Active B12 test results

[Doeyditdot]

Hi

I had been unwell for sometime and wasn't sure what it was. I was very anxious and had terrible tummy trouble & hideous indegestion. Dr order Bloods and they all came back normal except Magnesium and potassium and I think Folate? for which i took a course of meds. The Potassium and Folate seemed to become back in normal range but the magnesium was still a problem. i was on a merry go round supplementing getting Diarrrhea having a blood test, back on the supplement, having Diarrhea having a blood test blah blah blah. Told different Dr could not continue and she ordered some refferals to gastro CT scan etc. They didnt really find anything so they suggested going Gluten free which I did and have been (since summer 2021). Still had a few issues with the tummy but it made a big difference. Then in 2022 i went through a traumatic emotional event and started to loose weight (10kgs in all) this came along with more anxiety, depression and a number of B12 deficiency syptoms like pins and needles, breathlessness, brain fog, memory problems, couldn't find my words, sore tongue, dizziness, burning pains, mood swings and of course the most debilitating fatigue! These symptoms come an go so i dont have them all at once thank the lord!!

so to cut to the chase 2023 March I had B12 serum 226 ng/L started using OTC B12 spray in about May. I had another follow up B12 was 375 ng/L so Dr convinced that i do not have PA or B12 deficiency. Stopped all B12 supplement retested in October 275 ng/l. now i have been refused any more tests so i wrote to the Dr and explained all i had learned over the long and frankly horrific journey, where to find info for professionals from PAS where to find new Nice guidelines and she reluctantly sent me this lovely text (4 weeks later btw)

I have read your letter.

I will send you a blood test appt. B12 levels are treated according to local guidance which i am clear on

we can review things once an up to date B12 is received

Honestly i could have cried she booked the appt for another 4 weeks away early May. luckily the surgery had a slot earlier so 18th April it is.

Meanwhile i thought i should try and get some back up so took a blue horizon Active B12 and got my results today.

59 😱 so new NICE guidance is active B12 @ 25 - 70 pmol/L indeterminate test-possible B12 deficiency phew👏

However my most recent result 275 ng/L in October now also falls into the new range of serum B12 180-350 indeterminate test-possible B12 deficiency

so after all that rambling (sorry some of it may be in the wrong order)!

I have some questions

1 can emotional trauma kick off worse symptoms?

2 could i have been right all along?

3 could it be something else?

4 what can i do if they are not using the new guidance as it seems the NHS has yet to catch up

your thoughts are most welcome 🌼🌸

[charks]

The whole B12 testing and GPs is a lottery. You can get a sympthetic GP who will help or, as in most cases, they treat you having ' women's problems' and just give you antidepressants. Even if your B12 level is really low if it doesn't fall below the 'magic number' they say you can't have B12D. The problem with the NICE guidelines is that they are just guidelines and GPs can ignore them and most do.

I agree that your symptoms indicate B12D. And any sort of stress can make things worse. And the way your GP is treating you isn't helping. To be honest I don't think she is going to be much help. Did the oral B12 help with your symptoms?

[ClaireWF1346]

Your symptoms are all typical of B12 deficiency. I am new to this forum and this journey...but from what I am learning is that blood tests are important but symptoms are what GPs should be addressing. I've had a nightmare with my own GP practice and have a formal complaint ongoing with them. I have also sent them the PAS advice for professionals 😂 but haven't received a response so unfeeling like you have. I have given up waiting for my GP to refer me or do anything further (I had 6 x B12 injections then was sent away with tablets) so I am seeing a private specialist in Cambridge. Recommended by many on here and appears to go on symptoms.

Trust your body. You are NOT going mad. I have to tell myself this every day. I am sure that emotional situations make some of my symptoms worse - I wouldn't be surprised. Even seeing a friend for coffee for an hour absolutely drains me at the moment. Good luck with your next tests and stand your ground with those GPs!!

[Doeyditdot in reply to ClaireWF1346]

Thank you for your reply

I will try 🌸

[grumpyold in reply to ClaireWF1346]

I am just about to start the diagnosis battle with my GP. Sure I won't get anywhere.

Wishing you good luck with the specialist in Cambridge. PLEASE let us know how you get on.

[ClaireWF1346 in reply to grumpyold]

Will do. So far I've sent a 5-page complaint letter relating to them overlooking my symptoms, including those indicating nerve damage, by trying to suggest it may be sciatica or "something else", simply because my IFAB test was negative. So I informed them why that is wrong. They also had no additional diagnostic tests lined up for me so I provided them with educational links on B12 deficiency diagnosis and treatment. They patronise me, so I thought I'd try the same 😜

I have now told them I'm seeing the Cambridge specialist and have requested that moving forward they prescribe me injectable B12 that I can self-inject, instead of the 1mg pill that will not work for me since my diet is already saturated with B12. I will fight on, and come back with any positive updates!

