Active b12 levels

[chloe2124]

I'm having a private active b12 test on Tuesday. What is classed as deficient? (My total level is 214 = no treatment being given)

[Sleepybunny]

Hi chloe2124,

Are you in the UK?

UK B12 websites

pernicious-anaemia-society....

PAS tel no 01656 769 717

b12deficiency.info/

b12d.org

martynhooper.com/

Are you already supplementing with B12? i have read that this may affect the test results.

active-b12.com/frequently-a...

b12deficiency.info/b12-test...

UK b12 documents

Recent UK documents have made it clear that people who are symptomatic for B12 deficiency should be treated even if their B12 levels are "normal" range

1)ukneqas-haematinics.org.uk/...

2)bmj.com/content/349/bmj.g5226

3) google "BCSH Cobalamin and Folate Guidelines"

fbirder has a useful summary of mainly Uk B12 documents. if you search for his posts you should find a link to summary.

B12 Deficiency Symptoms

b12deficiency.info/signs-an...

pernicious-anaemia-society....

See PAS Symptoms checklist

UK b12 treatment

1) See page 8 BCSH Cobalamin and folate guidelines

2) Management section in next link

patient.info/doctor/pernici...

Martyn hooper, the chair of the PAS has written several books about PA and B12 deficiency. His latest is up to datew ith UK guidelines

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

Another book I found useful is "Could It be B12" by Sally Pacholok and JJ. Stuart

[pvanderaa]

Start a logbook of all your symptoms especially the neurological ones. Try to assess your own severity score. Provide a list to your GP to include in your record.

The logbook also helps with short term memory loss when you discuss with your GP.

In the USA some diagnostic labs include a caveat that 10% of the population may exhibit neurological damage when results are under 400 pg/ml.

What is your folate level?

[chloe2124 in reply to pvanderaa]

It was 3.6 (when my b12 was 241) so was given folic acid 5mg but After 2 weeks of taking it I felt on my deathbed with fatigue so stopped it. Had another blood test and my folate was 24 but b12 reduced to 214 so not taken it since even though I should have been on it for 4 months

[pvanderaa in reply to chloe2124]

The folate was helping B12 do its job.

It is a balancing act to get the two working together correctly.

When B12 is being used by the cells and your have enough folate and minerals available, metabolism kicks into high gear. My opinion is that the tiredness you felt was a result of the backlog. I've called it detoxification and been criticized for it but it is a real symptom that is usually due to the jab.

The stronger this symptom, the lower you were before the jab.

For me, the trick was to get the B12 right and then take as much folic acid as I could tolerate. For a long time it was 3.2 mg as 5 mg made my ears thump and I felt like c**p.

[chloe2124 in reply to pvanderaa]

The stronger the symptom the lower I was on the folate or the b12? In you me opinion do I need the jab then or just the folate and just bear with the tiredness?

[pvanderaa in reply to chloe2124]

I'm thinking you need more frequent B12 and the right amount of folate to balance it.

Use your logbook to monitor how your symptoms change.

I found my symptoms very confusing until I figured out which ones came from the jab and although they appeared to be similar to other symptoms were actually indications that the B12 was working and I was moving in the right direction.

Pain is one that is counter intuitive because we all avoid pain. However, in the repair of nerve damage, the signal on the nerve is stronger and may be interpreted by the brain as pain. It is an illusion while the brain recalibrates to the stronger signal from the repaired nerve.

Knowing that what is going on is "good" allows you to get some control back and not stress out. The chemicals involved in stress make symptoms like pain appear to be much worse than they really are.

[Gambit62 Administrator]

The results of the active B12 test will come with a range - however, this still suffers from the problem that it is based in part on statistical averages and human beings are not statistical averages. The serum B12 test has the same problem.

It is probable that it is only being off the bottom of the range that is going to be regarded as deficient - think the bottom of the range is usually around 25 (but it would depend on the units that are being used do the test - and may depend on the exact equipment being used).

[Jo5454]

Hi, I had my test via St Thomas, in case you're having it there and it stated if active b12 is between 25-70 they test for MMA. Less than 25 is deficient, 25-70 could be. The MMA had to be between 0-280, mine was 708 so therefore functional b12 deficiency. My serum b12 was 261, range130-1100, so shows how wrong that was! Good luck...

[chloe2124 in reply to Jo5454]

That's interesting! Im going through blue horizon, don't know if they do mma though... What is that test?

[helvella in reply to chloe2124]

You will find it, along with many more acronyms and abbreviations, here:

dl.dropboxusercontent.com/u...

[helvella in reply to helvella]

Now I have finished my main course...

MMA = Methylmalonic acid

Have a look here:

labtestsonline.org.uk/under...

labtestonline also have an app for Apple IOS and (I think) Android.

