I am in bad shape and not getting better as I thought I solved it.
Meat eater so non-vegan/vegetarian
Early July
I began to wake up daily around 3:30am with my heart racing and minor sweating. Not drenching the bed but warmer than I recall being. Didn’t have a fever when measured by ear. The most peculiar symptom was tongue ulcers. Small patches mostly concentrated in the front and sides. They would come and go weekly.
Coming off COVID in late May, my CMP, Urinalysis and CBC all came back normal. Doctor said it was stress and gave me trazadone. It did nearly nothing but made me groggy.
August
Tongue ulcers coming and going but getting worse. Heart pounding begins to get noticeable. Did thyroid TSH and Lipid work up and that was normal. Doctor said to double down on trazedone to no affect. They pretty much wiped their hands of me.
Late September
Tongue ulcers getting bad and not going away. New doctor in early October. CMP, Urinalysis, and CBC all came back normal again. She said it was stress and you guessed it, Trazadone!
Stress as in nothing and no one is helping, yes.
November 1
I am struggling badly, night sweats, heart palpitations and my tongue is raw meat. I stumble on B12 deficiency forums and began to take a Centrum Multivitamin and 1000 mcg of B12 (cobal) daily.
Over the next 7 days, my tongue heals up. My heart and nerves smooths out. Sleep is still rough.
November 8
I get a B12, Folate, MMA, Homocysteine, CMP and CBC tests.I tell them I was supplementing for the past week but they said it shouldn’t affect much. Deficient is deficient.
B12 = 460 pg/mL
Folate Serum = 19.2 ng/mL
MMA = 99 nmol/L
Homocysteine = 9.7 umol/L
CBC and CMP = normal
Doctor says it all normal and sends me to rheumatologist who says nothing is wrong.
Past 3 days “relapsing”
2:30am Night sweats with heart racing is worst ever, tongue ulcers returning.
I have not stopped taking my multivitamin and b12 but I am scared and don’t know what to do.
Written by
Tarkettjim
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Thanks for outlining your situation so clearly with all the details. It is a terrible situation that the medical community don't get enough (any) training on nutrition. One nutritionist said they got around 4 hours in total. I don't know about you, but I would not want to manage other people's lives with 4 hours of training.
Your symptoms do sound very much like B12 indeed. And you have used yourself as a case example by taking the B12 supplements and noticing a marked improvement.
I am sorry to tell you that it's very likely you do have a deficiency and the supplementation has skewed your results. All the Doctors say 'a deficiency is a deficiency' or 'you didn't take enough supplements for long enough to affect the test' but they are wrong. Their backs are against the wall because there is only one test for B12. And that (serum) text measures the B12 in your blood. And so there can be plenty in the blood but that doesn't meant it's resolve all your symptoms.
I was in a similar situation to you.
I would recommend that you consider ways to get the B12 injections that you're very unlikely to get from the GP's. It can take 4-6 months for blood levels to normalise. So you need to take matters into your own hands and Doctor yourself.
You need to get at least 6 injections over 2 weeks, but ideally Every Other Day injections. Where do you live? There are many cosmetic surgeries that can give you an injection, which you want for the first one in case you have any strange reactions to B12. If you don't, then you could consider self-injection.
Most of us have had to do it. It can be scary but is not hard when you know what you're doing. You would need 1mcg/1ml ampoules, needles, syringes, sharps box and hopefully someone with you for moral support.
"I tell them I was supplementing for the past week but they said it shouldn’t affect much. Deficient is deficient."
I was told the same thing 3 years ago. I was getting tested because I spotted what I thought was the first symptoms of B12 deficiency which for me was pins and needles/numbness. My B12 was 636. I had supplemented before the test and told them so. They said it didnt have any bearing on the result. I was assured I was overdosing on B12. In fact, because of a dosage misunderstanding, for 5 years I had been taking 1/8 of the required dosage and the symptoms were exactly what I suspected they were. I did not have the B12 knowledge I have now. I trusted their recommendation which was to take what I had been taking once a week, once a month. This dosage was 32 times less than the recommended minimum dosage. Unsurprisingly, my symptoms worsened for 2 years but I didnt suspect B12 because I assured myself I had gotten that professionally checked out so it couldnt be that.... and I'm left with probable permanent neurological symptoms because of this unfounded belief that the B12 serum test is not affected by supplementation.
