Pernicious Anaemia Society
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Vit d and b12 results help needed

Hi I’m 34 male. Had 10 weeks off work been working 12hours a day some times more self employed Monday to Saturday and Sunday is Day with the kids

Over a period of time it felt like was having to drag myself out of bed everyday get the kids to school then off to work sometimes missing breakfasts and or lunches maybe even tea at times

Started to become un interested in a lot of things summer time is full of fun camping car shows jet skiing etc winter time is a bad time for me as it’s work work work nothing else really

So moods started, lack of interest in family the house customers friends etc

Also had a lot on at home extension kids family stuff etc found myself awake at night hard to sleep having a beer or two too help waking up at 3 in the morning nodding back off around 5

One day at work I had a bad shaking in right hand could not write neat at all head and I just couldn’t think straight a massive haze or brain fog had around two weeks of insomnia just could not switch off lots of thoughts brain doing over time

Went to the drs they tried to give anti depressants which I refused and after spending near 4 weeks in bed I’m up and about but no way near as energetic as I was here’s some symptoms and my blood test results I asked for as I came across this site and wondered what your thoughts are

Symptoms

Lack of energy, no interest in stuff I normally like

Hard to talk to ppl forgetful short term memory

Easily agitated emotional pins and needles easy

Headaches aching of joints ringing in ears

Bad stomachs

Still slight shake in hand when holding still

Blood results are

VITAMIN D 60 nmol/L. RANGE 50.00-100.00nmol/L

SERUM B12 347 ng/L RANGE 180.00 - 910.00ng/L

Any thoughts please thanks in advance

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Hi there, I’m no expert but my SERUM B12 is 271ng/L and i was told it was on the low normal side, although it’s within normal range someone on this site said experts believe the reference ranges in the UK should be be higher starting at 500ng/L other countries such as Japan their reference ranges start @ 500ng/L - 900ng/L so you could well be borderline deficient

and could well be causing your symptoms silmilar to yours (my husband is B12 deficient)

reference range for your vitamin D is low too in my area of the UK reference ranges start at 75 nmol/L -250 nmol/L so much confusion with reference ranges your doctors should treat your symptoms did you get your folate checked.

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Nope.

Nobody says the normal range should start at 500 ng/L. That would make about 85% of the population deficient.

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The UK uses a normal range - determined by statistics.

There has been some talk in the US and it may possibly already be practice in some countries such as Japan to use 'reference ranges' which are basically annotated ranges within the statistically normal range providing more detailed guidance on whether a test result could be significant or not.

It is possible for an individual to be deficient well into the normal range, but it gets less likely that B12 is the problem the further you get into the range (leaving aside potential issues if over-supplementation is going on)

The big problem is that serum B12 is measuring the amount in your blood as a proxy measure to see if everything is okay. Its reasonably good as a measure of how well you are absorbing B12 from your food but it doesn't tell you anything about what is happening with B12 getting from your blood to your cells, nor does it tell you how efficiently your cells are using B12 ... and things can go wrong at all three points.

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I agree and yes I have read a little on active B12 blood tests tell you more. I hope you get some answers and get whatever treatment you need Ste143

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whilst active B12 is a more accurate test - it is still only showing what is actually happening in your blood so has its limitations as well

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Really it’s very complicated but very interesting too. I would love to know more factual information regarding guidelines in the UK with my husband being treated with b12 injections I’m also interested in testing folate and UK guidelines

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What would you recommend if I was to approach the dr for more blood tests what tests should I be asking for?

Thanks Ste

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in terms of B12 would be MMA/homocysteine, also full blood count - and possibly iron

in terms of absorption - IFA, Coeliacs

at the very least a follow up of B12 in a couple of months to see if levels have fallen significantly in that time.

