I am a 42 year old male that is at heavier end of healthy weight/height ratio. I had increasingly frequent pins and needles in both hands last year when sleeping, particularly around waking up. The GP tested for serum B12 and i got a reading for 140 ng/l. Serum folate was 6.8 ug/l. I received 6 injections of b12 over a 2 week period then had two more injections three months apart. I was tested again after the second of these and I was at 395 ng/l and 7.2 ug/l so I was told i no longer needed injections and the last injection was at the start of March.
I had other symptoms that I then associated with b12 deficiency - lethargy, difficulty focussing and reading, brain fog, low mood, tummy cramps. There was a definite improvement in these symptoms after the injections. With the three month injections, the pins an needles returned after a month.
Since May, all the symptoms returned and have been worse - i have daily pins and needles in both hands for longer periods and more frequently and I have lower leg cramps. The fatigue and brain fog are also worse and more frequent and my tummy has more cramps and bowel movement varies quickly in colour, odour and consistency. I have a diminished appetite and no real desire to eat.
I had tests done again and had a b12 injection a week ago, but all have come back as normal. I noticed a slight improvement but it wasnt great. The gp checked for tummy pain but there wasnt any. She checked my feet and I think my neurological responses weren't great.
Im waiting to see the detailed results from the tests - im not even sure exactly what was tested - liver function, renal profile, serum b12 and something else. A phone call from the health centre merely advised me all levels were normal. It was mentioned that it could be coeliac so im presuming that was also tested for. Im seeing the GP on tuesday.
Im not sure what to say - i feel ill and these symptoms seem connected. I hate this tiredness and the brain fog is making some things difficult - an example is needing time to find an app on my phone as they are difficult to recognise and distinguish from each other, or constantly having to check for a platform number for a train as I immediately forget it.
What else could be causing all these symptoms? What should I be telling or asking my gp to do?
Many thanks
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Luac
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Thanks for a quick response - Ive been tested three times for serum b12 and serum folate and only one b12 reading was low. That was the first reading prior to treatment.
Exactly . One you've had injections levels will be higher .No need for b12 to be done. Go by your symptoms.
If people can be off b12 for 3 Months thrn test accurate. Well active one can be done. Serum one a guide as only shows b12 blood at time and not active b12.
My first ever one was 106. They mistaking glycogen did it (long story) while on treatment. Serum blood test Above 1500. So 395 whilst on treatment low
That makes sense - if the injections help the symptoms then i should continue. I think I will ask for an intense set of injections until symptoms alleviate then keep on them.
Nackapan is right! Blood tests mean nothing once injections are started as you will test higher for plasma levels of B12. Please be your own advocate, your body needs the B12 injections!
i'm new to this forum so forgive me if i misjudge people's understanding of the lab tests etc, i dont want to be patronise anyone.
did they test methylmalonic acid (mma)? If not, then i am confused. They should test homocysteine and mma. I could provide references you could take to your Dr (from eg the new england journal of medicine). They need to monitor your response to treatment (the injections) by looking at mma i believe. It is a more expensive test and takes more time to produce, thus maybe the Dr shows reluctance, or is ignorant? There's plenty of research out there that shows testing b12 alone is not sufficient (and in fact total b12 is not as informative as active b12 or HoloTC). Etc
incidentally, my experience is similar to your own (described in your 1st paragraph)
cphgn. For clarification...MMA levels are not used to monitor treatment response to B12 deficiency in the U.K. as per one of my other replies to,you, these tests are not routinely available from a GP and are usually only accessible from some (but not all) of the large teaching hospitals (and usually only available to order by specialist consultants).
Response to B12 treatment is managed by monitoring symptoms and ensuring a dose and frequency of injection to keep symptoms at bay. Testing B12 (serum or active) is not recommended once treatment has commenced - B12 level’s are meaningless once treatment has commenced (you'd simply be measuring the injected amount of B12 sloshing about in the blood - and perhaps how quickly this drops - neither of which tells you anything about the efficacy of treatment or B12 dose/frequent requirement (assessing and treating symptoms is the only way to go).
Here's some links containing UK guidelines and information about the diagnosis and treatment of cobalamin and folate deficiencies...(good sources of information, certainly for those in the U.K. 😉)...
Luac - going to leave you a separate reply but these links below will be useful and relevant to you too (saves me saying the same thing again 😉)...
onlinelibrary.wiley.com/doi... (British Standards in Haematology (BSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.
archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
thanks for the links and info. I didnt realise the PA society (which directed me to this forum) is UK based, i assumed it was from the USA for some reason.
Yes...it is an important test and this is recognised and stated in all the uK guidelines. But it's simply very rarely available (cost and availability issues but medic education issues too).
All here would wish that this test were freely available in the U.K. too.
It would save a lot of heartache and a lot of broken bodies!
Sorry but I have to be brief so here's a couple of points:
1) as others have said, a serum B12 level of 395 is very low for someone receiving injections. It would be expected to be high or even very high, well over the top of the reference range: mine is always over 2000. The low-level indicates that you need more frequent B12 injections (not less).