[Jo5454 in reply to chloe2124]

Hi chloe2124

Sorry for slow reply, only just found this! MMA is used as an indicator of b12 deficiency and seems to be considered even more reliable than the Active b12. As I said St Thomas do it automatically if your activeb12 is in their grey zone, so guess by them doing this for such a wide range25-70 shows that it is possible to have high MMA and b12 probs even if you're nearer the top end of that range, if that makes sense.

Seems it can be raised with thyroid probs, overgrowth of bacteria and kidney probs although they do a test on your sample to check for something kidney related before going on to to do the MMA, so it seems if active and blood serum are on the low side and MMA high it's considered b12 def.

The test is taken from the original active b12 sample you send, so nothing extra required.

St Thomas do a separate MMA test which costs £96, but it was free in my case due to being at the bottom of the grey zone.

Hope this helps

[chloe2124 in reply to Jo5454]

This is useful thanks, had sample taken on weds so don't have results yet. Hope there was enough blood as she could only get a 1/4 of a tube of blood!

[Jo5454 in reply to chloe2124]

Fingers crossed she got enough! Would love to know how you get on...

[chloe2124 in reply to Jo5454]

Just got my result and its 39 (25.1 to 165) what do you think

[Jo5454 in reply to chloe2124]

Hi Chloe, glad there was enough for the test to take place! That looks very low doesn't it. Seems it's a similar range to St Thomas, and I said they automatically test for MMA if it's between 25-70. Will your dr consider your active b12 result? If not I'd personally be requesting an MMA, or a referral for an active b12 test via st Thomas for £30, and presuming the test results are similar you'll get an MMA for free. If this is high and a deficiency result is given your dr will have to listen!

Good luck, let us know what you decide...take care

[chloe2124 in reply to Jo5454]

Thanks so much. Dr won't listen still so paying for an MMA and need more blood taken as there want enough for them to do it with the same sample. It's £200 put just paying it as don't have the energy to fight with the dr. Will let you know what mma comes back with. Thanks so much for your help

[Jo5454 in reply to chloe2124]

So he won't refer you for a postal one at St Thomas? It's just under a £100 there? You're more than welcome, yes, please let me know how you get on...

[chloe2124 in reply to Jo5454]

Nope as thinks it's a waste of time. Got the blood taken today, it's a 7 day wait so should know next Fri hopefully

[Jo5454 in reply to chloe2124]

Hi...it's so appalling they won't listen isn't it, well that doesn't begin to cover it. Well done for getting on with it and roll on next Friday! It just takes such a lot of effort and energy to keep fighting them. I had a real struggle convincing mine for the active b12 referral and had been told previously that only really ill people need tests like mma! And that with b12 at 261 I have loads of b12! I had so many symptoms and have been under the diagnosis of m.e for 17 years, so just think it wouldn't hurt to help you to rule things out if nothing else. I'd have done the same as you otherwise. Have just done a pinprick test this morning to rule out thyroid probs as have been refused antibody tests too, at least I'll know either way. Thank goodness for these tests available and the support of these sites.

Have you been taking any b12 supplements?

Please let us know how you get on...take care

[chloe2124 in reply to Jo5454]

It's so fraud tearing isn't it, sounds like you've been through the mill. are you getting the injections now? How often? I had a GPC test which I think is antibodies but it was normal so b12 def was ruled out then. I started a multivitamin spray yesterday (better you brand) but it seems to make be very tired for some reason. I took tablets a couple of months ago and had the same issue, don't know if you feel worse before you start feeling better?

[Jo5454 in reply to chloe2124]

It just shows little they know to rule out b12 on the results of a GPC test. I requested one alongside the intrinsic factor after I found out the active b12 results, but was only allowed the latter. I'm off to gasterenterology next week so am keen to know what they might do/ suggest. Even if Gpc and I. factor are negative that doesn't mean there's not a problem with b12. Don't know if you've got a copy of Martyn Hoopers recent book, if not I'd highly recommend it.

Yes, once I got the results in my hands ( had phoned the Drs and told no action, big error!!) after another 2 1/2 week wait I was given the go ahead for a loading dose. I was given 2 weeks, argued for more as I have lots of neurological symptoms, but no go! Am having them once monthly, just had my third, until I get seen at hosp.

Sounds like you have a folate and b12 def doesnt it, and the first shouldn't have been treated without the b12 , so let's hope this next test throws some answers so you can soon start to feel better....will write more in a while...have to go

[chloe2124 in reply to Jo5454]

Have the injections not made you feel better? How come you are needing to go to hospital? Started taking better you multi vitamin over last couple of days which has 240% RDA of meth b12 and 200% folate. It's making me feel so tired though! Any ideas why that might be?

[Jo5454 in reply to chloe2124]

Hi Chloe, yes the injections are def beginning to help some symptoms, it's just taking time, but was warned that by many on here before I started them. It takes 3-4 months to renew all the depleted blood cells, then, then if you've been unwell for a while your body's got to heal and recover and build up.

