B12 deficiency symptoms

[TomAinger]

I have recently been to the Doctor armed with recommendations from Martyn. She was prepared to listen and was happy for me to have a blood test. I explained the unreliability of this but soldiered on. My blood results came back with a rate of 240 for b12. Unfortunately I took b12 tablets in August and they may still be artificially high. She tried to offer me anti-depressents on our second appointment and I refused. She was disappointed saying that they were not addictive any more. She also said she was worried that I was wasting my time and money by going private and pursuing the b12 route. I have asked her to book me a private appointment and she is happy to do so. I need some advice on how to proceed. Thanks, Tom

[AngelaJG]

Hi Tom,

so sorry for you, you think you are getting somewhere and then another hurdle blocks your way.

I have just changed doctors, and at first thought great someone is listening, but then pretty much told the same thing, why am I wasting my time going down the b12 PA route....

everyone on here will give you support, but it really is difficult trying to communicate with the ignorant (doctors that is),

good luck

[TomAinger in reply to AngelaJG]

Thanks very much Angela. My story goes back nearly 30 years so keeping calm can be a challenge! I am wondering if labarynthitis can be a trigger for b12 deficiency or whether it is more genetic. I have given up eating processed sugar for nearly two years now. I am convinced that this has helped to slow down, if not cure my symptoms. The most positive has been a 90% reduction in anxiety. maybe I am not getting such an adrenaline reaction to sudden worsenings in symptoms that come with heart palpitations, spinning vertigo, shiftings in general balance, etc. The mornings where I am able to get up quickly and easily have also increased but I am still left with the feeling that everything is a struggle and that I am wading through custard with a fuzzy brain and loud tinnitus. The ignorance of doctors I find really quite baffling. Has society completely lost the ability to question itself?! It reminds me of the example of the error in a textbook caused by a mis-transaltion from German I think. If you remember at school being taught that different areas of the tongue sense different tastes... it is total nonsense but went unnoticed for decades.

All the best, Tom

[Gambit62 Administrator]

I'm not sure why 240 is being regarded as an okay result unless the GP is just going by numbers which is bad medicine.

Also, do you know what the strength of the tablets that you took was? if you have an absorption problem then the sort of dose you get in an average supplement wouldn't make any difference - you'd need to be taking something that was really high dose - over 1000mcg

Please go back to GP with the UKNEQAS alert on the importance of evaluating symptoms not just going on numbers.

pernicious-anaemia-society....

and also with a full list of symptoms.

pernicious-anaemia-society....

Do you know what your folate levels are like? In some people SSRIs - the most commonly used group of antidepressants - can deplete folate making the situation worse. Anti-depressants can work for some people but a lot do have side effects - even SSRIs and addiction is far from being the only reason that people might want to avoid them.

[TomAinger in reply to Gambit62]

Thank you very much for your clear and informative reply. I will certainly have more resolve in the knowledge that 240 on its own is not an indication that I do not have a deficiency. I will be armed with the facts when I see the private doctor. Should I get in touch in advance of the appointment to ask for the blood test that counts the active b12 in the blood? Do you know which tests they are likely to have available and which would be most effective - know of at least four? Any reaction to my blood test and notes after the serum b12 test?

My blood results were -

Serum TSH level 1.6 mlU/L

Serum vitamin B12 240 ng/L

( Low B12 less than 145 ng/l , Equivocal B12 145 - 180 ng/L ) On rare occasions , high titre intrinsic factor antibody in pernicious anaemia (PA) may interfere with the assay of serum vitamin B12 and give a spurious "normal" result. Please discuss with laboratory if clinical and haematological features strongly suggest PA and a normal serum B12 is reported.

Serum folate 6.8 ug/L

Liver function test:-

Serum bilirubin level 24 umol/L - slightly elevated in isolation, no prev results, monitor only

Serum alkaline phosphatase 73 IU/L

Serum ALT level 19 IU/L

Serum total protein 73 g/L

Serum albumin 39 g/L

Serum globulin 34 g/L

I also have Urea and electrolytes in the 'normal no action' range and a normal full blood count listed below: -

Total white cell count - 5.16

RBC count - 4.91

Haemoglobin estimation - 145

Haematocrit - 0.44

MCV - 88.6

MCH - 29.5

MCHC - 333

Platelet count - 179

Neutrophil count - 3.28

Lymphocyte count - 1.36

Monocyte count - 0.35

Eosinophil count - 0.15

Basophil count - 0.02

[TomAinger in reply to TomAinger]

Sorry, meant to mention, the B12 tablets were low dose supermarket ones so not to worry...

[Gambit62 Administrator in reply to TomAinger]

whilst Active B12 looks at the amount of the forms of B12 used at the cell level that is in your blood it is still looking at what is going on in your blood.

You should ask for homocysteine and MMA - these are two tests that look for waste products that build up if there isn't enough B12 available at the cell level - so they can provide some further evidence when the serum B12 test is inconclusive - but neither will mean anythingif you have been supplementing with high level B12. You could also ask for IFA which is the test for one of the antibodies associated with PA - however the test throws up false negatives about 50% of the time so a negative result doesn't necessarily rule out PA.

[srmika]

My B12 results were 267 when I totally tanked due to my deficiency. I've had terrible exhaustion, total mental fog, memory loss, all the symptoms of depression, and neuropathy - all as a result of this "normal" level. Fortunately my doctor gave me loading doses and I am very happy to report these symptoms are all subsiding. My doctor said if they didn't work, antidepressants were next, but he shots did the trick. All that to say, if I were you, I'd pursue the shots first. Your levels are plenty low to be symptomatic, and the shots should be an easy fix (just give them time - it can take a while). I wish you the best of luck! Keep fighting!

