The reference ranges of my local hospital’s lab for Vit B12 is 197 to 711 ng/L and for Folate 1.9 to 25 ug/L. Is this typical?
Is Vit B12 deficiency defined as having a reading between 0 to 196 and Folate deficiency 0 to 1.8?
I would be interested in hearing what readings others had before they moved on to the specific PA blood tests like Anti-intrinsic Factor Antibody Test.
Different units of measurement are used by different labs so it would be like trying to compare a result of 6 ounces and 100 grams, ie you can’t compare just the numbers as you’d need to know what units of measurement were used.
In addition, I understand that different testing machines are used by different labs which mean that each lab will give its own definition of ‘normal range’ for the test that they’ve run. This might be different to the range given by another lab.
So what’s important is the range given for your blood test by the lab that carried out your test.
Using the ranges that you’ve quoted, you’re right to say that deficient would be below 197 and 1.9.
My first test result showed B12 at 163 which was below the normal range which started at 180. The lab used the same blood sample to then test for intrinsic factor antibodies and that came back as a positive result.
I added the measurement. Was the intrinsic factor test organised by your GP or by a haematologist? Was your Folate deficient as well?
The IF test was organised by my GP and my folate was fine.
My first b12 test was 106 range 200-900My folate was in range and so far is okay.
I had a parietal cell antybody test and loads of liver function celiac. They all came back as negative
My Inflammatory markers were very raised.
The total serum b12 test can be out uo or over by 20% I've read on here.
Ranges differ
Areas differ
Thars why symptoms so important.
Akso people function at different levels.
Good to have a bench mark.
It was my first ever b12 . Incredible really.
I'm not a vegan
Or a vegetarian.
Definitely an absorbtion problem ad need weekly injections.
Antibody /neg PA I suspect. Have too frequent b12 injections to get an intrinsic antybody test now.
Not as accurate and csn give false positives . So dont see the point.
I personally if have a test want it ti be accurate .
I'm certainly not stopping injections.
I was lucky in that when I was sent for a serum B12 test, my level was 196 ng/L (range 197-771 ng/L) so I didn't have to deteriorate further to get help.
My folate 5.5 (range 4.6-18.7 ug/L) and ferritin 46.3 (13-150 ug/L) while in range, were considered to be low enough to be contributing to my poor health, in particular to certain symptoms: hair loss, bleeding gums.
A good GP would look at the whole picture and all presenting symptoms.
My folate and ferritin levels were both erratic and unstable for about two years before reaching a good level and staying there.
Vitamin D is given to me on prescription as osteoporosis of the spine later found.
These are the most likely to be problematic if B12 is low. Thyroid check is also a good idea.
My Vit B12 is 201 and Folate is 3.7. The GP won't do the further tests because I am in the range; I explained that the balance and dizziness problems that I have been having which have been ascribed to BPPV could be down to low Vit B12; the answer which is true in one sense was to take supplements because that is the treatment. I asked about the low Folate and was told that multi vitamins would be fine and there was no need to take Folate Acid tablets.
My main concern is that this is in the context of chronic diarrhoea and the link between low Vit B12 and problems in the gut is not being made. I had infant bowel surgery and my gut has never been good (primarily constipation) and it has changed significantly in the last few years to diarrhoea.
Its important to tell your doctor that you had bowel surgery as a child . Depending on what was done , it could affect your ability to absorb VitaminB12 ,and account for other symptoms .
It was done at GOSH and I have been in touch with GOSH but the records have unfortunately been lost. The GP is aware of this. There's a large scar but nothing else is known about it. I spoke to the gastro consultant about this 6 months ago.
The first symptoms that I had in 2015 were daily diarrhoea, left hip and lower back pain -and fatigue like nothing I'd ever experienced. Diarrhoea can be a symptom of B12 deficiency - it is certainly on lists of symptoms produced by surveys of those that actually have B12 deficiency. Worth checking the latest NICE list - I have a feeling it is included there, and GPs often consult NICE guidelines.
Perhaps it is time for you to voice your concerns in writing, with a list of your symptoms?
Your B12 is low even if not out of range, your folate seems low enough to cause symptoms. Coupled with the bowel surgery mystery and the recent chronic diarrhoea, it seems worth taking further. An ileostomy, for example, would necessitate B12 injections for life, regardless of B12 serum level.
Have you any family history of B12 deficiency, autoimmune conditions; vitiligo, psoriasis, in particular pernicious anaemia ? This might also help get your GP to reconsider.
What other tests are you expecting ?
