VB12 deficient & allergic reaction [Archive]

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mooki59

10-26-2006, 07:07 PM

Hi everyone,
I was dx'd with a B12 deficiency about 6 months ago. I have Hypothyroidism which is causing it.

I started out taking a Multi-Vitamin but my levels did not raise but dropped. The first test was in the 200 range. (I forgot the exact #). Evidentally my body lacks the intristic (sp?) factor and does not absorb B12 by way of my stomach.

So the doctor had me add B12 liquid (with B6 & folic acid in it) taken sublingually. Within 2 weeks my mouth was filled with blisters. My tongue was raw, I had ulcer on under my tongue, on the inside of my cheeks and on my lips. I was miserable. She took me off of it immediately and gave me medicine to heal my mouth. My B12 levels dropped again.

Two months ago she started me on IM B12 injections (once a month). After the first one I started itching around the injections site and over all my joints. It wasn't horrible but enough to make me change my soap and lotion. :-)

Then last month she gave me another shot and I was miserable. I started itching at the injection site, the itching increased and spread to cover my whole body. I broke out in hive and little blisters all over my skin. I had to have a shot of cortesteroids (sp?) and tablets of predisone and antihistamine. As long as I took the tablets I didn't itch for 2 weeks. Then I was ok.

Today I went to the doctor and she gave me another brand of B12 subcutaneously in a test amount. I immediately broke out in a welt around the injection site and a blister rose up.

So evidently I'm allergic to B12 or some component in it. Has anyone ever had this happen. One doctor in the office says he's been practicing for over 40 years and has never seen it. My doctor says she never has either.

I'm due to have my shot on Monday but I can't have one. My doctor says I HAVE to have the B12. But they can't afford the risk of my having an anaphalytic (sp?) reaction to increased exposure to it.

Their course of action next is to send me to an allergist to have them figure out what component or if it's the B12 itself I'm allergic to so we can make a decision from there.

If they can't find an answer what will happen to me without getting B12 replacement? What would be the next step?

Sorry this is so long....but I appreciate any answers.

mrsdoubtfyre

10-27-2006, 01:41 AM

get welts when ANYTHING is injected. This is a hive response.

Some people also cannot tolerate cyanocobalamin version of B12, but that is
not very common. Cyanocobalamin is an artificial substance.

Your alternative is to use oral swallow methylcobalamin and see what happens.
Local irritation from sublingual products, can occur with some people. YOu do not have to use the sublinguals that way, you can swallow them.

Without knowing what you are getting by injection..the contents of the product could be irritating to you. Sulfites, for example, as preservatives, etc.
You need to have the manufacturer's name, and look up all ingredients, including preservatives, etc. It is not likely you are allergic to B12 itself. It is most likely the vehicle delivering it.

Do you have sensitive skin, allergies to other things?

Cry Tears

10-27-2006, 07:17 AM

I am very sorry you are struggling big time. You must be exhausted on top of frustrated with this.
I too suffer from B12 deficiency...don't ever want to suffer all the ailments that went with it shortly after my levels continued being low at 232.
I couldn't even groom myself...had someone help me with that and brush my hair.
It was a viritual nightmare....the Peripheral Neuropathy was nasty!
The other health issues that goes along with B12 deficiency can be deadly.
I feel I was close to dying.....long story...but if you'd like just read mythreads/post to read my story.
There is life ahead for you once you get your levels up a bit.
I too have Hashi Motos...had no idea its caused by a B12 deficiency???. Interesting! My mother has Hashi motos...as does many in my family.
She began suffering from Alzheimers a few years ago...but now I'm wondering if this is really only a B12 def!:eek:
She's taking it faithfully...finds the Tri-Vita formula easier for her to take as she's too forgetful...as am I!

