I’m new to this site and have got myself in a right state. I’ve suffered with anxiety for a long period of time and worry myself sick. Anyway for the last few days I’ve been experiencing tingling in both my hands. I’ve worked myself up and concluded I have MS.
I have got my blood results out from September which I had done at the GP surgery (UK) and noticed my Vitamin B12 is at 281 ng/L which said normal no action because the range was 160.00 - 1000.00ng/L.
I’ve downloaded a book called could it be B12? And I think it recommends your B12 to be in the region of 450.
I have a GP appointment in 2 days time. Am I clutching at straws here thinking it could be possibly B12 deficiency or am I looking at something more sinister like MS?
Any help would be greatly appreciated I’ve been in tears for 2 days thinking I have so irreversible condition that’s going to effect my life.
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"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
So really you're looking at 550+.
However, it also says
"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."
Serum B12 tests the total B12, active and inactive, of which only 10-30% is Active B12 which gets into the cells. So your serum B12 test can show "normal" but you can still be deficient.
and list any you have to discuss with your GP, requesting further testing for B12 deficiency/pernicious anaemia if you have symptoms. I believe they are supposed to go by symptoms rather than test results.
Thanks for your reply. I’m seeing GP on Tuesday. What further testing do I need to ask for? I’ve got myself that worked up thinking I’m going to be diagnosed with MS.
I was feeling similarly rubbish over the summer and a medichecks active b12 test came back low, but in range. GP ran a total b12 test, which also came back low, but in range (243)
He also ran an intrinsic factor antibody test, which if positive would have indicated pernicious anaemia which is an auto immune disease linked to Hashimoto’s and causes the body to stop absorbing vitamin b12.
My folate was ok, but you should have that checked out too.
You could ask for an MMA test - it would show if you are deficient in b12 at a cellular level. My GP wouldn’t test for this or consider treating for a b12 deficiency.
MMA testing can be done privately but it’s expensive. It’s easy to source the things you need to self inject b12, and it’s cheap. You can’t overdose and basically, if it makes you feel better, that’s what was wrong with you! You should balance the b vitamins so it’s a good idea to take a decent b complex too. Hope you feel better soon!
Thank you Laaundretta. Where do you source them yourself? The injections I mean? I’ve got myself in a right state this weekend, I’ve basically self diagnosed myself with MS. I stumbled across low Vitamin B and got my blood results out from September and realised it was 281. Downloaded the book ‘Could it be B12’ and within that stated that they would class 281 as being deficient in B12.
Hi, I know how you feel because my mum has MS, so I was getting in a similar pickle. Do you have hashis? Have you tested for folate, vit d and ferratin levels too? Seaside Susie and grey goose are best to advise on these, but they are all part of the picture. Get tested before you supplement, especially B12 because it will skew the tests if you’ve been supplementing. Also stop taking any supplements containing biotin 5 days before any blood tests as it affects the test results.
I can only really tell you what I’ve done based on the advice of these very knowledgeable people.
Initially I tried a b complex supplement and high dose b12 patches, which gave some relief very quickly, but I felt it wasn’t quite enough. So
I bought b12 over the counter in Spain really cheap - less than 3 euros for 5. They are cyanocobalamin and come in 2ml glass ampoules with 1mg of b12. I like them because the dose is pre-measured and individually packaged. You inject one ampoule every 2 or 3 days for 11 ampoules or until your neurological symptoms don’t improve any further. Then it’s once a month. My symptoms were almost gone in a week.
You also get 2 other forms of b12 (which have slightly different protocols) and it can also be bought in a larger bottle from which you draw up the doses. You can order b12 online from German on line pharmacies. Check out the pernicious Anaemia Society (PAS) forum, you’ll probably be able to do a search for that info or just ask them.
You also need some needles and syringes, some pre-injection alcohol swabs and a sharps bucket. I used Medisave.co.uk for this. They come in packs of 100, but still the whole kit and kaboodle cost under £20.
I got the insulin needles because they’re the finest gauge and shortest ones, and I inject sub cutaneously into the fat on my thigh rather than into muscle. The syringes I have are only 1ml, (because they come pre-made) so I have to inject twice for one dose, but it’s so easy.
There’s lots of videos on you tube for self injecting, how to open the ampoules, draw up the liquid and how to inject. I was really nervous at first, but you soon get used to it!
The total b12 test is notoriously rubbish. Mine was 243 and my active b12 34. Some labs automatically refer for MMA if it’s under 70. So I’d say (I’m not qualified in anything medical!) there’s a good chance your symptoms could be due to inadequate b12. You GP should also do a full blood count, looking for a high mean cell volume. With a lack of b12 (or folate) your body makes bigger red blood cells so it’s a sign of deficiency. However, it’s usually a later sign than tingling fingers and broken brain problems.
Like I said in my last post, the MMA test will tell you if you’re deficient at a cellular level, but dosing up and then feeling better will also tell you the same.
Hope your GP is helpful and you get some joy soon! X
Hello , I don’t know the answer to your question specifically , but I do understand about suffering from anxiety. I promise you it will pass, have you been prescribed an anti depressant suitable for helping with anxiety disorders? If not and I’m not trying to push drugs but this might be worth thinking about.Meanwhile as soon as your possible vitamin deficiency and / or your Hashimotos is helped- mark my words you WILL feel better. Get lots of sleep during your anxiety crises and be kind to yourself . All will be well very soon.
Another thing that can give you tingling in your hands (but not your feet) is Carpal Tunnel syndrome, which is very common, particularly among hypothyroid women. Is it particularly bad in the early hours of the morning, or when you are using your hands a lot with your hands higher than your elbows (eg, driving, using a keyboard)?
Aniexty is awful and I feel your panic. I suffer aniexty myself after losing my thyroid to cancer and battling psoriatic arthritis flare that has left me is severe pain 24/7 and then dealing with ignorant Endos that think im fine and getting no real understanding of this disease and no improvement.....I dread every office visit and blood test.
I feel for you - I have anxiety, much better now, but a couple years ago I convinced myself I had ALS (motor neuron disease) because I had muscle fasciculations & weakness. Of course doctors were useless in this regard, although blood tests don't always tell the whole pictures since the body tries to keep blood levels within range. I now believe I was not absorbing calcium.
Don't go over-supplementing - just try to eat a lot of fruits & vegetables and water. I do think many are low in magnesium, however think I oversupplemented magnesium to help with constipation due to hypothyroid, but this maybe cancelled out some of my calcium. I have other issues too I'm still trying to sort out, but anyway thought I'd mention the electrolytes.
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