IFab test mentioned can well come back as a negative a few times before a positive- which would be the proof you need for a PA diagnosis. Martyn Hooper, founder of the Pernicious Anaemia Society had three tests before getting a positive result. I doubt that your GP would be willing to have you tested again, even if he was aware of this, and may see a negative result as confirmation of his previous decision not to pursue this.
Thanks for the reply.
In answer to your questions:
>Have you any family history of B12 deficiency, autoimmune conditions
Since 2005, I have had a rare bone disease called osteonecrosis caused by swelling in the bone marrow. It is linked with Vit D deficiency and after 10 years, the RNOH put the Vit D deficiency right. I am on high Vit D prescription doses. The reason why this took so long to diagnose is that the Vit D guidelines discourage routine testing by GPs.
>What other tests are you expecting ?
I have had a faecal calprotectin (very little inflammation), stool culture (ok) and faecal elastase; people with pancreatitis often have low Vit D deficiency; the inverse is not necessarily true (people with Vit D deficiency don't necessarily have pancreatitis).
I am requesting an MRI scan of the bowels and the stomach to look at issues with stomach lining (parietal).
>I doubt that your GP would be willing to have you tested again, even if he was aware >of this, and may see a negative result as confirmation of his previous decision not to >pursue this.
That's right. I am now taking Vit B12 and the levels will rise so another test should be well within the range. The balance problems and sometimes dizziness which has been put down to BPPV are improving.
The NHS dietitian arranged the Vit tests and Vit A and E are fine. Unfortunately the coagulation test was done so Vit K2 levels were not checked.
A couple of questions:
>The first symptoms that I had in 2015 were daily diarrhoea,
After you started taking Vit B12 supplements, did this clear up?
>Your B12 is low even if not out of range, your folate seems low enough to cause >symptoms.
Any particular symptoms in mind?
I asked the GP whether I should take Folic acid tests in the light of the levels and it was suggested that a multi Vitamin would be better. Folic Acid tablets or Multi Vitamin (excluding D3 and B12) or both?
Firstly, I'm not a medical professional and you have an overwhelming array of conditions going on. I wouldn't be able to advise you on what to take- not a straightforward answer to this. Mostly what I have are more questions, so excuse my ignorance, but hoping something here might help :
If I have got this right, you have a necrotic bone condition linked to your undetected Vitamin D deficiency, you have pancreatitis and had bowel surgery as a child. You have also been diagnosed as having BPPV and a dietitian checked fat-soluble vitamins and found no problems.
- If your condition affected your bone marrow, can this cause a production problem with red blood cells ?
- Performing surgery on a child's bowel does not sound like a decision that would have been made lightly. It does make me wonder if your ileum/ part of it was removed. Would any family member have an idea why the operation was needed ?
- I was under the impression that BPPV could be diagnosed only by eliminating all else - is there a test for this ? Because the "all else" would surely include B12 deficiency, vertigo/dizziness/balance issues being accepted as a common symptom.
- I'm also wondering why the other fat-soluble vitamins were checked: was the dietitian looking for signs of small intestine bacterial overgrowth (SIBO) ? SIBO can rob hosts of both B12 and fat-soluble vitamins.
Signs of folic acid deficiency are listed as "fatigue, loss of appetite, anaemia, burning tongue, gastrointestinal problems and diarrhoea". Many would see similarities with B12 deficiency symptoms here. Perhaps difficult to disentangle concurrent vitamin deficiency symptoms.
Note: If a folate deficiency is treated where a B12 deficiency also exists, the additional folic acid can mask both enlargement of red blood cells in testing and the anaemia associated with it. This can lead to a B12 deficiency going unnoticed.
I self inject with B12.
Over the past five years, some of my B12 deficiency symptoms have become rare, some are less frequent or less severe, some remain unchanged. All are capable of returning.
Right now, my hair doesn't fall out, my gums don't bleed, I don't hobble downstairs in the mornings on stiff painful feet- but I do still have daily diarrhoea.
Luckily, we are all different !
My latest blood test shows optimal levels for folate, ferritin , my methylmalonic acid (MMA) finally dropped within range about a year ago and my B12 levels are through the roof.
This is the best I've been since I became ill.
>If I have got this right, you have a necrotic bone condition linked to your undetected >Vitamin D deficiency, you have pancreatitis and had bowel surgery as a child. You have also >been diagnosed as having BPPV and a dietitian checked fat-soluble vitamins and found no >problems.
I don't have pancreatitis - faecal elastase test was normal.