I've had severe negative reactions to so many medications.
1st was my baby shot which I received when I was 3 years old....
They thought it was the "mobile" used in the injections...so they repeated them a few months later, this time my other "rump" was injected.....
I woke up screaming "Bee sting me"....They had to make emergency inscision on my very large welt....I still have 2 very deep scars on my hips where they lanced and drained the large "cyst" that had grown where I was injected. They did a few more scratch test and my arms swelled up....definatly allergic to Tetnus Toxid horse serum! I have a terrible needle phobia...but only when on recieving end...can give 'em..but cant take 'em! Odd!
I've also had some weird reactions to other meds....Anaphalactic shock to "iron infusion"...that was terrifying!....Even though I was in the hospital,they took me down to the ER....new nurse did NOT have the antitodote ready,lied to me that it was ready prior to test dose...she got fired! Nearly killed me! 20% allergic rate on that.
A few other meds have caused many problems...even am allergic to IV Benedryl....lost all muscle control.
Compezine....I saw birds and moths flying around the ER....
I see dead people when they give me Morphine...too scary!
Won't ever take that again...never!
I've woken up during one surgery and one procudure during anesthesia.

I take the Methyl cobalamin 1,000 mcg's sublingual ....brand: Jarrow.
I also give myself Cynocobalamin injections twice a week...such fun!:D
When I give myself the injection it leaves a lump and is pink.But I do this sub-que....just under the skin. The Cynocoblamin is pink..so thats why the color. It does leave a very hard lump each time...then turn purple a few days later.
It NEVER itches and NEVER feels hot of uncomfy. I'm very good with needles, injections by experience as working in the hospital lab as a Med Phlebotomist, aka "flea"....drawing blood samples and GTTs and other testings.
Since B12 is in your food.....I'd have to say its the mobile used in making the B12 liquids....and the sublingual must have other things you're allergic to as well. But this is only my opinion and I am NOT formally medically trained outside Phlebotomy and my mother being an RN.
Have you tried taking the sublingual only a tiny bit at a time and rinse/swallow immediatly aftwards?
My husband had mouth cancer and radiation "treatments"....he actually can get another "cancer" on his tongue when he eats pineapple.
Things often burn his mouth as its very sensitve.Things that shouldn't cause problems surprisingly do....just too weird!

You must find an answer to this dilema and find a way to get the B12 in your system. You will feel so much better once you do.
Keep trying....keep searching....keep asking till you find answers.
Please keep us posted....the people here on BT really do care deeply.
It feels like family!:) ....the good kind of family...not disfunctional ones!:D
Blessings, Cheryl
PS....I'm sending you a boquet of cyber flowers from my garden! Enjoy!
(Dahlias,they grow like weeds here in Oregon....well almost)

mooki59

10-29-2006, 05:15 PM

Thank you for the flowers they are beautiful! And so is the child holding them! How proud you must be of both. :-)

I am seeing an allergist on Thursday to see what the problem is. I had a subcu test done at the doctor's office last Friday to see if I could take the Methylcobalamin (my last shot was Cynocobalamin). The test showed an immediate reaction. Red, welts, itching & a blister.

If it is a preservative or something in the compound as opposed to the actual B12 then I guess the allergist will find out what it is. My regular doctor is hoping if we can identify what it is then maybe we could have a pharmasist make a mixture up without the culprit in it.

I do not have allergies as a norm and am otherwise healthy (except for the HypoT).

Sounds like you have had a rough go of it yourself. I wish you well. I can't imagine having been through what you have. {{{{HUG}}}

annie

10-29-2006, 11:16 PM

i didn't notice this until after i posted about pineapple, sorry.

yes i did have a major reaction to a B 12 shot about five years ago, in the clinic. they thought i had a heart attack but i didn't. ever since then i get major palpatations if i take any form of B 12.

my level is holding around 200 now. i don't have PN.

my primary care doctor doesn't see any problems. i saw a hemotologist once over the blood clot but have not seen another. they all think 200 is normal.

i have not known what to do. i eat a lot of boiled eggs.

mrsdoubtfyre

10-31-2006, 12:36 PM

Rose's website (it is in Useful websites) above.

annie

10-31-2006, 02:44 PM

Rose's website (it is in Useful websites) above.

can't find it. she did a lot of research i know when i had the original problem five years ago.

rose

10-31-2006, 09:12 PM

Have you tried 1000 mcg per day orally? Just B12, and not the other vitamins. Your docs probably don't know that 1000 - 2000 mcg per day orally (just swallowed!) is as good or better for almost everyone, including those with severe malabsorption.

