Pernicious Anaemia Society
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B12 and D deficiency levels up 2 months don't feel good

I had a very bad condition with nerve vibrations making me very afraid, no energy (completely drained), feet pain, muscle pain, joints pain, nerve pain, warm/burning eyes, bitterness/metallic taste in mouth, brain fog and so on. Doctors neglected everything and I stressed to test my blood and found very low vitamin D (4.1 while range is 30 to 70) and below range B12 (183 while range is 197 to 729). Doctors in Belgium treated me with cynocobalamin tablets and it was of no use. I decided to travel to home (India) to get more aggressive treatment and here doctor gave me cynocobalamin 1000 mcg injection every alternate day for 2 weeks and then every week for a month and then every 15 days for a month and every month for rest of the year. After 3rd injection I improvement was very clear and I felt like getting the life back. After 5th injection I was almost normal in terms of energy and some pain was left in feet. But when 2 weeks completed and I didn't get injection till 3 days, my condition started getting bad and I took the first weekly injection after 5 days instead of 7 days. I felt better again, but started feeling awful again after 4 days. It's like my body expects the injection. This time I decided to go through this phase and complete 7 days. After 5th day without injection I started feeling normal again. I learnt that instead of jumping from alternate days to directly 1 week wasn't the expectation of my body and similarly not from weekly to 15 days. Therefore I decided to increase the gap gradually and support it with oral tablets. On December 1st my B12 was 183 and D was 4.1. After taking oral supplementation, on 15th December, B12 was 270 and D was 30. I took oral supplementation of B12 till December 24th and then started taking injections. I stopped the Vitamin D supplement on 8th Jan after taking total of 470000 IUs. I also had enough sun exposer in India during this period. I returned to less sun exposer (Belgium) on 11th Jan. I took total 9 injections of cynocobalamin (each 1000 mcg) till 16th Jan. And had the next blood test after 10 days on 26th Jan (I took oral B12 sublingual mythylcobalamin 1000 mcg daily from 19th jan to 24th jan). On 26th Jan my B12 was 910 and D was 27. My first and last blood test was done in same lab in Belgium and middle one was done in a different lab in India. After last test I started Vitamin D supplementation of 25000 IU twice a week and also returned to India for better sun on5th Feb. Now on 17th Feb when I have also started reducing my oral supplementation of B12 for last 10 days, I started feeling some of the symptoms little more (more pain in feet and wrist, burning sensation in eyes and little tired). Is it normal? Am I right on recovery path? Is it vitamin B12 or D which is creating more problems? I can say I'm definitely much better than how I was in december, but I had better days in between. I don't feel sick anymore, but not fit also. Any suggestions or any experience sharing? If I still continue injections, I would feel better but I fear myB12 will be too high.

My haemoglobin used to be above 15 (16.9 in June 2017). Which came down during this phase:

December 1st - 15.8

December 15th - 14.7

January 10th - 13.7

January 26th - 14.6

Folate was also in the range (earlier towards lower side, later in the middle of the range because my b12 tablets had folate also)

Iron and Ferretine were also in the range initially, Iron become high and Ferretine went low after taking tablets for 10 days on 15th Decrmber. Both become normal later when tested on 26th Jan.

Looking at my results for Two months, my doctor said, I don't have symptoms of anemia and saod my deficuency is only because I'm a vegetarian ( but I drink milk and eat curd although I drank less milk for a while). But my doctor didn't test for further causes.

My b12 level is going high but I feel bad if doctor makes my injection duration longer. Please help.

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Hi Vitaminhungary

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 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.

You do need to keep your Folate at a healthy level as this and B12 help your iron to make red blood cells and to function properly in your body.

Fortunately B12 is not toxic and you cannot "overdose" on it as any excess is excreted via your urine.

There is some slight "crossover" of symptoms with a Vitamin B deficiency.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I've been on monthly cyanocobamalin injections the whole of that time.

I wish you well

.

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Thanks.

Did you mean my symptoms are similar to other vitamin B profiles?

I heard from one doctor that excess of b12 isn't good for liver. All the others said it goes away in urine.

My fear is also that whether it is only b12 or some other dficiency or toxicity. All the other symptoms have subsided or don't trouble me as much. My energy level is the problem. I feel 0 energy without doing anything. I remember, I started feeling energetic and I started playing with my nephew, running around, also did some heavy physical work and started feeling tired and low energy after that. Should I really refrain from physicsl activity?

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I'm not medically trained and can only speak from my own experiences. I have found that exercising is best done in moderation knowing I'm likely to become exhausted if not careful. We are all different so it's difficult to make comparisons.

B12 is actually stored in the liver and holds maybe several years worth. I was 13 years between the removal of two thirds of my stomach before I finally go the diagnosis of P.A. by which time I guess I was pretty much "running on empty".