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Thanks for your reply think I’m going to book a MMA test private

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Hi

Many thanks for your reply

My folate level is

Serum folate 7.62 ng/ml. >5.40ng/mL

hope you can shed some light on the results

Thanks 🙏

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I've 100% seen the Japan range referenced in numerous articles as >500. You're not imagining it, lol! 😉

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I thought it was a bit funny that I had picked the only reading material with this information regarding reference ranges so thank you x

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I'm not quite sure what grounds there are to refute it. Perhaps we'll get a more detailed explanation at some point 😊

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A level of 347 ng/L is a long way into the normal range, so it would be difficult to persuade a doctor that Vitamin B12 was the reason behind your symptoms.

You could try some sublingual B12 from Amazon to see if hat does any good.

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By having a MMA blood test would that help further ?

Thanks

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Japan do I’ve read up on it and yes it is hard to convince a doctor to treat it.

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Japan don’t.

There is an oft-repeated, never clarified, quote from one ancient paper.

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Yep. Definitely seen this too. Except I interpreted it as reading that Japan had set their levels according to what was optimal for the human body rather than what was normal statistically in the population. That they regard anything below this as deficient for optimal functioning. Two very different things. It's not beyond the realms of possibility that large swathes of the population are "sub optimal" in a vitamin without they or medical science regognising it/realising it. Deficient even. We need only look at Vitamin D for an example of that.

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About 90% of the population will have normal blood levels below 500. That 60 million people.

If you want to treat all of them at a frequency of one injection every two months then that will be 360 million jabs per year, or one million per day if you jab on weekends.

There are about 9000 GP practices in the UK, so that would be more than 100 jabs each per day. That’s one nurse working 8 hours a day, 7 days a week, doing one jab every 5 minutes.

Is it really worth having an extra 10,000 nurses being paid to do nothing but inject B12?

To say that everybody below 500 should be treated is as nonsensical as saying that nobody below 200 should be treated. Don’t treat the numbers, treat the symptoms.

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Don't think anyone's really suggested that everyone with a level under 500 should receive jabs on the NHS. (?) There is a spectrum. Deficient, normal, optimal etc. Opinions will differ as to the numbers that represent each point on that spectrum and who's to say which range is right? One person can rub along quite nicely on 347 ("a long way into the normal range") another will be highly symptomatic. For them... THAT'S deficient. So yes...don't treat the numbers, treat the symptoms. But I also think the better distinction is between deficient....and optimal. As individuals we should aim for optimal. Thats our responsibility. When we become ill as a result of deficiency THAT'S where the NHS comes in. (So no I wouldn't have an additional 10,000 nurses purely employed to carry out b12 jabs. But to be fair...if they were educated in, and focused on, identifying and treating vitamin and mineral deficiencies early, they'd save the NHS a helluva lot of money dealing with the consequences of untreated deficiencies...and maybe all those poor souls who have had to give up work due to permanent nerve damage would still be contributing to the tax kitty too. So, come to think of it...you may be onto something 🤔) I loathe the use of the term normal. Ugh. Sick of hearing it tbh. (It's "normal" for women to be iron deficient....Doesn't mean it doesn't make you feel like crap and put your health at risk).

You can be deficient in b12 for years and be asymptomatic. So who's to say the "otherwise healthy individuals" on whom "normal " ranges are based aren't actually at an early stage of deficiency and just not experiencing symptoms yet? We all know the symptoms come on gradually over a period of years. One could argue the whole basis on which the current levels are set is inherently flawed. So who can say if the Japanese raised their levels to 500 or not...and if they did whether they are right or not. It doesn't ACTUALLY matter does it? (Although 500 is relevant in that it is the threshold for the onset of neurological damage) If someone isn't getting enough, then they're not getting enough.

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Don't think anyone's really suggested that everyone with a level under 500 should receive jabs on the NHS.

If only that were true.

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Yes fbirder I'm sure at SOME point SOMEONE has suggested it, lol. But as you well know I was referring to THIS thread in which I can't see any evidence of that specific suggestion. But please...feel free to point out where someone has said, on this thread, that the NHS needs to employ 10k nurses just to give out b12 shots all day to anyone under 500. 👍(apart from you. And as it goes...you may be onto something if you do a bit more maths😊👍)

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You, yourself, said “I've 100% seen the Japan range referenced in numerous articles as >500. ”. Implying that anything below 500 was treated as deficient.