>If your condition affected your bone marrow, can this cause a production problem with red blood cells ?
Not that I am aware of and the RNOH did the tests and corrected the Vit D deficiency with the loading doses etc.
>Performing surgery on a child's bowel does not sound like a decision that would have been >made lightly. It does make me wonder if your ileum/ part of it was removed. Would any >family member have an idea why the operation was needed ?
Siblings know as much as I do. Parents long dead.
>I was under the impression that BPPV could be diagnosed only by eliminating all else - is >there a test for this ? Because the "all else" would surely include B12 deficiency, >vertigo/dizziness/balance issues being accepted as a common symptom.
GP said this on the basis of dizziness symptoms. No Vit B12 tests were done at the time.
>I'm also wondering why the other fat-soluble vitamins were checked: was the dietitian >looking for signs of small intestine bacterial overgrowth (SIBO) ? SIBO can rob hosts of >both B12 and fat-soluble vitamins.
Just to a cautionary check. it's odd that Vit D , Vit B12 and Folate are all very low (Vit D now sustained by high prescription doses) but A, E and K1 are ok. It appears to shows that the problem is not fat malabsorption and the normal faecal elastase confirms this .
But quite common here for those with B12 deficiency to also have low folate, ferritin and vitamin D. You didn't yet mention ferritin: does this mean it has been checked and is okay - or that it hasn't been checked so far ?
Worth the ask.
GP told me that you can have symptoms at a level anywhere below 60ug/L , Oral Medicine consultant preferred it at 80ug/L. This despite range given as 13-150 ug/L - so can be overlooked as "normal- no action". GP thought this the reason for hair loss and bleeding gums, Oral Medicine thought that angular cheilitis and awful tongue might improve if levels higher. Difficult to make attribution as all treated at roughly the same time, all took a while to stabilise - and years to be able to say that general improvements will stay.
nhs.uk/conditions/iron-defi...
I haven’t had a ferritin test and because I have normal FBC it might not be easy to get the ferritin test. I’m technically not Vit B12 deficient because my level of 201 is above the threshold of 197. I don’t have hair loss or the other less common symptoms.
Since taking B12, my levels of energy have soared. The GP I spoke to didn’t think that the folate reading of 3.7 needed folate acid tablets and said a multi vitamin would be better. Would you take folate acid tablets with this reading?
I did at first, after the GP's 3-month treatment initially raised levels and then they dropped back to original levels within 6 months. The same happened with ferritin, which went even lower than previously a few months after treatment.
Once my folate was high, I just had a daily multivitamin & mineral to help keep it there, and once ferritin high-normal, ensured multivitamin tablets used had no iron content.
Seems to be working and is monitored regularly by GP- but it took two years (2016-2018) - so checking is just to ensure levels still stable now, once a year.
Difficult to work out which symptoms belong to which lack of vitamin, since many have very similar symptoms, and are treated simultaneously.
Thanks for the reply. What was the GP’s initial 3 month treatment?
Long time ago now (2016) - but 3 months of both ferrous sulphate and (I think) folic acid. At this point, I was also given reloading injections of B12 - two a week - as I became so much worse on 1 injection every 3 months, and MMA was first found to be raised, despite B12 level by then over 2000 ng/L .
The vitamin D was started about 6 months later, when osteoporosis was found too.
What were your Vit B12 and Folate levels when the treatment was started?
Vitamin B12 : 196 ng/L (range started at 197 !) and folate: 5.5 ug/L, ferritin: 46 ug/L (but went to 36 at a later point). Vitamin D not measured at the time, but Dexascan (due to breaking both arms at different times) found osteoporosis of spine. Lucky.
My Vit B12 reading is 201 (just about the range of 197) and folate is lower than yours. I spoke to a GP about this and was told that because I am out of the range none of the follow up tests can be done. I will take Boots Vit B12 and Folic Acid tablets for 6 or 12 months and then get another test to see how much the levels go up.
Please let us know how that goes.
Neurological symptoms should be treated with every other day injections until no more improvement can be gained.... which is why I was reloaded for six months at 2 injections a week (not the same as "every other day" -which reluctant nurses could not accommodate into their schedule)- along with a raised MMA test result. I then deteriorated again (not the same as "no more improvement")and at this point was put on 1 injection a month and sent to consultants, as it had gone beyond the remit of primary care.
First stop haematology- who tested my MMA four times, and always found it to be raised. When haematology told me that B12 was carcinogenic, toxic and highly addictive- but told my GP not to give me more than 1 injection every 2 months, I started injecting every other day myself.
