I am new here but have been trying to figure out what is wrong with me for a couple of years.
I feel like I am going round in circles. I am pretty sure B12 deficiency is causing at least some of my problems (strange sensations in my toes, balance problems, restless legs, infertility) and as I am low in ferritin, folate and Vitamin D, this could account for other symptoms (unrefreshed sleep, breathlessness, heartburn, joint pain etc.)
My B12 levels are ‘normal’ and both MMA and homocysteine test results were OK too. My GP only tested me for MMA and homocysteine after I wrote him a letter directing him to NICE guidelines, so I can’t expect any further help from him.
My GP referred me to a rheumatologist for fibromyalgia, and at the appointment a couple of weeks ago I was given a steroid injection (which hasn’t done anything much) and yet more blood tests (which according to the nurse are all ‘normal’ - not all the results are in yet, and I don’t have a copy of the results to see what the numbers are).
I am not seeing the rheumatologist again until August and I don’t want to waste more time feeling rubbish (I have a very active toddler to look after!)
I am aware that I need to be careful with balancing supplements and find it all a bit confusing. I am scared of needles, but think self injecting might be the way forward.
I would like some advice on which supplement to start with. I have been taking some gentle iron supplements and a Vitamin D oral spray for a few months but I feel no different.
Thanks in advance.
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KittyB52
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Yes of course you can have PA and your B12 can look normal . It can take 3-4 years to deplete your stores of vitamin B12 in your liver . If you inject B12 and that is not the problem , you know that you are not harming yourself . You cannot overdose . Of course your B12 Reading will go up . Don’t forget you need to supplement Vitamin B 9 ( folic acid/folate ) which works in conjunction with B12 .
Sorry just noticed I’m answering to wrong person . FOR kittyB52 !!!
Vitamin D was almost doubled due to the weeks of sunshine we had earlier in the year - not sure it would be that high now.
I'm no doctor but I do believe you should aim for all 29 essential vitamins and minerals. Just one deficiency can wreak havoc. I don't know how many months you should be on it but I would guess 3 or 4 should be fine or while symptoms persist. After that its a good idea to slowly come off the supplements as synthetic supplements are not ideal either, although they are a billion times better than having a deficiency. Someone else here said that B12 should be injected as it takes 2 or 3 years to deplete the body's reserve, assuming you have PA or some other absorption problem. Sublingual B12 can be found for $4, but its an inferior grade. Unfortunately, everything means spending big dollars. Prevention is the best cure for both body and wallet.
Just what are the 29 essential vitamins and minerals to which you refer?
I find it very difficult to agree with you there as blanket advice/recommendation. For one, anyone who already has high iron should avoid iron supplements.
I thought her iron was 16.5, I read the post again and it didn't say anything about her iron being high. I might have misread it. The 29 nutrients I mentions are vitamins a, c, d, e, k, b-complex, and minerals including trace minerals, like selenium and copper. In my post I do say I'm not a doctor and "I do believe". I'm just stating my opinion. I don't believe that having the opinion that I stated about vitamins is outlandish or unconventional. I try to be both humble and pragmatic.
I was pointing out that blanket supplementation can be wrong - in this person's case, iron probably does need supplementation. But the same issues arise with many supplements. I guess that for many, modest levels of supplementation are likely to be handled reasonably OK even if not needed or already relatively high.
I thought you had a specific list of 29 nutrients?
Right. My belief is that if you are low in one nutrient you will likely be low in another. I'm not aware of there being a broad test for all nutrients. Yes, occasional supplementation in moderation is good. Even better, having a very healthy and nutritious diet. The worst that can happen is: you have a nutrient deficiency, you feel bad, you go to the doctor, doctor does tests on you, everything is OK, so he says you have a panic attack. Here are the nutrients. 28 are supplemented. The last one, sodium, is generally not supplemented unless you are athlete.
'My belief is that if you are low in one nutrient you will likely be low in another'
Sorry, but your belief does not make it so...as helvella points out, blanket supplementation can be wrong...and positively harmful for some (I.e. supplementing - or over supplementing- with B6 can cause neuro toxicity and, potentially, irreversible neurolgical damage).
Not everyone who has PA or absorption problems need to supplement with what you refer to as the '29 nutrients'.
Nothing wrong with having an opinion...but when this is presented to others as 'factual advice' (as yours is), then for the sake of accuracy and the benefit of those reading, please prepare to be challenged!
I thought that if absorption was possibly an issue, taking tablets or sublingual supplements wouldn’t work? I also thought that if you do have such a problem which required injections, you would likely need to be on them for life?
If you have PA you will always need injections. More research is needed on those people that inject everyday and can't go 3 days without an injection. I don't know why that happens. Absorption problems generally refer to intake at the intestinal level. It could also be at the celular level. Sublinguals only work if malabsorption is located at the intestinal level.
'Sublinguals only work if malabsorption is located at at the intestinal level'
Sorry but this statement is not correct.
For clarification, sublinguals either work for you or they don't...they do for some - but not for others. The only way to know is to try them...but they most often don't work for those with PA.
Hi KittyB52. If PA or another absorption issue the reason for your B12 deficiency then you're correct...B12 injections are required for life.
Sublinguals or oral supplements work for some people, but not for others...but oral / sublingual B12 is not the recommended treatment for B12 deficiency in the UK. The recommended treatment is B12 injections.
sorry, short of time right now but please ask if you need links to evidence or more explanation 😉😀.
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Hi PAS friends. Please help with my diagnosis
Active B12 results finally here 27(25-108) MMA 708 (0-280) GP said no action, so just picked up printout and found this. Any advice please?
