After many visits to the doctors over past couple years, I have had no improvement or definitive answer. Alot of my symptoms point to B12 deficiency altho doctors keep telling me 'I am fine and my B12 is within range' but I know how I feel!
I have been taking supplements for over a year now with no improvements so need to do something else!
I have seen alot of posts about SI, I was wondering how people know how much need to take, how often ect? And how reliable the stocks ect are?
Thank you all for your help and information 😊
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Sillysteph
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I am going to make an appointment with doctor next week as I have had bad dizzy spells and tingling this week. I have been taking multivitamins, but swapped to b12 tablets too. It does not seem to have helped yet. I am planning to write down symptoms to take with me to the appointment and am going to write a letter if all else fails. Thank you for your help 😊
Only just saw your posts, sorry. I know it seems like extra trouble, but if you haven't got copies of all your old results yet (I see Nackapan suggested it in your first post) it really is a good idea and you are perfectly entitled to have them. Once you have them, post them - no-one can really tell you much without them, be it B12, folate, thyroid, iron, Vit D etc. There are lots of things that you can do to help yourself once you have better information. Bear in mind that having taken B12 supplements, any new B12 blood test will be skewed, so all the more important to have copies of pre-supplementation results. Best wishes
Hello, My bloods do not appear to show anything extreme with my B12. My original bloods were 272 (range 211 - 900) and my new bloods are 332 (211 - 900) with the new supplements.
In fact, my bloods for most things were okay so back to the drawing board I guess. (checked thyroid, iron, vit D and folate all within range)
Please, I beg you, do some more reading and put your full results with reference ranges on a forum, probably best if here or thyroid where there are people with considerable experience to give you some input. 'Within range' means nothing in the context of enough for *you* to be healthy. Those B12 results are too low in conjunction with your symptoms in my opinion. You do not need extreme results. It is possible to have neurological symptoms at 550. My family has a long history of B12D or Pernicious Anaemia and we generally feel pretty awful if not well above mid range. My dad needs to be closer to 800. Personally I also felt hugely better once I started a small dose (400mcg) of methylfolate which I didn't get with normal dietary folate or folic acid supplements although many are ok taking it that way. Where you are in the range can matter a good deal so don't give up on these bloods and what they can tell you just yet. It took me 20 years of increasing neuro symptoms to start to make improvements, please don't make the mistakes I did. (Martyn Hooper's 'What You Need To Know about Pernicious Anaemia & Vitamin B12 Deficiency' is a very good place to begin). The fact that your B12 has only risen such a small amount even with a supplement makes me think that either it is much too low a dose or that you are not absorbing well. Thanks for letting me hassle you - I worry, as B12 is not one to ignore x PS one more thought - have you had any nitrous oxide usage, eg dentists or childbirth or recreational
Thank you so much for your help. I have been trying to push this with my doctor as I have been having tingling hand and feet, clumsiness, brain fog ect and I know these can be symptoms of lots of different things.I have seen a nuero who said migraine, doctors are pushing the migraines. I am currently waiting for ENT and Echo because of long term Dizziness spells. At the moment, I am going to go for these and see what doctor says after. Both doctors who have run B12 bloods have told me not to worry as it isn't that. In the past year, I have had radiating heart burn, h pyori infections abdominal issues. Crohns runs through my family but will not look into that either. I get that there is alot going on but doctors seem so dismissive of everything! Thank you again, I will have a look into that. I have had that before for both dentist usage and childbirth?
Hi . Thanks for the results - sorry I'm no expert, I was hoping more for a full iron panel, thyroid function, Vit D. A few thoughts though - as you say your symptoms could be caused by a few things and absolutely go for the tests that are suggested. Migraines can also be a symptom of low B12 neurologyadvisor.com/adviso... as can the dizziness ( mine improved with the B12 and methylfolate so not sure which did the trick!). It could be that you have something like POTS of course.
But the big flashing lights in your message (to me) are H Pylori, Crohns and Nitrous Oxide. H Pylori can cause B12 deficiency and if considerable damage has been done you may need injections rather than oral, although it might be worth trying something like Better You Boost spray to see if you absorb that any better (that worked for Dad). b12deficiency.info/blog/tag...
