Dear all, I've just joined your community as I've had a low b12 score on a recent private blood test and I want more information before I go to the doctor. My scores for vitamins are: Vitamin B12 L 146 Deficient <140 pmol/L Insufficient 140 - 250 Consider reducing dose >725, Serum Folate 31.06 10.4 - 42.4 nmol/L.
I have lots of the symptoms on the PA website and also a high TSH on the same test so something is up!
I have been struggling really badly with diet following a traumatic time in hospital over a year ago for some still unexplained "allergic" like reaction possibly linked to asthma medication and came out unable to tolerate food that I once was fine with. I appear to be able to manage on a low salicylate, low amine, no colours / additives or sulphites, gluten and dairy free diet (which you can imagine is not easy!). If I go over my salicylate level even to the extent of eating a peeled golden delicious apple I have urticaria, gastric symptoms and breathing difficulties. Research on the internet has suggested that thyroid problems may be linked and thyroxine may help but my GP is reluctant to prescribe until my TSH is over 10 (currently TSH H 7.89 range 0.27 - 4.20 IU/L). I really need to be able to expand the diet but can't without being ill and now it seems I have low B12 which is why I feel so rough. Does anyone know where I can find out the details of the contents of commonly used B12 supplements used in uk as I don't want to precipitate an attack due to fillers and colours or preservatives and need to know the make up to help my doctor find tablets / injections that may suit. Anyone else know anything about these above problems which have stumped my GP, nice scholarly articles welcome!
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bd79og
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you got your test done with the same people i did! i got 166 on the vitamin b12 test and im in the same boat as you basically. My plan is to try get the doctors to give me a trial of injections and see if it helps, thats all i can think of tbh
EDIT: My Serum Folate was 11.02 10.4 - 42.4 nmol/L
Note: B12D is not a blood disorder but some types of anaemia can be caused by B12D ... there are also some types of anaemia that are linked to thyroid.
If your folate is high then this is likely to mask any anaemia.
Needs to be treated promptly as some damage may become irreversible if left.
However, even once treatment starts there can be a bucket load of problems as standards for treatment don't suit everyone.
(If truth be told I have yet to come across anyone who actually finds the UK standard suits them.)
Hope the thyroid community can be of some help on the thyroid side - notice that you have also posted there.
Have you had a referral to a gastro to look at what is happening with your food problems - does sound as if there is something major going on in the gut - and if that is the case then then you probably need to be on injections for the rest of your life. This is going to be particularly true if something has happened to your ileum which is where most of your B12 is absorbed.
In terms of supplements/alternatives to injections - people use a range of different types - including sublingual tablets, sublingual sprays, nasal spray (my favourite) and skin patches, but people respond differently to each ... and also respond differently to the 4 forms of b12 that are available - cyano, hydroxo, methyl and adenosyl.
You can get dried forms of methyl that can be mixed with saline to produce injectible B12 which would get round any problems of additives if that is a problem when you look at the contents of injections - generally they do have additives used as stabilisers.
Thanks for this it is a useful starting point. I've been having a lot of trouble getting help on the nhs, hence posting here. I waited several months to see nhs dieticians who have simply said that they can not offer the specialized service that I need! I did have a positive blood test for coeliac 5 years ago and a negative biopsy and it seems that gluten may be the route of some of the trouble. I will ask to see a gastrologist but don't hold much hope. Basically I am in a bit of a catch 20 where I need to improve my diet but can't with out being ill but won't be able to improve my tolerance without diet improvements!!
In some instances changing to a coeliac free diet can help with a B12 absorption problem but not always.
Actually think you are far from alone in terms of not being able to get the help you need. NHS far to focused on tests and treating on basis of test results and nobody seems to be able to focus on person anymore.
My experiences were never positive going back 50 years so don't think it is a new thing.
well I've just taken the results to my GP to talk about it. As far as they are concerned the thyroid is normal and the B12 is within the range which they see all the time and don't treat but they are prepared to consider retesting the B12 to see if it is within their very low numbers for treatment (they need a score of 120 or lower) and I have a referral to a gastro which will probably take 3 months. They will retest the thyroid (TSH only) in 3 months. She didn't want to even look at my many symptoms (I got 59 on the B12 deficiency checklist on the pa website) and I left in a very distressed state with a question as to whether she needs to look at giving me some advice as to how to better manage my stress. This was despite the fact that I told her my biggest stress was feeling so ill and not being able to eat anything! BAH!!!! Can't stop crying now it feels like nobody cares.... Please does anyone have any experience getting treatment in Scotland? I feel they are blaming my diet for my health issues despite my saying I can't expand it without getting ill.
Very common for the stress to be the focus rather than looking for an underlying cause .... and not being able to cope with stress is a classic symptom of b12D.
Scotland does seem to throw up its own issues - though there was some discussion in the scottish parliament on how bad treatment for B12D is but it ended up with basically abrogating responsibilty to the doctors.
I suspect that you may have to consider trialing and treating yourself - not an ideal option but in the face of such pigheaded ignorance it may be the only way to go.
Have you had your thyroid peroxidase antibodies checked. If you have elevated levels of TPO and TSH over 5 you should be treated for underactive thyroid, hashimoto's. I managed to persuade my doctor to treat at 5.79 last December but as soon as TSH went below 5 he refused to increase levothyroxine. He would not refer me to endocrinologist so I saw one privately. Now taking NDT and some levothyroxine as not good on NDT on its own and TSH now around bottom of range. I am also low in B12 and have started to self inject as cannot last on NHS injections. I also have problems with food, have lost 2 1/2 stone since Christmas without trying and have developed all sorts of allergies to chemicals, perfumes, foods etc. I have also gone gluten and dairy free and have trouble with sulphites. Also found to have low stomach acid, endoscopy clear so saw a private nutritionist. At last I seemed to have stopped losing weight in the last 3 weeks since regularly injecting with B12 and sorting out stomach acid. I believe you need B12 and thyroid treatment.
Yes I've had my thyroid antibodies checked and although they are not zero they are not significantly raised, Immunology
Anti-Thyroidperoxidase abs 9.4 <34 kIU/L
Anti-Thyroglobulin Abs 15.3 <115 kU/L.
I have also lost weight since last year about 2 stone in total but not much since March and have managed to stabilise my asthma (mostly) mainly by removing diary foods and gluten and being very, very careful with my diet. If I eat the wrong high in salicylate potatoes or rice or more than one slice of carrot or a whole golden delicious apple (without skin) I get a "reaction" which means flushing, wheezing, bloated painful tummy and headache, it can take about a fortnight to recover from one "mistake". Also if my meat is not really fresh I get the same or with eggs which have not been oven baked. I am really really sensitive to fermented foods and can not even take vitamin C powder which has been made from fermented corn or drink rice milk made from fermented rice. I am worried that B12 supplements are made from fermented bacteria and I will have a huge reaction to them, yet I can not feel better until my vitamin levels are higher!
Lots to ask the doctor here! Glad you are finally getting more stable.
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i got 166 on the vitamin b12 test and im in the same boat as you basically. My plan is to try get the doctors to give me a trial of injections and see if it helps, thats all i can think of tbh 
Blood test results...low ferritin
Help interpreting B12/blood test results?
thyroid problem blood tests reveal low folate?
