I've been on a B12 roller coaster for a few years now. My symptoms seem to correlate with when my levels drop but I do not have anemia. I am allergic to B12 shots (had 3 at different times before they had to come to a halt for throat/tongue swelling) and my doc said well, go to a hematologist. I feel this is going to another wasted trip, as was the gastro and neuro. My diet is good and varied, meat and seafood and veg so no reason seems to appear. Doc tested for IF in March 2020 but right after a shot so not sure that was a real result. My other bloods are good. Doc treated folate in Oct 21 since that dropped and stayed low. Now it's back up and B12 is at 155pg/ml. I am soooooo exhausted and woozy. I'm going to post my results chart, is it normal for this to toggle like this?
Doc did not rerun MMA this time even though B12 lowest ever. She ran in it May, thought that was fine. Never ran homocysteine, and figured her Feb 2020 IF test was good enough. She told me B12 doesn't cause palpitations or shaking - I'm also straight exhausted...,
At this point I am worried it won't go back up. I'm thinking I might try another internist before hematologist - maybe they will run more tests? What should even be run? Thanks!!!!!
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gypsy_child
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Your GP is wrong about palpitations not being a possible symptom of B12 deficiency. The NHS includes palpitations in their symptom list regarding B12 deficiency :
There was plenty of shaking going on especially in my first days and weeks of B12 treatment. Not necessarily saying those things are for sure happening to you as a result of B12 deficiency, since other causes are possible. But it is possible they are B12 related.
I would look for another IF/parietal cell antibodies test to look into PA as you dont seem to have a dietary cause. This and other tests listed here : pernicious-anaemia-society....
Probably a good idea to keep looking for a form of B12 you will not react to. It could be just this specific formulation or the additives, dont give up on injections yet - they are likely your best hope for adequate treatment - its more likely you are allergic to something in the formulation than the B12 itself. Even if you do react to cyanocobalamin in any formulation, you could look into hydroxocobalamin, the standard treatment in Europe.
That's what I am thinking - there has to be more than one kind of shot! I can't be the only person allergic to it. My doc just seemed to shrug at this point but I don't see the point of seeing a hematologist who treats anemia when I don't have anemia. Does B 12 at 155 have symptoms even without anemia?
Absolutely, B12 deficiency, even severe B12 deficiency may present without anemia. It's often mentioned that pernicious anemia is thus a poor name for the condition today since doctors who do not find anemia may dismiss the severity of the deficiency. Point 1 in b12-institute.nl/en/diagnos...
My problem is that, as explained at the "VeganRD" site:
"Folate, can “mask” anemia due to B12 deficiency. Folate steps in and prevents anemia, but it can’t prevent nerve damage. So, if your diet is rich in folate but low in vitamin B12, nerve damage can actually be the first symptom of a B12 deficiency. This is a concern for vegans in particular, because our diets are often high in folate which is abundant in leafy greens and beans."
When I became dangerously deficient 3 years ago due to a dosage mistake, I recognized the symptoms of B12 deficiency neurological damage (tingling/numbness) and went to a GP for advice and testing. This was the biggest mistake of my life, second only to reducing my B12 dosage in the first place. Although I told them I'd reduced my dosage years ago, instead of treating me for deficiency, they told me I'd had a "B12 overdose" (on 250mcg a week) and sent me away with a recommendation to take 1/30th of the minimum biological requirement, without any follow-up. Their misdiagnosis and my unwarranted faith in their judgement and knowledge at the time led to the disaster of maybe permanent neurological damage I now struggle with.
I had anaphylaxis to cyanocobalamin many years ago and thus refused B12 for years as my levels (B12, MMA and homocysteine) all were off the charts and scary. I did my research and started low and slow. I did not do very well with methylcobalamin but have had no signs of allergy to the hydroxycobalamin after 14 months of injections every 3-4 weeks. Hope that helps. I have to self-inject. In the US, most traditional doctors’ offices still use cyanocobalamin. Functional medicine docs and naturopaths are much more knowledgeable about the various forms of B12.
