high level B12 984ng/L: hi my GP has... - Pernicious Anaemi...

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high level B12 984ng/L

toni12345678 profile image
19 Replies

hi

my GP has not requested to see me again yet my B12 levels are too high and my white blood cells are low the neutrophil was 1.99 and total white count was 3.92 and yet my GP states this is all normal. I am constantly tired and have felt like this for over one year can anyone shed any light as to why these results would be like this? I do suffer from M.E having caught the Barr Hipsteen virus many years ago and have the associated symtoms - any comments would be appreciated - thanks

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19 Replies
Ashweb901 profile image
Ashweb901

I'm floored by the lack of interest doctors have these days at getting to the bottom of an issue. I've experienced the same indifference and I've figured out I just have to be the boss of my own health and seek another opinion. Do you have the option of self-referral to an endocrinologist?

hunny59 profile image
hunny59

Hi toni12345678. I can't comment on your white blood and neutrophil count although hopefully someone else will be along to advise but I'm not sure why you think your B12 levels are "too high" unless you're not actually supplementing B12 at all? Have you also had your ferritin and folate checked?

toni12345678 profile image
toni12345678 in reply to hunny59

Hi thank you for response, the range seemed to state 600 is the maximum range at worse mine have been 1193 now they are 984 i think that might be because ive started to take saptone its 100% naturally absorbing iron, only simply because i did not know how else to stop me feeling so exhusted alrhough my gp stated my iron levels were within range, but my concern with b12 and white cells was there an underlining reason

Sleepybunny profile image
Sleepybunny

Hi,

How high are your B12 levels?

Have you been supplementing B12 yourself or have you had B12 treatment from GP?

I had to resort to treating myself for b12 deficiency and my blood levels come back high every time I'm tested...probably over 2000.

There are some blood disorders that can results in high B12 levels if you are not supplementing B12. Has your GP excluded the possibility of these?

I am not a medic just a patient who wants people to have the info they need.

toni12345678 profile image
toni12345678 in reply to Sleepybunny

Hi thank you for your reply at worse they have been over 1,000 now 984 iam taking a general multi vit which contains some b12 i take them due to so many food groups i cannot eat all night shades, gluten and lactose, since ive been taking saptone 100% naturally absorbing iron my b12 levels have dropped yet gp stated that my iron range was ok.

toni12345678 profile image
toni12345678 in reply to Sleepybunny

No my gp states all normal but i have made another appt and going to press her to carry out more tests or ask if she is willing to refer me so i can see private doctor

toni12345678 profile image
toni12345678 in reply to Sleepybunny

Hi.... So although your b12 levels are high that doesnt effect you? So were your low and the dr refused to give you injections so you supplement yourself? And are you no longer tired etc?

Sleepybunny profile image
Sleepybunny

I haven't noticed any particular effects of high levels. I seem to need a lot of B12. If I go more than a couple of days without some form of it, my symptoms start to increase and the symptoms that have gone start to come back.

I think people are very individual in the way they respond to B12.

I had a confirmed B12 deficiency a few years ago but only got 5 loading injections, after that I did not get more injections because my blood results were "normal" range.

My symptoms were highly suggestive of B12 deficiency with lots of neuro symptoms. I also had high MCH on the FBC (Full Blood Count) which can indicate B12 deficiency.

I asked my old GP several times if I could try more B12 injections but my request was refused.

In the end having been ill for many years and slowly getting worse, I felt I had no option but to treat myself.

Some of my symptoms have gone, some have improved but some such as the fatigue are still a major problem. I think being untreated for so long means I probably have some permanent damage. It's also possible that I have something else wrong with me....I suspect hypothyroidism.

"No my gp states all normal"

I always get paper copies of all my blood tests because what I was told over the phone wasn't always what was on the paper copies. It also means that I can track changes in blood results over a couple of years. Since I started taking B12 my MCV results have lowered.

"at worse they have been over 1,000 now 984"

Do you know the reference range for your local area for B12?

To be honest 984 doesn't sound that high to me. In my area the "normal" range is 180 to 1000.

Ashweb901 profile image
Ashweb901 in reply to Sleepybunny

With Qwest diagnostics the high is 1100, so I wouldn't consider your 1000 or 984 to indicate something menacing.

Mine was 1980+ and I'm trying to eliminate any bad possibilities. All my other blood results were great except number of red cells, MCV and MCH which are always that way no matter what my serum B12 is. I'm told that low RBC, high MCV and MCH "go hand-in-hand" with B12 deficiency. GI Doctor commented that those numbers should self-correct with supplementation and rise in serum B12 but mine do not.

Anybody know potential reasons why?