I advise you not to take my path. Seek the best available treatment, injections if required. If the injections dont seem to make any difference at all you've lost nothing in trying them. Check other blood test results to make sure nothing else is off to make sure you support treatment as best you can. Be alert for other possible causes as B12 may not explain everything, although the fact that you initially got better on B12 supplementation is suggestive.
I'm afraid I agree with pickle500. With the B12 levels you have your GP will never diagnose you with a B12 problem.
But SI is so daunting. As you seem to be able to absorb oral B12 I think you should first try to see how much better you could get by increasing the amount of oral B12 you take.
The problem is you don't know what is causing your B12D. If it is caused by PA or faulty parietal cells you will only be able to absorb B12 passively and only about 1% of any oral B12 supplement will make it into the blood. The process is basically osmosis. So you need to take lots.
I have PA however and I find oral B12 works for me. If you want to PM me I can tell you my protocol.
Thank you all so much for quick responses and details. It is truly amazing to have this type of support. After reading so many stories, I know it’s a long road.
It’s so worrying to wake up with these tongue ulcers over and over. Googling “b12 tongue” is literally what I am seeing.
I am so looking forward to a full nights sleep with no sweating, heart racing, chest pain, and tongue ulcers.
It could be worth finding a naturopath or functional medicine doctor if you can afford it. They may be able to help you with diagnosis and appropriate treatment. For example, before I managed to get into with a GP I visited a new world acupuncturist/herbalist who suggested I could have several deficiencies - Iron, Zinc, Thiamine, niacin. But even he was sceptical of the results from his own machine.
What I'm saying is, B12 is a sort 'default' treatment for general malnutrition. And I believe that's what I had. I certainly recognised my early stages of deficiency in your account.
A functional doctor could also run tests for ferritin, (iron), zinc, thiamine or other B vitamins that you may also be deficient in. It's just the medics don't test for them, only B12 or Iron - the things that cause anemia. A combination of B vitamins may help you recover alongside injections. Best to try to get some help from a medical person if you can.
It is really difficult to know the best course of action here given that as others have said your current b12 level is too high to get injections from a doctor but stopping supplements could worsen your condition. Personally I would either stop supplementing for a month and get bloods rechecked, you should see a reduction in your b12 level which could support you in proving the supplements had increased the numbers.
Or try high dose oral supplements and see how you get on with those, some forum members find the sublinguals that melt under your tongue have more of an effect than normal tablets. Definitely worth checking if your iron and folate are in the correct ranges too. Good luck, it is so stressful when you don't feel listened too but this forum is amazing and so much knowledge which really helps us to take control of our health.
hi, I feel your pain. I am lucky to be able to get my 4 weekly injections and I suffer with PA.
Regarding mouth ulcers aside from other symptoms with my B12 deficiency I notice when I’m a few days away from my injections I get dreadful ulcers on the side of my tongue cracked lips and palpitations. A few days after my injections they disappear like magic unless I am stressed or run down so your symptoms seem to me to b a B12 deficiency.
Listen to all these clever, caring people on this forum. I do. I wish you well.
Sorry to hear your plight. Figures don't mean much w/o the ranges. I have had incident of night sweat and fatigue. BC showed both B12 and D (especially) low. Taking those cleared the fatigue. I have stool change so different from your problem I guess. Hope you can track the problem down. Technoid, I had a blood test after taking B12 supps and it had upped to within range (not proving it was the supp but I think so). It may have been the Vit D level which was 50% down on lowest in range. I now take a composite B tablet and have studied my diet to make changes. It is also necessary to research best type of Supp and how to take it (with food etc). Vit D I take with a spoonful of organic cold pressed rapeseed oil. I think I have a bile supply problem hence malabsorption) but at least the fatigue and shakes are at bay for now. Still under investigation but have had to push the Dr for continued action. I'm in the UK with NHS. OP does not say how old they are.
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B12 roller coaster...
Homocysteine result just in - opinions please
Can PA just disappear, even though you still suffer?
High Homocysteine levels 
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