2nd load of b12 loading dose

[Ch3ll33]

So i have been suffering with pins and needles in my R hand and R Foot for 3 years now. This last year i now seem to get pain in my hand and foot after ive had the pins and needles. My gp says i have carpel tunnel( which ive had release surgery done in 2012) and plantar fasciitis. Ive seen a neurologist last year (bloods ok for b12) but shes thought is may be sone form of arthritis. However 5 months ago, my symtoms along with headaches and tiredness was really bad. Had bloods done and found my b12 was 94, so had 6 loading doeses. After dose 4 my symptons went and i felt brilliant. However 8 weeks after my last loading dose, my symtpons have come back again and getting numbness in my left arm muscle which has got worse after 2 weeks and now i have pain in my hand. Gp did bloods 2 weeks ago to check levels and they where at 296 and said i no longer need b12 injections. However seen him today because of my symtons and hes wants me on another set of b12 loading doses. And if my symptons go and come back again, then hes referring to neurologist?? I just seem to be fighting

[fbirder]

Ask your idiot doctor if they've ever said to a diabetic patient - "Your blood sugar is fine today, you don't need insulin any more."

Then tell them to actually look at the entry for hydroxocobalamin in the BNF. The one for people with neurological symptoms. The one that says 'Injections every other day until no further improvement, followed by injections every 2 months'.

[Ch3ll33 in reply to fbirder]

Thank you. I can see what your getting at. I rang back tonight to get what my prev levels have been when tested for b12, so nov 2017 was 220, feb19 was 162, june20 was actually 124 not 94 and aug 20, 8 weeks after my 6 injections went up to 294. Im just bit concerned that my symptons have been b12 related but as not been treated due to my figures being over 150 that i may now have permanent nerve damage.

[Ch3ll33 in reply to fbirder]

Can i be PA with figures over 150? Im new to all this. It was a different gp i saw today, than to the one who texted me about my blood results and saying no more needed.

[Singoutloud in reply to Ch3ll33]

You can still have PA with low but in range B12 levels. My intrinsic factor antibody test was positive when my B12 was still (but only just) in range . My doctor actually admitted to being really confused by me being in range but positive for PA.

The bottom of the the range is 180 where I live.

[Ch3ll33 in reply to Singoutloud]

When i went back 8 weeks afyer my last loading dose with my symotons, it was my nurse that wanted me to have the IF test but thatbwas neg. How do you know if you are PA. Ive just rang in sick at work as i cant handle feeling like this and that i have to wait til.the 23 rd fir my 1st dose of my loading injections again. I didnt sleep at all due to the pain in my arm and hand and work with a banging headache. I honeslty fell like im gonna be fighting but dont have the engergy

[Cherylclaire Forum Support]

Fbirder is right - you have neurological symptoms: numbness, pain, pins and needles in hands and feet. The frequent injections are supposed to continue until no more improvement can be gained.

The loading dose, usually a set of 6 injections, is meant to be a fast boost for your low B12 level, to bring it back up - it is not supposed to be a cure.

How does your GP know what caused your low B12 level initially if he hasn't tested you for anything while you were B12 deficient ?

So why would your B12 not return to low levels again, without the injections ?

The cause has not been investigated.

And why oh why was your GP testing your B12 levels over and over - and watching them go down ? It makes no sense at all.

What is the range at which B12 is considered "normal" at your practice ? Does it start at 150 ? Is that 150 ng/L or 150 pmol/L ?

It might help you to ask for a printout of your results.

Even before Covid struck, a long waiting list for a neurologist was the norm- there is no more reason to delay making this appointment than there is reason to see if you will keep deteriorating without B12.

8 weeks after your loading injections, your level is not that much higher than when they first tested you in 2017, and your symptoms are back. Job not done, then !

You have a long way to go yet -and the place to start might be asking for a printout of your blood test results, and asking if folate, ferritin and vitamin D levels were also included. These can also be below range or low within range.

Pernicious anaemia has been found to be present even at "normal" B12 levels. And your level prior to injections was 124.

Good that you are having another set of loading injections, but because of the symptoms you have, these are supposed to continue uninterrupted, until you can no longer get any improvements from them.