My ferritin is always in the basement and doc thinks it's no big deal I guess because my iron and other bloods come back normal. Is ferritin big deal? I know it iron stores, does this mean I'm just not storing like anything???
by elimination when you have B12 deficiency symptoms .
if you are not vegan or strict vegetarian.
If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any acid-negating preparations and other pharmaceutical drugs ( look up on the internet )
If you do not abuse Nitrous Oxide ( laughing gas)
If you do not have fish tapeworm
If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———
Low serum B12
Symptoms of B12 deficiency (Google to find out - and there are many symptoms.
Gastric atrophy restricted to the corpus and fundus
Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection
Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized
Hypergastrinaemia (various causes including Helicobacter Pylori infection .) Of course a positive result for an Intrinsic Factor Antibody test( IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative.
High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it .
High levels of Methylmelonic acid can also be indicative of Pernicious Anaemia.( In blood or urine )
Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above . I did get a conclusive diagnosis.I was lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, and have to cope with the irreversible symptom .
Reading posts on the forum has been very informative. Best wishes .
You can have pernicious Anaemia even with a normal VitaminB12 reading . This is called functional deficiency , caused by Intrinsic Factor Antibody interference with the Assay .
PERNICIOUS ANAEMIA IS THE MOST COMMON CAUSE OF VITAMIN B12 DEFICIENCY.
I can order some blood work online for myself and am goingt to get the IF and parietal test and the homocystein test. I have to oay it off pocket but I'm tired of clueless doctors! Then i can govwith those results myself. Homocystine was tested once years ago and was high. Also chronic deficiency in vitamin d and right before last blood test I ate tons of folate so who knows if that number is right! I has Endoscopy two years ago and my stomach has granularity and erythema consistent with h.pylori but was negative for it. So who knows what has happened since! Had a doctor a few years ago supplemented iron but i just felt terrible and after 3 months ferritin went up by 1. Literally from 12 at the time to 13. So i don't think it's going in. And vitamin d only raises in the summer! So yeah, i don't think I'm processing this. (Also have mthfr but not sure how much that effects anything)
Please can I ask where you are ordering these tests from as I am going to do the same. No seems to listen to me even though pernicious anemia runs in the family - I just get a response that my b12 levels are fine and they won’t test homocysteine, MMA etc?
You can get tests from private laboratories . There are many . You are in U.K. .gypsy_child/ vagabond beauty is in USA . medichecks.com give a doctor’s comments with the test results. By the way, do get print -outs from your surgery for the blood tests you have . You are entitled to have them . I didn’t know this when I had b12 deficiency symptoms. I was told all was normal . Years later, I found out that the B12 blood serum result of that test was well below range , so do ask for a print-out .
hi Wedgwood I agree with what you are saying and always look to you for advice but would like to clarify something please.
I have had surgery to my digestive system ie-gall bladder/appendix removal and was told because of this I lacked the intrinsic factor and therefore had pernicious anaemia.
This was forty something years ago and I have had B12 injections ever since apart from when a stupid young doctor said I didn’t need them.
Please don’t think I am being difficult just confused. Best wishes.
You don’t mention what kind of B12 was injected . There are 3 types namely — cynocobalamin, Hydroxocobalamin and Methylcobalamin. Perhaps you need to try another form . of B12 ?
VitaminB12 / Pernicious Anaemia certainly can cause palpitations . I had them for years with other B12 deficiency symptoms , until I was diagnosed and got treatment ( had to resort to self -injecting eventually as GP wouldn’t give me sufficient).
Re. Intrinsic Factor Antibody test . About 50 % of P.A. patients test negative on this test , so a negative test does NOT rule out P.A. Many doctors do not realise this .In fact there is a definitely a huge lack of knowledge in the medical community . on B12 deficiency. There are many and varied symptoms of it , because B12 is an essential component of the myelin sheath that protects all nerves . We have nerves all over our bodies , so there are many and varied symptoms.
