Back in June I had a blood test as I began to feel extremely fatigued, with heart palpitations and eye sensitivity to light. My b12 came back as 200 and nothing was mentioned to me, as it is classified as normal at my doctor's. I then went to London for a Neurology appointment as I'm a long term seizure sufferer. I explained I had been experiencing these symptoms of extreme fatigue, and most recently developed aching bones, depression and suicidal thoughts, and ringing in my ears. I was sent for another blood test and it came back as 167 with elevated MCV of 100.5. My neurologist requested I had supplementation. I spoke to my doctor last week and she advised that she wanted me to have another blood test. I got the results back today and it's apparently now gone back up to 277 and have been written off completely for any kind of treatment, although I've got the symptoms and worsening mental health. They seem to think I may have CFS, however I'm now confused how my results are jumping from 200, to 167, to 277. I really would love to know if anyone else has experienced this or has any advice?
Many thanks!
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AJ112
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It may not be enough to explain the differences but might help give a clearer picture if you can post the units used in each of your blood tests results. Also the range (usually shown in brackets after the result).
With this information it should be easier to know whether or not you’re comparing a like with like result.
Thank you for your message! I will definitely look into requesting the results in paper as I have not actually physically seen them myself, and come back with the units used and the range.
Yup. That would be my guess, the the GP is using a lab that quotes results in ng/L (or pg/mL) while the neurologist is using a lab that quotes results in pmol/L.
1 pmol/L is equivalent to 1.344 ng/L so 167 pmol/L = 222 ng/L
If that is the case then your results of 200, 222 and 277 aren't too much of a surprise. As well as not being accurate, the serum B12 test isn't precise. So measuring the same sample, that contained 250 ng/L three times could easily give results that vary as much as that.
Have you take any b12 tablets? It's in multivitamin too?
I would contact the neurologist . I find it confusing the Gp did another b12 test rather than a trial of tablets first before testing again or followed the neurologists instructions.
As JanD236 says check what it was measured by.
Thers is a variant of 20% on the same test but I agree very different results??
List your symptoms
Ivd been told I have chronic fatigue . Remember its a symptom nof a diagnosis alone. Its like brknv labelled with fibromyalgia. Angry string generic labels stood them investigating the causes. Sed what the neurologist cones back with. Message through the secretary or email direct. Or write.
I eat everything except beef or pork. And I have been this way since 2017, and only developed symptoms this year.
I haven't taken any multivitamins or b12 supplements, however I have gone and brought some today to try and eleviate my symptoms as it's causing a lot of problems with my day to day life.
I found that strange too. When I called to discuss the letter the neurologist had sent, she simply said "this may be wrong, therefore you have got to have another blood test". I'll be back in contact with my neurologist, thank you for the guidance.
Ah I see, I read up a little on chronic fatigue and ME, and the struggles many have with diagnosis.
A multivitamin with B12 in it will not be sufficient to raise your b12 levels. We only absorbe a tiny amount of any oral b12 supplementation. So youd have to buy a high dose B12 tablet. Hyroxocolabamin. I was told by a specialist that at levels like yours only injections would bring the level up as I was also on a diet that had plenty or foods rich in b12.
Yes always ask for a copy of your blood test results -they normally have the ranges on them but not always. Also whether your b12 is 222, 227, or 277 it is low!! The Pernicious Anemia Society reccomends that everyone is over 500. Many people experience symptoms in the range you are in.....myself included. I felt very ill indeed. As you have a diet that contains plenty of b12 then your GP should investigate why its so low not dismiss you!! However many GPs are very ignorant about b12 deficiency and are very literal with blood tests.....ie if they are in range then no need to worry!
Have a look at the b12d.org site - they have a symptom checker. Your neurologist clearly has concerns so you are right to contact them and to let them know.
It isnt uncommon to be diagnosed with CFS when really its a B12 deficiency.
Waveylines, are you sure the PAS recommends everyone to be over 500? I’m not sure this information is correct.
As I understand it, for the majority of people who do not have PA their body will maintain their B12 level at the right level for them. This could be in the 200s or it could be higher, but, assuming they’re not ill, it will be the right level for them.
From personal experience I can tell you it is possible to have severe B12 deficiency with an in range B12 result.
I got to the point of dementia symptoms and spinal symptoms with results that were up to 500 ng/L.
ME/CFS is a real neurological illness but I believe many who get an ME/CFS diagnosis have some other health issue.
My experience was that once stuck with an ME/CFS diagnosis all investigation into other possible causes of my symptoms stopped and I had to be extremely persistent.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link in this thread for up to date info.
Local Guidelines
Each CCG and Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the guidelines for your area and compare them with BNF, BSH links in thread and NICE CKS link below.
Do you keep a daily symptoms diary that tracks changes in symptoms and if and when treatment is received. Can be useful evidence of deterioration or improvement to show GP. You could include blood test results.
May also be worth having a copy of typical weekly diet to prove to GP that any b12 deficiency is not diet related.
Vital to get adequate treatment for B12 deficiency ( and folate deficiency) or there is an risk of permanent neurological damage including problems with spinal cord.
Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.
"Neurology appointment as I'm a long term seizure sufferer"
Some anti-epileptic drugs have been associated with a risk of B12 deficiency (and some also with folate deficiency) in some studies. If you think that this is a possibility, please discuss it with your GP and neurologist.
I was one of those people too Sleepy Bunny......my b12 levels never dropped below the range but was low in the range and I had awful symptoms, tremors, weakness, burning, tingling, numbness, blurred vision, memory loss, extreme fatigue, bowel and urinary incontenace, problems when eating, I wasnt far off a wheel chair but b12 test said 235. B12 injections have been a miracle for me and after two years many symptoms but not all have gone or are much much milder. Have to inject twice daily or I slip back quickly. I assume therefore my body has lost the capacity to store b12 as I cant work out why I continue to need such a high frequency. There doesnt appear to be any research literacy about this that Ive found.
Sorry to hear that sleepybunny. Yes I was the same GP kept telling me b12 is fine and referred me to neurology which had a six month backlog so decided to self inject. GP was amazed by the effects.....& the neurologist backed me when I eventually saw him. He didnt do any further tests just looked me over.Its soooo hit and miss whether you get treatment.
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