Symptoms not improving after a month taking B12 shots?

[Dorus]

I've been taking cyanocobalamin injections for around a month, but I still suffer from the issues I had before (dizziness mostly). I really haven't seen any improvement at all, and I also still feel slight numbness in my feet, never tingling though. I actually feel like my memory is getting worse, I'm starting to get a bit scared that something a lot worse may be causing these symptoms.

Would getting a hydroxocobalamin prescription help me better? I guess a lot of the cyanocobalamin I take leaves my system pretty quickly through urine (it usually gets a noticeable reddish-brown color at around an hour after injections); but I expected at least some improvement from the injections.

Also my folic acid test came back normal (9.4ng/mL). I also have normal hemoglobin, though I do have low ferritin.

I'm getting a lot of anxiety from these problems, the dizziness in particular really ruins my day, it's been almost 4 months since the dizziness began, and I'm really not happy about the idea that I may just end up having to live with it.

[pvanderaa]

I inject weekly cyano but I take daily methyl-b12 sublinguals to fill in.

How much folic acid are you taking?

Are you taking multivitamin daily also?

Some symptoms of the repair are very similar to the ones from the deficiency.

[Dorus in reply to pvanderaa]

I haven't been taking folic acid or multivitamins at all. Could it help? I'm really hoping it's just the repair, but it's really taking a while for the improvements to come!

[pvanderaa in reply to Dorus]

When you first get B12 after being deficient for a while, the metabolism kicks into high gear and uses up everything it needs and you can become deficient in other chemicals.

If you want a picture google methionine loop or methylation of DNA. The graphic looks like two circles side-by-side. The left one is usually the folate loop which folic acid supplements. The right circle is the methionine loop for energy and cell division.

B12 sits at the intersection of these two loops and so when you are low in B12, both loops slow down.

The multivitamin provides all the other B vitamins that feed these loops and allow B12 to do its job. It also provides minerals and metals to support your metabolism.

Folic acid up to 5 mg supports the right side of the diagram and is converted into folate in the body. You can also get folate from green vegetables (kale and broccoli are my favorites).

Some cannot tolerate too much folic acid. Start with 800 mcg and build up while monitoring all your symptoms in a logbook.

Are you keeping a logbook?

The symptoms show up 3 to 48 hours after eating, drinking or taking medications. I use the logbook to support my short term memory loss and remember what happened yesterday or the day before that would cause a symptom to appear.

Once you are familiar with how your body reacts, you can adjust things. But go slowly, leave things for a couple of days before changing dosages.

If you have had nerve damage, you may also want some extra B6 (100 mg) and B1 (100 mg) if the multivitamin quantity is not working.

Nerve repair is very slow. So use the logbook to assess your own severity score. Monitor these scores over months to see if things and moving in the right direction.

The logbook helps you gain back some control and you can reduce your worry and stress. These two consume lots of B12 so each injection doesn't last as long.

As things improve you will do more and use up B12 faster so you may be more frequent injections.

The logbook should be shared with your GP so that he/she can get past the "I've got a hypochondriac on my hands" stage we all go through. Your GP will then be ready to give you more frequent injections and trust you to monitor yourself.

Good luck.

[deniseinmilden]

Cyanocobalamin doesn't make any difference to my symptoms whereas a combination of hydroxocobalamin and methylfolate with a broad spectrum multivitamin and mineral supplement, plus extra potassium, magnesium and iron make a huge difference.

Don't worry yet there are lots of other things to try first. Good luck!

[Dorus in reply to deniseinmilden]

Thanks, it's a relief to read that. I probably should get multivitamins, and I'm quite concerned about iron in particular. But I'll see if I can get the doctor to prescribe hydroxocobalamin instead.

[Gambit62 Administrator]

people do respond differently to different forms of B12 so it may be that cyanocobalamin isn't the type that suits you best.

However, it is also true that B12 deficiency affects people in different ways and different symptoms can come from different processes. If your symptoms are the result of macrocytosis then that will take a few months to start clearing as it is corrected as deformed red blood cells die and are replaced by new healthy blood cells. As a red blood cell 'lives' for about 4 months that means it is going to take a few months for those symptoms to clear.

Do you have a full list of your symptoms and have you noticed if any of them have improved at all?

Also do you have your full test results with ranges - if your folate was low though still in range then you could now be folate deficient as the body uses up folate when it processes B12. The best form of folate is from food - plenty of fresh veg and fruit - brocolli very good.

[Dorus in reply to Gambit62]

Okay, here is what I feel.

-Dizziness: but only when I walk around, not when I'm sitting or laying down, even if I'm in a car or another moving vehicle. It seems to vary in intensity so it's better or worse sometimes. Started in July;

-Slight numbness of feet: as if I wore tight shoes the whole day. Also seems to vary somewhat. Started in August;

-Memory/concentration problems: started more recently this month, or at least it felt more noticeable this month. It's nothing huge. I've been quite vigilant about what I feel, so it could be I'm giving my mistakes too much value, but I really don't feel the same as before.

-Stomach issues: occasional heartburn and reflux due to autoimmune gastritis. Started in July as well, but it's a lot better now.

The results:

-I don't actually have macrocytosis. I've always had microcytosis since I was a teenager, and I've been told it's normal as long as I have normal hemoglobin.

Red cells (recent): 5.60 million/mm3 (n 4.5 to 6.10)

Hemoglobin (recent): 14.3 g/dL (n 13 to 16.5)

Size/volume values: All slightly below normal range (microcytosis)

VB12 (late August): 187 pg/mL (n >200)

Folic Acid (late August): 9.4ng/mL (n >5.38)

Ferritin (late July): 10.4 ng/mL (n 22 to 322)

Serum Iron (late July): 74 mcg/dL (n 65 to 175)

The other routine tests (choleresterol/glucose/TSH/etc) are within normal range.

My diet is something I'm working on. I'll try to get those vegetables in, it's something I really need to get used to.

[Gambit62 Administrator in reply to Dorus]

thanks - second part of the question was whether you had noticed any improvement in any of the symptoms - sounds as if you haven't though possible that some of that may be that you are just being a lot more aware of things.

the balance and the numbness in your feet sound more like neurological problems so might have expected some improvement there - for me the balance was even more bizarre as I'd be quite comfortable on a bicycle but walking was really bad so certainly can relate to that.

How frequently are you getting shots - it might be worth really focusing on how things are just after a shot and how they change with time as it may be that you need the shots more frequently

Note: although in general people retain hydroxo longer than cyano that isn't always the case and for significant numbers of people it can be the other way round so no guarantee that switching to hydroxo would change things.

Difficult to really know what to suggest as actually one month is quite early days - yes some people do notice quite dramatic results in the first two weeks but for others it can take much longer.

Good luck with the dieting - if you can't manage diet then try some folic acid as well.

[Dorus in reply to Gambit62]

Yep, that's the sort of dizziness I'm talking about! I really haven't seen much improvement on the symptoms so far though.

I'm following the doctor's instructions for the shots, so I took three shots on the first week, then once a week for three weeks and then the next one will be a month after that. It's been five weeks now since I started. I guess it really is too soon to know for certain if I'm getting improvements. Maybe I should just relax a bit and give it some time, the anxiety probably doesn't help much.