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serum B12 doesn't really mean an awful lot after loading shots - can't be used to manage a B12 absorption after shots so you need to go by symptoms.

after a shot your B12 will be way off the scale and then it will gradually fall over time - so the lab is measuring your B12 some time after the shots.

- and 'normal range' doesn't apply after loading shots as the fact of raising your blood serum through an injection introduces a new factor that means some people need to retain very high B12 levels - on average 1000pmol/L after loading shots. You need to judge where you are by your symptoms.

Please note that there are two units used to measure B12 levels - so you need to quote units - pmol/L or ng/L - and preferable the 'normal' ranges as different labs can also use different test methods.

there is no known toxicity from B12. In fact hydroxocobalamin is used as the treatment of choice for cyanide poisoning because of this - 5000x the amount you have in a shot administered intravenously over 15 minutes with a follow on treatment 30 minutes later if needed - and the big risk is hypertension caused from injecting the amount of fluid needed into your blood.

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Note that units of measurement should be specified for vitamin D results as well.

The units I've seen used are nmol/L and ng/mL.

A converter from one to the other can be found here :

grassrootshealth.net/?post_...

The differing units of measurement cause confusion when the subject is discussed in articles and forums online.

US units are usually ng/mL and UK/European units are usually nmol/L. I don't know what units are usually used elsewhere.

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Thanks!

B12 - ng/L

D - ng/ml

Same unit used in Belgium (Europe) and in India.

Instead of mentioning the units, I mentioned the range intentionally which I thought will give more fare idea of the method of that lab.

I hope it gives a better idea on my readings now.

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Ah, yes, you'd think the reference range would help - it ought to, and for most tests it does. But in the UK, people should be given the following reference range (nmol/L) or something similar :

<25 nmol/L : Severe Vitamin D deficiency

25 – 75 nmol/L : Borderline ranging to insufficiency

75 – 200 nmol/L : Optimally replete

>250 nmol/L : Possible toxicity, if sustained#

But sometimes they are only given this bit :

25 – 75 nmol/L

and the rest is left out (I have no idea why). I've seen the same issue cropping up in other countries. So if their vitamin D is, for example, 28 nmol/L they assume their level is fine, when in fact it is far too low.

The ideal range for vitamin D3 is often given on the Thyroid UK forum (here on HealthUnlocked) as :

40 - 60 ng/mL or 100 - 150 nmol/L

Two sites with lots of useful vitamin D info are :

grassrootshealth.net/

vitamindcouncil.org/

To identify how much you should be supplementing you might find these useful :

grassrootshealth.net/?post_...

grassrootshealth.net/?post_...

Note that some people don't tolerate vitamin D very well. I've seen it suggested that low magnesium (which is very common) can be one cause of people not tolerating it. So in those circumstances people should supplement magnesium for a while before and during the time they take vitamin D.

It is also important for bone health to take vitamin K2 while taking vitamin D and magnesium.

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Sounds like you dont have an absorbtiin issue as my b12 only went from 169 to 242 while taking 220 mg of b12 daily for 16 months.

There are a lot of known bone and joint pain issues associated with increasing D to a healthy level if you dont have the correct cofactors. D needs to be taken with A and K and magnesium.

Im so glad you have been able to get lots of b12 injections as your level did appear to be quite low originally. However your D is still low but that also doesnt appear to be absorbtion issue. My D was 20 originally and only increased to 39 after supplimenting daily with 5000 iu for 16 months. I was taking it with A and K but was not aware of the need for magnesium.

Once i started taking magnesium it went up to 70 quickly.

easy-immune-health.com/magn...

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Thanks a lot. I just got my b12 shot of 1000 mcg after 18 days. I hope it takes me healthy for next 1 month at least!

Could you please suggest the dosage quantity of vitamin A, K, D and Magnesium and schedule (eveyday together in the morning before eating?) and when to stop and test next.

My magnesium and calcium were good, little towards the higher side of the range but they were in the middle of the range after taking supplementation of vit D and B12 for a month and half.

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Im of course not sure as im not a doctor, but i have read lots and lots on the subject.

I have read our skin can produce equivilant of 20k to 25k iu of D per day. So if you want you could take that much daily but should be taken with meal as A and D , not sure about K, are fat soluable vitamins, so they need fat in a meal to be absorbed.

Magnesium testing is useless from what i have read as very small percentage of magnesium, like only 1% is in bloos serum. Magnesium of 400 mg is needed daily and most are deficient. Taking 200 to 250 mg at a time 2X daily might help reduce possible side affect of loose stool. You can also try taking epsome salt or dead sea salt bath as main ingredient is magnesium. If you feel better after a bath you will know you need magnesium. 2 cups per bath for minimum of 30 mins. I originally, would have to be in the bath for 1 hour before my joint pain would reduce.

Good luck and health!

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Thanks!

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Hello I am from India as well . Can I contact you over email. I need help on B12

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