Feeling worse after B12 Injections

[juanpablo111]

Hi all,

I am a 21 y/o male who eats meat and was diagnosed with a B12 deficiency (not PA) about 2 months ago. I went into the walk-in about 3 months ago with heart palpitations, fatigue, severe anxiety, inability to focus, and some vision issues. I was diagnosed with generalized anxiety disorder and my doctors decided to run a few blood tests. The results showed a [B12] of 0.0pg/mL and [folate] >19.3ng/mL.

I was started on weekly vitamin B12 shots and after the first I felt great. As I continued to get the shots it started to feel as if they weren't helping and I was regressing back to how I felt and some twitching. This week was supposed to be my 7th shot but I was unable to schedule due to thanksgiving and other commitments. As my normal shot day, which is normally thursday, began to get close, around tuesday I started to feel a headache coming on and my palpitations becoming worse. On thursday morning as I was driving to visit family I my headache started to get significantly worse. It felt like a sharp throbbing pain on one side of my head behind my eye. I turned around and drove home and spent the whole day on the couch. After talking to my family I realized that it was a severe migraine (this was the first migraine I have had). Today, Friday, I had another migraine that was not as bad but my heart palpitations and anxiety is at an all time high.

Has anyone else experience a similar situations where they began feeling worse after the first B12 shot or have felt completely terrible after missing an injections?

Bellow I have attached my non-fasting blood results and everything else looks normal but I do find it weird that my B12 is nonexistent and yet my RBC, MCV, and MCH are normal.

Thanks!

[Jillymo]

I had a similar experience.

Were you given the initial loading dose and then given weekly shots ? Often after an injection symptoms can get worse, mine most certainly did. There is no quick fix it is going to take time to heal the nerve damage that has occured.

I was given the loading dose then prescribed 3 monthly injections which were nowhere near enogh to keep my symptoms at bay. I had to beg my Dr to give me two monthly shots which were still not enough so I had to get B12 from abroad and self inject. Which I am still doing now.

It was slow progress with some symptoms getting worse before better. The first thing to improve was my balance and sight then over time my gait improved. It's been 2 and a half years but I can now function throughout my day. I still get the occasional numbness with stinging and burning in my legs. I also get pain in my right temple ( I wondered if it were to do with the piturity gland ) but wouldn't say I get it as bad as your experiencing mine is more of a dull ache.

With a non existent B12 I am not surprised you feel so awful its going to take time to heal. Other's on here are far more experienced than I who will cast an eye over your results and offer advice albeit they are not medics but have gone through this themselves. You will learn a lot on here from other's and albeit your told it is not PA keep an open mind as it still could be.

I hope you feel some improvement soon and sorry to hear your having such a rough time.

[qwertystar in reply to Jillymo]

I have the same symptoms. How often are you taking b12?

[Jillymo in reply to qwertystar]

I have been having to inject every day just to keep the symptoms at bay. It is tiresome having to do it every day but if that is what helps me to get throughmy day and actually function then thats what I shall do.

It's been two and a half years since starting treatment but I have improved so much. I have a number of other conditions to contend with and the low B12 simply wiped me out. I added this out of interest........

Undetected vitamin B12 deficiency due to false normal assay ...ncbi.nlm.nih.gov › articles › PMC3827408

by E Scarpa · 2013 · Cited by 25 — Although measurement of vitamin B12 levels is the gold standard for the diagnosis of B12 deficiency some reports do exist concerning difficulties in its assay–.

[clivealive Forum Support]

Hi juanpablo111

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with. I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery. Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If you can get to see a doctor please also ask him/her to re- check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 50 years.

I wish you well.

[Sleepybunny]

Hi,

It's quite common for forum members to report that their symptoms get worse for a while before starting to get better. Someone once described it to me as the nerves starting to wake up after being starved of B12 for so long.

Some people can get a drop in potassium levels (hypokalaemia) when they start B12 treatment. Your doctor might want to check your potassium levels again.

If your serum B12 level was 0 then I'm guessing you feel really ill.

I can't see any blood test results for iron eg ferritin or any other iron tests.

Might be worth asking your doctors if they have checked your iron levels.

Iron Tests

labtestsonline.org.uk/tests...

"but I do find it weird that my B12 is nonexistent and yet my RBC, MCV, and MCH are normal."

Low B12 can lead to enlarged red blood cells (macrocytosis).

(so can low folate)

Low iron can lead to smaller red blood cells (microcytosis).

If a person has both low b12 and low iron then their red blood cells may appear to be normal sized with normal range MCV and MCH due to the effects of the iron deficiency masking the effects of the B12 deficiency.

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

I hope you start to feel better soon and that you have a kind doctor who listens to you.

[Sleepybunny in reply to Sleepybunny]

A few B12 links that may be of interest.

Some links may have details that could be upsetting.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Sally Pacholok has written some online articles about B12 deficiency which may be worth searching for.

If you search online for "Sally Pacholok B12 conference" it should show a link to a slideshow Sally presented to a conference in US.

