I’m new here and not even sure if this is the right place to seek some advice from others that may have experienced my current situation as I’m not really sure where to go with it and have limited understanding despite some time with Dr Google.
I was diagnosed with B12 deficiency in about May 2016. Had loading dose of hydroxocobalamin and then injections every three months. Was prescribed folic acid in February 2017 but no cause for deficiency found in blood tests/stool samples - no PA, no coeliac disease, bowel disease etc. Not vegetarian nor vegan. Referred to gastrologist for endoscopy and colonoscopy in Nov 2017. Again, nothing found so gastrologist recommended that all medication stopped and to have blood tests every 6 months but my GP agreed to do this every 3 months for two years instead. Last B12 injection was in August 2018.
Anyway, December 2017 I started to get numb hands during sleep which I put down to winter, cold hands, staying at parents’ house for Christmas so different bed, etc. This has continued since then to the point that it wakes me up at night.
I am back on prescribed folic acid and have been since October 2018 following blood tests but all the old symptoms of tiredness, fatigue, brain fog, lethargy, irritability are back but last blood results showed B12 levels good. I know that the tests only measure total B12. In due for another test in a few weeks - I feel that I need to persuade my GP to test total B12 but feel that I need some additional information in order to get them to do this and also worried that I’m just mad!
Any advice, similar experiences or information gratefully received.
Thanks.
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Geppers
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Go back and ask for a new test. You have a right to feel better. If you have someone you can go with as an ally even better.
I have been in a similar situation. Many years on going back to the doctor for unexplained fatigue, labs come back normal, 'you're perfectly healthy, do you want an anti-depressant?' To the extent you can switch doctors may be useful as well. I had some doctors unwilling to consider other options or take real symptoms seriously. A lab result does not mean you are not really feeling something going on. I always feel the same doubt about asking many times over and over, when nobody else has solved the problem it seems fine to give in and stop. I think though it's your body and you have to take care of it, so keep asking, take as much information as you can to your doctor.
I too have a diagnosis similar to yours (as do many people on here and on the Facebook B12 deficiency support group and beyond) and the medical profession is even worse with us than they are with a specific cause for it such as PA.
They overlook the fact that you feel dreadful and that symptoms are your body's way of telling you that something is wrong and needs treating!
You are not imagining it - they are imaging that it never happens!
There is a lot of information on how to get your jabs in replies by Sleepybunny. You can find these by double clicking on her name and looking under the heading "replies". I will include a link to her profile next.
I expect you may be best to do as hundreds, if not thousands, of us do and just give up fighting the health system and self inject. You can buy your supplies on line and get your life back.
It is much easier to do than the thought of it suggests and I find it cheaper than travelling to the Dr's to get the jabs from them.
We buy ampoules that are the same as the NHS uses from completely safe online German pharmacies.
I use Google Translate to automatically translate everything and PayPal to work out the currency exchange rate, taxes, etc.
There is more information in Wedgewood's replies and other contributors in those threads.
Thank you, I am in the same situation and on a bad day I wouldn’t of been able to find the links I f you hadn’t taken the time to do it for us.
Sadly my symptoms have progressed further with numbness in the face & numbness in my right foot. I keep dropping things out of my right hand. I have a meeting on Wednesday with my boss & I am thinking of telling him everything even the fact that two weeks after my B12 jab I feel like I have dementia can’t figure out the simplest of things & cant hold a conversation as I can’t find the words.
Thank you all who take the time to write your posts they really do give hope.
Please, please consider self injecting plus taking the supporting supplements you need.
It really sounds like you need more B12 - much more - ASAP.
You only have one life and if you need to look after yourself because the system won't then it's vital you do!
I'd be dead if I had to go weeks between my jabs!
Don't write yourself off yet! By all means tell your boss that there's a problem but ask them to support you while you get your kit together and start your treatment because you will be OK again once you have get enough B12.
Thank you, I did tell my Boss & he was very good about it.
Had a chat with my Doctor & she agreed for me to have my B12 injections every month, she also sent me to the menopause clinic thinking my symptoms were related to that but forgot completley that I had already been through the menopause almost 20 years earlier & had my ovaries removed 18 months earlier ! LOL
The menopause clinic couldn't stop laughing, they couldn't believe the errors that had been made with my care. I can't wait to read her letter.
Different GP was also shocked by how much pain I am still in & is arranging a scan of my stomach as I have refused to take anti seizure drugs to help with my numbness. Just sick & tired of being fobbed off & just want the problem sorting & not hidden by more drugs!!
Thank you all for you help & support it really does give us all strength.
a) IFA test is not very sensitive. A negative does not rule out PA - to the extent that the standards refer to IFAB-negative PA
b) generally folate absorption problems are associated with B12 absorption problems
c) guidelines were amended in 2014. They do not recommend repeated testing of B12 in cases of an absorption problem - and if your B12 deficiency wasn't dietary it is an absorption problem. It sounds as if the gastro was responding to pre 2016 guidelines.
d) the guidelines recommend treatment on the basis of symptoms because of the limitations/difficultly in interpreting serum B12 results.
whilst not in the guidelines above serum B12 test results are nigh-on impossible to interpret post loading shots because the injections themselves seem to totally change what is happening in terms of biochemistry in significant numbers of people with the result that they tend to need much higher levels post loading shots.
