I have tried to find an answer to my question online to no avail as I’m struggling to find someone in the same situation as me.
I had two blood tests back in 2015 in Australia while travelling as I was suffering from dizziness and extreme fatigue, they both came back with low total b12 (113 in April and 114pmol/L in August). However it showed my active b12 was 76pmol/L. My doctor at the time diagnosed me with pernicious anemia and prescribed me hydroxocobalamin 1mg/1ml and gave me a shot that day. I felt a lot better for a short while.
On my return to the UK less than a month later, I had further blood tests as my doctor in the UK wanted to check himself before injecting me with my leftover shots. He said they came back ‘normal’ but I stupidly at the time didn’t ask the actual value and he said my Australian doctor was wrong. I can’t access these results now it seems as I am not registered with that doctor anymore, to check the values. My current doctor said there is no record of them on the system either.
In 2017 I returned to Australia, and as I had the diagnosis on my medical records there, had another b12 shot in February. Again I felt miles better. I haven’t had any more since this one.
In November 2017 I had another routine blood test which had my b12 at 337pmol/L! However I was still experiencing dehabilitating tiredness, falling asleep at my work desk, in the bath, etc along with dizziness.
The tiredness just seems to get worse and I know it’s not right. I am confused why my b12 count was high in November 2017 when I hadn’t had any shots since February, could it be my Australian doctor was wrong in his diagnosis as per my UK doctor’s opinion?
I can’t think of anything else that could affect my results. The only thing I have done that helps since my diagnosis was drink a lot of red bull, a couple of cans a day (never drank previously when b12 was low) which I have seen contains a fair amount of b12. Otherwise I am a meat eater and have a varied diet that shouldn’t be a problem.
Sorry for the lengthy post. Any opinions/insight with this would be fantastic. I know I should just go through my doctor, which I am trying, but in all honesty they never seem too interested in investigating these types of things nowadays. Just worrying as the Australian doctor stressed how important the injections are and to keep them up.
Thanks all,
Sasha
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First, lets get a bit of terminology out of the way - PA is an autoimmune disorder in which your body attacks the mechanism in your gut that allow you to absorb B12 from your food.
It is the most common absorption problem that leads to a B12 deficiency.
Whatever the cause of a B12 absorption problem the treatment for a deficiency is the same - B12 shots. These put a lot of B12 into your blood very quickly - using oral supplements can raise serum B12 levels (doesn't work for everyone) but it is a lot slower and if you have a B12 deficiency it needs to be addressed quickly. Serum B12 levels will then drop - but how fast varies a lot from individual to individual - the average for patients being treated with hydroxocobalamin is 2 months for the B12 to be removed from your system - mostly by the kidneys.
Although somebody who doesn't have an absorption problem will be able to regulate their serum B12 levels from stores in their liver this relies upon using the same mechanism for reabsorption to your blood as is used for food so you can't effectively use stores in the liver if you have an absorption problem, so you are just left with what is in your blood.
so the GP you spoke to in the UK really didn't know his stuff when it came to B12 - your serum B12 was in the normal range again but that was because you had had a B12 shot and it was reducing.
Additionally, a significant number of people seem to react to high serum B12 in a way that makes the process that allows B12 to pass from your blood into your cells much less efficient with the result that it isn't uncommon for people to need much higher serum B12 levels after they have had a loading shot than they did before - for many of us this can mean needing to maintain serum B12 levels at a point that is way above the measurable range for the normal serum B12 test. If your B12 levels are 337 I am not surprised that you are feeling really rough.
Unfortunately trying to explain this to most GPs can be a challenge at best.
The red bull is unlikely to have much of an impact on your B12 levels if you have an absorption problem and I'd be inclined to stop taking it because of other ingredients eg the sugars ... and I can't remember what the B6 content is like.
Thank you so much for taking the time to write such a helpful and educational reply, I wish I had come to this forum a long time ago (would’ve saved endless googling!) I must admit even after reading a lot I haven’t fully understood the condition so your information was really helpful- thank you.
In the Australian blood test, the counts of 113 and 114 were classed as very low, however the count at 337 was classed as well within range with the range being 138-800 pmol/L (not sure if this is the common measurement used in the UK as it seems to vary).
