Hello, I wondered whether there's anyone out there with knowledge of B12 deficiency?
I've been feeling rubbish with loads of strange symptoms for at least a couple of years.
My ferritin is always lowish - hovering around 15-18 ug/L.
My folate was 11 ug/L in January, 10 in June and now 9.
My B12 was 166 ug/L in January, 161 in June and now 122.
The above is despite taking fairly high levels of supplements since January.
My GP called me last night about my B12 level (he's marked everything else as normal) and said I need to have 5 loading doses of B12 over the next few weeks, then retest B12 in 6 months to see whether it has fallen again.
I tested negative for Intrinsic Factor in June, so he said I don't have pernicious anemia - even though the blood report itself says that a negative IF doesn't rule out PA. I've had a positive ANA result previously, but GP hasn't flagged anything else as a concern. I've noticed that a lot of my results are borderline, just within range.
Should I push for referral to a haematologist or is my GP doing what he should be doing? Would treatment be the same whether I have PA or not?
Many thanks to anyone who gets through this
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BlackInk
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Treatment is the same - ie 6 loading shots, then follow up doses, regardless of the reason B12 is low. However, waiting 6 months without any more B12 could mean your symptoms get worse again, and it's not an experiment I'd really want to make.
You should also take some folic acid - just the OTC ones are fine - once you've started the jabs.
In order to get B12 functioning optimally I was advised to get ferritin levels ideally to c100 (range 13-150) and folate to be ideally top 1/3 of range (range 3.90 - 26.80) = 15.2. This was not medical advice, but a trusted forum advisor. I struggle to do this sometimes, in spite of supplements and consciously ferritin&folate-rich diet, especially the ferritin levels. I also have a struggle with vitamin D levels despite supplements on prescription and have osteoporosis of the spine. "Normal" is relative, and low-range levels in conjunction with B12 deficiency worth looking at, because B12 doesn't work independently in the body.
"Strange" is also relative- and you don't say what "strange symptoms" you are experiencing. If you have neurological symptoms, I would certainly tell GP. Don't deteriorate to prove a point to him/her regarding treatment.
I would start now recording your symptoms: frequency and severity. This will help GP see what effects B12 is having, and more importantly, what a lack of B12 is doing to you.
If I was you, I would look at the Pernicious Anaemia Society website and think about joining if you are not already a member. Also have a read of Martyn Hooper's book about Pernicious Anaemia/B12 deficiency, if you can get a copy. It will help you to understand your condition better. I found his own story really helpful to me, as I had been in denial about myself.
I can't really see how I could get my ferritin and folate levels up as I've been taking over the RDA of these (and B vitamins) and eating a decent diet for years.
Do you have PA? How was your osteoporosis diagnosed? I also have a very painful, stiff lower back, generally stiff and weak joints everywhere, and confirmed osteo-arthritis in my fingers. My periods suddenly stopped two years ago at age 43 and I've tried HRT patches but no improvement in symptoms.
I've mentioned possibly neurological symptoms to doctors on various occasions. They come and go, worse sometimes than others, but include - muscle twitches, sore patches of skin, tingling and numbness in hands, feet and face/head, poor concentration and memory, inability to think... honestly, I feel about 145.
I take a good multivitamin&mineral supplement, plus extra folate, plus 2 vitamin D tablets (prescribed) daily and Risedronate once a week for osteoporosis. I've been told to walk if I want to keep the osteoporosis at bay. So I do.. a lot. Even when it used to hurt because I was so stiff and aching: hips, knees, feet and muscles very weak.
I don't know what I've got. I was diagnosed with B12 deficiency in February 2016, then with Functional B12 deficiency by October 2016 (because my B12 levels were then over 2000, but MMA still raised)...... and still do not have a reason. I self-inject every other day to keep symptoms to a manageable level, which helped me get back to work for 1 then lately 2 days a week.
It hasn't gone away, so can't be because I'm a vegetarian (of nearly 40 years), but I'm guessing that for a long while, they were inclined to think this was the cause.
I'm certainly a lot better than I was, but not as I was before that, which is why I am not yet back to full-time employment. I haven't given up, and believe there is more improvement yet to be had. It's slow (very).
I think I have had all the tests and professional help that can be had. Gastroenterologists (3 of them) have decided to sign me off as having IBS (daily diarrhoea for over 3 years) but I see this as just one of my more inconvenient symptoms- but certainly not my worst. The worst one now, for me, is poor cognitive ability (not great in a teacher) and lack of ability to concentrate or remember (can't "do" reading books- also not great in a teacher). They are well aware of my other symptoms and the fact that IBS does not cover them. In fact IBS is not even a diagnosis, but merely a "set of symptoms" (= syndrome), so still in limbo really.
Awaiting one more appointment in around May next year, with an Inherited Metabolics Diseases consultant, who will have looked at my DNA, and will hopefully have some answers.
Keep trying, keep going, be patient. And very very stubborn.
Neurological symptoms have a different treatment regime- look at the Pinned Posts on the top right-hand side of this screen. Use only medical research with GPs or consultants to back up your case.
Keep talking to people on here. They've been you. Hope. x
Thanks Cherylclaire - I've also been vegetarian for ages (30 years or so) but am sure my diet should be adequate. I take a good multi vitamin daily and alternate between a liquid iron/B vitamin and a high-strength B12 capsule each day, so pretty similar to you.
I work full time and have two young children. I manage to do it all, but only just and not very well at all. Put on a brave face in public then crumble when I step through the door at home. I think I'm going to take a letter to my GP when I go for my first B12 injection next week and hand it over to the nurse doing the injections...
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