2) Once treatment with B12 injections has commenced all the guidelines state that testing serum 12 levels is not necessary: serum B12 levels cannot be used to monitor the efficacy of treatment (because they 'artificially' changed by the injections and levels swing (sometimes wildly) as B12 is injected and then excreted by the body. The exception is if checking for low levels (perhaps where treatment response is not obtained) - if low levels are found (as in your case) then more frequent injections are needed. (Some people metabolise B12 more quickly and need more frequent injections - nobody currently knows why - looks like you may be one of those people).
3) those who have B12 deficiency with neurological symptoms should be on a B12 intensive treatment regime. After the loading doses you should have continued to receive B12 injections every other day until no further improvement. Not many GPs have heard of this. Details about this treatment regime can be found in the BNF (prescribing guidelines). Details are in the third or fourth paragraph down so your GP may have to read further than they usually do. The prescribing guidelines refer to it as treatment for those with delicious anaemia and neurological symptoms. Your GP may say ha ha but you don’t have pernicious anaemia. But that’s a moot point. The treatment for pernicious anaemia is treatment for the B12 deficiency it causes. Ergo, the treatment for B12 the deficiency is the same (whatever the cause).
4) your GP may not be aware that under treatment of B12 deficiency can result in something called subacute degeneration of the spinal-cord (neurological damage which can be potentially irreversible). I’m not suggesting you have this but flagging this for your GPs attention may wake them up a little and then make them more inclined to give you the correct treatment.
5) Your GP should not have stopped your injections after the loading doses you should be getting B12 injections every other day until no further improvement (sometimes for many months).
I’ve left some links in one of the replies below (for another respondent) but I’m going to post them again here as they will help you to understand how are your GP should be treating you. It would be useful to print them out, highlight the bits that are relevant to you, and take them along to discuss with your GP. You may have to be quite persuasive in order to get your GP to reinstate your injections and treat you with the intensive regime of B12 injections.
Please post again if you have any more questions or if you see your GP and they still refuse to treat your deficiency appropriately. Folks here can offer further advice about where to go and what to do if that happens.
Good luck. Let us know how you get on … And here come the links:
onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.
archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections - even if B12 is within normal limits)
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
This is such a helpful reply that is pertinent to lots of newcomers, I wonder if you could/would take out the bits that make it a reply specially to Luac, so that it was suitable for all, and then put it up as a post so people could easily find it and be directed to it in future? x
Unfortunately you are getting B12 deficiency symptoms because you need more, and possibly a lot more, B12 and your Dr doesn't know what he's doing, I'm afraid.
He should reinstate your injections at every other day (or at least one a week) until your symptoms have resolved. If you can't get this treatment quickly then another option is to buy supplies online from Germany (completely reputable) and self inject. This is what hundreds, if not thousands of us do to get and stay well.
Good luck with everything and don't stop trying to get reasonably well - it is possible and we will help you.
NICE guidelines Coeliac Disease (2015 version), a UK document, recommends anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac ( spelt Celiac in US).
Any chance of internal parasites eg fish tapeworm?
Do you ever eat raw fish? One potential sign of fish tapeworm infection is an increase in eosinophils (type of white blood cell). Eosinophil result can be found in results of Full Blood Count ( Complete Blood Count in US).
Giardia Lamblia is another parasite that can lead to B12 deficiency.
Were you tested for PA (Pernicious Anaemia)?
Flowchart from BSH Cobalamin and Folate Guidelines
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
Link about "What to do next" if B12 deficiency suspected
Some of the symptoms you describe eg pins and needles and brain fog would usually be described as neurological.
Do you have other neuro symptoms eg tingling, insect crawling sensations, tinnitus, memory problems, balance problems, muscle twitches, restless legs syndrome, word finding difficulties ...there are many other potential neuro symptoms as well?
If yes, it is vital to get adequate treatment as there is a risk of permanent neurological damage in patients with b12 deficiency who are untreated or under treated.
Thank you all so much for the very specific responses! I definitely have some other neurological symptoms so will look in more detail to what my next steps will be regarding tests. I will ask for immediate injections but this may be difficult as i am travelling quite a bit until mid august. I will look into self injecting as a possibility.
Thank you all again, i was so worried that i had these symptoms but wouldnt be able to treat them. Im much more hopeful now, thanks again!
Good luck Luac...self injection may work better for you...especially if travelling...and more especially if your GP still refuses to treat you appropriately.
Just be aware that recovery can take some time, especially if you have been deficient for some time. So keep that hope going...and the frequent injections too 😉👍.
You need injections sooner rather than later, as delayed treatment could result in irreversible symptoms. Unfortunately most people end up having to self inject as rarely do Doctors understand and treat B12d properly. You need every other day injections until you no longer have any improvement in your symptoms, you can then look at slowly spacing them further apart and finding the frequency that suits you. Injections will most likely be for life, as you probably can't absorb B12... if you could, and you were low merely because you were vegetarian for example, you probably wouldn't have got symptoms back so quickly.
Hi, write down how your feeling and what time it's at it's worse, you shouldn't be feeling the way you are, I get my b12 injection every 8 weeks almost right away I felt a lot better more energy but it only lasts a short time. Have they tested you for diabetes? I have pins and needles in my hands and legs it makes you jump. I wish you all the best...monkeyman
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