Make sure while at my site you check out the page regarding different kinds of B12. Not much there yet, but what is there might be helpful. You are probably getting cyanocobalamin.

Ask further questions in this thread so we can keep track of the information.

rose
My site as it is so far. Quite a bit of information on it, but there will be more and more. http://roseannster.googlepages.com/home

rose

10-31-2006, 09:15 PM

The most likely reason I can see for having heart symptoms after the B12 is that you need it desperately and your body is trying to repair itself. Some people go without B12 to the point that they are so fragile that even the change involved with repairs will kill them. You must not get there!

If you want to eat something that will be likely to help, and if you will not take B12, eat liver----lots of it! Chances are you get nothing from the eggs. If you could, you would almost surely have plenty of B12.

rose

annie

11-01-2006, 12:20 AM

yeah, you told me before to be real cautious if the B 12 was giving me heart problems. every form i tried did it, including trader joe's. you were in correspondence with them over it, this was going on in november and december of 2003. i still have five different bottles of B 12 sitting on top of the fridge.

what i don't understand is why the walgreen's multi vitamen doesn't bother me.

there is no doctor involved in this. the county clinic got so panicked over the whole thing they discharged me and won't accept me back. my primary care doctor says that my B 12 is normal. 200 last year. when i had surgery a year ago they sent me to a hemotologist in another county, extremely difficult to get to, and he had no interest in my B 12 at all. he said that he checked my clotting for a particular mutation, which i did not have, so my blood was perfectly normal and i should go away and stop worrying.

i don't do well with doctors. ever.

liver gives me diarhea.

i get a certain headache that three boiled eggs cures. once dr. carmel fed me a radioactive egg and traced it. i digested it correctly and then after it was in my blood it dissappeared.

i am reading your site.

rose

11-01-2006, 12:29 AM

The multivitamin dose of B12 is probably too low to help you so too low to give you the symptom that I'm hoping is evidence of your body attempting to repair.

If all else failed and I were the one person who could not take any form of B12, I would build up to the maximum comfortable dose of betaine with meals and also take intrinsic factor with meals containing plenty of meat and dairy.

I assume they still make intrinsic factor. It is taken from the stomach of an animal, probably a pig.

Of course, the other alternative is to eat animal stomach lining and betaine with meals.

I'd certainly prefer the B12, but I am not one to say there isn't a situation so rare that a person can't take any of the B12 formulations, regardless of what it is combined with.

Perhaps a compounding pharmacist would create a really pure form of methylcobalamin for you and you could either inject or drink it.

rose

rose

11-01-2006, 12:34 AM

http://www.luckyvitamin.com/755571019509.html#
Here is one place one cal get the brand the neurologist who diagnosed me treated me with. I guess it was quite new then, and it was only available through health care practitioners.

When I found that at least 1000 mcg per day methylcobalamin was better, I switched.

Good luck!

rose

mrsdoubtfyre

11-01-2006, 01:41 AM

never heard of this!

annie

11-01-2006, 02:07 AM

never heard of this!

nobody had, and when i tell people now they say i imagined it. he may have invented the test right then and there.

he took powdered egg and mixed it up with something quite nasty and fed it to me. then they traced it for oh a couple of hours i think. he called it an egg-schilling test. this was about 15 years ago, so i am a bit hazy on the details.

mostly i remember getting violently sick on the bus going home.

he did bunches and bunches of different tests on me.

i had orthopedic surgery at county/USC hospital in 1989 and lost 5 pints of blood, just kept bleeding merrily away for five days before it finally stopped. rather upset the hospital. i am used to it, everything makes me bleed, i never die. i got referred to hemotology.

dr. carmel kept telling me that i had interesting blood, that nothing he was doing would do me any good but would help science and do good for other people down the line. if i can do good for other people just by having some blood tests every three months, seems like a small price to pay.

rose

11-01-2006, 05:55 PM

The one that he did was the protein-bound one.

