B12 and receiving loading jabs.

[Spin5]

If you're deficiebt in b12, does it warrant further investigation if you're not found to be anemic?

I'm receiving loading jabs, I have my 4th today.

[Gambit62 Administrator]

there are a lot of things that can cause a B12 absorption problem and each will have different potential consequences so yes it is useful to know why you have an absorption problem.

The difficulty is that PA is the most common cause and actually ruling out PA - with current testing regimes - is extremely difficult. IFA as the recommended test in the UK is prone to false negatives 40-60% of the time depending on the test method - so a negative result is a long way from demonstrating that you don't have PA.

[Spin5 in reply to Gambit62]

Thank you

[Hidden]

Well, you can wait until you start having problems walking. That's always a wake up call.

[Spin5 in reply to Hidden]

What do you mean?

Am I still at risk even though I'm receiving loading jabs, then 2 monthly

[Hidden in reply to Spin5]

I'm not a doctor. I'm just saying, left untreated, low B12 - B12 deficiency can result in complications with being able to walk like a regular human. I can't even jump off the ground an inch. My mind won't let me. It's not something you want to treat lightly. I assume you're from the UK, using the term jabs. Many doctors in the US don't treat the condition as serious unless you also present with anemia. Regardless of whether you present with severe neurological symptoms, such as barely being able too walk with no other known cause. They give you grief when you ask for a simple blood test to confirm your suspicion, even though it is well documented. It's simply not what they're taught in medical school, therefore it is not real to them.

What I mean, is you have to fight to make sure you're being treated properly sometimes. In the US, that usually means finding a doctor that will accept new research that proves their original thinking is wrong. I don't know how your health care system works, but if it allows you the choice to find a doctor that is more patient-centered, then maybe you can try that route. If you can't, then I would print off all the research you can find that supports what you believe you're personally going through and keep presenting what you find to your doctor. Whether they accept that or not is up to them.

I'm not anemic and several doctors won't even order a simple B12 test, even though in the distant past the same doctors have ordered blood tests that showed macrocytosis, simply because I am NOT anemic. My original post was inward frustration being projected towards doctors that refuse to treat this condition because you are simply not anemic. Other blood tests I have like a CBC, show some ranges particularly high or low. ALL which can be a sign of low B12. But that's the only confirmation I can get of my suspicion. Still not enough proof for the doctors I currently have to personally suspect low B12. So what I originally meant is actually DON'T wait until it is too late. Fight for your health if you have to. HTH

[Gambit62 Administrator in reply to Hidden]

thanks for clariying.

funnyhaha - have you tried to get tests done for homocysteine and MMA - these are two chemicals that will be raised if your body doesn't have enough B12 to recycle them but they can also be raised for other reasons - notably folate deficiency in the case of homocysteine. If not may be worth asking if tests can be done as clarifiers.

[Hidden in reply to Gambit62]

I tried with my GP and Endocrinologist both. I'm still waiting for an appointment with one of my old neurologists. He's usually very open to trying things (like SIMPLE blood tests - haha). I had Cervical Dystonia for over 20 years and I found a current clinical study using Ampicillin as a molecular chaperone to possibly treat Dystonia. Here's the article if you want to read it. sciencedaily.com/releases/2... I showed it to him and he prescribed the medicine. I am allergic to Penicillin, so I had to take the first pill in the emergency room, just in case. Long story short, about 6 months later I woke up one morning and the dystonia was totally gone and has never come back - been over 3 years now(crossing fingers). Coincidence? After 20 years? BUT and this is a big BUT, that's exactly around the time I slipped into psychosis for over a year and a half. No one could tell us why. Still can't. Persecutory delusions, seeing things that weren't there, no "voices", but always felt I was being given a message that I was supposed to somehow figure out. I was seeing order in random things all around me, making close connections where seemingly none occurred, putting up "color stations" around the house. It was pure hell for a year and a half.

Anyhow, I somehow bounced back from that fully. My doctors don't see the connection so far to B12. Trying to convince them is like beating your head against a wall. Several antibiotics are known to deplete B12 - if you're already low, that can send you over the edge. I can't yet find whether ampicillin specifically has been tested, but I have a sneaky suspicion that was what started the whole psychosis ball rolling. They already know it kills off beneficial gut flora which can affect B12 absorption. So there's that. And technically I had macrocytosis without anemia twice before. I was on the antibiotic for two months, BTW. About six months after I started coming out of the psychosis is when the motor symptoms starting presenting. Started with foot drop, then basic walking difficulty. Then I could feel it like in my left hip.

Once I was well enough, I started researching what could be the cause. I took two online neuroscience courses. One through Khan Academy and then the one through Harvard. Then I started going through every neurological disease I could find. I started noticing a low B12 connection between some of the symptoms and then I started searching by "symptom+B12" through Google. And there was B12 along with every single symptom I have. Then I started searching through all of the professional research through the NCBI to back up what I had already found. Finding complex partial seizures caused by B12 deficiency is what almost solidifies it for me. It is rare, but is proven to happen and be successfully treated with B12. Apparently that still isn't enough for some US doctors. haha I'm "just" a patient. I don't know what I'm talking about.

I hate to make this any longer, but I think this is worth including. I did originally start supplementing orally. I started with cyanocobalamin 2000mcg day and was on that about two weeks before the Jarrow MethylB12 arrived. I started taking that, 2000mcg/day, and about an hour after my initial third dose I was reading something on the computer and noticed my reading started "flowing" much better for some reason. I was wondering why that was when all of the sudden the skin all over my whole body starts tingling. It lessened a bit as the hours passed and then when I took my 4th dose for the day, an hour later the tingling was back strong again. Like hooking you up to low voltage wires and upping the juice. Best way I can think to describe it. That effect went away after a few days and a few weeks later, the drop foot started flexing normally again. Remember, this was the first thing to go over a year ago. And I still have much better flex in that foot to this day, so far. Occasionally, it wants to act up again, but then goes away again. So fast forward a few weeks and I start to get pronounced tingling in my fingers and feet. I figure it was potassium, so I start supplementing. Probably a week or so later, I wake up and have this horrible pain at the base of my neck extending out to both shoulders and a pain in my right hip. From my mid hip to under my right buttock. Deep dull pain. And BOTH of my legs are very rigid. Specifically my calves. It felt like they were totally contracted and made it very difficult to walk. So I decided to come off of the B12 and potassium together. A week later and the tingling was totally gone, no pain and I was walking as well as could be expected. So I started taking the B12 (only 500mcg/day) alone again. Almost a week into it the tingling starts up again in my fingers and feet. The next day I woke up and the pain was back in my hip again. Same exact place only it was more severe this time. So I decided to give the B12 a rest until I can see my neuro. It's like my body NEEDS B12, but doesn't WANT B12. I've always been a special case lol. So that's where I currently am. Sorry for the book.

[Dewbuc in reply to Spin5]

I didn't realise you were having two monthly follow up jabs. That should protect you from serious problems.

[Dewbuc in reply to Hidden]

It's a wake up call for the doctor too! If you are deficient you will need life long supplementation unless you have an absorption problem that is treated effectively which is rare to say the least.