Popped over from the Lupus website as I would like to ask the knowledgeable people on here about my B12 results. I have been experiencing many problems, including the ones mentioned above. As part of my ongoing search for a solution, and because of the symptoms it was suggested I have B12 test. I have noticed over the past few years, looking through my test results that my B12 has been gradually decreasing to quite a low level. Since 2012, when I was tested for the first time it stood at 766, and today, stands at 236 . This is considered normal and no further action required. Obviously low , but within range. Folate level has also reduced from 12.4 to 4.9 .
Please can anyone tell me if this is an acceptable level to feel good? I certainly do not feel good. What is an optimum level to function better? Should it continue to decrease like this? I am not a vegetarian so I don't think my diet is affecting it. My poor mouth tingles and is painful all the time. My feet feel like they are numb to the ends. And the pins and needles in my arms are awful at night. I had a scroll through the symptoms checklist and have been to see GP because of many of them but all to no avail! So, because my levels are deemed within range my symptoms do not relate to low B12? I do however take Omeprazole and have read it can reduce levels. Have only been taking it for about a year.
So, should i just plod on and wait until my levels fall below acceptable? Should I supplement myself? Are there other factors I need to consider?
Any advice gratefully received.
Thank you.
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Minnskimoo
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In general problems with B12 are due to absorption problems - and omeprazole can certainly affect absorption. However, it can also be used to treat one of the risk factors in developing a B12 absorption problem making it worse - low stomach acidity - symptoms of which are just about the same as high stomach acidity - including acid reflux.
If you are seeing a consistent drop in B12 levels over a period of time then that would suggest that you have an absorption problem. The serum B12 test has some limitations in actually identifying deficiency as it is only measuring amounts in your blood - not what is happening in your cells. People can be deficient at the cell level with blood serum levels well into the normal range - though it gets less likely as you go up in the range. Used as a single marker serum B12 will miss 25% of people who are B12 deficient.
- B12 levels in the blood are generally pretty steady so drops of the order you highlight are a definite indication of an absorption problem - and PA is the most likely cause.
Folate - not so easy to say as levels are much more responsive to diet - and there is less variation in the levels at which cell processes stop running properly than there is with B12.
Are you UK based? If so refer your GP to the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies which they can access through the BNF but can also be accessed here
particularly in relation to the sensitivity of serum B12 and the importance of prompt treatment of neurological symptoms. Lupus diagnosis is likely to cloud the issue as there is a degree of overlap of symptoms - however it's also an auto-immune problems as is PA and they tend to come in clusters
Thank you for your comprehensive response, Gambit62. It is very much appreciated and extremely helpful. Yes, I am based in the UK.
I have taken everything you have said on board and will refer my GP to BCSH guidelines re diagnosis - although I’m not so sure how he will respond to me suggesting this! Grimacing here. However, if I don’t take control of my health, I am sure no one else will. A ten minute appointment does not allow sufficient time to scroll through records and discuss results from over 6 years ago. Certainly doesn’t help the cause. And, it would be a huge advantage if able to see the same GP for continuity of care.
Having a response has made me determined to find the cause of my many worrying symptoms and to not simply accept that the Normal - No action required is a definitive result.
I agree. A list/script is an absolute must have accessory of mine-along with photographic evidences - Still experiencing huge mouth ulcers, skin problems -so a photographic diary has been helpful in that these symptoms are not imagined!
It's a lot of info but when I was at my worst with multiple neuro symptoms all I wanted was info I could take to GP or put in a letter to GP, to argue my case for B12 treatment.
At my worst I had several B12 results between 300 and 500 ng so my answer to the question in the title is a resounding yes.
In a nutshell, if you can't face reading all the info at this moment, my understanding of current UK B12 guidelines is that a person who has the symptoms of b12 deficiency should be treated even if B12 is within normal range.
"(B12) first time it stood at 766, and today, stands at 236"
"Folate level has also reduced from 12.4 to 4.9"
Have you got results for ferritin and full blood count? I think that the drop in the levels is significant. Have you asked GP directly what they think about the drop in levels?
I think that many people on this forum have to become their own medical detectives and collect evidence eg blood test results, medical articles, symptms lists etc.
