I have some neurological symptoms of b12 deficiency and my levels fell when I briefly stopped supplementing, so I was thinking maybe I should be tested for pernicious anaemia. So my questions are:
a) If taking b12 supplements isn't helping me, would it be worth trying patches? Are patches anything like injections in terms of getting enough b12 into you via a medium that doesn't involve the gut?
b) If I start supplementing now, I assume it affects testing later (like the active b12 test), but I feel so unwell and confused, I feel like I need to start doing something now. Would it be okay to start supplementing and have the antibody test?
Many thanks. x
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puncturedbicycle
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Heloise told me about a new tablet in the States which is the same as the injection - Hydroxycobalamin - sorry do not have the information to hand at the moment.
I do not have a Terminal Ileum - where most of the B12 is absorbed - also Crohns - and I have been using patches since Christmas. Feeling fine but I do know others on this forum did not feel the difference. Maybe it is due to how deficient you are.
Taking B12 should not affect the PA anti-bodies. It could be trial and error. B12 spray under the tongue may also help....
Many thanks Marz. Poor you, you must really have to stay on top of things to be well.
Am going to the States in a few weeks. Do you know if this tablet is on the market? Will have a google myself to see what I can find out.
So I guess if I have the antibody test I can try the patches immediately. I think the antibody test is also cheaper, but I guess if I don't have parietal antibodies I could still have some unspecified absorption problem? I'm trying to decide on the cheapest and most immediate course of action.
Am also low in iron, so it could just be common and garden variety anaemia.
Had a google after I posted and there is quite a selection out there. Have sent Heloise a PM asking her to give me the information again. Yes the tablet is on the market - will send you the info when she replies.... Am sure you will have looked at :-
I don't think any anaemia is that simple - Hampster1 is the one with lots of knowledge - so maybe have a look at some of her posts. I find her very helpful...think she is away at the moment. At least with the patches you have lots of other B vitamins and Folic Acid...saves lots of twiddling about with bottles...
Had the Crohns for over 40 years - and loads of complications - but am pleased to report that I am doing well now. Since retiring in 2004 I have been able to focus on finding wellness - and being diagnosed with Hashi's in 2005 started my quest for unravelling and learning. This site has been a huge help. Everyday I learn something new....
Hope you have a good trip to the Sates.... and soon find wellness....
Many thanks for your reply. Yes, I've looked at that link. I have lots of the symptoms, but so many of them are also general anaemia or hypo symptoms, so it's hard to pull the threads apart. My hypo stuff looks pretty sorted at the moment, or at least it doesn't look like I should feel as awful as I do.
Thanks. Will be a long trip to help sort out some dramatic family matters so I will be glad once I'm there and dealing with it, but my energy and cognition are so rubbish I'm beginning to panic a bit about my ability to be useful.
I use b12 injections as a therapy, am not deficient, but the injections are used with chronic fatigue patients who need an energy boost both physically and mentally and it helps pull up the immune system too and blasts away toxins in the system. Claire xxx
Hypnoteq that was my first question too. I am this close to ordering Grossman b12 online for self-injection but the intramuscular idea is putting me off. That and the fact that it isn't exactly normal to inject yourself with stuff you bought off the internet. :-0
Rod, this is so helpful. It is sold otc (online) for injection, so I'm so glad you brought this to my attention. Although I did read that hydroxocobalamin is the most painful for intramuscular injections...
Martin123 I was just tested and levels were 332 (range from 180 to 914), which is within range. My concern was that in Jan 13 b12 (when I was supplementing) results were above range, but I stopped supplements for about three or four weeks before my last tests, and the levels have fallen to the 300s. I'd like to know if this is cause for concern. I have a lot of symptoms but as there is so much crossover with hypo symptoms it's hard to know which is which.
I've had a look at the PAS site but I will have a better read and see if I can come back here with more information and ask better questions.
I will also have a look at red blood cells on my test results.
I've done subcutaneous injections before (my ex had type 1 diabetes) but never intramuscular.
Hi - this is pretty much what happened to me. Was 189 so started supplement (gp wouldnt prescribe at all) 4 months later I arranged private blood test so stopped B12 3 weeks before. Was shocked to find I was above range even after stopping. But without supplement all the symptoms restart. My sublingual B12 seems to be pretty effective.
Hi jezebel69. I think that may be the other way around. My levels were good when supplementing but when I stopped - about 3 or 4 weeks before the test - they dropped like a stone.
How long after you stopped did you begin to notice symptoms? I'm hesitant to begin supplementing again before I decide if I will have some private tests, maybe an active b12 test.
Well mine may have dropped too lol - just imagine how high they might have been. My symptoms were back within 2 weeks of stopping but even when my levels were high I still had some symptoms. Its made me wonder if my active B12 is sufficient despite high serum levels
Well this is where I am now. I stopped supplementing for the test and now I'm afraid to go back on the supplements until I've made a decision whether or not I'll go for the active b12 test or just the antibodies. The ab test would tell me if I had autoimmune pernicious anaemia regardless of whether or not I was taking supplements, but if it was negative I could still have some kind of absorption problem and I'd need the active b12 test and for that you need to be off the supplements.
It's funny, my tinnitus suddenly got a lot worse at some stage and I assumed I'd begun to go hypo again but I wonder if it is b12. I also have numb toes on both feet. I've been tested for diabetes and results were normal. Mainly I just have deteriorated steadily in the last month or so - about two months after stopping supplements - until I feel properly ill and a bit demented. My husband found the smoked paprika in the fridge the other day, and I lost my glasses twice today alone.
I have tinnitis too. Because I felt better on supplements I went back on them. Constantly chasing blood tests made me feel I was mimicking my GP when all I really wanted was to feel better. So now I'll treat the symptoms. Most of them cross over from PA to hypo and the common denominator seems to be B12. I will supplement for a while - 6 months perhaps - then if I still havent cleared enough symptoms will then consider more tests to check absorption. I'm lucky - I only need cheap off the peg glasses so have many scattered around in every room lol
I have some otc reading glasses and one script pair because my eyes seem to need different strength at different times but - of course - my script ones are the ones I like to use and I kept losing them.
Some of my symptoms have responded to supplements and some - the numb toes - haven't. I keep reading how important it is if you have unresponsive symptoms to see what your active b12 is like so you don't go on to potentially do irreversible damage.
You're very sensible though and like you I think it's important to get some kind of treatment underway asap.
There has been much discussion about whether to do subcutaneous or intramuscular injections of B12. Both are possible. And I think I remember the issue being part of Dr Myhill's crazy GMC hearing.
I do not know the advantages/disadvantages but perhaps someone who does will post here?
You could also be sensitive or allergic to your hormones / vitamins. Breakspear Hospital make up various vaccines. That may well allow you to take on board vitiamins/foods/hormones it's a costly process.
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