Ashley

toni12345678 profile image
toni12345678 in reply to Ashweb901

Could it be that your stomach is not absorbing nutrients properly? I dont know but whilst might not be as high as yours i feel that may be the reason why mine is high, so iam trying silicogel it coats the lining of stomach and helps remove virus, bacteria, and toxins in the gut. Ive only be taking it for 2 days and i can tell the vits ive been taking and the good food i eat my body is getting the benefit. iam not a medic but hope it helps

Ashweb901 profile image
Ashweb901 in reply to toni12345678

I'm not a doctor but I think I have read that exceptionally high blood serum levels indicate the liver is not doing something right. I can't remember what, but I remember it's the liver. (Unless the high number is due to having taken a sublingual tab right before the test!)

toni12345678 profile image
toni12345678 in reply to Sleepybunny

Hi thanks for your reply in my area max range states 600 and therefore over 1,000 is highist, they have dropped since taking saptone natural liquid iron just feel i need it,, iam exhusted all the time, not slept full night for years, i do have under active thyroid and take thyroxine but again dr. States all normal but what with b12 and low white blood cells, there must be a reason. I get numbness in legs, arms, hands. I am seeing gp again tomorrow so lets see

Thanks again for your response

Rachie30 profile image
Rachie30 in reply to toni12345678

Hi u know this was so long ago but did u ever get answers?

pvanderaa profile image
pvanderaa

Since B12 is a water soluble vitamin, there is no such thing at "too high". Once you start on b12 injections, you should expect test results of >1500 pg/ ml which is the top of most tests.

Are you supplementing with folic acid (5 mg is the max available by prescription).

B12 needs folate to work properly. I can only handle 3.2 mg as any more than this I get thumping in my ears. I try to take folic acid 400 mcg a couple of times a day so that I have a constant supply in my blood.

Also for energy, take a multivitamin to provide the minerals and other vitamins needed the fill in those needed for metabolism.

Also look at supplementing with vitamin D.

Have you any issues with your gut? Gluten and dairy intolerance are typical symptoms. Milk (casein protein) made me tired and sleepy.

Caffeine is also a "methyl contributor" and helps methylate the DNA to provide the proteins etc for energy.

I'm no expert but the above has worked for me, in addition to self injecting cyano-B12 weekly.

toni12345678 profile image
toni12345678 in reply to pvanderaa

Hi thanks for your reply, yes i take a good multivit, iam on thyroxine, i also take calcium with Vit D zinc. i dont have b12 injection just the b12 contained in multivit. I take saptone a natural iron since been taking it only 3 weeks the b12 came down and i do feel slightly better and first time in ages i can drop off to sleep for couple of hours. Yes i finally thought about my stomach and now suspect mal absorption so taking silicongel last couple of days and definitely noticed difference not necessarily less tired yet but within feel what i injest is being used properly so will see. Thanks again for your comments all helps

pvanderaa profile image
pvanderaa in reply to toni12345678

I cannot take calcium. I find it lowers the acidity of my stomach. When my stomach juice becomes to alkaline, I get severe heartburn (just like too much acid).

To sort out gut issues, I found that keeping a logbook of symptoms (including my own assessment of severity) along with all food, drink and medications, was essential.

With a vit B12 deficiency, one of the first neurological symptoms is loss of short term memory. The logbook temporarily fills in for this loss until you can sort our all the contributors to the symptoms.

I typically prepare all my own food and only eat out when absolutely necessary. I tend to prepare a large pot of food with ingredients that I know work for me and don't make me tired. This pot lasts me several days and it can get a bit boring to eat the same thing for several days in a row. But you need the time for the gut to react to one type of food.

Using the logbook, look back 4 to 48 hours (these times may vary based on the speed of your gut) to determine if there is any correlation between a symptom and a food, drink or medication.

Remove suspected items from your diet for at least 2 weeks to completely detoxify the liver, gut and bile loop.

Then reintroduce and reevaluate to determine if the symptom(s) return. I get wind first, then brain fog and finally diarrhea or constitution depending of the allergen.

Now with B12 it gets interesting in that you get symptoms for a few days after taking it or having an injection. This is a side effect also called detoxification. When your cells are low in B12, they kick into overdrive when they get B12 (or folate) and dump a lot of metabolic byproducts into the blood stream. It takes several days for the liver and kidneys to filter this all out during which time your symptoms appear again. This only means that you were low in b12 and need it more frequently.

fbirder profile image
fbirder in reply to pvanderaa

newscientist.com/article/mg...

pvanderaa profile image
pvanderaa in reply to fbirder

I think I'm using the word "detox" in a more general sense in getting allergens and toxins out of the bile and the hepatic loops that keeps recycling them. Two weeks seems to work well in my experience of sorting through all my symptoms.

Your article is interesting and B12 is one of the agents that actually helps get rid of metal poisons in the body. The one the cones immediately to mind is Mercury from amalgam tooth fillings. B12 gets consumed in the process.

For some, the PA downward spiral begins with a trip to the dentist.

Thanks for the link.

fbirder profile image
fbirder in reply to pvanderaa

Can you post a link to a peer-reviewed study where B12 is involved in 'getting rid of metal poisons in the body'.

Or one that shows that appreciable amounts of mercury is released from dental amalgam?

The only way that a visit to the dentist can affect B12 is if the dentist uses laughing gas.

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