This article by a practicing haematologist gives a good overview of how they treat and their concerns about limitations of tests and current treatment regimes
Interesting article I don't recall reading before. Very interested in this bit -
In almost 50% of patients with low vitamin
B12 levels, levels of the biochemical markers, MMA and Hcy, were found to be normal, and these patients had no hematologic or neurologic response to B12 replacement therapy, suggesting that the low B12 values were false positive results.
Although I'm not sure where those numbers come from. Because in the cited reference, they say
Of the 300 patients with serum Cbl levels less than 200 pg/mL, 86 had one or more responses to Cbl therapy and 59 had no response. In 155, insufficient data was available.
How they translate that into '50% had no response' completely evades me. But, 59 out of 300 (20%) is quite a lot.
What was the actual B12 level in your last blood test. Some GPs have the impression that a few points about thr minimum is “normal”. Here in the USA, labs add a caveat to blood test results for B12 less than 400 pg/ml (ng/L) that 10% of the population exhibit neurological damage in what is called an “occult” or hidden deficiency.
Japan treats anything under 500 pg/ml as deficient and with injections.
Folic Acid can mask the B12D in some cases as well.
I find that I want any blood test to be off the limit of the test i.e. >1500 pg/ml or my symptoms start to return.
Are you keeping a logbook of symptoms and measuring severity daily?
I have used folic acid in the past but I was never ever told why it was prescribed either...In the UK they have a very bad tendency of hiding crucial blood results or scans from
patients & just say they are normal...I have given up on the NHS doing ny blood work I use Private Labs now & if a vitamin is low I treat myself & if a food does not agree with n
me I do not buy them again...Doctors are not Nutritionist they take no courses, they are drug pushers like the corner dope dealers...I have lost all hope in dealing with quackery
my patience is now thin...Be your own Doctor do not rely on them...Medichecks is a great lab, they even send out written reasons on abnormalities they are professional not lazy
Your blood tests are your's. Ask for all test results: although they belong to you, there may be an admin cost but this should be reasonable: after all, the blood was extracted from your arm, because you went to the GP!
One person's "Normal: no action" could be another person's "heading rapidly toward out-of-range (up or down) for no good reason" or "always been 14 or 15 now suddenly 32"... and these won't necessarily be noticed by a busy GP or one that doesn't know you that well.
If you aren't sure what the results mean, or even what is being tested, ask on here because there are plenty of people who can give you advice on that.
I was given folate and ferritin by my GP not because it was under range but because I was being treated for B12 deficiency and both folate and ferritin were low-range, I was losing hair and gums were bleeding, and it benefits B12 if both of these are high in range.
I get given my blood test results for nothing, without having to ask, as a matter of professional courtesy. Folic acid and ferritin are now my responsibility: they fall quickly after supplementing finishes no matter how much I eat, so I need to have daily multivitamins and minerals, have changed folic acid from 400 mcg to 200 mcg (recommended daily intake) because last 2 blood tests have been high (over 20 ug/L)
- and because my GP is onto it and suggested that as a next move. This is good doctoring and so I take her advice.
Still trying with ferritin, not so easy. I was advised by people here who, although not medical professionals, know how best to live with and manage B12 deficiency through experience, that folate and ferritin ideally should be in top 1/3rd of range, This will need monitoring by GP as, unlike B12, over range can cause problems and adverse symptoms. My GP does not ever test B12 levels: she knows they will be very high as I self-inject every other day in order to keep my symptoms manageable. Not, you understand, a cure or that symptoms have all miraculously disappeared, just a little more within my control.
Not living a nightmare though. You are not mad, okay? Think we've all felt that at our lowest.
You could ask for an MMA test, although this is neither cheap nor easily attainable: local hospital labs don't usually do this. My GP got this done by a larger lab when I was unable to cope with 3-month injection frequency: despite blood swimming in B12 (>2000 ng/L) my MMA was still raised - lab agreed with her diagnosis of Functional B12 deficiency, because renal problems had already been eliminated as cause. MMA should not be raised after B12 deficiency addressed. There are other reasons for a raised MMA level, but these can be checked. My homocysteine level did not, however, reflect an ongoing B12 deficiency.
Later consultants: gastroenterologists, neurologist, haematologists, etc seemed not to believe this confirmed diagnosis but found nothing to replace it: not SIBO or Coeliac etc, so as far as I'm concerned, this is what I have, and this explains why I am still symptomatic although gradually improving over the last 1 1/2 years, since injecting every other day, would (and have) rapidly deteriorated if delayed injection/ energy depleted too quickly.
I have gained nothing of any use to me in my quest to get well by seeing consultants and would say that a bright, supportive and observant GP is of far more value, in retrospect.
This is just my personal experience and I am not medically qualified.
