Pernicious Anaemia Society
16,237 members11,316 posts

B12 or Iron? advice needed please

Hi please can anyone offer advice, i was sub lingually supplementing B12 and my levels were 407 on the serum test, then they did a blood test in April and said i had a transferrin saturation of 11 so gave me iron supplements and vitamin c, they said by B12 was in the normal range, i stopped supplementing the B12, took the iron and 8 weeks later my levels had dropped to 268, so i paid for a private viapath test in July for active B12 and my level was 300, MMA was 270 and folate 4.1, Homoscysteine is 10.1

I have been to my doctor in tears because I am plagued with mouth ulcers (like 7 at a time for the last 2 years, have tinnitus (no known cause), am tired all the time and have no sex drive, i get pins and needles sometime and both parents have b12 injections. They write to haemotology who said my B12 levels are in the normal range, that i was low once (but didn't say what it was) in 2000. They suggested its low iron and are pre-menopausal symptoms (even though i am 45 and been getting ulcers for years), they seem to have ignored that i was taking the b12 under my tongue which if i am right by passes absorbtion

I need to write back to them and i really need some advice please from someone who knows as its a minefield and i am sick of feeling low

thanks in advance if anyone can help

11 Replies
oldestnewest

absorption from sublingual B12 is, in general comparable to passive absorption from large oral doses - averaging about 1% of the dose taken. This can raise levels slowly but it depends upon the person and the exact dose being taken.

Normal range is where most people are okay - that means its a guide rather than a straight-jacket and there will be outliers - people who naturally have levels above the top of the range and some how naturally have levels below the bottom but are perfectly okay. Where something has a large range - like B12 and folate - this can make diagnosis rather difficult which is why symptoms are important. This is logic rather than science but many GPs seem to behave as if normal ranges are straight jackets and you are okay inside and not okay outside.

Could you give the test units and ranges for the tests - different units get used and different test methods so it is important to have these not just the numbers - but it looks to me as if your MMA is probably in range, your active B12 at 300 is well above range, your folate may be a bit low> not sure about homocysteine but this could be raised by low folate as well as low B12 so would not be conclusive of B12 deficiency.

Folate isn't stored so is quite responsive to dietary intake. B12 is stored in quite large quantities so generally remains quite constant in level - though the test itself isn't extremely precise so doing the test on the same sample several times will give results within a 20% range - though the drop you mention would seem to be outside that range so would be significant and as such imply a B12 absorption problem.

Active B12 is generally 20% of serum B12 - if not that could indicate a problem metabolising B12, but I'm not an expert.

The symptoms of folate deficiency overlap considerably with those of B12 deficiency, and there is also quite an overlap with iron deficiency.

Has anything been done to investigate the low iron levels?

Reply

HI thank you for replying, no they haven't looked at why the iron is low they just said it could be pre-menopause and a course of tablets with Vitamin C would be recommended

These are the units and ranges:

In March (when they first said Iron):

Serum ferritin 184 ug/L (range 10-150 ug/L)

Serum transferrin 3.6 g/l (Range 2-3.6g/L) ,

Serum Iron level 10 umol/L (range 7-26umol/L)

Serum folate 11%

Serum B12 was 414 n/gL (Range 191 - 663)

Took iron supplements for 2 months and stopped b12 and these were the results from St Thomas's tests (they didn't redo the Iron):

Vitamin B12 (serum) (i got this the wrong way round sorry) - 300 ng/L (range 187 -883)

MMA 270 nmol/L (range 0-280)

Active B12 (HoloTC) 115 pmol/L (range 25-108)

Homocystiene 10.1 umol/l (range 0-15)

Serum Folate 4.1 ug/L (range 3.1 - 20.5)

Vitamin D 110 nmol/L (range 50-200)

Ferritin 167 ug/L (range 22-275)

Many thanks again

Reply

Also i have just seen on the print off the FBC (which the Haemotologist has written back and said is normal in tests) is as follows from the 20th March this year :

Total White cell count was Result 9.48 / Unit: 10*9/L (range 4.00-11.0010*9/L

Red blood cell count result 4 / unit 10*12/L (range 4.10-5.1010*12/L)

Haemoglobin estimation result 118 / Unit g/L (range 120.00-150.00g/L)

Haematocrit Result 3.359 / Unit l/l (Range 0.36-0.46 l/l)

Platelet count result 465 / Unit 10*9/L (range 140 - 400 10*9)

Lymphocyte count 3.17 / Unit 10*9/L (range 1.00-3.00 10*9)

All those have exclamation marks against them

Reply

These results indicate microcytosis - your red blood cells are a bit on the small side.

Not sure about the white blood cell elements and the platelets being high

Unfortunately the results from St Thomas don't suggest B12 deficiency as MMA and homocysteine are both in range - B12 deficiency is associated with really high MMA.

The fall in serum B12 levels is borderline on significant - difficult to know as would be different kit.

The only thing that looks odd is the ratio between serum and active B12

Reply

Ok thats great thank you for getting back to me, its worth looking more into the iron issues, i wonder if the symptoms are due to that i guess no harm in taking a course of those and see how i go

Reply

I think that would be a good idea.

It might also be worth contacting St Thomas to ask their opinion on the ratio between serum B12 and active B12 and see if they feel it might be worth following up on that at all.

Reply

Ok i will do thank you be interesting to see what they say

Reply

have you been checked for h pylori? i had it with no heartburn (the main symptom) just lack of appetite and some nausea.

when the body has a chronic infection, such as h pylori, it shuttles iron into storage (ferritin) due to all bacteria needing iron to survive and proliferate.

This means serum iron is reduced and in my case white blood cell count was high in range, just like your results show.

when i took iron, due to low serum iron, i would feel better for first 3-4 days but then felt worse after that.

These doctors are idiots. why would you need iron when you have massive amounts stored in ferritin?

its called anemia of chronic infection and/or inflamation. please google this. These idiot doctors told me my issues could be early menopause starting when i was 30 and i still have my period at 47.

if you dont have h pylori you have some other chronic infection, in my non medically trained opinion. but i have lived it and it made me feel crap, crap and more crap!!!

best of luck and health.

1 like
Reply

Hi Kimber, that’s a good point no I haven’t ! and googling it I had campiliobacter chicken food poisoning a year ago in May and was REALLY poorly for ages afterwards they tested me and it definitely was

Reply

if you are going to get tested for h pylori the breath test is best, in my opinion. you cannot take any acid reducers, ppi, h2 blockers, tums, for a minimum of 14 days prior to testing. also i recommend testing in an overnight fasting state because they recommend 1 to 2 hours of fasting, including water and smoking. i say overnight because h pylori reduces acid so if you eat breakfast and then test 1-2 hours later you could still have breakfast in the stomach. i dont know if that would make any difference but better safe than sorry.

also your platelets could be high to stop bleeding in stomach from h pylori caused ulcers. these might be small at this time and not causing any serious pain yet.

Reply

Not on any acid reducers and sometimes get acid indigestion, get IBS but had that years. I’ll see what the doc says this week, just want some answers :-/

Reply

You may also like...