Hi, firstly many thanks for all the help and advice I've had from these sites. I've discovered low ferritin, low vitamin d and now have the B12 results. I wasn't contacted about the MMA test, so presumed everything was okay and that it was back to the drawing board! Receptionist said No action on Friday, so thanks to your previous advice picked up my printout today!
It says the MMA result suggests functional vitamin b12 deficiency/ insufficiency at the tissue level providing renal function is not impaired. It also states MMA can be elevated independently of vitamin B12 deficiency, eg thyroid disease, inherited M acid urial intestinal bacterial overgrowth or hemoconcentratuon.
I'm going to contact St Thomas to see what they suggest, but am thinking I need to ask my Doctor for the IF and parietal test? Can anyone suggest anything else I need to get checked please as obviously my Doctor hasn't!
My B12 was 262 when it was last checked in August and has taken since then to get the Active B12 sorted! I
I've been feeling so rotten for so long, ( diagnosed ME 16 years ago) had 10 months of recurring sinus ear infections again last year. Since 3 antibiotics in a row prior to Vhristmas then a weird migraine, have continued to feel rotten ever since. Balance has worsened, vision problems, weakness down one side, breathlessness, awful brain fog, stomache pain, exhaustion, the list could go on!
I am fuming that I've had to find these results via a printout, but not at all surprised. But on the other hand am incredibly hopeful I may have discovered something that could finally help.
Would really appreciate your help and advice once more please.
Jo
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Your MMA is very high and your Active B12 (holotranscobalamin) is low. Now they're right that the MMA could be elevated by other things - but in combination with the low holoTC it's doubtful. The pair, in combination, very strongly suggests a functional B12 deficiency.
A positive anti-IF antibody test would make a diagnosis of PA cast-iron. The problem is that this test gives a false negative 50% of the time, and most doctors don't know this - and many don't believe it, even when shown the reports in the medical literature. The anti-GPC test is more accurate (about 15% false negative) but there are other things that can cause a positive result.
The only other test you could try is a total homocysteine test. This, like the MMA test, is high if your B12 isn't doing a proper job.
I would ask the GP for an anti-IF test and, before the results are known, to be started on a course of B12 loading doses. That's the best way to diagnose B12 deficiency - see if it gets better when it's treated!
Thank you once again for your help fbirder. I asked for a homocysteine test before the active b12 and was told only really I'll people need that, so not sure I fancy my chances! Will have to look up to see if it's available privately, but am guessing it will be expensive! Does this need to be done before any supplementation is started please?
Also if it is normal does it mean I'm less likely to be considered having b12 as a problem?
Am going to try to printout guidelines Marz has told me about and will ask about the above you've suggested.
"Diagnosis of vitamin B12 deficiency is typically based on measurement of serum vitamin B12 levels; however, about 50 percent of patients with subclinical disease have normal B12 levels. A more sensitive method of screening for vitamin B12 deficiency is measurement of serum methylmalonic acid and homocysteine levels, which are increased early in vitamin B12 deficiency."
I take a bit of issue with where the rest of the paragraph goes, but the bit that I've quoted is helpful.
Thanks Galaxie, am hoping I have enough results to get somewhere now, with low serum and Active B12, MMA, low ferritin and vit d. Have asked for the IF test, am awaiting reply...
how ill does your GP think 'really ill' is? stiff on a morgue slab?
can understand your frustration and anger.
homocysteine is one of the more expensive tests - though the cost still pails into insignificance when compared to treating the complications caused by a severe B12 deficiency.
Back to NHS needing to be renamed the national illness service I guess - lost its way totally in terms of being a force to promote good health and prevent illness ... though I supose there are some activities like promoting exercise and support giving up smoking that do a bit towards promoting health.
Thanks Gambit, appreciate your reply and made me smile I asked about the homocysteine, MMA and antibody tests quite some time ago and made to feel I wasn't ill enough. So it looks like a lot of time has been wasted. The trouble is when you've felt so ill for so long you almost accept it's the norm and you forget what just feeling good is like without having to be constantly trying or convincing yourself you feel better than you actually do. There's a certain part of you that has to accept it just to keep what sanity you have left!