The one without protein (just the crystaline form of B12) is to see whether you lack intrinsic factor.

The second one (with the B12 bound in protein) is to see whether you can absorb B12 from food.

Yes, it is radioactive.

And, of course, if you were becoming progressively less able to absorb B12, the result would likely be very different now. But now the standard is to check for antibodies to parietal cells and intrinsic factor. Even those tests do not detect 100%, but they're much better than the old ones.

rose

annie

11-02-2006, 02:43 AM

i posted a reply to this earlier and it disappeared. maybe the forum doesn't have enough intrinsic factor to absorb a new message?

glad that i did not imagine the entire egg schilling test, sometimes i begin to doubt myself. this would have been oh sometime between 1990 and 1994 probably.

he did lots of tests where they gave me a shot and had me collect my urine for 24 hours. once he gave me a shot and traced it from the shot for a couple of hours, said that the B 12 had sunk without a trace.

he kept taking lots of vials of blood from me and sending them to bethesda maryland, which i thought was very odd since i have never been out of california. strange to have your blood go someplace without you.

apparently i do have normal intrinsic factor, just the rest of me surrounding it is weird.

if i have to have things go wrong with me i wish they would be ordinary.

rose

11-02-2006, 05:27 PM

What makes you think you have normal intrinsic factor?

rose

annie

11-02-2006, 11:15 PM

good question.

dr. carmel told me so 15 years ago.

rose

11-02-2006, 11:55 PM

that says nothing about now or even months or years after the test. You could have been beginning to malabsorb then, and in the following years you could have lost intrinsic factor.

The Schilling test then says nothing about now, unless it had been positive for lack of intrinsic factor, in which case you still would lack it.

rose

shirley

11-03-2006, 03:33 AM

Ask your doctor if you can take benadryl one hour before your injection to stop the reaction, if it is that severe. Many of the patients I see coming from my boss's immunotherpy injection room have the site swelling you are talking about. They just keep on going. If there is no systemic reaction, shortness of breath or wheezing there is no reason not to continue your injections, just wait for 30 minutes after to be sure the reaction is not going to get worse and consider it a side effect and ask you doctor for an epipen script so you can bring an epipen with you if they do not have it in their office.

annie

11-06-2006, 03:29 AM

what can i say to my doctor to convince her that i need all these tests? she thinks there is no problem with my B 12.

if she finds a problem she is going to want to give me shots. how do i convince her that there is a problem with shots without going into cardiac arrest in her office?

i never take any meds she wants me to take because i always have strange reactions to stuff.

they want to do surgery and i am absolutely refusing until someone starts taking my blood seriously. they think i am imagining things. i am not willing to die to prove that i am right.

i really really do not know how to talk to doctors.

rose

11-07-2006, 12:47 PM

It is unfortunate that even good ones like this emphasize older people while so many young ones are disabled unnecessarily. The emphasis encourages the false belief that only older people need be considered.

But this one would teach most docs a whole lot, and it is from a source they would not be likely to argue with.

http://www.aafp.org/afp/20030301/979.html

This is one of only a few citations on my site so far. I am extremely picky. http://roseannster.googlepages.com/home

rose

annie

11-07-2006, 04:16 PM

well i have been an older person throughout this entire experience and no one is considering me but you.

when i was referred to hemotology i was 52. i am now 67.

some time later:

i have been reading the AAFP link, that is a real good source of information.

now i see another problem, or at least i understand another problem. they always point out that i don't have any symptoms so there is no point in treating me. and i don't have any of their symptoms. what i do get when i get down around 200 is that all i want to do is sleep. i wind up sleeping 12 or 14 hours a day. very boring and makes it difficult to get anything done.

i want a different body.

rose

11-08-2006, 12:20 AM

So true, the few "typical" symptoms are not really very common, much less typical. Too bad most of them don't have a clue.