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You've said it right there yourself. All I said was I'd seen that figure referenced in articles too. Backing up the original commenter that it was in fact "a thing" and she had remembered correctly. If those articles are correct then anything <500 is regarded as deficient.... in JAPAN 😩 Nothing was implied . Never said anything about B12 jabs on the NHS for all. Think you may have taken quite a leap in your interpretation tbh.

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My husbands nurse taught me how to inject him in the muscle

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You might be right as I said I’m no expert just going on what I have read with my husband being deficient at reference range of 426 still he’s getting treated.

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Look what you've got me into GillyGangGong ☝😩😅

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🙈I’m sure you didn’t imply anything of the sort Portia1974

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also I notice the reference ranges for B12 are different to my part of the country? reference ranges start at <200 to be deficient where as in your area they start at 180 it’s insane.

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Different areas use different labs using different methods using different machines. That’s why you get different ranges.

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Aye up buddy.

You could have wrote my medical history as its pretty much the same as me.

Diagnosed as PA in January 2018. For 4 years ive felt like you. And they kept saying all is well my b12 4 years ago was 250 and they said all is well. B*****ks was it. Dec 2017 was admitted to KGH and they said all was well and sent me home. A doctor at the Corby Clinic said not happy with bloods. Did B12 and it came back 98. Straight on to b12 loading doses. Then every 3 months, and as wveryone on here will tell you thats not enough. I was given auto immune tests and found to be PA. You have all the symptoms that I had right down to the extension on the house. Thought it was getting old as im 56. But Ive always kept myself fit, I eat well. I was getting angry tired nasty a complete jerk infact. Mood swings you name it..

I was given 6 loading doses and still felt crap and I now order b12 from Germany and inject myself every week and I feel reborn. Its taken about 5 months of b12 injetions every week to get to this point. For a long time I felf crap. Take charge and demand an Auto immuine test to ensure you are not PA as you B12 is low and dont listen to the crap they come out with Its ok thats normal to be that level. Load of tosh. If need be go private.

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Hi Allen

Thanks for your reply I’m going to go down the private route I think hopefully a MMA will show something

I feel the depression is brought on by something else and not by my hectic life at the minute

Cheers

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Hello, I feel sympathy for you as your history sounds similar to mine I too was working long hours and had 5 months off work spent mostly in bed totally exhausted. I was disagnosed with hypothyroidism and CFS. Move on some years and a gastroenterologist to whom I was referred for anaemia diagnosed Pernicious Anaemia, I have a family history of an aunt with this. I now think that I had B12 difficiency all along but untreated. Recently I had a bad period of exhaustion lasting several months ( have constantly requested more frequent injections to no avail) last blood test indicated low Vit D, which I believe can also make for extreme tiredness. To cut a long story short, I now self-inject and that together with an increase in Vit D and my thyroid dose increased I am back in the land of the living. So it is complicated,often, to find a solution but you are on the right track looking for help from the knowledgeable people on his forum. I wish you well soon.

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Beers and pizza every day can cause malabsorption , but serum levels can all show normal. Ive cut out all the beer and take vitamins and feel much better after 5 months.

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I thought I had a wheat issue due to foods and bad stomachs feeling like I’d not slept enough 18months before hand when approaching the dr he shook his head and said take anti histamines prescribing me cetrizine hydrochloride tbf my hay fever was bad. bad triggers was if I ate lasagne or spaghetti bolaignaise I could feel my wind pipe closing up and had to be sick until every last drop was out of me and then sleep it off I went to see a dietician and I went gluten free also showed I didn’t get on well with tomatoes peppers and potatoes too

So aswell as all the stress that I put at the top of the post I cut a lot of foods out almost having to cook meals from scratch but after a 12hour plus day cooking was not a priority and frustration I suppose so very easy to not make a meal at times and sometimes consisted of plain rice and beef or chicken

Tbh I felt an improvement cutting the wheat out and now this has slowly crept up on me and wiped me out

I think I’m going to go for a MMA TEST unless anybody else can help with maybe another test?