One thing is certain ..Pernicious Anaemia is the most common cause of Vitamin B12 deficiency, and the medical profession is generally ignorant on the subject . We are very much on our own when it comes to treating it . It is an autoimmune condition and as such , seldom comes alone . ( yet another complication)
That’s why the PAS and this forum are absolutely invaluable . Very best wishes to you .
It was cyanocobalamin- and she didn't know I had her read me the bottle. I know i have mthfr, the bad one, but I'm not sure how much that actually effects things. She's clueless so I'll probably have to go searching for a doctor who knows more. If i take any kind of b12 i twitch almost constantly.
Iron - I know someone who was severely anemic her entire life, had pica as a child - that low. Nothing worked, after decades of trying everything. But this did --
Like others have said you could try a different form of b12. And as an aside I have read that some take a benadryl before it, when allergic. But given your signs I understand how unnerving it all can be. I don't understand why suggestions have not been given by your doctor.
You have an issue with b12 deficiency, so the whys are of course important but not as paramount as getting you well with b12 supplementation.
But when you do investigate - Have you ever had your thyroid checked? There can be a connection.
My thyroid has been checked and is always within healthy range. I've been repeatedly checked for MS as well for numbness, brain fog, fatigue, weird neuro issues. I do have migraine lesions but otherwise am good. Even my heart has been checked, including a CT scan. At this point I think my docs believe I am quite crazy but these B12 numbers always seem to come in low when my symptoms arise. Seems coincidental, no? I need someone to order all of the right tests at the right time and work with me on B12 I can tolerate. I did benadryl before the last shot, still swelled my tongue unfortunately (though I already do gt tongue swelling as part of my symptom package).
Check out that link, there is no reason to keep checking the b12 level. Since you're not vegan or vegetarian (but for those reading, one could be either and still have pernicious anemia/absorption issue), a low number simply denotes an issue. Done. It is not a reading like most a la in range now everything is good - it does not work that way. Low level found, no reason to keep going back to it. It is a common error by medical professionals.
I thought I was having a stroke or heart attack many times before diagnosis/supplementation. There was nothing wrong with my heart.
Not saying that is the case for you, just sharing how strange symptoms can be.
Have you been referred to an allergy specialist and checked for cobalt allergy and allergy to acetic acid?
Cobalamin (B12) contains cobalt.
I have read articles where B12 deficient people with cobalt allergy have undergone a desensitisation process. Search online for "B12 deficiency cobalt allergy".
I've also read that some people can have an allergic reaction to acetic acid and some B12 ampoules contain acetic acid.
Do you tolerate b12 in food? A hundred years ago pernicious anemia was treated with liver. Raw or lightly cooked, but as long as it's not overcooked I suppose it still contains plenty of b12. B12 is not that sensitive to heat as for example folate.
Of course too much liver isn't healthy either, but that has to be weighed against the risks of deficiency if you can't get it from supplements or injections.
Come to think of it, the liver diet must have provided many other vitamins an minerals at the same time.
The liver cure for PA was such a step forward that those who discovered it (Minot, Murphy and Whipple) got the 1934 Nobel prize.
Milk, beef and fish are also good sources. Not enough to treat PA, but a little is better than nothing.
Here's an inspiring story about a man with PA unable to tolerate the treatment but doing better than expected.
I hope you find a way. Have you tried weaker injections, say 100 instead of 1000 mcg? Have you thought of gluten intolerance as a possible cause for reduced absorption?
B12 injections sometimes cause low potassium, though I don't know how quickly that happens. Any chance your reaction to injections could be low potassium rather than an allergy?
Maybe?? First shot was okay, second immediately hit my throat and tongue. Third shot a year later I took benadryl and had a steroid on hand, still the swelling, the throat not as bad.
Well first self ordered test already in and ferritin is low based on their scale.... 13 ng/ml their range is 16-232. We will see what the others say. I might make that hematologist appointment and see if I get anywhere.
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