B12 levels fluctuating?

[Pearlkins]

I am on weekly injections. Some weeks I feel great; others I'm dragging, mouth sores, achy hands and then feel better 2-3 days after the injection. I don't know what my current level is but wonder if exercise can affect it? Or if something else is making me feel these symptoms.

[Galixie]

Exercise, alcohol, stress, and sugar are all things that can deplete B12. That doesn't mean you have to completely avoid all these things, but it helps to know that they are a factor so that you can better manage your life.

[Pearlkins in reply to Galixie]

Thank you!

[clivealive Forum Support]

Hi Pearlkins It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly

.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

[Ryaan]

Why did you go on B12 injections?

You’re deficient or low or have been diagnosed with PA ?

It takes a while and symptoms appear to get worse at start then gradually get better in about 3-4 months.

Have you been tested for Folic Acid which you usually have to take daily if injecting,(standard daily recommendation is 400ug tablet 1 daily).

Also has your Iron and Vit D been tested ?

[Pearlkins in reply to Ryaan]

Thanks for responding. I went on B12 injections when I had a b12 of 115 and high mcv. My folate is fine, as are other tests except I tested positive for anti parietal cell antibodies. My dr. said it is pernicious anemia. I'm on weekly injections, which bring my level up to about 500, but I can't go longer than a week without dropping too low. I'm hoping this will not go on forever but am aware that it might. My doctor also said the achy hands are not a symptom of low b12, so I'm not sure what that is from,

[Ryaan in reply to Pearlkins]

Good to hear your doctor has agreed to treat you, hopefully you’ll be feeling better soon.

This might mean you have to have injections for life but it’s not as bad as it sounds, anemia is easily treated and thousands suffer from it and are on injections whether from gp (very rarely) or self injecting.

The achy hands are from the nerves in your hands which can be from the low B12.

Give it some time to see if B12 does help the hands, otherwise there is further testing of hand nerve pain but i forgot what the test is. If not better in 3-4 months time ask your Gp about that test.(it’s normally a referral to hospital who carry out the test and can give you tablets for nerve pain, but I think things will improve with B12.

Weekly injections are good you should feel quite a difference in 12-16 injections, I hope u don’t get taken off the weekly injections by your doc otherwise you’ll have to resort to SI (self injecting) which a lot of people do.

But it’s easy to purchase B12 online from a good company and they’re not costly, about 50-60p for 1 ampule Hydroxocobalamin.

When on injections numbers don’t really matter.. you should go by your symptoms not numbers in blood,(mine is 3000 in blood as I inject every 2 weeks). When you feel totally better of all symptoms you can reduce to 1 every 2 weeks and see how that goes. If you still have symptoms tell your doc when he asks how you are otherwise he may take you off them. You can further reduce to 1 monthly depending on how you feel but you have to experiment to get right dosage (frequency) of injections.

It’s recomm to take 400ug Folic Acid daily when on injections which is standard daily recommendation (that’s quite a low dose).

Make sure your Folate, Ferritin and Vit D are in good range as symptoms overlap with B12 symptoms.

In the meantime eat a well balanced diet and take some exercise if you’re able (even 20mn walk everyday helps), but that depends on your health if you’re able.

Wish u the best of health in the new year.

[Pearlkins in reply to Ryaan]

Thanks so much for your response! My doctor seems happy to give weekly injections, just based on my numbers, so I think I won’t have to beg for them. But I am going to learn to do it myself so I don’t have to go there every week.

Thanks again!

[Ryaan]

That’s great.....a doctor that listens.