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A GP can only help so far - I saw two and a haematologist and finally went to a naturopath (not sure why it took me so long) and she's the only one who has made a difference to me. Sure, the others tested me for everything - but then didn't know what to do with the results once they received them. Find a good naturopath - they'll be able to help with foods and vitamins. Even better if your GP will work with the naturopath.

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The basics of fruits and green veggies helped my stomach be less bloated. Ginger\turmeric blended steeped to 155 F , then honey to taste

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Hi Ste143 sorry to hear you are struggling. Its really frustrating to know that something is not right with yourself but when you dont know what exactly is up/ wrong, and all you get is " your numbers are satisfactory or within range" it doesnt help!

Sorry if someone has already mentioned this but have you had your thyroid checked??

Even when I fell below the ref range for both vit D and b12, all my GP said was he wasnt worried and it wasnt that low...??? Took a few months of standing firm before I finally got my jabs.

Best advice is to write down all your symptoms make a Double app then that way you cant get fobbed off with the dont have time for all this.

Ask on here any questions or just for advice/ support. Everyone here is also fighting their own fight but are generous and kind with their time/ help and advice.

Take care of yourself.

All the best

PJ

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Hi Ste143

Your history sounds remarkably similar to mine. I've managed to wrestle myself an app at haematology where I'm hoping they'll be more receptive. I've done a fair bit of research of late so here's my tuppence worth. without regard to your tests, BMJ Best Practice states vitamin D levels should be >75 and in an ideal "optimal" world we should be aiming for levels of 100-150. It seems to me that NHS "normal" ranges frequently have very little to do with optimal health and more to do with " how low can you go before we have to act". So even though your lab has set the range at 50, showing your "60" result to be normal, it's still a way off optimal. Personally I'd be supplementing with VitD. At least for a few weeks. The upper safe limit (if youre not deficient) is 4000iu per day but I'd titrate that dose down to 2000iu after a few weeks as sustained high dose can lead to toxicity (=not good!). See if that helps? I'm not medically trained obvs. Just personal experience and mildly obsessive research. Weirdly I saw/felt more improvement when my D levels were sorted than when I had B12 levels (allegedly) sorted. Talking of which, largely, serum levels are meaningless if you're experiencing clear symptoms. Which it sounds like you are. The ranges themselves are another matter as there's much to suggest they are not reflective of healthy levels. Personally, I'd aim for an MMA or Homocysteine test. High levels of this mean the b12 is not being used in your cells and you have a functional b12 deficiency. My gp couldn't do that test as there is some kind of time limit between the sample being taken and it needing to be at the lab before it becomes unuseable. Hence my referall to haematology. HoloTC is another test...essentially this tests the "active " b12 in your blood as the test you had can contain up to 80% inactive (read useless) B12. So while it won't tell you what's going on at a cellular level it may be another route to getting a diagnosis if that makes sense?

Good luck & hope you get some answers!

Hang in there and don't let the doc fob you off!

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Also, sure someone will have mentioned this....but if your iron or folate levels are low, you could have perfect serum b12 but it would struggle to get to your cells (functional b12 deficiency) and just sit in you blood twiddling its thumbs. Iron and folate levels need to be in good standing for b12 to do its thing. Apparently. Not a doc. Just read alot.

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b12 shouldn't show so many symptoms. see endocrinologist. get full metabolic and hormone panel. pay attention to cortisol, testosterone, and estradiol. 34 y/o male...could be low T. described symptoms sound hormonal. more information required.

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I’ve since gone private and ordered blood tests via medichecks had the bloods drawn on Monday at a local nhs hospital so awaiting results fingers crossed

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