• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

High Serum B12

Messages
14
Hello all new to the forums. I apologise in advance for this very long post but my problems have become quite complex.

History:

I am 31 Years old, I have been on Testosterone Replacement Therapy for around 3 years, using the injection Nebido 1000mg (testosterone Undecanoate) every 8 weeks.

10 years ago I had a problem with my vision, I only use one eye or the other due to an alternate strabismus from childhood, but each eye developed multiple ghosted vision which could be corrected using a pinhole. I saw various Eye specialists but was told there was nothing wrong. I eventually learned to live with this....

2012/13

Last year I suffered very badly with allergies, I am unsure if it was to hay fever or something else, but at some points I had to actually double or triple dose on anti-histamines to stop the symptoms like itching eyes, sneezing, running nose, itching mouth and so on.

Around September last year My vision changed in my left eye alone, the multiple ghosting had got so bad that I am unable to read with that eye, again saw specialists, I this time did not accept their diagnosis that nothing is wrong. It took me 3 specialists appointments and 1 optician appointment and I found out that I have the eye disease Keratoconus. Basically my corneas progressively get thinner and change shape and bulge outwards into a cone giving me distorted vision.

Before I got this diagnosis however I started worrying over having a brain tumour because I had started getting headaches too, these then became daily low grade annoying headaches. I was told they were tension headaches.

Since around December/Jan 2012/13 I have gone through many crazy symptoms which all the Drs I have seen have put down to anxiety.

List:

Excessive Saliva
Excessive Sweating with Night Sweating
Itching sensations
Burning Skin Sensations usually of my hands and feet.
Radom Pain
Pins and Needles

I have had various tests done like:

Sinus CT Scan
Blood Testing for: Testosterone, E2, SHBG, TSH, T3, T4, FBC (on 2-3 occasions), B12, D3, Iron, CRP. Probably more too but I don't have a printout.

I have had abnormal results in the following:

Testosterone - HIGH latest was 44.5 nmol/l with the scale 9.0-29.0
E2 Oestradiol - HIGH - 260 pmol
B12 -? HIGH (slightly raised in Drs own words)
D3- ? LOW
FBC - Red Cells borderline high, white cells normal.

The Drs I have seen said b12 being high is nothing to worry over and a sign of a good diet....I feel a tad lost over this statement. From my own research b12 should not be high in the blood because it should be used or secreted via urination? I did not take ANY supplements before this blood test or within the previous 5-6 months leading to this blood test. Even when I used to it was not a B vitamin supplement.

Over the past few months the headaches have decreased into almost non existence, If I do get them now which is maybe 1 every 2 weeks they respond to pain killers. I am unsure if they are linked with having the eye disease or what at present.

But the last 3 weeks have been a nightmare with burning palms on my hands and pain around my elbow regions of both arms, I have also experienced pins and needles of my hands at night and increased pain. My feet also feel very similar. Again my Drs say anxiety/stress.

Is their more to this B12 level being high? Could this mean I am actually deficient?
 
Messages
62
High serum B12 can be because it is not getting into the cells....... So you get a functional deficiency despite appearing to be OK. lithium is needed to get the B12 transported into the cells.
Some SNPs are associated with Lithium "dumping" into the urine, according to Yasko.... MTR and MTRR, I believe.
Do you know what your MCV was on your blood test ?
You can check out Lithium levels by hair testing or blood testing...... Doctors Data test for Whole Blood Elements at physiological levels.
If you are deficient in Lithium you can supplement with Lithium Orotate to restore physiological levels. Then the B12 will get into the cells OK.
According to Yasko, if you are Lithium deficient because of dumping, adding in lots of B12 will make the dumping worse.
Maybe worth checking this out, as B12 deficiency could account for some of your symptoms.
 
Messages
14
Just got the results from another blood test done on Mon 23rd Sept

FBC/CBC - Normal including MCV normal, white cells right in the middle of the range
Iron - Normal
Folate - Normal
B12 - High again....raised again from the last test in Feb.

GP is giving me yet another blood test to recheck Liver and other various things as well as a FBC/CBC slide rather then machine test?, I am at a loss, I don not take b12 or any vitamins.
 

roxie60

Senior Member
Messages
1,791
Location
Central Illinois, USA
I just started Lithium Orotate about 3 weeks ago cause we suspect I am functional B12 deficient. My serum B12 is usually around 1500 (prior to taking B12 supplements and shots it was in deficient range). I am having an MMA test today which I'm am expecting to be high which would support the functional B12 theory (I think based on some articles). I had also requested another serum B12 for comparison but once again lab order was not there so I'm frustrated those two results will not be together to compare. But with my lab test history MMA will probably come in low proving nothing is wrong with me. Today I feel fairly ill, fatigued. Yesterday I had some better hours. Also had Ferritin and Iron tested.