Yes, we've made such great advancements in the medical world with technology, but so much simple stuff is overlooked isn't it.
It seems to me that your GP is reluctant to diagnose B12 deficiency - what more does (s)he need ! Your serum and active B12 is low, your MMA is very high (both signs of B12 deficiency) and you have serious symptoms, which need to be treated urgently.
Your GP needs to be made aware of the BMJ latest research document (bottom of page 3). There seems little point in asking for homocysteine or IF testing as the latter is unreliable and high homocysteine is present in other diseases, e.g. thyroid disease, etc.
Thanks very much Polaris, have included your link in the letter just given to Surgery. It was really helpful about the MMA paragraph in particular. Will read it all through properly, but just wanted to get going with this and it was quicker than an appointment at this stage, just want to get on with the treatment if I'm given the go ahead!
Thanks Clare. I asked my Doc for MMA but as said above I wasn't deemed ill enough, so not sure it's something a surgery would offer? I was fed up watching my Serum B12 decrease, so requested a referral for the Active B12 ( postal test from St Thomas) after 2 months Doc decided I could. It said on the form MMA is also available for just over £90. I checked and they said if the Active iB12 is low enough they would contact me about testing for MMA which I presumed I'd have to pay for if and when. Didn't hear anything from them so assumed I didn't need it, and therefore surprised to see it had been done on my printout. Like everything, guess it's always worth an ask. Are you having problems which you think are B12 related?
Thanks for explaining. I'm still trying to get my head around it all. My B12 is 108 (range 120 - 950) but I don't seem to have any symptoms except very low HB of 80. I intend to avoid the whole self-injecting thing so am trying to arm myself with lots of information. other people seem to suffer very much more than I am but the level has been confirmed by retest so it's obviously correct.
Hi as all others have said, this needs urgent treatment. Other testing could be done but there is enough there to confirm B12 deficiency imho. MMA is specific for B12. Homocysteine is less specific but may also be raised. Folate deficiency and kidney disease also causes raised homocysteine.
I presume GP maybe didn't understand results. Did GP or you order them? I think St Thomas provide advice on results- perhaps GP could contact them?
Take a copy of BCSH guidelines and a companion with you to discuss with GP.
I had similar symptoms to you and I am doing well on injections now - there is hope!
I think taking a companion is excellent advice. Hopefully someone who will take notes and/or has a very good memory. Ask them to first prepare by reading up on what you want to discuss with physician. I advise taking printed material along, organized so you can pull out specific information to show doc during discussion. Your companion could also be helpful with that.
If your doc is uncertain of their own related knowledge they may be on the defensive, and giving them a large stack of material may bring resistance. Many will also automatically refuse to believe that any internet advice can be helpful, so try to make sure sites you show them are as credible as possible, such as those suggested by folks here on this discussion.
It's ridiculous that patients must resort to manipulation of their physicians in order to try and get the care and treatment they need but sometimes it's the only way because they have the "authority" to end the discussion and send you on your way. That said, I believe, as a patient and a retired RN, that you must go in with the attitude that it's your life being affected and you are absolutely entitled to input in decision-making.
Thanks Leilanilea, I've written a letter today and dropped in as it was quicker than an appointment and will see what joy I get from this. I've written links and sites in, but will go ahead and printout, take in, if necessary. Thanks for your support...
Thanks second chance. I've just written a letter to check if it was even my Doc that looked at these results and have included all of this useful info, plus websites, including the BcSH you mentioned, so hoping to hear back soon ( was quicker than waiting for an appointment at this stage as you can't prebook anything).
Really great to hear you are doing so well now thanks...wishing you continued good health
"I am fuming that I've had to find these results via a printout"
Sadly I'm not surprised that you only discovered your MMA result suggested B12 deficiency when you got a copy of the result. I found out long ago that what I was told was "normal" was not always "normal" when I got copies of results. I get copies of all my blood results now and track changes over the years.