[Ch3ll33 in reply to Cherylclaire]

Evening. Thank you for taking time to reply. Yes i rang this afternoon to get my recent levels in the last 3 years ive been having the symptons and i am concerned that my level was 160 in feb 2019 when referred to neurologist and nobody suggested for me to have b12 due to my symptons. So ive gone another 18 months without no treatment and my neurological sympyons have worsened. The numbness in my arm is worse than a few months ago and i cant start my injections until the 23rd. Sorry to ask this and i feel daft. But you stated that due to neuro symtons i should be having intjections unt il no further improvement. I dont understand that bit. Personallybfrom what he was saying, even though they class nornal range 150 (not sure which one) he wants me to be over 500 and more to the 1000. Im woundering if thats why im having the loading dose. But like you mentioned. My levels pre loading where 124 and 8 weeks later was 294. Not much of an improvement really. This gp seems to be the better of the few ive had. Think im gonna have to ring them back 2mz x

[Ch3ll33 in reply to Ch3ll33]

So ive spoke to the same gp as yesterday. Hes not yet convinced its not all down to b12. He said all my levels are fine. He mentioned they dont check for vit d anymore as we live in britian and we sould be taking daily dose of 10mg of vit d anyways. He mentioned that not sure if folate or ferritin is 2.5 and shoukd be 3 and over but just to eat more green beg. Now this wasnt mentioned to me. Its only because i asked. He said he may send me for a xray on spine incase its a nerve pinching but still wants me to have loading doses and see how i go

[Cherylclaire Forum Support in reply to Ch3ll33]

It's more important that you find one that you trust, because I doubt you'll have much luck looking for a GP who is an expert in B12.

Generally speaking, this seems to be what happens:

You go to the GP with fatigue/ numbness and tingling in feet/ memory loss etc and some tests are done. Eventually, the B12 deficiency is found, and you get a phone call to book up 6 injections with the nurse. You have the injections and the nurse tells you you will need to remember to book one every 3 months for life - and that is that !

And for some people, that works out just fine and isn't a big deal.

For some, much more help is needed to control symptoms. This is a problem, because no-one can tell who this will be at the start of the process, because they are still not sure why. GPs aren't taught much about vitamins.

Some GPs dismiss it as anxiety, hypochondria, depression, addiction - and some choose to believe that "something else must be going on", not understanding how devastating a vitamin deficiency can be.

You can see that this could mean involving specialists looking for that "something else" for a long time, leaving the deficiency undertreated - and sometimes leads to misdiagnoses. From this point, you can see why some people do not get a firm pernicious anaemia diagnosis for many years.

Fortunately, some GPs are aware that B12 deficient patients can need more frequent injections. These patients are sent to specialists to look for reasons, not alternative diagnoses.

I think this GP might be one of the good ones. Your B12 has been monitored for years though, and I'm not sure why they waited so long. Why wait till 160 becomes 150 when you can see the direction of travel ?

It looks as if he is aware that your levels should have been be higher after loading injections, and is trying to get them to a satisfactory level .... but then what ? He can't keep making you drop to 150 before treating you.

Does he know that undertreated neurological symptoms can become permanent nerve damage ? This is why the injection regime is different .

Ask the question. I think it's a fair one.

And get that neurologist appointment !

[Hidden]

I don't understand. I found articles on PubMed and heard a few doctors at this point talk about how the B12 blood test is not reliable. One doctor went so far as saying he was taught this in medical school and that the test to get is methyl melanic acid. I believe they can also look at homocysteine and the size of your blood vessels. But that blood test is not reliable!

ashpublications.org/blood/a...

I think the assumption people make is that all tests are good tests. Some of them are terrible.

Also why not treat with B12? Why are they being so stingy? It's cheap. I've never read anything about an upper toxic limit. It's a no-brainer. if it was easy for me to get syringes of B12 I'd be injecting myself right now.

If you felt great after getting B12 injections keep getting them. The way I understand it B12 gets stored in your liver and you can have months or even years worth in there. It just makes sense that it's going to take more than a few shots to get you back to normal.

Sorry, when I read stories like this I just get upset. It's a shame doctors aren't good at medicine.

[Machupa]

This sounds like pernicious anaemia. Have you been tested for that?? The fact the B12 injections helped so much is really hopeful, as more frequent injections might be the answer. Good to see neurologist too so they can rule out anything else. I get a lot of pins and needles/numbness in hands and arms but have pn as well as ME, fibro and other conditions. hope you find the answers. Do get that blood test for pernicious anaemia, then they will accept the B12 injections are for life. x