Symptoms of B12 deficiency

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12-institute.nl/en/symptom...

b12awareness.org/cobalamin-...

There are lots of potential causes of B12 deficiency.

A few I can think of are

A diet that lacks B12

Excess alcohol

Exposure to nitrous oxide

Pernicious Anaemia (spelt anemia in US)

Coeliac disease (spelt celiac in US)

Crohn's disease

Internal parasites eg fish tapeworm

Some medicines/drugs

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

Some useful websites...

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring and an online contact form.

There is a PAS support group in Chicago area . Contact PAS for details.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

US link about PA

rarediseases.org/rare-disea...

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

Has useful lists of symptoms and causes

b12-institute.nl/en/home-2/

Films and videos about B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

There are other forum members in US so may be worth searching forum posts for threads started by US members.

I believe that     EllaNore is in US.

I'm in UK and I've had some very difficult experiences with doctors in UK. My experience is that B12 deficiency is not well understood by some health professionals.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

If you have the time and energy, I suggest you search online for any regional or national guidelines for treatment of B12 deficiency.

US B12 articles and news stories

pernicious-anaemia-society....

chicagotribune.com/lifestyl...

nhlbi.nih.gov/health/anemia...

Next one is aimed at health professionals in US.

ods.od.nih.gov/factsheets/V...

[Nackapan]

I got worse before I saw improvements. Migrains featured.

And a cascade of varying head kains znd headaches.

I was bedbound..

Vertigo snd balance issues light and noise sensitive.

It's important to stick to your b12 schedule .

Weekly in your case should continue.

Even if your b12 level up.

PA testing only picks up 50% of yhise with it.

So don't rule it out.

Medications

Alcohol

Parasites among the long list thst csn inpede b12 absorbtion .

Kerp going with the b12 you will improve .

It takes time. .

[tomdickharry]

Non-existent B12 has to be a misprint or the test was not done. You need to query it and get it re-tested.

[FlipperTD]

Scientist, not medic.

These results are really 'quite strange'. Put simply, I don't believe the B12 result, and in my lab, I never saw a result of zero for B12. That's in millions of results. I always got some signal. I can only hope that the lab repeated the test, and maybe even on a fresh sample, before you started treatment.

Your haematology results are not 'just' normal; they're very normal indeed.

I hope you're improving by now!

[MoKayD in reply to FlipperTD]

My daughter was diagnosed with B12 deficiency last year and her B12 test results said her level was so low it was unable to be read.

[FlipperTD in reply to MoKayD]

What you describe isn't quite the same as '0', is it? Typically, 'less than 50' might be a response, depending on the method used and the laboratory.

Did your daughter have any abnormal hematology results? Was she anaemic? It's not always the case, but I would have expected something as well as an unmeasurable B12.

[MoKayD in reply to FlipperTD]

She had been diagnosed as iron deficient several years before but her doctor at that time didn't test her B12 level. Her current doctor tested her for B12 deficiency only after my daughter, very insistently, asked her to do so. Her doctor told her that because my daughter was so young she didn't think B12 deficiency was likely. When her GP saw the results, she was shocked and told my daughter she had never seen a result for B12 like that. Fortunately she immediately started her on loading doses and has given her a prescription for B12 for self injection as she needs it. My daughter feels so much better now. Oddly, she had been battling a pretty severe case of eczema which disappeared after she started getting B12 shots.

[FlipperTD in reply to MoKayD]

Everyone's different. I can appreciate the reasoning for not doing a B12 assay when checking her ferritin [or whatever iron indicator] but checking B12, Folate and Ferritin at the outset is probably wisest. It just goes to show that the 'B12 deficiency is unlikely in someone so young' is probably right most of the time, but not always. The eczema story is interesting too!

[Wwwdot in reply to MoKayD]

MoKayD

Thank you about the insight into eczema - mine cleared up too after it getting really bad for the last two years despite medication galore - after two B12 jabs it’s completely cleared. Thank you again

[MoKayD in reply to Wwwdot]

I've never seen B12 listed as a cure for eczema but if it wasn't what cured her skin issues it was awfully coincidental. Her eczema had spread to the soles of her feet and even though she was only in her early 20s she was hobbling around like an old lady. Within in a couple of months her eczema was completely gone.

[Cherylclaire Forum Support in reply to FlipperTD]

Would it not set off alarm bells at the clinic ? After all, if you haven't ever seen this result, neither have they. I have heard of people being told on this forum that their results were "below measurable" -but never that they were non-existant !

Whatever the results, the complaint remains- the reason for juanpablo111 's initial visit to the walk-in clinic. That is signalling something is wrong, despite blood results being good/erroneous. It warrants further investigation.

A retest now of serum B12, once on weekly injections, will probably be unhelpful as it will be high either way.

Juanpablo - it could still be worth finding out what your current B12 reading is , if you can find a medical professional who understands that it should by now be very high. A lowish but witin-range result after treatment would indicate that you do have a severe B12 deficiency. If it is high, it might be worth seeing what your methylmalonic acid (MMA) is doing.

