As part of my wider investigations, Ive been looking at possibility of PA but from most of my results, i dont think I have this.
Tests done incl. Active B12, Folate, Intrinsic Factor, Methylmalonic Acid (urine). All acceptable results but B12 on the low side, so i think i might as well supplement.
The only test Ive not done that is mentioned is Homocysteine but its quite expensive. Do my results here warrant getting that test before just starting the oral supplementing. The reason i ask is that i assume supplementing will affect any test results should i decide needed after all but then again cant waste more money
Ive been suffering with neurological symptoms for over a year which severely affecting my life. Neurologist tentatively diagnosed silent migraine for now, but i am still in process of investigations - had EEG this week and lumbar puncture booked in.
Have also been investigating other conditions myself with help of the Thyroid forum. Paid out a lot of £ for blood tests but nothing really unusual has come up.
I am going to just supplement a few things incl B12 to try to get level up a bit but would like to eliminate PA from my list of possibilities if that make sense.
If i dont make sense what iam asking then im happy to clarify.
Thank you
I have bought this, i hope it will be ok?.. Natures Own Vitamin B12 Sublingual Methylcobalamin 500µg.
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GoingthruTreacle
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Hi GoingthruTreacle to check for P.A. you will need to be tested for Intrinsic Factor Antibodies (IFA)
For testing intrinsic factor antibodies: keep one week between any supplementation and the test.
Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
I couldn't see a Vitamin B12 level in the above and you don't say how low it was but as long as you don't have an absorption problem with your digestive system you will do yourself no harm by taking the supplement you mention.
What is your diet like? Do you eat animal products?
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
Hi had the Intrinsic factor test in March this year - it was negative. I assume no point doing again.
Ive put all available results in an image attached - some were ordered by GP, some i paid for.
i dont think my B12 is that low but reading bits of info made me ponder it be worth supplementing anyway and its good to know at least its not going to harm.
My Diet is quite good and varied and dont exclude anything but there is Im sure there is always room to improve diet to be even more healthy.
Although I have a knowledge of nutrition and experience in reading lab reports I do not have any medical qualifications to advise you and really feel you should go to a good GP somewhere with these results.
Yes, your B12 is definitely on the low side and you are likely benefit from taking sublingual methylcobalamin but the things that strike me are your parathyroid and calcium levels are low while your iron levels are high. Iron and calcium are antagonists to each other and there could be a link here.
High iron usually has a specific medical cause, hemochromatosis, which can have serious consequences and should be addressed.
The high MCHC suggests that you could have autoimmune hemolytic anemia and is also linked with the above.
I'm not sure how cholesterol fits into the picture but that is high enough to indicate another (possibly linked) problem that should be monitored and probably treated.
I'm not sufficiently confident to say whether or not you have had enough tests before supplementing with B12 (you are brilliant to ask) and I would defer to the greater knowledge of Gambit62 and Foggyme. (I can't supply a link to Foggyme as it wipes my whole post if I try, sorry).
I can see you are probably feeling pretty terrible and hope you can get some help ASAP. You definitely have invested your money wisely and with the right Drs and treatment you should get significant improvements.
Thank you for reply. Yes i have a lot of results here, all taken within the past year. Some done by NHS G.P. and others bought from Medichecks.
Ive shown these all to 4 x G.Ps at my practice plus 2 consultants- Neurologist and a Rheumatologist.
None of these professionals have been the slightest bit interested in any of these blood results - all normal in their opinion and nothing to investigate further in this regard .
Thank you for your comments about the tests and what they could potentially mean. Its very interesting. i am grateful for the suggestions and will keep in mind as i go forward.
It is a slow process of crossing off possibilities. Six months were wasted at the start of my issues where they just said 'stress' then 'depression'. I had to wait for MIND to agree i was in 'mentally' good shape before i even got a neurology referral.
I will just wait a bit longer to see if those people Gambit62 Foggyme you mention have a comment about further testing and if not, I will just start supplement.
