Folate

[caro43]

Hi, what is ideal serum folate levels? Thanks!

[Foggyme Administrator]

Hi caro43. The aim is to have folate levels that are in the top third of the reference range.

Bumping along the bortom of the reference range is not good enough, particularly for someone with B12 deficiency.

As you're on injections every other day, your body will use up folate pretty quickly.

Do,you know what your folate levels are (and the reference range)?

👍

[caro43 in reply to Foggyme]

the reference range was just >3. Mine were 17.7 before shots.

[Foggyme Administrator in reply to caro43]

Hi caro43. Hmm...the reference range for folate is usually two figures, with the number you are at sitting somewhere between the two.

For instance, there are two refernce ranges for folate:

1) 2 - 20ng/ml

2) 4.5 - 45.3nmol/L

(The reference ranges are different because they use two different units of measurement - and the one used to present your results will depend on which type of machine the labs use to run the tests).

If the first measurement and reference range (2 - 20ng/ml) was used in your test, then 17.7 would be okay because it's in the top third of the reference range.

If the second measurement and reference range (4.5 - 45.3nmol/L) was used in your test, the 17.7 would put your result in the bottom third of the reference range - making you could do with more folate (to raise your level to the top third of the range - aiming for between 30ish - 40ish (but really there's no precise figure, so long as it's in the top third and preferebLy not over the top).

So....do the reference ranges above look like anything that appears on your results?

👍

[Caro44 in reply to Foggyme]

My test says vitamin B12 and Folate. The B12 is vey high but it is not active. then it says Folate9Folic Acid), serum 17.7 reference interval >3.0. Then it says anything below a 3 is considered low. i couldn't reply as caro 43, so i thought I was banned for some reason. But, since you are an admin asking me a question, I am hoping I am not

[fbirder in reply to Caro44]

The B12 is vey high but it is not active

It's very rare for people to have high serum B12 but low 'active' B12. So I wouldn't dwell on that.

[Lizzy86 in reply to Foggyme]

Foggyme - I am following this line about Folate ranges with interest my reference range is shown as 4.6 - 18.7 ug/L with a reading of 7.66 my B12 at this time was 135.2 reference range 180-2000 ng/L

Very confusing with the different references. I am self injecting 4 times a week (just taken injection 36) and taking a multivitamin and Methyl Folate 400mg daily - so far no improvements at all - Folate is mentioned so often on this site but never with details so glad at last to see in detail

[Foggyme Administrator in reply to Lizzy86]

Hi Lizzy86. The top and bottom numbers in the reference ranges for two 'measuring schemes' may differ slightly according to calibrations on the particular machines used - so what you say about the reference ranges quoted for your tests sounds right.

From what you say, it sounds as if these were results from when you were originally diagnosed?

Really sorry that you've noticed no improvement so far. For some people, it does take time.

Have your ferritin levels been checked - low ferritin can cause symptoms similar to B12 Deficieny. Optimum level should be 80 - 100, but not all GP's know this).

And here's a thought - has your GP ruled out other possible causes for your symptoms (thyroid - in particular Hashimoto's thyroiditis, diabetis, etc.).

And if you have neurological symptoms, you should be referred to a neurologist to rule out other causes.

Really hope you begin to feel better soon 😀.

[Caro44 in reply to Foggyme]

My ferritin is 46. It was 39 a few months ago. That can cause symptoms like B12 deficiency? Does raising it reverse the symptoms, do you know? Mine dropped from 100 to 39 in about 8 months. Thank you!

[Foggyme Administrator in reply to Caro44]

Yes, raising ferritin will reverse any of the symptoms of ferritin deficiency - if your range is between 80 - 100 and symptoms do not improve, then the symptoms are likely due to other causes.

Here's a site where you can find out more about ferritin (and there are lots of others on the Internet if you want more information):

irondisorders.org/iron-defi...