[grumpyold in reply to ClaireWF1346]

Your story sounds so like mine. Makes my blood boil, the way they gaslight patients.

I am having a telephone appointment with GP tomorrow to further plead my case, but I'm not expecting to be listened to nor heard so I expect I'll be contacting Dr Klein too.

"Stir you courage to the sticking point" and "Once more into the breach" ....we mustn't let them win!

Yes, please do keep us informed. Wishing you all the luck in the world. x

[ClaireWF1346 in reply to grumpyold]

And to you. My GP seems obsessed with the meralgia parathestica (numbness) in my thigh; the very least of my concerns! No real concern for my cognitive changes that affect my daily life, just my numb thigh that intruiges her! I do believe that it's possible to make a difference with reasoned argument. If I can help one future B12 patient at my surgery by my actions, I will carry on.

[grumpyold in reply to ClaireWF1346]

My GP has been dismissing blood tests of mine going back to 2016 which show macrocytosis. I also take Metformin which is known to lower B12. Even the new NICE guidelines stipulate that this is a box 2 factor, to be taken into consideration. My MCH has nearly always been above range and I have so many symptoms. Like you though, a negative IFAB test.It's so frustrating when they are so blinkered. 🤬

Take care and keep in touch. x

[Dancer57]

Hi

Sorry to hear what you are going through but it is not new from my own experience which is this:-

Tested privately Active B12 last September, result was 28.6 (borderline deficient). I also did a Methyl Malonic Acid urine test which was suggested by the testing company and my result was high, both results suggesting I am B12 deficient at cellular level.

However, my GP at the time looked blank when I mentioned the above and basically did nothing or suggest anything. I also tested positive for Autoimmune Antibodies to Parietal Cells but negative for Intrinsic Factor so they not bothered.

I now have a new GP and on registering with them and filling out blood test form, I asked the nurse if my Active B12 could be tested bearing in mind the new Guidelines, response was, didn't know they had changed. When checking form to see if it could be requested there is no option for them to even request an Active B12 test. So conclusion is that unfortunately it doesn't look as though the new Guidelines have got as far as GP surgeries. Its an uphill battle.

I wish you good luck.

[Doeyditdot in reply to Dancer57]

Thank you for your reply

Fingers crossed 🤞

[bookish in reply to Dancer57]

Hi, as your MMA was high, you could ask for an Adult Inherited Metabolic Disorders referral, if GP will not take appropriate action.

[Dancer57 in reply to bookish]

That is interesting I have never heard of that. I will make a note of it.

Thank you.

[Orchard33]

A note on new NICE guidance: write to your local Integrated Care Board and ask them when the guidelines will be adopted in your area. My ICB is currently consulting so it will be a while country-wide.

[Doeyditdot in reply to Orchard33]

Hi Orchard33

Who do I ask is there a head of policy or some such specific person or department 🌸

[Orchard33 in reply to Doeyditdot]

Google your regional ICB and email the contact. It will be passed on if you refer specifically to NICE guidelines on B12D in over 16s.

[Doeyditdot in reply to Orchard33]

Thanks done that just now let’s see what happens 🤞

[Doris11]

so sorry to hear this 😢 I am going through exactly the same as you! My levels of B12 serum were 221 and active B12 were 49! I have probably had around 4 GP appointments and basically and felt I was being gaslighted! I actually told my Gp this but didn’t get much response! She wrote to haematology and they wrote back saying ‘ we have nothing to do with B12 and here are some guidlines)’ … eventually my Gp referred me to Gastrology and I have a phone call this Thursday 🙈 and I want to find out if I have gastritis/ PA although I was negative with a blood test. Please keep going and take your New NICE guidlines with you when you see your Gp and say you would like to be referred to see a gastrology?

PS I asked for B12 injections and she said no!

This forum is very helpful and has been valuable to me so 👍 fingers crossed 🤞 you get sorted. 🥰

[Cherylclaire Forum Support]

In 2016, my B12 deficiency was only 1 ng/L (196 ng/L) below the local range (197 ng/L - 771 ng/L). I was started on a loading dose of 6 B12 injections within a month, then the usual 3-monthly maintenance dose.

None of this stopped me from getting worse. Hair loss, bleeding gums, infections, confusion, exhaustion, diarrhoea, lower back/left hip pain, mood-swings, inability to understand people or follow conversations, sleeping for 14 hours a day etc. All this left me unable to work.