Why not ? I was already struggling at 1 a month. It is after all the frequency advised by NICE yet appears almost impossible to get.
Why would you trust anyone who tells your GP one thing and you another ?
Why would you advise a GP to inject a toxic and addictive substance into a patient at any frequency ?
So then why lie ?
Go by your symptoms, keep a daily record - if you get worse, in particular if you have neurological problems or any new symptoms, go back to your GP and say so. Nerve damage can be irreparable.
I went into Boots to ask about B12 supplements and the pharmacist said that a level of 201 was very low and was surprised that my GP practice were not considering prescription. The only B12 tablets they sell are 10mcg. By chance my partner takes B12 from "Nature's best" because she has a thyroid condition. I assumed that there were same as the Boots B12 but when I tried them, they seemed to have a very different effect (made me feel wired) and when I looked at the label, I saw their dosage was 1000mcg (100 times stronger than Boots one). What OTC tablets does anyone recommend?
I see you can buy "intrinsic factor" supplements. There's no way I am going to be able to get the intrinsic factor anti body test so is it sensible to take these supplements when you don't know whether this is the underlying problem?
I know my next question is as long as a piece of string but what "typical" levels of B12 are found in people who are not vegans and don't have gut malabsorption or anything else that causes B12 deficiency (e.g. would 454 which is half way between 197 and 711 be normal)?
The pharmacist was talking out of their bottom.
Each lab has a different 'normal' range and there are two types of units they use. A value of 200 ng/L from one lab may be near the bottom of the normal range. A value of 200 pmol/L from a different lab may be well into the normal range.
I'll bet your partner's high-strength B12 were methylcobalamin. That's well known for making people feel wired. But if it was that then it means you must be absorbing the B12.
I would try some cyanocobalamin 100 mcg twice a day. If you can absorb oral B12 then that will get your levels way up in a few weeks.
Various studies have been done in normal people to see what their B12 is. Here is one from the UK, where they found the mean was 313 pmol/L with a standard deviation of 136 pmol/L cambridge.org/core/services...
That means that 68% of the normal population has a B12 level between 277 and 449 pmol/L and that 95% will be between 141 and 585 pmol/L.
Thanks.
On the ranges do the labs work quite differently?
You’re right that the high strength tablets are methylcobalamin.
I see that the difference between methylcobalamin and cyanocobalamin is that cyanocobalamin is synthetic. What’s the reason for recommending the synthetic variant?
Any recommendations on a brand of cyanocobalamin tablet?
Different labs will use different processes on different machines, hence the different ranges. You can take the same same samples and test it in different labs and the results will be different. Indeed, testing the same sample in the same lab can give results that differ by more than 10%.
Methylcobalamin is as synthetic as cyanocobalamin. Indeed it is more 'synthetic' as it is made by treating cyanocobalamin with methyl iodide (a chemical that's not great for the environment).
Cyanocobalamin is as effective as methylcobalamin, is cheaper and more stable and is less likely to cause side effects.
If it were me, I would choose these smile.amazon.co.uk/Solgar-V...
Thanks. On the folate levels, I am taking Holland Barrett 400mcg Folic acid tests (Boots was out of stock). How long would you guess it would take to reach say 12 ug/L from 3.7 ug/L?
Folic acid has a fairly rapid turnover. So much so that some places recommend tests should be done on a fasting sample, because the folic acid in a breakfast cereal might affect the result significantly.
That means that supplements should show an effect fairly rapidly. I'd guess a week or two of 400 mcg a day should get levels well above the bottom of the range. How high depends on many factors. I take 1000 mcg a day and my levels vary between 12 and 20 ng/mL. But I'm almost certainly heavier than you.
Thanks. Do Vit B12 and Folic acid deplete rapidly like Vit D levels do in winter? I was under the impression that in the case of B12 the body builds up a store that can last for quite some time?
Folate will go up and down rapidly, with the amount consumed.
B12 is different. If you do not have an absorption problem then the body can used stored B12 for four or five years. But this relies on B12 going into the small intestine and reabsorbed. Those of us with PA cannot do this, so level will drop faster.
Is this a broadly correct summary of the possible causes of B12 deficiency:
badgut.org/information-cent...
When PA causes it, it's lack of intrinsic factor.
It appears that many people with PA have Vit D deficiency. Is it known why this happens?
Vitamin D, Folate but not B12?
Low Ferritin with normal Folate & Iron?
Results MMA & Homocysteine
Low folate and b12, GP now checking vit D?