When I was was trying to get more than 6 loading doses from my dr due to all the neurological symptoms, he wasn't budging, and in the end decided to refer me to a gasterenterologist. I'm guessing they'll try and discover or rule out main causes of b12 deficiency. Am worried I won't be allowed to continue these injections, certainly not this regularly, for long, so hoping I'll get somewhere at the hosp! At the time I thought a neurologist apptment would've been handy and should've asked for one, but will ask it at this apptment.

Don't lose heart, if your symptoms are due to b12 def. you'll no doubt need much more than that dosage, there's a 1000 mcg in each injection, and I only started to feel a difference after 6, then lost improvement until next one, but finding each time it seems to be lasting a bit longer.

Remember you've got low b12 and folate, that's two deficiencies to resolve, so you're no doubt feeling rotten.

I've now discovered a raised tsh through my pinprick test, so have now got to tackle dr about that, erk!

Roll on Friday for your results...take care.jo

[chloe2124 in reply to Jo5454]

Results are back - very early. Not what I wanted though as MMA is 0.27! Anything less than 0.29 is fine, between 0.29 and 0.7 is poas deficiency and above 0.7 is deficiency. Wonder why the numbers were so different to yours unless it's a different metric. God know what I'm to do now...

[chloe2124 in reply to chloe2124]

Umol/l is the unit for mine

[chloe2124 in reply to chloe2124]

My figure to compare with yours is 270

[fbirder in reply to chloe2124]

0.29 umol/L is the same as 35 ug/L or 35 ng/ml

I'm guessing that Jo5454 was quoting results using one of those units.

[Jo5454 in reply to chloe2124]

Hi Chloe, sorry for delay in reply, hosp Monday, worn out yesterday! Sorry the result didn't show as high, but it is near the top of the range. How long have you been feeling unwell? As we said before, even if the MMA doesn't show high, it still doesn't mean you don't have b12 problems, and you obviously have low folate. It's just figuring whAt to do next...have you considered joining PA society and asking for their opinion? Also Dr Chandry. He was extremely helpful to me when I emailed, and asked me to ring him to discuss it...

I'll read back through your other posts and get up to date...take care, bye for now x

[chloe2124 in reply to Jo5454]

Not heard of that Dr, I will search for him. Just feel like giving up now, I'm too tired to fight the dr. How did your appt go? Xx

[Jo5454 in reply to chloe2124]

Hi Chloe, so sorry for slow reply...have been reading through all of your other posts to see if I can think of anything else, not that I know too much! Have you had a thyroid test recently? Couldn't see anything about one in your posts? I've often wondered if my symptoms of 17 yrs are related to thyroid, so asked the thyroid health unlocked for help. I was advised by them to check and get my b12, ferritin, folate and vit d in upper levels of range to ensure thyroid is working well, before I consider further testing. As it turned out I was lucky enough to finally get a diagnosis of b12 deficiency, so put the thyroid idea on the back burner. I tried vit d last year, ( was also diagnosed with mild osteopenia) and like you concerned about my bones as I've had to give up dairy due to previous sinus probs. I couldn't be sure the vit d wasn't making me worse as I kept getting persistent infections all year,so gave up on it in the end, but it could have been purely coincidental and solely down to undiagnosed b12 def and low iron. So will prob retry at later date! Anyway after 3 months of b12 treatment, decided to do a pinprick test with Blue Horizon to check thyroid antibodies, seeing as this was refused by docs and TSH (which I noticed on printout has beenbrising) and tsh has come back higher, so looks like I have a potential thyroid prob too, which I'm now wondering is linked to difficulties In keepingall these levels up?

If you have had your thyroid tested, do you have your actual results?

I'm so sorry you feel so tired and fed up, I know how you feel, but please don't give up. Is there another dr at your surgery who has anymore experience with b12/ folate?

I've read some people have better luck seeing a haematologist for help sometimes? Seeing as you are already under the hospital with your epilepsy can you ask if there is anyone, whether it be neurologist, gasterenterologist, haematologist in that hosp who has any b12 knowledge? I appreciate how difficult it is when already having epilepsy to cope with. Is this under control with medication? I'm sure I read in Sally Pachoks book of a person with epilepsy that improved with b12, will look that up...

I think my next move would be to try the above, check thyroid results, then also contact dr Chandry at b12d.org for some advice and explain to him your conditions. The PA society would be worth contacting, but you do have to be a member.

I hope you soon get somewhere with this all, keep your hope up, take care...Jo x

[helvella]

Are you sure that is Active B12? I've never seen such a high Active B1 result. That reads as more likely a standard serum B12 result.

The thread is over five years old.

[helvella]

I didn't get alerted to your reply, as you replied to the original poster - not me.

I strongly suggest you write a brand-new post rather than continuing to post on this very old thread. Others might actually get to see your post if you do that.