Coeliac disease can lead to B12 deficiency due to gut damage causing absorption problems. in UK, NICE guidelines recommend that anyone with unexplained B12, folate or iron deficiency should have tests for Coeliac disease and also that first degree relatives of Coeliac sufferers should be tested.
A person needs to be eating plenty of gluten each day for at least 6 weeks for tests to be reliable.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.
Flowchart makes it clear that in UK, those who are symptomatic for B12 deficiency should be given an Intrinsic Factor Antibody test and start initial B12 treatment, even if B12 is within range. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.
BMJ B12 article
Emphasises need to treat those who are symptomatic for B12 deficiency even if B12 is within normal range.
You mention several symptoms that would normally be considered as neurological eg tingling, numbness. See Symptoms lists above for more info.
Some forum members have mentioned potential neuro consequences in letters to GP or in discussion with GP. Some GPs may not be aware of the severe potential consequences of untreated or under treated B12 deficiency.
"I am not a vegetarian so I don't think my diet is affecting it"
Might be worth writing out a typical weekly diet for GP so they can see you are eating plenty of B12 rich foods then hopefully they might start to consider the possibility of absorption problems.
Good luck with finding answers, I am not medically trained, just someone who has spent years trying to find out what is wrong with me.
Thank you for your brilliant and informative response. Some very useful links here. Truly appreciated 👍🏼 I will work my way through everything, believe me. I am trying to find out as much as I can to prove my increasing symptoms are not a result of ‘anxiety’
As yet, I have not had the opportunity to ask the GP what his thoughts are with regards to drop in levels - I only got the results today. I will perhaps print out my results from my records to show the obvious decrease.
I think it can be worthwhile before tackling GPs over a difficult issue to get a complete set of medical records and test results. This might require a patinet to write a signed, formal letter requesting copies. Some UK GP surgeries have online access to a summary of records/test results but it is only a summary and may not have all the info wanted. Details of online access can be found on GP surgery website.
GPs have to sign off on requests for copies so may take a few days to sort out. £50 maximum in UK for set of medical records, £10 maximum for test results. Free to just view records but would need to make an appt to view , possibly with practice manager. UK patients, as far as I know, do not have to give a reason for asking for copies. In my experience relatively easy to get copies from GP surgery, more difficult to get hold of copies from hospitals, may involve filling in forms and visit to hospital records office. Only reason for GP surgery to refuse is if they believe giving copies out could cause harm to patients in some way.
"have not had the opportunity to ask the GP what his thoughts are"
My personal preference for asking questions and requesting referrals was often to put them in a brief, polite letter sometimes along with lists of symptoms, relevant test results, extracts from relevant medical documents etc.
In UK, my understanding is that letters to GPs are filed with patient's medical records so are a record of issues raised and I think are less likely to be ignored than something said in discussion with GP or on a copy handed over . I always kept a copy of any letter as things can get lost from records sometimes.
A word of warning, some GPs can find it hard to deal with an assertive patient and the doctor/patient relationship may suffer.
My preference when I was trying so hard to get answers would have been to take someone supportive with me to appts I thought might be difficult but usually there was no-one available to help me. Even better if person accompanying a patient has read up about B12.
Referrals.
Have you seen a neurologist? It's a person's right to request a referral but GP does not have to agree.
CKS link and BSH Cobalamin guidelines in my first post advises GPs to contact a haematologist if person symptomatic for B12 deficiency has neuro symptoms.
Has GP spoken to a haematologist? Would they be willing to refer you to a haematologist?
Some people on forum go privately if unable to get referrals through GP but this is no guarantee of better treatment.
Other ologists and health professionals
Sometimes route to diagnosis of b12 deficiency is through other specialists. I would warn you, based on my experience, that b12 deficiency is not always as well -understood by GPs and specialist doctors as it could be so try to be well-prepared if you get any referrals.
Dentist might spot mouth ulcers, glossitis of tongue.
Rheumatologist might know about joint and muscle pain symptoms caused by low B12.
Endocrinologist might be able to order tests such as MMA, homocysteine, Active b12 and exclude possibility of metabolic disorders.
Opthalmologist might spot degeneration of optic nerve.
