I have Hashmito’s. Since learning that this can influence the absorption of nutrients, I have been to the doctor’s to request tests.
Last B12 test: 229 ng/l (190-910)
I used B12 symptoms checklist which suggests severe deficiency.
Neither of this seemed to worry the doctor much, but he did agree to check for PA antibodies:
Parietal gastric antibodies negative
I carry MTHFR gene ( one allele each). Family history: My brother has B12 absorption problems.
I have just received private test results for MMA: 74.5 ug/l (<32).
What does this mean? Do I have PA?
I thought the the doctor had tested for Intrinsic Factor antibody and homocysteine, but can’t find it back now, so am starting to doubt myself. Should I push for those tests or does it not make much difference?
I’ve purchased B12 supplements or should I be thinking about injections instead?
Will any further B12 testing will be affected if I start taking oral B12?
Will oral B12 affect Intrinsic Factor antibody testing?
I’m just feeling rather confused and can’t turn to the doctor, so I’d very much appreciate your thoughts. Thank you!
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The MMA test could indicate B12 deficiency or a kidney problem - depends on ratio to another waste product (creatinine?)
Do you have previous B12 tests - showing a drop over time - which would suggest an absorption problem - to be significant drops need to be 20%+ between two tests otherwise it could just be due to the accuracy of the tests.
Starting supplements could make interpreting B12 results difficult - if you go for 1000mcg+Injections will definitely affect the accuracy of B12 tests.
IFA is not a very sensitive test so prone to false negatives. It will give false positives if done too close to an injection .... and it is only testing for one type of absorption problem.
Homocysteine not necessarily available through GPs - as is case with MMA.
Try to follow up on previous B12 tests first.
Article on thyro-gastric syndrome that may be of use
I did have a previous higher B12 test: 242 (190-910), but it hasn’t gone down by 20%, so could just be fluctuation in test. I didn’t know about the 20% rule of thumb - that’s helpful to know.
What do you mean when you say’ try to follow up on previous B12 tests first’
exactly what you seem to have done which was test on previous results.
if you have had tests prior to that then worth looking at levels in those - Also, how long ago was the last B12 test you refer to above. On the face of it your serum B12 results aren't indicating that B12 is the cause of your symptoms - they don't rule it out but they also don't provide evidence for pursuing it. The MMA is more indicative but you need to rule out other causes of raised MMA - or ask your GP to investigate.
I’m sorry to keep posting the same thing but my MMA was 1.04 and was down within range after just a few months. I was surprised and the docs were relieved. I have SIBO as well, but despite that, my MMA remains in range.
Sorry I missed this. I take 1000 mcg. of hydroxycobalamin every 3rd week, sub-cutaneously. I never did the loading doses as I respond poorly to supplements so I started low and went slow. My MMA and homocysteine normalized very fast and have stayed that way.. I have a mal-absorption problem so clearly that was the problem as the oral B12 was not getting into my cells. The key was to by-pass my digestive system.
The two tests are 5 months apart - and are, on the phase of it, showing constant B12 levels - so no evidence of an absorption problem, which implies that those are where your B12 levels normally are and that would imply that B12 isn't the issue.
In someone without an absorption issue B12 levels will be regulated from stores in the liver and kept constant at the point in the normal range that is right for you.
I had MMA tests, but not until B12 injections had already started. MMA remained raised for three years, despite frequent B12 injections, but finally on 6th test, I was within range.
My results were always between 350 - 400 nmol/L (range 0-280 nmol/l). I don't know what it would have been prior to injections, but assuming high.
It looks as if your level is high. There are three checks that your GP should be looking for:
1) Renal test first (blood test) to rule out any issues
2) PA/B12 deficiency (which you are already looking into)
3) Small intestine bacterial overgrowth (SIBO), which involves a fasting breath test series over 3-4 hours that should give you a yes/no on completion (although I got an "inconclusive"). SIBO bacteria will rob you of not only B12 but also fat-soluble vitamins and can be treated with antibiotics, sometimes several different types used as bacteria become immune. Some antibiotics can deplete B12. So this can all be tricky.
It is not easy for a GP to request an MMA test, but renal test can be easily checked and should be - at primary care level. My GP managed to get one on her third attempt - which was useful as the testing lab confirmed her diagnosis of functional B12 deficiency.
She believed that raised or high MMA was rare and had only found it twice in her career - which is why she knew to suspect my problems were due to functional B12 deficiency. It meant I needed two injections a week rather than the 3-monthly injections I was getting. This frequency continued for 6 months after which I started self injecting EOD, believing that I could make further improvements. I did, and after two years, I returned to two injections a week.