[TomAinger in reply to srmika]

Thank you so much! The idea of an 'easy fix' fills me with both huge hope and not little trepidation....

[srmika in reply to TomAinger]

I am so happy to hear that! I had lost hope for a while and it's a terrible feeling. But when it's restored, it's a miracle! Hope you can report back with an awesome success story!

[TomAinger in reply to srmika]

I have just noticed by reading through symptom lists that my symptoms seriously worsen when I have eaten a lot of wheat. I used to get terrible 'hold on to the nearest wall' vertigo about 12 hours after eating pizza - this would appear to be consistent with b12 deficiency - I will be very vigilant in checking ingredients when I am not cooking for myself in future.

Tom

[srmika in reply to TomAinger]

So interesting -- I, too, have discovered I have problems when I eat too much wheat. My doctor thought I had celiac but blood work and an upper GI endoscopy suggested that wasn't the case. Even so, when I eat it a few meals or days in a row, my stomach is NOT pleased with me -- lots of gas and bloating and an overall wretched feeling. And on top of that, I get anxiety. So, I've backed WAY off wheat (I can eat a little and seem to be fine) and all of that has gone away. I feel like the gut health link is so important to this struggle for some people. Once my head gets a little clearer, I plan to read this book, which I've been told is very enlightening when it comes to leaky gut. amazon.com/Psychology-Syndr...

[Jo5454]

Hi Tom, sorry to hear of your health problems and difficulties in getting them sorted.

Thought I'd briefly tell you my b12 experience in the hope it helps. I'd been diagnosed with ME 17 years ago, with better/ worse spells and all the associated symptoms but learnt a bit about b12 6 yrs ago when I paid for a private test. It was in the low 200s but the dr convinced me it was fine, so I had to put the relapse down to labrynthitis. Unfortunately although this grad improved ( like you, it seemed to effect my adrenal system and just a louder noise would set severe panic symptoms off and has left me battling with a seemingly over sensitive nervous system). Like you, I gave up sugar, had to give up dairy due to constant sinusitis and after investigation, told that was chronic and to basically go home and improve my immune system??) tried gluten elimination, was diagnosed with IBS and was constantly getting infections.

After getting to the stage of feeling faint and rotten, found I had low ferritin 2 years ago, then low vit d, and b12 at 261ng. Finally managed to convince my dr to refer me for an active b12 postal test at StThomas end of last year, by this stage was extremely unwell. My active b12 was bottom of the range, thus referred for an MMA which was 708 ( should've been 0-280) and diagnosed with a functional b12 deficiency at blood and tissue level! My dr had told me I was not I'll enough to warrant MMA test, and I was also given the wrong result about this all and only discovered it via a printout, so my faith needs some restoring! Not sure yet, whether this has been my prob all along, or contributing to it, but it definitely needs treatment so can't have been helping things!

I'd strongly reccomend if you feel this is any way contributing to your symptoms, just push on regardless and don't be put off. The active b12 test was £30, but since been advised it's risen to £90 since my test in Feb, but it does at least give you a MMA test for free ( presumably still, don't think they've changed that) and you now don't need a referral from dr! Recent supplementation could affect the result though, other members may be able to advise on this? Being an NHS test, I thought it would carry weight in getting treatment if it did come back positive.

I hope you manage to get the tests you request, if you need anymore info about the active test, feel free to ask. Take care...

[TomAinger]

Hi Jo,

Many thanks for telling me your story. I have had two 'failures' with two GPs in my practice and am not sure how to proceed. The 'man' was sympathetic but honest in saying that there was nothing he could do. The 'woman', on the other hand, looked like she was listening: lots of nodding and tilted sympathetic head movements, but an insistence that B12 deficiency did not exist. Giving her my list of symptoms encouraged her to pick out one - anxiety - and tell me I should go on antidepressants (which are no longer addictive), and that b12 injections were dangerous as they might interfere with folate levels. She insisted that the NHS would not sanction further blood tests as my B12 level of 240 was perfectly safe. I insisted on a referral to a private practice - The Spire in Bristol, which is my nearest. The story then gets even more farcical and depressing: The referral to see a blood specialist was changed to a neurologist without my knowledge by the Spire. The only reason I knew I had an appointment was when I phoned them to find out what was happening. I decided to request a blood specialist instead, and I ended up with an appointment this coming Wednesday with an oncologist with no specialism in the area of PA. In addition, the Spire had lost my referral letter. This appointment is going to cost 250 pounds and I can't have the MMA and homocysteine tests at the same time - these will cost another 200 pounds plus on a different date. I feel I should cancel the appointment as a waste of money and book the tests direct at the pathology lab without an appointment. The cost will then be around 200 pounds. I don't want to alienate my GP surgery, but if the MMA and homocysteine tests show a deficiency, what can I do? Thank you for giving an idea of levels, but of course everyone is different. I have no faith in the NHS helping me with the jabs that I may need. I am starting to question my sanity again. I woke up this morning with horrible pins and needles and constant panic attack in the background and noisy tinitus. The brain fog is worse and I have to go back to work in the morning after a week off with the family. The brilliant change over the past month is that my wife and mother are now on board and batting for me - eureka!

So yes please to more information about the active test. Can I apply to have it in London? If it is quicker and cheaper and they are likely to be more competent it might be a good idea. Whatever happens with all this I will be injecting b12 and will need help with this...

All the best, Tom