hi I had low active b12, enlarged red blood cells and loads of symptoms. started the shots about six months ago. lots of symptoms left. but at the time I didn't check homocysteine or MMA or anything else to then have actual proof that I did have a deficiency. as now some people refuse to believe me as they say all labs are different and private ones have a diff range to the NHS and my results were always within the norm anyway. they of course don't understand about the clinical picture or that u can even have normal b12 but be deficient ie not absorb etc etc...
so I can't take homocysteine or mma now as im on the shots but if I stop them for a week (I need one every few days) will homocysteine or mma or any other test show that I indeed have a deficiency? I just need some proof urgently but not sure if its too late to take any tests that one can take before any shots are done... thanks
ps. my results at the time also showed a bit low vit d, iron and high folate
b12 serum was declining for years but then went up as I took vitamins. well, I know I can't absorb them and the test is futile only started to feel good on shots
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How did they explain your enlarged red cells, and why did they start you on B12 injections?
It certainly sounds like somebody diagnosed a B12 deficiency back then. If they did then the doctors need to explain why they think It's OK to stop the injections now.
It's highly unlikely that hCys and MMA would rise significantly over a month or three, let alone a week.
ah thanks, so there's no way to confirm this with tests now? its a shame...
nobody diagnosed me officially, a private lab saw low active b12, enlarged red cells and width, they suggested I do an mma, but I didn't. then I read about b12 and realised I probably have this. my gp agreed to prescribe the loading dose and now I do my own shots. but there are some people (not doctors) who try to undermine me and make everyone believe I never had or have a deficiency. but since I started on the shots, loads of symptoms went and I believe the red cells are normal etc. a functional doctor checked my results and explained I have a functional deficiency. but the person challenging him says that when I started on supplements my serum went up...but after a few months my active was low and I was much worse off physically, anyway, I know I have it but its hard to prove it, even with med evidence. is having red cells normalised not a proof in itself??
You are very unlikely to have a functional deficiency.
A functional deficiency means that you have high levels of B12 in your blood, but it doesn't get to the right places in your cells. The fact that injections alleviate at least some of your symptoms means that it is getting into your cells.
You had macrocytic (large red cell) anaemia. There are really only two causes of this - a B12 deficiency or a folate deficiency. You had low B12. That means it's fairly obvious that you had a B12 deficiency.
yes thanks! I had high folate which the doc told me is a finding when b12 is low. at one point I had high serum b12 that's why I thought it was functional. well anyway I don't know how else to prove it to this person who keeps telling me my serum was high, my active was then low but still within range, and private labs use a different range to the NHS so can't be trusted anyway. ARGH!
Yes, low B12 can cause high folate, while also having symptoms of low folate. It's a functional deficiency of folate, caused by the Folate Trap - explained here - b12science.com/B12Science/D...
This next link is to a summary of the BSH document above that indicates that patients who are symptomatic for B12 deficiency should be treated to avoid neurological damage, even if their serum B12 is within normal range.
"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 reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Article suggests ....
1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections
2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.
3) Successful treatment should not be stopped
I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.
My GP ran the MMA test on me after I started injections. I think she wanted some reassurance that my body was using the B12 appropriately. MMA test showed low levels—what she was hoping to see. I too wish that I’d had that test prior to injections and CBC—also not done prior to injections. I think the doctor who found the deficiency—gastro-was surprised at low B12 findings due to my age—44. . When I was at my sickest, my GP didn’t send me for another B12 test, she gave me a B12 shot on the spot as I could barely drive to the appointment. I was in sheer agony and exhibiting symptoms of anemia. I was severely symptomatic with noticeable improvement within 3 days of injection. My GP was satisfied with that and comfortable making diagnosis of B12 deficiency and ordered shots for life due to clear neurological involvement. Seems pretty simple: B12 on the low side with symptoms. B12 injections resolve symptoms. Clear case of deficiency. Good luck to you!
Agreed! The insanity is unbelievable! It’s hard to believe that patients have to fight for something as straight forward as adequate B12 injections. Like we’re all just having a good time self-injecting as much as we can. Bottom line—we all just want to inject enough to actually feel somewhat normal. Simple as that. Good luck to you!
MMA can still be raised after injections have started- but this is unusual.
My MMA was tested six times over three years, and was found to be raised (not high) in all except the final test result, which had dropped down to comfortably within range. The first time it was tested was because the B12 injections that I was getting every three months were not effective and I was getting worse- the GP organised it. This test can be difficult to get locally - she tried three different hospitals before she was successful.
My GP sent me to haematologists - which is where the next four of my MMA tests were carried out. The final one was tested by a Metabolic Diseases consultant. My homocysteine level was normal.
My MMA level prior to B12 injections was never taken, but is unlikely to be looked at unless there is a need for secondary confirmation of B12 deficiency - or, as in my case, if B12 injections appear ineffective and condition worsens.
My GP believes raised methylmalonic acid (MMA) is rare- she knew immediately what test to request only because she had had a patient with functional B12 deficiency ten years previously and had made a note of it. The Inherited Metabolic Diseases consultant I was eventually sent to said that he had seen very high MMA levels in B12 deficient patients. I think it quite unlikely that these patients were self injecting.
No DNA cause was found for me. I have found that frequent injections keep most of my symptoms at bay most of the time. I have improved but it has taken a long time.
My folate and ferritin levels were also quite erratic despite efforts to control, and took about two years to calm down and stabilise at good levels. MMA took three years. I'm waiting to see if my latest Dexascan shows any improvement on bone density: I have osteoporosis of the spine, for which I have vitamin D on prescription.
