Symptoms are creeping back

[Awil]

Long story short...I started supplementing in Feb, after believing I was b12 deficient. My level was 238 and I had several neurological symptoms. After being unwell for months I started taking 5000mcg sublingually daily. Much improvement - enough to go back to work and started feeling human again. However, the Dr retested my bloods after a couple months and told me to stop supplementing as the level was in the 2000s. I did as I was told and now a month on I've started feeling tired and dizzy again. I managed to see a locum last week who was up to speed on b12 deficiency and she recommended I start supplementing again as she believed I was deficient. I started taking them again 5 days ago, today I woke up feeling achy and my balance is off. My question is - is this likely to be because the b12 is doing it's job and the symptoms will be worse before better? I'm so scared I'm slipping back to being housebound again due to terrible balance.

Thanks in advance.

[Nackapan]

It happened to me. So hopefully the b13 doing its job. Keep the B12 up

[Awil in reply to Nackapan]

Thanks for your reply. I felt so unwell the first time round I probably didn't notice the symptoms getting worse.

[clivealive Forum Support]

Hi Awil It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having 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.

It is also important that your Folate level is monitored as this is essential to process the B12.

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

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 47 years.

I wish you well.

[Thulasi1 in reply to clivealive]

Hi clivealive, I am taking b12 500 mcg methycobalamin every alternate from 2 months due to neurological symptoms of PA. I was not having anemia, Folic Acid , iron, potassium were in range when I started b12 2 months ago. Should I have to consider taking folate?. I am a 29 year male

[clivealive Forum Support in reply to Thulasi1]

If as you say your "Folic Acid" (assuming you mean Folate) was "in range" you should be OK.

We source Folate naturally by eating plenty of leafy green vegetables, sprouts, broccoli, asparagus. spinach, peas, beans etc. Folic acid is also to be found in many breakfast cereals.

If you don't eat a lot of vegetables in your daily diet you could buy Folic Acid 400μg tablets cheaply over the counter at your local pharmacy or supermarket and one a day would suffice.

[fbirder]

So, you were ill and you took things that stopped you being ill, and an idiot doctor told you to stop taking those things because some numbers were high, even though high numbers aren't dangerous?

Ignore the idiot doctor, listen to the sensible doctor.

It's quite possible that your return of symptoms is because you've become deficient again. Five days is probably not long enough for the new supplements to fix that deficiency. See how things are after another few weeks.

[Awil in reply to fbirder]

My sentiments exactly. I'm so annoyed that I listened to him against my better judgement.

I did think the same about the possibility of being deficient again. Would a month off of the tablets be long enough for that to happen?

I'm so glad I saw the locum, who had literally just finished a course in b12 deficiency. She immediately said I should have been treated as deficient back in December. I'm going to follow her advice and take them for a month, if no improvement go back to the Dr. If there is improvement I will continue to take them. In your opinion would it be wise to continue 5000mcg daily or perhaps cut down once/if I improve?

Thanks.

[pvanderaa in reply to Awil]

Start a logbook of all your symptoms. Some neurological symptoms take months and years to go away.

Make daily assessments of your symptoms to monitor progress but, if you start injections, compare day 1 after the jab to day 1 the previous cycle. Treat the injection as day zero and reset to clock in the log each cycle.

Day for day and even week for week comparisons just lead to chaos in treatment levels.

You may feel worse, i.e. increased pain, after B12 due to repair of nerve damage. The signals are stronger and the brain needs about 3 days to recalibrate during which time it wants to interpret the stronger signals as pain, hunger, pins and needles. It depends on the symptom and the appropriate nerves. If you can tell yourself that the symptoms after B12 are an illusion and convince your brain, it recalibrates faster and they go away.

Gentle range of motion exercises or swimming for muscular pain help the brain sort itself out faster.

The adage is “only exercise the nerves you want to keep” as the repair of nerve damage is triggered by usage.

[pvanderaa]

You want high levels to repair nerve damage. There is no such thing as “too high” as your body pees away any excess.

Are you supplementing with folic acid to support B12 in repairing nerve damage?

[Awil in reply to pvanderaa]

The new Dr said my folic acid levels were fine so I didn't need to supplement.

[pvanderaa in reply to Awil]

If you’re starting B12 again, you may find folate levels drop if tested.

You may also want a daily multivitamin to provide the minerals and metals that metabolism uses up once it gets B12.

[deniseinmilden in reply to pvanderaa]

I completely agree with the above and the multivitamin will give you a small boost to your folate levels. Try to get more folate (B9) by eating more fruit and vegetables, particularly leafy greens, if you can, as the B12 works directly with folate. It wouldn't hurt you to take a 400mcg folic acid tablet if you wanted to be sure - they are inexpensive and available in supermarkets and chemists, especially for ladies try to get pregnant.

It also wouldn't be a problem to take 2 (or more) of your 5000 mcg methylcobalamin tablets, ideally spaced out through the day, until you have restored your levels to a point that your symptoms go.

Symptoms are your body's way of telling you something is wrong and needs fixing so try to stay symptom free.

Yes, you can definitely drop from being borderline "not quite symptomatic" to significant symptoms in a month. While you may find that if you supplement at a high enough level your body will have enough B12 to heal itself and get better, unless you are vegan or your deficiency is diet related you are unlikely to fix the original problem that has crept in as you have got older and caused the deficiency to happen, and so you are likely to need to supplement for life. Particularly if you don't get enough B12 into your system you may find that your absorption levels slowly get worse and you may need to increase your tablets or have some injections too to stay well.

It's a bit of a pain but not a major problem - much better than feeling so dreadful!

Just be mindful of your vitamin D levels too!

[HBerry in reply to deniseinmilden]

I seem to be in the same place as Awil. I have my first Neurological appointment tomorrow.

After my first B12 injection (doctor prescribed once a week injections) it took me a week to start feeling better. With 3 more injections and follow up blood work my B12 went from 200 to 1260. I was feeling much better. My doctor said we should switch to monthly injections. After 2 weeks with no injections all my symptoms started coming back. I went back to my doctor and started weekly B12 injections again. Tomorrow will be a week since I restarted injections and I still fell bad. I have and always was taking multi vitamins and a b12 supplement. I also am taking a 50k weekly vitamin D pill as my levels were at 14.4ng/ml. I still have 6 more weeks before I get tested to see if my D levels are good. There was nothing else in my blood work that seemed questionable. Folate levels were good. My current relapse into symptoms may be a sign of healing but I’m worried it might be more than vitamin deficiency.