Have you got results for a full blood count (FBC) test?
There can be clues on a full blood count test that can indicate whether or not B12 deficiency is a possibility.
High MCV and high MCH can indicate the possibility of B12 deficiency. My experience is that GPs take more notice of high MCV. High MCV and high MCH can indicate the possibility of macrocytosis (enlarged red blood cells). Macrocytosis is sometimes found in people with B12 deficiency (but not always). Low B12 and/or low folate can lead to macrocytosis. Low iron can lead to microcytosis (small red blood cells). If a person has both conditions then their red blood cells may appear to be "normal" size, and problems might be missed.
A blood smear aka blood film might show up both macrocytic and microcytic cells in the same sample in someone with both conditions. It might also show up hypersegmenetd neutrophils in someone with b12 deficiency. A blood film is sometimes done on the NHS but I don't think it is routine for those with suspected B12 deficiency. I think it is available privately.
I suspect that a lot of people who are diagnosed with ME/CFS and Fibromyalgia are suffering some other condition including possible B12 deficiency.
Martyn Hooper, the chair of the PAS (Pernicious Anaemia Society) mentioned on his blog, questions asked in parliament about the misdiagnosis of PA as ME/CFS
Very comprehensive book about B12 deficiency includes chapter on testing for B12 deficiency.
What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency
by Martyn Hooper
This book is up to date with BCSH Cobalamin guidelines.
Martyn Hooper has written several books about PA and B12 deficiency. All available from a popular internet retailer.
"but am thinking I need to ask my Doctor for the IF and parietal test? "
I found the only way to get help was to build up as much evidence as possible and it has taken me many years. Even if some of the tests are not totally reliable, the more evidence a person has the better in my opinion.
I hope your GP knows that a person can still have PA even if IFA (intrinsic factor Antibody) test is negative. The BCSH Cobalamin and Folate guidelines mention Antibody Negative PA. The PAS can probably tell you more about Antibody Negative PA. Martyn Hooper, the chair of the PAS tested negative on the IFA test more than once before testing positive.
UK B12 documents/articles
My understanding is that current UK documents make it clear that patients who are symptomatic for B12 deficiency should be treated even if their B12 blood result is normal range to avoid neurological damage. See links to documents/articles below
Thanks so much for such detailed help and information. I have written letter to Doc and dropped in at this stage, just to get on, but will read all of this properly and really appreciate your help. I really hope you are receiving all of the help you need now...
After many years I have given up on getting a confirmed diagnosis although I personally think there's enough clues in my medical history. If GPs diagnosed purely on symptoms I would have had a diagnosis of b12 deficiency/PA years ago.
It's terrible you have to work so hard at being believed isn't it. Can I ask if you have Martyn Hoopers new book? I have the Could it be B12, and and am wondering if it's a good idea to have both or are they very similar in info please?
I bought three copies of Martyn's book. One for me, one for my GP and one for my haematologist (although he didn't get his, as he already knew absolutely everything about everything).
I went for Martyn's as it was UK-centric and newer than the alternatives.
I had almost the same results from St Thomas' with blood done in Dec. Results in Jan. MMA high, active b12 was 30 and Homocysteine pushing onto the upper level. My GP (in Spain) started me immediately on weekly injections, I've now had 12 and beginning to see some improvement. I'm continuing weekly shots with a review in July. Just saw neurologist last week as I have alot of neurological involvement. Now waiting more bloods, mri of brain and spine, nerve tests etc.
If I were you I would consider a 2nd opinion and get the intrinsic factor etc tests done ASAP before treatment. Remember tho that PA is just one of many causes of b12d.
Thanks Mickyaela, it's really good to hear that you are at last seeing some improvement and really useful to know there is longer term hope if you don't notice immediate improvements. The treatment is different to England then, you have weekly injections. That sounds much more sensible to stay topped up, rather than having bursts and huge gaps in between.