Please don't deliberately deteriorate in order to prove to a GP that you have B12 deficiency. The macrocytic anaemia with high folate has already done that for you.
aww thanks for that! im actually going through some legal proceedings. I wouldn't really care to prove it to a gp...but have to prove it in court! as the person is saying my serum b12 was always normal and at one point after having been low actually went up before the shots so they're saying I never had a deficiency. plus that my active b12 was never out of range, plus that my gp said the private labs use a different range than them...so they're picking up on all these silly matters and try to prove I was never ill...
so I wondered if theres any test at all I can take now. a fbc with normalised red cells perhaps? I would indeed even probably suffer a bit to prove it...
Why don't you ask your gastro to have an endoscopy? It's a long shot, but if you have PA you will probably see lesions consistent with the disease. Its not a serum B12 test, but it can prove your point.
It may be difficult to prove a b12 deficiency but keep trying.
I did eventually after many years get NHS GPs to treat me.
I had a past diagnosis of B12 deficiency which I feel was not treated adequately at the time (had one set of loading doses) and B12 results afterwards were well within range so I was refused treatment on several occcasions. I had multiple typical symptoms including many neurological problems.
I had to move surgeries more than once to find one where a GP actually listened to me.
In the mean time, I chose to self treat as I was scared at my dementia type and spinal symptoms.
"private ones have a diff range to the NHS and my results were always within the norm anyway. "
BSH Cobalamin and Folate Guidelines (UK document) indicate that patients should be treated if symptomatic for B12 deficiency even if results within range.
If you're in UK, you could read the BSH guidelines and pick out extracts from it that show normal range but symptomatic should be treated. You could also refer to the BMJ article I linked to in my first reply.
Link about writing a letter to GP if symptomatic but within normal range.
Have a look at the UK NEQAS alert in above link which your GP might find helpful if you're in UK.
B12 article from Mayo Clinic in US mentions that tests to diagnose B12 deficiency are not always effective and this includes serum B12, active B12, MMA and Homocysteine.
Some forum members have reported keeping a daily symptoms diary that tracks changes in symptoms over time and if and when any treatment is received. might also be worth including a note of relevant blood results eg B12, folate, ferritin (or other iron tests) and Full Blood Count (known as Complete Blood Count in US).
A symptoms diary could be useful evidence of improvement or deterioration in symptoms to show GP/specialist.
"I just need some proof urgently "
"b12 serum was declining for years "
Do you have any of your test results from the past showing that B12 level was declining?
How about using one of the symptoms lists I linked to in my first reply on this thread and tick off all your symptoms and add any additional symptoms to the bottom of list then pass to your GP/doctor.
The B12 books I mentioned also have symptoms lists in them.
One thing that helped me was trying to exclude all other conditions that had similar/overlapping symptoms eg Lyme disease, Lupus and related diseases such as APS (Antiphospholipid Syndrome - also known as Hughes Syndrome), Coeliac disease, Thyroid disease and a few others.
I was pretty sure it was B12 deficiency but as my GPs at time were not listening to me and were saying it wasn't B12 deficiency, I wanted to exclude all the other possibilities.
"im accused of faking being ill and then miraculously getting better on these shots.....ridiculous.."
I was diagnosed with hypochondria, told I had psychosomatic symptoms, told all my symptoms were due to depression, told it was ME/CFS etc etc even though I kept asking "Could it be B12 deficiency?"
Years after I started to self treat and finally got some NHS treatment, I am still improving slowly. I feel I lost nearly a quarter of my life to this and still feel wistful sometimes for the life I might have had if I had been treated sooner.
Please keep up the fight to get treatment.
It can be long hard fight...I recently sorted through my old paperwork and had almost three folders of info, letters etc which showed just how hard I fought to get treatment.
If all else fails some choose to self treat but my personal view is that this is a last resort.
If you're a PAS member and in UK, PAS may be able to provide advocacy for employment/educational issues .
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test but there are UK GPs who appear to be unaware that it is possible to have Antibody Negative PA.
Antibody Negative PA is mentioned in BSH Cobalamin and Folate Guidelines (UK document) and in Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and B12 Deficiency"
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
There are other causes of b12 deficiency besides PA.
Any possibility of internal parasites eg fish tapeworm? Have you ever eaten raw or uncooked fish? Have you ever lived or stayed somewhere where internal parasites are common?
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found in full blood count results.
There are other internal parasites besides fish tapeworm that can lead to B12 deficiency eg Giardia Lamblia.
thanks!!! how do I check for parasites? my IF was negative
my serum b12 was declining for years but when I took vitamins it went up. but ofc it doesnt mean I can absorb it and it seems I can't as I only felt worse.
You could look at your blood test results to see if there is anything there that suggests the possibility of an internal parasite. As I mentioned in my reply above, one potential sign of fish tapeworm infection is a rise in eosinophils, a type of white blood cell.
I guess there's a chance that an internal parasite infection may be picked up by an endoscopy.
I'm having computer issues so struggling to search online but you could search for "B12 deficiency parasites".
"my IF was negative"
Perhaps if you passed info to your GP/doctor about Antibody Negative Pernicious Anaemia, maybe your GP/doctor would reconsider the possibility of PA?
There is something in the BSH Cobalamin and Folate Guidelines ( a UK document).
Article that mentions Intrinsic factor antibody negative atrophic gastritis
This next link suggests ( in the section about what the test result means) that a negative result in the Intrinsic Factor antibody test does not necessarily indicate that a person does not have PA.
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