I couldn't find much on the forum from people who started supplementing before a B12 and folate test and skewed their results.
Before the first test I became worried about delays to treatment and testing, as the NHS is under so much pressure to get everyone vaccinated with Covid. I took an oral sublingual cyanocobalamin and B complex liquid 1,200 mcg daily which ended up at around 2 weeks because of the length of time to get a blood test. I was also very poorly and needed something to help me through the day.
I also changed my diet to include B12 foods as I have had a 7 year diet of low meat intake. Mostly fish, eggs, cheese etc.
Of course I tested 'normal'
My anemia symptoms improved over 6 weeks but my troublesome nervous system problems haven't improved much; Peripheral Neuropathy, body tremors especially at night, rattling nerves in my legs, which aren't going away. I've also increased my dosage of b12 with another sublingual (Methylcobalamin and Adenoysl mix at around 6,000 MCG a day to self medicate. But I have started to worry that I missed the loading injections and may not be able to improve my neurological problems.
So, the good news is that the Dr has agreed to test me again. But he suggests stopping sublingual treatment for 10 days before the second blood test.
Will this work? Can I stop taking the B12 and expect to see more realistic levels in 2 weeks? Or will this make it all worse?
Any experience or thoughts welcome!!
Thanks
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Your results weren't skewed by the supplements. If your B12 was high (not 'just a bit above the bottom of the range') then the test shows that you can absorb oral B12 and any deficiency was dietary.
What was the result of your first test (with units and range)?
If you can absorb oral B12 then a few weeks off the supplements is unlikely to make much difference.
Thank you for your feedback, I really appreciate it. I did have a hunch that it was dietary.
But I was wondering if you thought there was much difference between the sublingual and oral supplements? Obviously a pill will need to be digested, but does sublingual go into the bloodstream quicker and bypass digestion?
In which case it may not be clear if it's PA or not? Please do correct me if I'm barking on the wrong tree.
Unfortunately I got a text message from my Dr saying 'all blood is normal'. So I don't know about the results, but I will ask for a full print this time.
So you're saying that a break from sublingual for 2 weeks won't make much difference to my B12 levels?
The B12 molecule is too large to cross biological membranes unaided. So none of it will be absorbed sublingually. It will all be swallowed, making it the same as a normal oral dose.
If you can absorb B12 from the gut then your B12 levels will not drop very quickly.
B12 is stored in the liver (as well as other tissues). Some of the B12 in the liver is eliminated, via the bile, into the small intestine. If you don't have PA then that B12 will encounter Intrinsic Factor and the two will bind together, This makes the B12 available for reabsorption in the ileum. So the B12 can go round and round from the blood to the liver to the gut and back to the blood. It's called enterohepatic recirculation. As a result blood levels drop fairly slowly.
If you have PA, then you don't make IF, so the B12 in the bile isn't reabsorbed, and blood levels drop more quickly.
It's a tricky thing trying to be ones own doctor! But when the Dr. suggested B12 and folate test, the penny dropped on my dietary insufficiency hence my rapid change around.
But now I'm faced with unresolved neurological matters and seemingly no way to get the loading injections I suspect I'll need to wipe out the chaos in my nervous system.
Or, could keeping up a high dose of oral eventually resolve it?
Perhaps that's impossible to say, hence why injections are always the initial route to resolve them.
Am concerned now whether the 2nd test will be as farcical as the first. But I feel I need to get the right treatment if I can
That's the only time when taking oral B12 to check the cause of a deficiency is a bad idea - when you have neurological problems due to a dietary deficiency.
Because you really want the B12 levels in the blood to get as high as possible, as fast as possible. And the best way to do that is to have injections. But, because the oral supplements have raised your blood levels it's unlikely a doc will prescribe the injections.
You could try self-injection. Just 10 doses given over three weeks should get them levels sky high. Then oral supplements will keep them high.
Or you could try to maximise the amount you're absorbing orally. Three (or four) oral supplements a day should get levels high enough after a month, or thereabouts.
Very helpful to know and yes, it's highly regrettable. My nervous system symptoms were very intense, though, including an inability to stay awake for much of the day and all the irritability, anxiety and paranoia that I guess comes with the deficiency. Hence I turned to B12 to alleviate things a bit.