Here is an interesting comment about MMA and functional B12 deficiency.
http://trulyglutenfree.co.uk/2012/1...looks-ok-on-blood-tests-but-you-know-it-isnt/

Getting anxious about MMA result probably because I have had so many tests come back in 'normal range'. I just want to make progress in understanding what is going on and right now seeing an MMA out of range would at least be another indication that one thing I'm dealing with is functional B12 deficiency and would line up with experience. I dont want to be anxious but after years of disappointment it takes a toll on ones confidence
 
Messages
14
Thanks for the links Ill check them out now,

I just had further blood testing Sept 30th results were:

CBC/FBC - Normal - red cell count slightly elevated white cell count perfectly normal.
Blood Film - Normal
Iron - Normal
Liver Function - Normal

Our lab range for b12 had a cut off at 660 and my b12 result is 880.

Dr is now writing to haematology to ask what further tests might shed some light on my high b12 level. I did mention MMA.

So basically apart from high B12 every other test is normal.
 
Messages
10
Being new at this, but I thought they said that if B12 is not getting into the cells it is because you need L-Carnitine Fumerate and D-Ribose ??
 
Messages
14
Hello, These are my full blood test results if anyone has any insight for me, I will put mostly the abnormal findings:

14/02/13

Serum Vitamin B12 - 790 ng/L ( 191-663 ng/L)
Serum Folate - 9.4 ug/L (4.6 - 18.7 ng/L)
Serum Vitamin D3 - 28 nmol/L
Red Blood Cell Count - 5.58 (4.00-5.30)
Mean Corpusc. Hb. conc (HCHC) - 35 g/dl (31.5-34.5)

23/07/13

Serum Testosterone - 44.5 nmol/L (8.60-29.00)

29/07/13

Serum Testosterone - 41.3 nmol/L (8.60-29.00)
Serum Oestradiol - 262 pmol/L (50.00-218.00)

23/09/13

Total White Cell Count - 7.73 (4.00-11.00
Red Blood Cell Count - 5.51 (4.50-5.30)
Heamoglobin estimation - 161 g/L (130.00-170.00)
Haematocrit 0.482 I/I (0.40-0.50) - NORMAL
MCV - 87.5 fL (80.00-100.00)
MCHC - 334 g/L (315.00-345.00)
Platelet Count - 261 (140-400)
Neutrophil Count - 4.18 (2.00-7.00)
Lymphocyte Count - 2.61 (1.00-3.00)
Monocyte Count - 0.47 (0.20-1.00)
Eosinophil Count - 0.43 (0.02-0.50)
Basophil Count - 0.03 (0.01-0.10)

Serum Ferritin - 57 ug/L (15.00-350.00)
Serum Vitamin B12 - 880 ng/L (191.00-663.00)

30/09/13

Total White Cell Count - 7.97 (4.00-11.00
Red Blood Cell Count - 5.53 (4.50-5.30)
Heamoglobin estimation - 167 g/L (130.00-170.00)
Haematocrit 0.482 I/I (0.40-0.50) - NORMAL
MCV - 87.2 fL (80.00-100.00)
MCHC - 346 g/L (315.00-345.00)
Platelet Count - 245 (140-400)
Neutrophil Count - 4.44 (2.00-7.00)
Lymphocyte Count - 2.52 (1.00-3.00)
Monocyte Count - 0.63 (0.20-1.00)
Eosinophil Count - 0.34 (0.02-0.50)
Basophil Count - 0.04 (0.01-0.10)

Serum Total Protein - 78 g/L (60.0-80.0)
Serum Albumin - 47 g/L (35.00-50.00)
Serum Total Bilirubin Level - 11 umol/L (4.00-25.00)
Total Alkaline Phosphatase - 76 u/L (40.00-130.00)
Serum ALT Level - 40 u/L (10.00-50.00)
Serum C Reactive Protein - <3 mg/L (<11.00)
 

Freddd

Senior Member
Messages
5,184
Location
Salt Lake City
Being new at this, but I thought they said that if B12 is not getting into the cells it is because you need L-Carnitine Fumerate and D-Ribose ??

Hi Joojee,

First one needs the right kinds of active B12 to be present and readily available in the body. Then l-methylfolate has to be present in some way for MeCbl in some uses to be retained better and utilized. Then ATP has to be present sufficiently for b12 and folate to work and that can be hindered by lack of sufficient AdoCbl and l-carnitine fumarate.