Here is a partial list from Goldman: Cecil medical textbook

TABLE 163-4 -- NEUROPSYCHIATRIC ABNORMALITIES * THAT MAY BE CAUSED BY COBALAMIN DEFICIENCY

Psychiatric Abnormalities
Paresthesia
Depression
Impaired vibration sense
Paranoia
Impaired position sense
Listlessness
Impaired touch or pain perception
Acute confusional state
Ataxia
Hallucinations
Abnormal gait
Delusions
Fatigue Insomnia
Memory loss
Apprehensiveness
Disorientation
Psychosis
Obtundation
Slow mentation
Decreased reflexes
Paraphrenia
Weakness
Mania
Decreased muscle strength
Panic attacks
Romberg's sign
Personality change
Increased reflexes Suicide
Spasticity
Babinski's sign
Lhermitte's sign
Urinary or fecal incontinence
Urinary urgency or nocturia
Impotence
Abnormal smell or taste
Decreased vision or optic atrophy

*These abnormalities may be present in any number or combination in a given patient. They are seen frequently with or without any of the hematologic or other abnormalities listed in Table 163-3.

[emphasis added]

And 50 is not considered old by many. And by the time you're "older" they assume you're just old. AAAARG!!

Mmmmmmmmmmmmmm. Thanks for the hugs and chocolate!

rose

kylies

12-05-2007, 06:23 AM

Hi there my name is kylie i was told that i have a B12 deficiency. it started 6months ago when i started feeling constantly tired. My doctor did a blood count - my B12 levels were at 196. I took B12 tablets (1000mgs) orally each day.
Six months later i had a blood count again - my levels had dropped to 146. My levels are currently at 96. Last week my doctor gave me my first B12 injection which caused swelling in my throat. Today I was tested for an allergic reaction to the B12 injection and yes, my throat swelled again.
I'm very frightened because my levels keep dropping no matter what I do. The last thing my doctor told me was 'if you don't have B12 then you'll die'.
I don't know what to do ....?????

annie

12-06-2007, 01:58 AM

guess it is time to post an update about my B 12 allergies.

i finally got to the point where i could not tell a difference between being asleep and awake. not functioning at all. this means my B 12 is below about 175. been here before.

so i decided that if either the problem or the cure was going to kill me, better the cure. went to iherb and bought some jarrow methlycobalisin 1,000 mcg.

the walgreen's multivitamin i take has 8 mcg in it.

started out small, quarter pill, 250. this didn't do anything strange to me so i went up to half pill, 500.

palpatations. erratic heartbeat. had taken it in public so just sat there for several hours until it subsided. i live alone and i ALWAYS take a new pill in public the first week.

went back to 250. no problems. have now been taking 250 a day for about two weeks. so far so good with the heart problems.

i have lost 15 pounds, probably all water. my extremely swollen feet and ankles are going down to the point where i can get into shoes four sizes too big. have been wearing men's sandels for several years.

i am either awake or asleep. sleeping ten twelve hours a night, but awake when i am awake.

so some good things are definitely happening.

while i am sure that the medical tests and proceedures are very helpful, they are not available to many of us who are low income. sometimes i get very depressed reading about all the wonderful medical care many of you take for granted.

then i think about the drug reactions i have had and those in hospital infections people are getting and the fact that more people are dying from medical errors than AIDS and i think maybe i am fortunate that i can't afford all that medical care.

kylies

12-11-2007, 08:07 AM

hi paul thankyou for the reply,
i think that all of these test have been done, i have a great g.p who is very good with my b12 he recently did the active b12 level and it showed very low.
i suffer from a bacteria infection in my stomach, which now he thinks is whats causing all my problems but the thing is, is that i have taken these course of antibiotics that were recomended to take for this spisific problem, but they continue to not work.
This week i started to take them again to see if it makes a difference. i will keep you posted on what happens from here.
Thanks again for your advise i will deffinantly look into it
big kisses for you..................