I am due another blood test next week for total b12 levels, the doctor I have now doesn’t like the idea of giving the shots for therapeutic reasons and wants to do a test first which I guess is fair enough. It just confuses me how it can be diagnosed and then undiagnosed!
I guess if the total b12 comes back low again they will need to do further testing before I get a shot. Not being a hypochondriac I usually try and get on with it if I’m feeling unwell, but the fatigue mainly is every day and is really getting me down and disrupting everything, it feels like I get nothing done.
Just in case, for anyone interested or in a similar situation I will post what happens on this thread.
Thank you again for your great advice, have a lovely weekend.
if the serum B12 test shows a drop of more than 20%, even though it still might come back in range, that would be good evidence that you do actually have a B12 absorption problem - 20% is the accuracy of the test in the sense that doing the test on the same sample several times would give results that varied by that much.
The rate at which B12 is removed from your blood is greater when the B12 levels are highest so about half of the B12 goes in 24-48 hours.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"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".
In a nutshell, UK national guidelines stress that patients who have the symptoms of B12 deficiency (with other causes of symptoms excluded) should be treated with b12 even if B12 is within normal range.
Might be worth joining and talking to PAS (Pernicious Anaemia Society).
PAS should be able to suggest useful info to pass to GPs.
My personal opinion is that it is often better to raise queries about treatment in a letter to GP. In UK, my understanding is that letters to GPs are supposed to be filed with medical notes so are therefore harder to ignore.
See letter writing link in my other post.
Some GPs find it difficult to cope with assertive patients. Be prepared for GP/patient relationship deteriorating.
Help for GPs
1) Section on PAS website for health professionals
Is there any chance of writing to/contacting Australian doctor who made original diagnosis and asking for a copy of records/letter etc that gives details of original diagnosis?
Hi, the UK doctor is a bit silly, he should not have measured your B12 only a month after your injection (if I understood correctly).
UK guidelines are not to test B12 after injections have started.
And he should have known that if your level dropped so low just a month after your injection that you really have a problem. In some of the research papers the average serum B12 level a month later after 1000mcg of intramuscular hydroxocobalamin is in the 2000ng/L range!
Perhaps you had a cyanocobalamin shot which may explain why your level was so low just 1 month after?
Thank you everyone for the really helpful replies, my new doctor in the UK has ordered a FBC and b12 blood test for Thursday, so I’ll wait to see what that comes back with (as I haven’t had a shot in over a year)! If I have any difficulties following the results I will try a letter as some have advised here, and will try and contact my Australian doctor, overall I have a lot of faith in the doctors (in general) in Australia as opposed to the UK ones, as they seem to have a lot of time for patients and the healthcare system isn’t as stretched meaning they are keen to investigate any problems. I’ll keep updated on here for anyone interested
It was very informative to me however others may already be aware of the majority of the information, it also has flowcharts on how a diagnosis should be made and subsequent treatment following results.
If all else fails, some on the forum choose to self treat using a variety of methods eg B12 patches, B12 sublinguals (under the tongue lozenges) or B12 injections.
For me, self treatment was an absolute last resort when every attempt to get NHS B12 treatment had failed.
"has flowcharts on how a diagnosis should be made"
Flowchart from BSH Cobalamin and Folate Guidelines about Diagnosis of PA and Antibody Negative PA.
"If I have any difficulties following the results I will try a letter "
Might be worth mentioning risk of SACD, sub acute combined degeneration of the spinal cord for those who are untreated or under treated for B12 deficiency. SACD is mentioned in the BSH Cobalamin and Folate Guidelines.
I'd also suggest talking to PAS (Pernicious Anaemia Society) prior to writing a letter to GP as they can recommend useful info to pass to GP.
"new doctor in the UK has ordered a FBC and b12 blood test for Thursday"
Has your GP also ordered
1) Folate and ferritin?
B12 and folate deficiencies can lead to enlarged red blood cells (macrocytosis).
Macrocytosis is one of the signs GPs look for when they suspect b12 deficiency. GP may not be aware that it is possible to have severe b12 deficiency without any signs of macrocytosis.
See link on macrocytosis in my other post.
It's important to test folate as well as B12 as any macrocytosis in red blood cells may be due wholly or partly to folate deficiency. There are other causes of macrocytosis as well.
A person with high folate levels may appear to have normal size red blood cells even with B12 deficiency as effects of high folate on red blood cells may mask effects of B12 deficiency.