👍👍

[Lizzy86 in reply to Foggyme]

Hi Foggyme - I have over the years been tested for most things first referral to Neurology in 2003 at that time told I was expecting too much of myself (I was complaining of very poor balance) every couple of years I would got back to GP - in 2014 Neurology again then told CFS/ME that department didn't won't me either - it was an Ophthalmologist in 2016 (I'd been referred because of possible Glaucoma which thankfully I don't have) who suggested B12d and sent me for blood tests there and then. I don't think my ferritin has been tested not shown up on blood tests 2014 or 2016 and as I have said now self injecting four times a week in the hope that time will show an improvement - main symptoms are fatigue poor concentration balance and problems walking and PN in toes mainly at night (several years ago was in the daytime).

Thanks for you interest.

[Foggyme Administrator in reply to Lizzy86]

Good luck Lizzy86...it's a long haul, isn't it...with not a lot of interest from most doctors 😖.

Improvement can be slow so don't lose heart and please do put up. Ore posts if there's anything we can help you with.

Don't know if you've seen the PAS pinned posts and the PAS website.

Also more good, information at b12d.deficiency.info.

Take care 😀

[Caro44]

My test says vitamin B12 and Folate. The B12 is vey high but it is not active. then it says Folate9Folic Acid), serum 17.7 reference interval >3.0. Then it says anything below a 3 is considered low. i couldn't reply as caro 43, so i thought I was banned for some reason. But, since you are an admin asking me a question, I am hoping I am not

[Foggyme Administrator]

Hi caro44. My goodness, of course you haven't been banned 😀. The only reason that would happen is if you'd been abusive or were cosistantly giving out dangerous advice and didn't stop having been asked to do so. The platform does play up sometimes - reply's disappear before you can post them or you simply can't get into something, so,suspect that's what happened here. So, no worries 😀.

So, first, the folate....the sign < means less than, so it the deficiency range is set at <3 (less than three) it looks as if the reference range used is 2 - 20ng/ml, so,your results of 17.7 is in the top third of the reference range, so okay when this test was taken. But with high doses of B12, it is likely (but not definite) that this will drop because your body will,use folate to help process the B12.

When folate levels are at the right level (yours were when this test was taken), people on B12 usually take 400ug as a maintenance dose of folate. Will this be enough when on high doses of B12 - to be honest, don't know - 'cause bodys works differently and it's very much an individual thing. Are you able to get your GP (or similar, if not in the UK) to help you with this - perhaps test your folate levels in say, four weeks, and then every so often, to make sure you body is maintaining the right level?

You say your B12 is high - had you already been taking supplements when the test was taken? (This would have pushed your levels up.)

Assume you had the Active B12 test? When you say the B12 'is not active' - does it give a figure within a reference range? (Assume not 'cause you don't say).

It's more usual for some B12 to be active and some B12 to be active.

The only reason all your B12 will be inactive is if you've had nitrous oxide (through a mask for pain relief, as part of a general anaesthetic, or as a recreational drug). Nitrous oxide is know to deactivate B12.

If you haven't been given or taken any nitrous oxide, I'm a bit confused about all your B12 being reported as inactive 😖. But my knowledge if this test is not extensive, so perhaps others may comment.

Anyway, hope this helps.

Good luck and let us know if you need anymore help.

👍👍

[Caro44 in reply to Foggyme]

Thank you for the reply. I've had nitrous many, many times in my life. My teeth are a mess and the dentist gave it to me. I didn't know I had MTHFR until recently. Over the last 25 years, I have it for 6 root canals which took hours and for cavities and even possibly for the many "twilight" surgeries and diagnostic procedures. o, my B12 has likely been low all this time- or rendered inactive from the nitrous and I never put it together.

[Foggyme Administrator in reply to Caro44]

Ah ha...It is not necessary to use nitrous oxide in anaesthetics - there are other things that can be used.

In future, advise anaesthetist or dentist that you have a B12 deficiency and that they should not give nitrous oxide (some may know this, some may not).

Local anaesthetic is okay.

B12 injections should help....hope you begin to feel better soon 😀

[fbirder]

If both your B12 and folate are high then it's quite unlikely that your neuropathy is due to a deficiency of either. Unless you have a functional deficiency - in which case an MMA (methylmalonic acid) test will give high results.

But I would definitely be pursuing the diabetes line of inquiry by getting an HbA1c and a glucose tolerance test.