For some of us, an injection every three months doesn't give us any quality of life or relief from symptoms - both of which you might reasonably expect from a maintenance dose.
SIBO test: I'm sure that this was requested from haematologists, as my next 4 MMA tests were showing no change. The 6th test was by consultants checking my DNA for any inherited cause: none found and MMA by then comfortably mid-range. I took this as proof that the frequency of B12 was finally working at optimal level for me.
This can be quite a long haul, but I'd start by getting renal problems ruled out. Your GP should be looking for a reason for high MMA.
By the way, I have had three negative IFab tests so far, and one homocysteine test as far as I'm aware: "normal". The IFab tests can give a positive result, for someone with PA, about 50% of the time. I hope if you do get tested, your GP is aware of this.
I’m struggling to engage my GP in the results at this moment. And tbh I’m feeling a bit fatigued about being assertive and taking the lead especially when I’m not sure myself either.
He reluctantly agreed to antibody test, and he has just tested parietal gastric antibodies. They were negative. So not sure how to proceed from there.
I have started taking B12 liquid, just the dose it says on the bottle. How do I know if that’s working for me or if I should ask for injections?
Perhaps take someone with you to appointments for morale purposes, to back up what you are saying, and to take notes or discuss with you later.
I remember being that ill that I had to take my partner each time, GP or consultant. If I tried to go it alone, I would do my homework, with research papers and a highlighter, whittle it down to what was crucial, take it in with me then spend the valuable time trying to find the relevant info, losing my resolve and ending in tears of frustration, then forgetting my words, what I'd read, what I was being told, and what I was supposed to say to the receptionist after !
You can, if your GP is not being supportive, ask for another GP - harder these days I know - our practice has had three of the best GPs around leave to work in hospitals instead after decades of primary care.
I have had parietal cell antibody test negative, also 3 IFab tests negative, over time - but was still deteriorating. It was the persistance of my GP and the MMA test giving a raised result that made a difference. Plus a senior ENT consultant telling me that I was doing the right thing by self injecting frequently - at a point when I was no longer sure I was getting anywhere.
The liquid might help - who knows ? It is worth trying, but please record your daily symptoms, frequency and severity, so that you can see if there is a change. It can be very slow and difficult to detect for some of us. The B12 may raise your B12 serum level, but will it make you feel better ? This is surely the true aim. I haven't tried it personally. I did try the Better You spray, between injections, in desperation, but it made no difference at all to me.
Listening: What I wish is that GPs would stop trying to follow blood test results, and learn what it is that people with B12 deficiency actually go through as individuals. Then they might be able to do what the ENT consultant did: say, with confidence and without any blood tests ordered, that I had a severe B12 deficiency. From there, my GP could also be reassured by an expert that she was on the right track.
Looking: We are all different, but I am willing to bet that none of us looked anywhere near healthy when we first went to our GPs. Visible symptoms can be a clue: the way you walk, angular cheilitis, strange overlapping yawns, shaking limbs, hair loss ..... hair loss: I remember, when my GP was trying to suggest that this was due to age, I offered to bring in my hairbrush and show her the amount of hair I was losing !
Nurses later told me that my skin looked grey when I was first sent to them.
Thank you for your thoughtful response. It’s lovely to hear kind words from someone who understands.
You’re so right about blood test and listening and looking. I do think my GP is really trying, but yes I’m the end he bases his course of action on blood results only.
It is possible that your GP I think best to find someone you have rapport with, because this is about trust: do you trust that your GP believes you and do they trust you to tell them the truth ? This became far more important to my treatment than a fruitless search for a B12 "expert".
My GP started by trying three times to put me on antidepressants. She later became supportive and determined to find answers for me. She told me that she would not give up and she didn't. Because of this, I got the frequent injections I needed and got to see all the consultants, one after the other, who might have the answers, right up to genetic testing.
Everyone here knows what it feels like to be at the stage where you don't have the energy to fight for yourself, you don't understand the mismatch between what the medical profession in general is reading and what you know to be your own personal experience - and can't see a possible way back.
There is one. It isn't always easy, and can get worse at the start of treatment. Plenty of people on this forum have managed to get their life back on track. You do not often get posts from those without current problems - I like to think they are all way too busy out there, enjoying life to the full !
Start by asking your GP to investigate your high MMA - this is an unusual result which has a cause. I think this is the way to get further investigations started for you. If renal problems can first be ruled out by a simple blood test, that will suggest B12 deficiency: either by SIBO bacteria utilising your supply or a B12 problem suggested also by your brother's B12 problem and your own Hashimoto's. Seems more likely.
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