Audiologist might be able to diagnose tinnitus (a common symptom associated with B12 deficiency) and diagnose hearing loss due to b12 deficiency.
Gastroenterologistmight be able to diagnose gastritis which can lead to absorption problems.
Podiatrists,
If you have neuropathic symptoms in feet, you may be interested to know that podiatrists in Uk with correct training can prescribe B12 injections
I'm sure there are other specialists as well who may be helpful.
Thank you very much for the extra information, Sleepybunny.
I can appreciate it might be a long haul to find some answers- which appears to be the case with many Autoimmune Disorders!
I have to confess, I am not the most assertive when it comes to tackling medical issues with the GP, but I am so fed up of having the same problems reoccurring - I know something is amiss. I have had encouraging support from the lovely people on HU Lupus website. Connecting with others has given me the boost I need to be more proactive with regards to my health and a diagnosis. I fully appreciate that asking such pertinent questions to someone more qualified on medical matters than myself can be met with disdain -and understand that there are ways to extract this information without fear of creating a bad relationship between myself and my GP. I was in a similar situation over a 7 year period with symptoms that were, apparently, mostly due to 'anxiety' It turned out to be Stage 4 Endometriosis!
Test results and records I do have access to but these are minimal. No letters from Consultant or in depth medical records. Just blood test results, urine etc and medications. Apparently this could be due to the fact that some of the conversations between Consultants and GP's may bewilder, upset or terrify a patient?
Once again, I feel I am in a situation where my symptoms are thought to be caused by anxiety! Can a B12 deficiency be a result of this? My decreasing levels - would they be affected by anxiety?
The past five years have been a struggle to say the least.
It all began with a suspected TIA - fortunately, no sign of TIA. However, on my records it states : White matter lesions/small vessel disease! The consultant said this was unusual for someone of my age and a non smoker! However, nothing more was done, but, I did note she mentioned should this occur again to be referred to a neurologist. I haven't experienced the symptoms to the same degree ( droopy face and tingling down one side) but, at various intervals, the same side of my face feels tight and numb. I get this intermittently without any known cause. And, strangely enough, it was only a month ago I posted on the lupus website with regards to a migraine with aura headache I had . I couldn't see clearly out of my left eye for about half an hour and felt drained afterwards. Came just out of the blue. Apparently, lots of people with lupus experience these to varying degrees as part of their condition. The GP said migraines with aura can present with a temporary vision problem. Last year I had a consultation with a rheumatologist for suspected Lupus/MCTD/Vasculitis - Lupus being the most obvious as I had rash on legs and body, strange bruising, mouth ulcers, numb feet, tingling in hands, to mention a few. Apparently, after blood tests and skin biopsy, I don't quite fit the Lupus criteria bill but, should I continue to experience these symptoms, perhaps return for further investigation. And, be grateful I don't have Lupus!! Strangely enough, the symptoms are still here - I am not sure why they would suddenly do a disappearing act to be honest! Would have been great had this been so.
Also, my dentist suggested on at least two occasions that I go back to my GP and request B12 tests for the recurrent mouth ulcers and a horrid burning and tingling tongue-exacerbated by strong odours! Dutifully done but obviously not low enough to warrant a second look. I have developed dry eyes too and was given Hycosan drops from the optician. The dizziness is down to ....you guessed it, 'anxiety' The same with reflux. This actually affects my asthma and causes me to wheeze. As an added, I had low Vitamin D and needed a three month high dose supplement but was never informed to continue on a maintenance dose. Needless to say the level of Vitamin D seems to be lowering once again. I have had another test and still waiting for the results.
I have also been referred to an immunologist by the Nurse Practitioner I saw for a lengthy chest infection, (12 weeks) loss of voice, increase in asthma and the same symptoms mentioned above. She was most concerned and said perhaps my immune system is under attack! So, this week was to be my follow up consultation (lots of bloods requested) but because of the adverse weather conditions I will not be attending. Just recently had a call from the consultants secretary to rebook appointment.
Test results and records I do have access to but these are minimal. No letters from Consultant or in depth medical records. Just test results and medications. Apparently this is because some of the conversations between Consultants and GP's may bewilder, upset or terrify a patient?