Can I ask what kind of neurological symptoms you are experiencing please? It sounds as if they are being very thorough now, at least.
Have rang the docs again today, and am awaiting a reply, so am hoping to start something soon!
Thanks again and hope you go from strength to strength with your treatment...
The neurological symptoms I have mainly 24/7 dizziness and isolated vertigo attacks. All over constant pins and needles, level depends on day, it reacts to heat badly, Isolated bouts of numbness, shooting pains, burning etc. Chronic headaches, migraines, disorientatation, confusion. memory problems, brain fog.
I'm the UK the nice guidelines say that with neurological symptoms injections should be every other day until mo further improvements, there after every 2 months.
Take a look at the closed facebook group called pernicious anemaia/b12 deficiency. There are some very knowledgeable members and they have helped me alot.
Many thanks Mickyaela for your reply. I'm really sorry to hear you're having such horrible symptoms. I really hope that now your b12 is just starting to help that you soon see some more noticeable relief from them. It must be awful having such persistent dizziness, it's bad enough having spells of it. I find my head doesn't seem to always know where my feet are, and I'm definitely not great at getting about when it's dark! I was diagnosed with inner ear labrynthitis a few years ago, and have put vertigo spells and orientation probs down to that, but maybe there's a crossover and it could improve with a better b12 level. I get some numbness and pins and needles but not regularly. Yep, def with you on the confusion, memory probs and brain fog! My eyes haven't been right since a nasty migraine before Christmas, flashing lights, etc.
But like me, at least we know we have a problem with B12 and it can be responsible for these symptoms so there's hope. When I rang the surgery and was wrongly misinformed, I really despaired for a few days!
Thanks for asking, but no, no news yet! I rang Monday to check my Doc is in this week and had he got the letter.didnt hear back so rang again this morning and was told he did know about it, but they couldn't say when he'd ring back. I contacted the hospital asking what treatment they thought I should be offered. They were brilliant and replied immediately, so I took a copy of mail back to surgery this afternoon! I don't want to appear pushy or impatient, but those results have been there 2 weeks now. So we'll see!
Thanks for the tip about that closed site. Is it ran by Pat...can't think of her last name...if so I asked to join yesterday and was accepted today. She's sent a link to read through, so if that's the one, yes, I will see you on there!
Have you any dates for any of your further investigations yet?
I was diagnosed with nystagmus and vestibular migraine by a Otoneurologist about 14 months after my constant dizziness started but I had had spells sometimes throughout my life. (I'm 50 now!) I currently take 96mg of Serc daily for it but it only stops the full on vertigo attacks and takes the edge off the dizziness abit. Interestingly whist on corticoidsteroids for the 1st time for Inflammatory bowel disease diagnosed Sept last year, the dizziness miraculously disappeared!!!..... But returned when I came of them...
I too can't navigate in the dark and I get nauseous and I have to turn lights on very quick in the house/ use a torch etc. I failed many of the tests the neurologist did last week, whereas 6 years ago when I was there I passed them all. I think all the doctors I very seen recently (GP, gastroenterologist and neurologist) accept that the vestibular migraine diagnosis is incorrect. The neurologist is looking for auto immune diseases, metabolic disorders, genetic stuff as the cause of all my problems including the b12d. My worst symptoms are fatigue, lethargy, muscle aches, dizziness and the nerve stuff. The brain fog etc is much improved generally since on the injections but disorientatation/confusion is still a problem sometimes especially if I get bad with fatigue and dizziness walking..... To get my b12 shot for example!! I don't drive much now.
I did blood tests yesterday but no dates yet for the mri and nerve tests yet or ophthalmologist. It will probably be many months. Very frustrating.
Look me up on the group. I'm Michaela Lloyd. Feel free to private message me anytime.
I hope you start treatment soon. I think you do need to be pushy..... I've got sensation loss now amongst other things... It's your health, not theirs..... Look after yourself. X
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