My GP had both my serum B12 retested, along with serum MMA (methylmalonic acid). The B12 was of course high, but the MMA was also raised - which meant that she could give me a diagnosis of functional B12 deficiency, confirmed by the testing laboratory.

Her suspicions having been confirmed, and crucially renal problems having been ruled out as a possible cause, she increased my B12 treatment to 2 injections a week. Finally, I started gradually to improve. Later, SIBO (small intestine bacterial overgrowth) was also ruled out as a possible cause of both the initial B12 deficiency and the raised MMA. This was established by a fasting breath test series.

This treatment and improvement did not stop her from ensuring there was nothing else going on. Although this meant seeing one consultant at a time, long waits, tests, scans etc etc. , it meant that over time, all else was crossed off, from a long list of "possibles" such as Coeliac disease. I am certain that there is nothing else to find and that all symptoms relate directly to the functional B12 deficiency.

Despite these frequent injections, my MMA remained raised for three years, and finally dropped into range on the 6th test. Functional B12 deficiency means that there is a problem with transporting B12 (whether ingested or injected) to cells or tissues. This final MMA test was taken by DNA specialists. They did not manage to find a cause for my problems - for which they apologised !

There is still much to discover about B12 deficiency but, for now, for me, this marked the end of the road.

I now continue this 2-a-week regime myself. Most of the time, that is enough to control my symptoms. My serum B12 would now be >2000 ng/L (above the measurable amount). It is not a cure. For me, it seems necessary to keep levels high in order to stop deterioration. Stress/ illness recovery have required a temporary increase in injection frequency on occasion.

B12 spray did not work at all for me. Neither did the usual NHS injection regime.

It may be worth finding out what your MMA is doing. My homocysteine was tested once: "normal" result. Folate and ferritin needed help and monitoring for a couple of years before being able to maintain a more healthy level, and vitamin D is given on prescription - as osteoporosis of the spine was found. Thyroid also worth having checked as it can struggle too.

[Doeyditdot in reply to Cherylclaire]

Thank you for your support 🌸

[Cherylclaire Forum Support in reply to Doeyditdot]

Don't give up.

My GP started by wanting me to take antidepressants, and offered them to me three times. Once I'd managed to convince her that this was not my problem, she started looking elsewhere for answers and was very supportive.

[Doeyditdot in reply to Cherylclaire]

Ok will battle on but am struggling big time with no B12 since early last September 🤦‍♀️

[boisland]

Doeyditdot You stated: I had another follow up B12 was 375 ng/L so Dr convinced that i do not have PA or B12 deficiency (B12D). It is "unsafe" to say based on that level you do not have a B12D or PA as you can have a B12D/PA at ANY serum B12 level. Also taking B12 supplements will have skewed those B12 results. I understand you stopped your supplements and tested again, however testing serum B12 level is a BAD ANALYSIS in itself, unless "low" in order to determine whether someone is B12D/PA . You have classic symptoms of a B12D/PA and should undergo a cascade of testing to determine if B12 is the suspect. Tests I would request 1) Intrinsic Factor Antibody 2) Parietal Cells Antibody-3) Serum gastrin 4) Methylmalonic acid & 5) Homocysteine 6) Folate. The 1st three are tests for PA, test 4&5 test for B12D and test 6 is needed as b12 needs folate to convert. It would be very reasonable to ask for a trial of loading b12 injections as your current active b12 & serum B12 both "indicate" a possible B12D. Symptoms-Vitamin B12 or folate deficiency anaemia see link nhs.uk/conditions/vitamin-b...

[Oneash]

Just to add about magnesium, rather than take pills, which I find upset my guts too, have Epsom salt baths, or 'Better You' have a magnesium lotion, which I use at night to help relax achey muscles.

[Doeyditdot in reply to Oneash]

Oh thanks will check that out 🌸

[qwertystar]

This sounds like me. I went through a very stressful event and I got worse. I then caught covid. I’m unable to walk and the nhs gp was absolutely useless.

Im now seeing a private gp who actually encourages self injecting and I’m injecting methyl. I can feel a difference But still not able to walk unassisted.

[Doeyditdot in reply to qwertystar]

Oh bless you 🙏

[am111]

Your numbers are definitely on the low side. You should take standard B12 treatment ASAP. Don't rely on doctors too much for this as they are mostly quite ignorant.

Ideally, you should go through an injection schedule. If you can't for whatever reason, studies have shown that oral cyanocobalamin 2000mcg/day or so starts working well after 2-4 months (normalises MMA) even in PA patients. I have cured myself using this route and doing fine. Generally, one can possibly go to orals only after a few injections, but if you can't, this is the second-best option and should be started immediately to prevent further deterioration in your symptoms.