Crohns can affect your ability to absorb but you will see here pubmed.ncbi.nlm.nih.gov/262... that a normal serum test may may not help with diagnosis. The Holo test that they mention measures active B12 whereas serum measures both active and inactive - which leads neatly to the gas and air issue. Nitrous inactivates B12 in the body - can be by as much as 60% - so if you have a good B12 rich diet and are absorbing well, nice and healthy with no underlying B12 deficiency, you may top your supply back up before ever realising it was an issue. But, the big but, if you are already a bit low and struggling to absorb or vegan/vegetarian, it can wipe out most of your store and you can have neuro symptoms (even quite severe in the odd case) rather fast, and it can take a long time to replenish your body's requirements ncbi.nlm.nih.gov/pmc/articl... and pubmed.ncbi.nlm.nih.gov/825.... So if you had more than one lot a bit close together with H Pylori on top, the chances are even the B12 currently showing as serum may not be available to you, if that makes sense. You may be able to get someone to do an active B12 test, although I suspect that the result will again be skewed by having taken B12 supplements. Not sure how long you would need to be off B12 to get an accurate result. The NHS does mention the difficulty of active v inactive but also states that testing is not widely available. I did my own, through Medichecks medichecks.com/products/vit... which I see says 2 weeks off B12 for testing, if you can stand that long, or have the funds available. Might be worth some more thought - you will know timings of when you had everything, so I'd write it down so you get a feel for how long you had to 'recover' in between and when you started to notice symptoms, then maybe go back to your GP. Pernicious Anaemia is more common in those with Crohns, and Coeliac commonly underlies autoimmunity (AI). Although AIs are not directly inherited they are 'familial' and once the underlying process has started, any AI condition may occur (which is why we tend to get more than one, as you don't realise fast enough to try to slow it all down). Might be worth getting checked for Coeliac (testing is a bit hit and miss - doesn't catch everyone that has it) and considering trying an anti-inflammatory autoimmune diet as a trial. (Gluten and dairy were big triggers for me but I know that many are fine with them. I had already given up gluten so didn't complete the testing in time and chose not to go back onto gluten to be tested as it was so clearly causing me symptoms - 40 years of acne vanished, in my case - gluten doesn't only affect gut, can be neuro or skin)
That is very useful thank you very much 😊 I think I am going to give the active b12 test a go, tbh the supplement do not seem to be doing anything anyway! Worst that happens is that comes back fine, but at least I will have some answers. Coeliac is not a bad idea, it also runs in the family and I do find issues with excess of bread ect. I mean was a long time period between nitrous oxide and h pyori infection (well when it was picked up) but when I had the infection, they pumped me full of omeprezole for months, that is when I remember feeling dizzy, tingling and drained ect. I will bring this up with my doctor as it is a good point! It is just frustrating, I have a little one to run around after, full time job to hold down and feel like absolute burden on partner who is having to pick up slack. Fingers crossed for some answers soon ey? but you have given me a lot to think about, thank you 😊
My pleasure! Omeprazole reduces your ability to absorb B12 and other nutrients and vitamins. If you were already low in B12 due to the nitrous and struggling to replace it and then had omeprazole that could explain a lot. If you have coeliac in the family you should all be tested as soon as possible to reduce the likelihood of it being the extra 'straw' that tips you into other autoimmunity. Bear in mind that unless the damage is considerable in the gut it may well miss it and of course you could still be non-coeliac gluten sensitive, which some children of coeliac parents are. I am now grain free as I went normal gluten free, which has lots of corn and cornstarch, rice and potato starch, and found I was reacting to the lot. One other thing that you may benefit from is more magnesium - many of us are low and it is very useful stuff (and omeprazole and other PPIs particularly hit your magnesium levels). I use the Better You oil spray to avoid digestion issues. My very best wishes to you, I really hope you will soon be feeling much more like you x
Thank you so much for your help. I went ahead and had the medicheck active b12 test done. Results have shown I am the low end and doctor has advised MMA test. Now to try and convince my doctor, wish me luck 😉
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but you have given me a lot to think about, thank you 😊
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