Low RDW means that the red blood cells don't vary much in size. It's possible that this could indicate all your RBC are all small (microcytosis) or all large (macrocytosis). Macrocytosis can be associated with B12 and folate deficiency. Microcytosis can be associated with iron deficiency.
Might be worth getting a blood smear (blood film).
Can you be B12 deficient with normal range results?
From a personal perspective, I know that it is possible to be severely B12 deficient with levels that are well within range. I had multiple typical symptoms including neuro problems which improved greatly with B12 treatment.
Above link mentions that some symptomatic patients have normal values of MMA, homocysteine and serum B12 and respond well to B12 treatment.
BSH flowchart (link further up post) mentions that GPs should think about continuing B12 treatment in those patients who have normal range MMA, Homocysteine etc if their symptoms have improved.
Thanks for this. Started to read some but proving a bit of a marathon when brain doesn't really work. Ill try in bits.
Ive never heard of a blood film sounds interesting. All the professionals that have seen my results are not interested in them. They say nothing to investigate so no, not been referred to Haemotology.
Thank you for the detailed reply im sure it will raise more questions as there are just too many possibilities and no doctor so far is entertaining this sort of thing. i guess if i just try the B12 it cant hurt. Thank you for the information.
I know there's a lot to go through but very worthwhile - as you say, break it up into small chunks. Maybe print it off and then do one thing at a time and tick it off as you go. Making your own brief reminder notes in the gaps can help too.
You'll be more clued up than those that are being paid a large amount to see you (or not see you!)!
I don't think your B12 levels are low. Yes, the serum B12 is towards the lower end of the range, but that test is neither precise not accurate. OTOH, the Active B12 is well above the bottom of the range. And we're always being told that this test is much more accurate. So I don't think it should be disregarded in favour of the less accurate test.
Of course, it is possible to have the symptoms of a deficiency with high levels of B12. And taking the supplements can't hurt (unless you turn out to be sensitive to methylcobalamin). But I wouldn't expect too much.
Yes i agree i probably wouldnt have said B12 bloods are desperately low either Im just trying to follow up on what ive read about b12 neurological symptoms as a possible cause. I will also have lumbar puncture soon so will find out from neurologist at my next appt if anything from that and my EEG.
Just so fed up of waiting for each test and appt i have to be doing my own research in meantime. As long as it doesnt harm me i guess no reason not to try. Thank you for reply
B12 levels don't have to be very low to have symptoms.
My B12 levels were in the 275-325 pg/mL range (while taking B-complex vitamins), and I still ended up with paresthesias, balance issues, exhaustion, and exercise intolerance. It wasn't until I tried B12 injections that my symptoms improved. After noticing the 300ish B12 levels, my doctor told me I "might feel better if I tried B12 supplements", so I started B12 sublinguals. They did make my blood labs look normal, and took the edge off my symptoms, but I still had the main problems. B12 wasn't making it into my nerves and brain in adequate amounts for some reason, even though my serum B12 and MMA looked fine once I started sublinguals. Thank goodness for injections.
If anyone has any idea why I seem to need sky-high B12 levels, I'd like to hear it! I had thought I needed a higher level for a short while to heal damage, but it's been 18 months and the tingles and fatigue come back if I don't have a B12 injection weekly.
Anyway, back to the original question... if you are having neurological problems, try B12 injections. I had an immediate and positive response to my first shot. This page was why I tried them: stichtingb12tekort.nl/weten... "As there is no ‘golden’ test, patients with clear neurological symptoms, and no other obvious cause for those problems, should be treated with B12 injections. When clinical improvement occurs the treatment should be continued. There are numerous stories of patients who have benefited from B12 treatment, despite normal blood results."
Also, after taking B12 injections, your potassium might drop temporarily, so be prepared for that. Low potassium makes one feel weak and tired. For a long time I took daily potassium water, especially on days I injected B12. This is discussed more on the PhoenixRising.me (forums.phoenixrising.me/) forums.
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