As an add on - my mum had problems with mouth ulcers, taste buds, her eyes, dizziness and years ago was in need of iron injections. They were short lived but mum continued to have the same problems for the rest of her life. Especially her cognitive thinking and dizziness. Sadly, she eventually developed Dementia and deteriorated at an alarming rate. I do wonder it any of those symptoms would have been due to a B12 deficiency that was never properly addressed?
It also appears that Autoimmune Disorders can run in families - My sister has Graves, and both my Grandma on Dad's side of the family and my Mum's sister had hypothyroidism. All extra considerations.
Sorry for the very long reply.
Medically trained or not, your guidance and support is most welcome!
It could be a good idea to get your GP to check your thyroid function. Low B12 and underactive thyroid often go hand in hand, and give you the same symptoms. At least if you get it tested you can rule it in or out depending on your results.
I had a Thyroid function test about this time last year. It was, as per usual, ‘satisfactory’ - My TSH was low, T4 low end of range and T3 pretty much the same - hence the result being satisfactory. I am not too sure how much the thyroid can change from year to year and wether it was requested in my recent bloods taken at the immunology consultation. I would have been at my appointment today but the weather put paid to that so I will have to be patient a little longer.
I always ask for a printout of my blood test results, so I can ask advice on the thyroid forum to see if it really is satisfactory. This is because I spent years being told I was borderline, and when I eventually paid to see a private endocrinologist, he said I needed treatment straight away! It could have changed in a year.
If I have had a thyroid function test included in the bloods recently taken I will ask for the results to post on the thyroid forum. If not, I shall request one.
"No letters from Consultant or in depth medical records"
Considering your health history, I am very surprised that there are no letters from consultants in your medical records. This does not make sense to me as surely consultant would liaise with GP in some way so GP would know recommended after care for you.
I did wonder if you have been given access to summary records that are put online, rather than the paper medical files. If any consultant has written a letter to GP at any point, my understanding is that you have the right to see this. Only reason for GP surgery to refuse is if they feel giving you access could cause you harm in some way.
Might also be worth accessing medical files from hospital appts with consultants. More difficult to get hold of these but possible. Probably involves form filling and visit to hospital records office. Might be worth contacting consultants' PAs and asking if it's possible to have copies of correspondence between consultants and GP.
Hughes Syndrome (Antiphospholipid Syndrome)
Has your lupus consultant excluded the possibility of Hughes Syndrome? I believe some of the symptoms overlap with lupus.
I learnt never to accept being told results were fine/satisfactory unless I'd seen them myself.
I was told my blood test results were fine face to face or over the telephone and then on more than one occasion found abnormal and borderline results when I got copies. Even if all blood results are within normal range there might be several that are borderline which could be significant.
In relation to B12 deficiency, I look particularly at B12, folate, ferritin and full blood count. See blood test links in my post above.
Homocysteine
I have read that there may be a link between Homocysteine levels and risk of stroke. High Homocysteine may be an indicator of B12 deficiency
You are correct when you suggest I only have access to summary records- nothing in-depth. No letters or records from hospital appointments consultants etc available to view. I appreciate the GP’s liaise and letters are sent from any consultations but as it is, the surgery didn’t indicate when I registered for online access to my records they would be very limited in their detail.
Another problem I find frustrating is not always being able to see my named GP. In fact, I can’t remember the last time I had an appointment with him. And sometimes, it isn’t possible to wait three weeks- therefore I have to see whoever is available at the time!
I agree with your comment re borderline/satisfactory results, but wouldn’t the GP pick up on this? For example, I had my IGE level tested - it was slightly below range but obviously not enough to warrant intervention - so how would one know if that’s acceptable or not, to question it?
As far as I am aware I haven’t had a homocysteine test done either.
I have a re-scheduled appointment with the immunologist next Thursday and am hoping he has some answers one way or the other.
Thank you once again for the valuable information you have provided.
"the surgery didn’t indicate when I registered for online access to my records they would be very limited in their detail"
I think you have the right to ask for access to or copies of your paper records.
"agree with your comment re borderline/satisfactory results, but wouldn’t the GP pick up on this?"
Short answer, possibly not. I deteriorated over more than 10 years with symptoms typical of B12 deficiency but most of my results were within normal range.
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