annie

12-14-2007, 02:08 AM

Well, perhaps i should have been more specific about my medical care.

i live in los angeles, have medicare and medicaid. few doctors are willing to accept medicaid. those that do accept it are rarely willing to write the letters and do the endless paperwork required to get paid for anything non-standard. i do have a primary care doctor who i see for fifteen minutes a year. ten minutes of this are taken up by medical history, temp, blood pressure, etc.

my B 12 reaction happened at a county hospital clinic. here i saw an intern for five minutes a year. now it is in my chart that i am imagining the whole thing. interesting that this appeared in my chart the day after i nearly died on them from an allergic reaction to a shot.

none of these doctors are going to read anything i hand them. the younger ones will never admit that there is anything that they don't know. the older one knows all too well how little she knows, but does not have the time or ability to do anything about it unless it is going to kill me immediately.

different world.

envy is my worst vice.

LadyCAD

01-22-2009, 03:42 PM

Wow and I thought I was all alone out there in being allergic to b12, Ive had doctors tell me its not possible, one was a blood specialist. All that the original message went through so did I. My b12 was between 150-200 due to a gastric bypass and bad absorbtion rate. Im still struggling with it. B12 is naturally occurring in red meat, I looked a long time to find an answer to a natural form of b12 but to feel better I basically have to eat red meat 3 meals aday and although I love a good steak, thats ALOT of red meat. My doctor tried the shots, well shot, but the reaction was so severe, she refused to give me another one. Then I tried the under the tongue pills and within an hour my mouth was full of ulcers. Taking pills, I can only take them about once every week, if I take more I start to itch and get a headache and react very badly to it. Im not sure what my current doctor is going to treat but shes run tons of tests to try to get a handle on my health issues. The fatigue is the worst for me, I use to be bouncy and energetic, now Im lucky to get through the work day of 8 hrs. I hate that other people are going through this but its good to know Im not quite so alone out there.

annie

01-23-2009, 02:40 AM

Wow and I thought I was all alone out there in being allergic to b12, Ive had doctors tell me its not possible, one was a blood specialist.

Doctors don't know anything except what they know.

You probably were not allergic to the B 12 but to something else in the mix. They are not going to tell you what the preservative in the shot is.

My doctor tried the shots, well shot, but the reaction was so severe, she refused to give me another one. Then I tried the under the tongue pills and within an hour my mouth was full of ulcers. Taking pills, I can only take them about once every week, if I take more I start to itch and get a headache and react very badly to it.

I think that what happened to me is my body got confused and thought that the allergic reaction was to the B 12 instead of to the preservative or whatever it was. I have been moving very slowly with adding B 12 because otherwise my heart starts getting weird and it scares me.

First get the purest form of B 12 possible. Rose usually recommends Methylcobalicin (spelling not good here) from Jarrow, which states on the bottle that it does not contain anything much but B 12. I have been mail ordering it from I Herb. Which makes me crazy because they make the stuff about ten miles from me but there is no public transportation that I can get there on.

Second start taking it very slowly. The pills come 1000 mcg. I cut them in fourths and took a fourth a week at first. Gradually started taking more and more, when my heart reacted cut back, then after a while increased fourth pill a week. Eventually got up to half a pill a day, which is when I started really noticing a good effect.

On the first of January I got up to taking an entire pill a day. This took me about two years.

Really feeling much better.

Im not sure what my current doctor is going to treat but shes run tons of tests to try to get a handle on my health issues. The fatigue is the worst for me, I use to be bouncy and energetic, now Im lucky to get through the work day of 8 hrs. I hate that other people are going through this but its good to know Im not quite so alone out there.

You are blessed with far better medical care than I have ever had.

Yes, there was a period when I could not wake up. Would go to sleep standing up. Every time I sat down I went to sleep. On the bus. When I was awake I couldn't tell, was dreaming while I was awake.

My house is much cleaner than it was two years ago.

Proton Soup

01-24-2009, 01:32 AM