MMA should drop once B12 is replete. If there is insufficient (or no) B12 in bloodstream, or it is not linking well with B12 at this stage, your MMA will increase in your bloodstream, and carry on increasing until B12 makes the journey and the required links. So an MMA result above range would indicate some problem in this area. If B12 blood levels and MMA are both high, a functional B12 deficiency could be preventing B12 being useful at cell/tissue level.

Quite often though, a patient with B12 deficiency experiences symptoms getting worse before better when treatment with B12 injections start -so it can take a while to feel improvements.

Heart palpitations: this could be anxiety - one of the many symptoms of B12 deficiency. When mine suddenly got worse, day and night, I was fitted with a heart monitor for 24 hours. I was found to have "ventricular ectopics" - which, although I had 4,000 episodes in that period, was not dangerous and went away eventually a few months later without needing treatment. Certainly helped me to know that, though,by ruling out anything more serious.

[FlipperTD in reply to Cherylclaire]

Hi!

My guess still remains that there's been an error in the process somewhere and it's 'crept out'. Laboratories [well, NHS labs in the UK] have very sophisticated error-trapping routines. I don't doubt in the least that juanpablo is suffering from something, but I'd be surprised if B12 had anything to do with it. Then again, I'm a scientist, not a medic...

[Cherylclaire Forum Support in reply to FlipperTD]

We can say that it is likely that there is no 0 reading to be had from a living person but what we can't now say is what juanpablo111 's level actually was, or whether he was B12 deficient. The opportunity has gone.

Since he seemed initially to benefit from this treatment, it is still possible that he was deficient. So best bet would be to continue with that while also looking for another cause.

[FlipperTD in reply to Cherylclaire]

You're absolutely right, the opportunity to investigate pre-treatment is almost certainly gone; some laboratories archive samples, but the amount of space required for the benefits returned makes that extremely unlikely.

I don't believe the '0' results, from the '0' reported, and also the fact that everything else is utterly normal. He saw an improvement upon starting the treatment. It's now impossible to say whether that was true, or a placebo effect.

I would be overstepping my professional boundaries to discuss this further in this environment.

[phoenix80]

Just a thought, have you had your ferritin checked? Can give similar symptoms to low B12, you might be deficient in both

[Technoid]

I'm curious about your overrange folate. I could be wrong but I'm gonna guess you're not devouring enormous quantities of liver, beans and lentils? Any supplementation? Fortified foods? Sources : nutrients.food-nutrients-ca...

[EiCa]

I am no expert on any of this but read this forum every day. I, too, doubt your B12 is 0. My doctor told me I could die of low B12 when mine was 100. I would respectfully ask if the B12 test could be repeated, I have learned here that B12 supplementing can alter folate levels so I wonder if your folate level being considerably above the high end of the range has masked your B12 deficiency and affected your B12 levels? I may not be postulating this right, but the \ B12 and B9 are so inter-related. It seems you may need high B12 supplementation and to stop any folate supplements for a while. If I have any of this wrong, feel free to correct me (addressing more experienced members of this forum)

[Technoid in reply to EiCa]

The problem with a retest at this point is that after 6 injections, the B12 level will likely be elevated and it will be very difficult to know what the original value would have been. IMO might be worth encouraging the doctor to query the lab as to exactly what happened there.

[EiCa in reply to Technoid]

You're right Technoid. I mis-read the message. I thought this blood work was done AFTER the initial loading doses of B12...so, yes, this result will be skewed. I do think the high folate w/ the (absent?) B12 is suspicious...

[juanpablo111]

UPDATE:

Ended up going to see my GP and all he did was recheck my CBC which is still normal and check b12 and folate. B12 is 659pg/mL and folate is the same (this was 4 days after my most recent injection), also taking a B-complex vitamin daily with 15mcg of b12 . He also mentioned that he's seen 0pg/ml before from this lab as is assuming it is meant to be listed as below the limit of quantification. My migraine is gone and has not returned thankfully, but still dealing with heart palpitations, fatigue, anxiety attacks, and inability to focus. Also forgot to mention that I had an ECG my first time I went in and the doctor said it was normal, but I finally got to look at it and on the sheet it says slight inferior repolarization disturbance. Keep in mind when I got the ECG I was having a severe panic attack and had a heart rate of around 110 so not sure if this tachycardia caused by anxiety resulted in this assessment (I think it's an automated assessment from the machine) . I am going back to review my labs in person soon with my GP and not sure the approach I should take on how to convince him to check other things and what other things should be looked at. Any advice is appreciated.

[Sleepybunny in reply to juanpablo111]

Hi,

Might be worth posting your update in a new thread as responses on older threads sometimes get missed.

Some people find that it takes a while before symptoms start to improve and disappear.

I think that it's a good sign that your migraine symptoms have gone.

[JLB80 in reply to juanpablo111]

How r u now? How often are you having injections?