Alas, it is what it is.
I wouldn't know where to get injections. But yes that's good advice as I have been going hard on the oral doses, as you say around 4 a day for a week or so. It has helped but not removed all the intense symptoms in the body.
Do you think if I stopped for 2 weeks it could be more harmful than carrying on with 4 a day high doses and ploughing through? Or, could I 'pick up where I left off'.
" the irritability, anxiety and paranoia that I guess comes with the deficiency"
That might not be a deficiency. Those are the symptoms I get when I inject methylcobalamin. Others have reported similar side-effects when taking high dose oral methylcobalamin. It might be worth switching to cyanocobalamin.
My symptoms had been gradually increasing over 1 year, from pins and needles in hands and feet. It seemed to be provoked by alcohol use, even just one drink.
I put off seeing the Dr. because of the pandemic but in April my symptoms became very intense, including burning skin and a sinking feeling of dread that something wasnt right.
After I went for a run to shake it off I think my anemia kicked in. Soon after I had very bad peripheral neuropathy and disturbances in my body. Thats when I contacted the Dr.
Then I became weak tired, irritable and in bed at 7pm. I had anxiety, sleeplessness and dread all before supplements. Plus my body kicked off with internal tremors, headache, chest pain, nosebleeds.
When I woke up and couldn't feel my legs properly I got scared and still hadnt heard from the Dr. So ai thought Id take matters into my own hands and try B12. Then of course I chased the Dr. And got the blood form for a test. By then Id been on daily B12 which was helping.
But by the time of test Id probably already treated half the symptoms.
Ive now come off the supplements for 2 days and Im getting some sleep. But I think I have potentially messed things up quite badly and can only pray that the Dr will be kind and let me have injections to rid me off the body tremors, leg problems and potentially even spinal cord problems.
This has proven a nightmare that I just hope I can turn around by staying off supplements for a week and getting some action from doctors.
The GP agreed to a neurologist appointment as part of my initial request. But its a routine 4 months wait. I was hoping they could help but its too long to wait.
GPs can only treat based on the test results I guess, which I obviously wrecked. And because theyre so busy everything is online, text without much chance to discuss.
Ive come off my b12 doses. I think it was ruining my sleep anyway as I was highly charged on it.
I think there's probably not even a cats chance of getting a result that says Im deficient. But my only hope is that they try this and see how Im struggling and give me something to help.
Otherwise Im left with overdosing and not sleeping, which is ruining my family and work life
Yea I think it takes months to go low enough for them to take notice. Don't take any b vitamins in the evening as it does stop sleep. Although I have heard that b12 injection helps some folk sleep maybe it's different in the blood. If you don't want to wait for a sympathetic endo then you learn to self inject b12 as suggested below.
Use the search bar above. Also YouTube used to have films showing you how to self inject yourself in your thigh. Good luck. Keep asking questions on here and the experts will come through for you.
As Im based in the UK I think its a different approach. We can't get injections without a prescription or test, so no over the counter is possible for self injection.
My doctor says wait a week but Ill leave it 10 days and restest. Hopefully I wont fall anymore apart than I already have!
I'm in uk. Before Brexit we used to be able to buy them from Germany. You need to enquire with folk on here the situation now. I used to inject my brother with B12 , but I don't now.
You ought to have the first one in a clinical setting, anaphylaxis is highly unlikely but possible. Depending on where you are, Reviv will administer b12 without prescription.
I think the bigger problem is that if you go outside the system then you are deemed to ‘not have a problem’.
If you can get somewhere with a doctor that is going to be preferable. I’m now someone with no health issues but ‘dangerously high b12 levels’ according to my doctor.
So yes, I do find the injections helpful but am now stuck with my doctor shrugging his shoulders. Mind you this has been going on for a long time.
Yes. Since I took matters into my own hands before, I'm reluctant to make too much mess again without a Dr's consultation. Especially as I know what this thing is now.
Plus, I have my Dr's attention finally, after 6 weeks of megabolastic madness, loss of work, stress on my marriage, ongoing self medication, lack of sleep, lack of income and endless online doctors forms and hospital visits.
I'm going to push hard for proper help, regardless of the outcome of these tests, because it simply can't be possible to put all decisions down to a test result.
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