List your symptoms, then make a daily chart showing frequency and severity. This could help you see deterioration or improvements and how they relate to injections (if reinstated), could help you later to see symptoms disappear (often not noticed for a while or forgotten), could help if you have memory problems, can help GP or consultants. Can also help you see what a consultant is like: do they push list to one side as unimportant or study it, maybe ask for a copy ? I used to judge them by whether they called my GP's reports " detailed" or "lengthy" - one got read, one didn't !
I hope you found this more detailed than lengthy and wish you the best of luck.
Blood tests for autoimmune antibodies don't always find them, even when they are there, ask for these tests to be done again, also there are other blood tests that can be be done other than the proven unreliable B12 test which better indicate if you are B12 deficient, information about this on Pernicious Anaemia Society website.
What does Not vegetarian nor vegan have to do with anything? I'm a Vegan & I was deficient as a meat eater, numbness even in my head at one point. It was only when I stopped eating meat & dairy & started taking B12 supplements that my problem started to go away. 40% of the population are B12 deficient.. Have you investigated other causes? Lyme disease, MS, what are your Iron levels like?
"no cause for deficiency found in blood tests/stool samples - no PA, no coeliac disease, bowel disease etc. Not vegetarian nor vegan."
I learnt to always get copies of all test results after being told everything was normal and then finding abnormal and borderline results on copies. These days, I don't trust what I am told about results unless I have a copy in my hands.
What test did you have for PA?
In UK, it is usually an Intrinsic factor Antibody test (IFA). IFA result is not always reliable and it is still possible to have PA even if IFA result is negative. About 50% of people with PA will have a negative result in IFA test.
Is your GP aware that it is possible to have Antibody Negative PA?
Some countries use a PCA (Parietal Cell Antibody) test but this is not recommended as a diagnostic test for PA in UK. About 10% of people with PA will have a negative result in PCA test.
Two first line tests are recommended in UK. Did you have both of them and have you seen actual results? UK GPs sometimes forget to do second test....
1) tTG IgA
2) Total IgA
tTG IgA checks for a particular antibody to gluten. Total IgA checks for patients with IgA deficiency. Coeliac patients with IgA deficiency will not produce the antibodies to gluten that the tTG IgA test checks for. Patients with IgA deficiency will need different tests for Coeliac disease.
Before having Coeliac tests did GP say that you needed to eat plenty of gluten in more than one meal a day for several weeks before blood taken for Coeliac tests?
One reason for negative results in tTG IgA test is that patient was not eating enough gluten prior to test, therefore not enough antibodies to gluten were circulating in blood to register a positive result.
NICE guidelines on Coeliac disease suggest patients who continue to have Coeliac symptoms with negative blood results should see a gastro enterologist.
Fish tapeworm and Giardia Lamblia are two I have read that can lead to B12 deficiency. I think there are others. Do you ever eat raw fish eg sushi, smoked salmon etc? One potential sign of fish tapeworm infection is a raised level of eosinophils, a type of white blood cell. Eosinophil level can be found on Full Blood Count results.
In UK, my understanding is that letters to GP are supposed to be filed with a patient's medical notes so in my opinion are less likely to be ignored than things said to GPs or on photocopies of info handed to GP.
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic with an in range B12 result.
Has your GP considered the possibility of Functional B12 deficiency? This is where there is pelnty of B12 in blood but it's not getting to where it's needed in the cells. Functional B12 deficiency is mentioned in Point 5 of above link.
"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 mention recent BNF change.
"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".
For some people with PA, it can take many years to get a PA diagnosis. If you think PA or Antibody Negative PA is a possibility, it's probably worth joining and talking to PAS.
Link above mentions the importance of treating any B12 deficiency at same time as treating folate deficiency. I think this is because folate treatment can mask the effects of B12 deficiency on red blood cells. See Management section in link above for an explanation.
If you have neuro symptoms, have you seen a neurologist?
NICE CKS link in this post recommends that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.
Brainfog would usually be considered as a neurological symptom. Do you have any other neuro symptoms eg tingling, pins and needles, insect crawling feeling ( formication), numbness, balance problems, memory problems, tremors, restless legs syndrome, tinnitus, word finding difficulties etc.
One neuro problem that can be associated with B12 deficiency is proprioception problems ( problems with awareness of body in space)
If seeing a neurologist, they should check proprioception sense (but some don't).
Two tests that check proprioception are
1) Romberg test
2) Walking heel to toe with eyes closed
These tests should only be done by doctor at medical premises due to risk of loss of balance. Videos on Youtube of these and other proprioception tests.
If no neuro tests done with eyes closed then that suggests that proprioception has not been fully tested.
Neurological Consequences of B12 Deficiency
It's vital to get adequate treatment. Untreated or under treated B12 deficiency can have severe consequences.
Hi Geppers, I am not an expert but if you are taking B12 tablets, you are going to appear to have loads of B12 floating around your body. If a blood sample is taken you will not appear to be deficient in B12 but that is masking the underlying problem that your body is possibly not able to absorb orally taken B12 hence you need an injection of B12. Injected B12 such as Hydroxocobalamin is stored in the liver and released over a period of about 3 months. SO after 3 months you will feel tired etc
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