See Management section in link below on folate deficiency.
It's important to test ferritin ( a stored form of iron in body) or other iron tests as iron deficiency can lead to small red blood cells (microcytosis).
A person who has B12 and/or folate deficiency and iron deficiency may appear to have normal size red bood cells because the effects of low iron on red blood cells masks the effects of low b12 and/or low folate.
If GP won't order folate and ferritin/other iron tests, they are available privately in UK.
2) MMA, Homocysteine, Active B12?
"I haven’t had a shot in over a year"
Are you taking any B12 supplements at the moment eg tablets, lozenges?
So I’ve had my blood test back and my folate was low (didn’t get a figure but will follow up on that) and my b12 was 287 ng/L within range (200-900 ng/L). Not sure where to go from here, maybe my Australian doctor got it wrong? Either way I’m a little confused, but will follow up with my Australian doctor when they open this evening to try and get a record of the diagnosis. All I know is that I felt a ton better after the injections, and ever since I haven’t had one I have experienced a lot of the common symptoms, as well as lower back pain when sitting for a while (not sure if this could be related). I’ll keep posting on here anyway in case my journey helps anyone.
Might be worth posting your update as a new thread as responses on older threads sometimes get missed.
"my folate was 2.5 (range 4.5-45.3nmol/L I think! )"
Is GP planning to prescribe folate treatment?
It's vital that any co-existing B12 deficiency is treated at same time as folate deficiency otherwise effects of folate treatment may mask effects of B12 deficiency. See Management section in this link.
"my b12 was 287 ng/L within range (200-900 ng/L)."
It is possible to have severe B12 deficiency with a B12 result that is within normal range. I speak from personal experience. I had symptoms affecting multiple body systems , including neuro symptoms with most B12 results between 300 - 500ng/L.
UK national guidelines on B12 deficiency make it clear that a patient who has the symptoms of B12 deficiency should be treated even if B12 level is within normal range.
Link about writing letter to GP if symptomatic for B12 deficiency with a normal range result.
Hi SleepyBunny, thanks for the reply The results I posted today were the ones the receptionist gave me over the phone, however I’m popping in to see the doctor tomorrow. I have tried to find something online that shows the nhs guidelines stating that b12 deficiency symptoms must be treated however am having no luck. I’m not super keen on my current doctor and wanted to go in armed so to speak would you know where I could find this information to maybe print off and take in with me?
Also, did you manage to get the docs to give you the injections despite the ‘in range’ b12 results?
Forgot to ask in my previous post, does anyone have any info/experience on ordering the injections from the German sites people talk of? I am not afraid of self injecting, the doctor who first diagnosed me gave me some tips as he said I might end up going down that route as I’d need to have them for life. If I get no joy with persuading my doctor to give me injections, I’d like to give self injecting a go. Just obviously a bit wary of where I’d be getting the shots from etc
Me again I’ve just followed up and my folate was 2.5 (range 4.5-45.3nmol/L I think! ) my folate always seems to come up low as well... but tablets in the past haven’t seemed to help! Not sure if this is relevant or perhaps causing b12 levels to seem low in the past as they are now in range even though I haven’t had a shot for over a year ...
Flowchart (right hand side) indicates that in range symptomatic patients should receive B12 treatment while waiting for results of MMA, Homocysteine, Active b12 and also that with patients who show a clinical response to b12 treatment eg symptoms improve but have negative test results, GPs should consider continuing B12 treatment.
Results of MMA, Homocysteine, Active b12 may be affected if patient has had recent B12 injections/supplements.
Some areas of UK use local guidelines that are not up to date and do not reflect national guidelines. Might be worth tracking down local B12 deficiency guidelines for your area of UK and comparing them with national guidelines.
1) Try searching on local area NHS website.
2) Could ask GP practice manager for a copy of guidelines surgery is using, this might irritate them.
3) Local MP may be able to help track them down.
"did you manage to get the docs to give you the injections despite the ‘in range’ b12 results? "
After many years of deterioration yes...I had to resort to treating myself for a long time though. I think the evidence of so many symptoms disappearing helped persuade GPs. I also moved GP surgeries.
Thanks so much Sleepybunny! I will have a look through these links tonight, I’m hoping to get to the doctors tomorrow. I’m glad to hear you had some success in the end!
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