumstix]

Thank you! The only reason I know I'm not cuckoo is because of awesome support from people like yourself! It's so discouraging when I tell yet another specialist what my situation was and the first thing out of their mouth is "that has nothing to do with b12.....there is something else going on." So frustrating that it used to make me second guess myself. I just don't understand how they don't see that it works.

The only issue I have with injecting every other day is that it does make me extremely tired for a portion of that day after the injection. However, I feel alive again so it's a small issue in the grand scheme of things!

Btw, thanks for the suggestion about a local support group. I'm wondering if we even have one here but I am definitely looking into it!

[Drumstix in reply to Plucky1976]

Hi there Plucky11966,

I totally understand what you're saying about the 'specialists' just not getting it. My GP said there was no way my symptoms could all be down to B12, I ended up being under haematology, rheumatology, gastroenterology, cardiology and neurology! How much has all of that cost the NHS!? I have duly gone along to all of the appointments as instructed by my GP, and with the exception of cardiology who I do actually need, all of the others have told me that B12 has nothing to do with my symptoms. The worst part is that by the time I saw most of the specialists, after months of waiting, pretty much all of my symptoms had entirely gone after self injecting regularly! So there is no-one who I personally have seen who understands or believes that B12d can do so much damage. They just all think I'm off my trolley! This is all too common for many members. I actually feel incredibly lucky that my neuro symptoms were all reversed as they were pretty grim, so no one is going to tell me to stay off B12! I think I was lucky that I was onto it before the damage became permanent, and that is entirely down to the support of the PAS. Without this resource I would never have gotten this far, or found the courage to go for it. I will say too that if I come off the injections or try to go to monthly then they do quite quickly return, so I know what I need.

I hope that you do have a local group as I have found mine to be wonderful. If not, then maybe a neighbouring county might have one?

Re the injections making you tired....it might just be worth playing around a bit with the time of day you inject? Everyone is different, but I have found that if I inject in a morning, then I'm wide awake that night when I should be asleep. But if I inject at night, then I sleep well and am wide awake when I should be; the next day! But that is just me...and I only find that with subcut, if I do intramuscular then the time doesn't seem to matter to me, but might be worth trying a different time??

All the best

Drumstix

[Plucky1976 in reply to Drumstix]

I will try injecting later in the evening. That might work actually! My anxiety is biggest complaint. It was so bad that I had to start taking a prescription but I'm taking lowest dose possible. When I told my internal med doc that all I wanted to do was sleep he wanted to up my med as he said I needed a stronger dose. I told him I wasn't at my 6 week mark yet for full effect so I would wait until then. I come to find out my iron was on the low normal end so I started taking an iron supplement and I'm so much better. I'm glad I didn't up my dose as it wasn't necessary but I believe I've been deficient my entire life and it took up until my 41st year for everything to come crashing all at once. I still got some minor muscle twitching but nothing in comparison to what it used to be like. It makes me cringe thinking about how sick I was. I actually had to think about breathing. So crazy!

[Drumstix in reply to Plucky1976]

I can relate to having to think about breathing! When I get up in a morning my chest is very heavy every day and I do breathing exercises to 'lift' it. It always returns but often not until evening and is always there the next day. I've had this for a year now and it hasn't killed me yet so I'm calm about it now. This is the single one thing that B12 hasn't changed at all for me so I suspect in my case it's a separate issue.

Have faith in yourself Plucky11966, you are not cuckoo and absolutely not alone!

😃