B12 Defficiency

[pearsjon]

well i found out i have anemia caused by b12 defficiency. i have to give myself a shot. havn't seen rhuemy again yet but is looking and sounding like malabsorption. we will see.

any one else have this?

[Mrs. Burschman]

Firewoman,

I don't, but I saw a show once on a woman who was having all sorts of problems caused by a B12 deficiency. She got much better after starting the shots. So the good news is, you might get a lot better! We can only hope!

Amy

[pearsjon]

ok took b12 shot and got very tired. coincidental? maybe i will have to see when i give myself a shot next week. funny thing is i got the cramp from you know where and now i am swelling,paralyzing,and muslce pain and bone pain agian. i was sure from what i read it would help these things. i need dguest i think to commment here.

i am going to see if it happens nest week and then i'll know. could all just be a fluke it hapeened at the same time. iknow at dys appt. i was showing hypotension, with increasing heartrate.

so will see. thanks.

[pat57]

this looks like good info

http://www.yourhealthbase.com/vitamin_B12.html#overload

CONTENTS

Vitamin B-12 Deficiency: Incidence and Consequences

Vitamin B-12 Supplementation

Vitamin B-12 and Alzheimer's Disease

Vitamin B-12 and Homocysteine

Vitamin B-12 Overload

Vitamin B-12: Odds and Ends

[Rachel]

Firewoman,

Funny you should mention being tired right after your shot. That happens to me too, but then after two or three days I have more energy. I need to ask my doc about that, but haven't yet.

I don't actually have a B12 deficiency, but my POTS doctor put me on B12 shots because sometimes elevated levels of B12 help the dysautonomia patient. I have found that it does help me a little.

I hope you see some improvements from the shots. It can take a month or more to know if they're helping you because it takes a while for the B12 level to build up in your body.

Rachel

[flop]

B12 levels take quite a long time to respond to the injections and rise back to normal levels. In the UK if a patient is B12 deficient they get an injection of Hydroxocobalamin 1mg three times a week for 2 weeks and then once every 3 months to maintain B12 levels. Doctors in the UK used to prescribe Cyanocobalamin which had to be given more frequently but it is now not a recommended medication any more (my Gran was delighted when her monthly injections changed to just 4 shots a year).

What preparations of injectable B12 are members using?

Flop

[Rachel]

Flop,

I'm taking Cyanocobalam 1000mcg injections once a month. Is this the same as Cyanocobalamin? Why is it no longer recommended? I'll be going to the doctor next week, so I might see about getting my script changed if that would be best.

Rachel

[Ernie]

Hi,

I took the shots for 3 years and during the first year it gave me so much energy that I could not sleep the first night.

After 3 years it did not work anymore.

[flop]

Hi Rachel,

I got the information from the BNF online (British National Formulary) - you have to register to view it online but it is helpful and is the prescribing guide that doctors use here in the UK. The cyanocobalamin has a symbol next to it that means "not recommended for prescribing" and there is a statement saying that if a doctor prescribes "Vitamin B12 injection" rather than by name the pharmacist must give hydroxocobalamin not cyanocobalamin.

I've cut-and-pasted the whole section on megaloblastic anaemias but I've put the relevant bit in bold so you can skip the rest if you want.

Flop

9.1.2 Drugs used in megaloblastic anaemias

Most megaloblastic anaemias result from a lack of either vitamin B12 or folate, and it is essential to establish in every case which deficiency is present and the underlying cause. In emergencies, when delay might be dangerous, it is sometimes necessary to administer both substances after the bone marrow test while plasma assay results are awaited. Normally, however, appropriate treatment should be instituted only when the results of tests are available.

One cause of megaloblastic anaemia in the UK is pernicious anaemia in which lack of gastric intrinsic factor resulting from an autoimmune gastritis causes malabsorption of vitamin B12.

Vitamin B12 is also needed in the treatment of megaloblastosis caused by prolonged nitrous oxide anaesthesia, which inactivates the vitamin, and in the rare syndrome of congenital transcobalamin II deficiency.

Vitamin B12 should be given prophylactically after total gastrectomy or total ileal resection (or after partial gastrectomy if a vitamin B12 absorption test shows vitamin B12 malabsorption).

Apart from dietary deficiency, all other causes of vitamin B12 deficiency are attributable to malabsorption. There is little place for the use of low-dose vitamin B12 orally and none for vitamin B12 intrinsic factor complexes given by mouth. Vitamin B12 in larger oral doses of 1?2 mg daily [unlicensed] may be effective.

Hydroxocobalamin has completely replaced cyanocobalamin as the form of vitamin B12 of choice for therapy; it is retained in the body longer than cyanocobalamin and thus for maintenance therapy can be given at intervals of up to 3 months. Treatment is generally initiated with frequent administration of intramuscular injections to replenish the depleted body stores. Thereafter, maintenance treatment, which is usually for life, can be instituted. There is no evidence that doses larger than those recommended provide any additional benefit in vitamin B12 neuropathy.

Folic acid has few indications for long-term therapy since most causes of folate deficiency are self-limiting or will yield to a short course of treatment. It should not be used in undiagnosed megaloblastic anaemia unless vitamin B12 is administered concurrently otherwise neuropathy may be precipitated (see above).

In folate-deficient megaloblastic anaemia (e.g. because of poor nutrition, pregnancy, or antiepileptic drugs), daily folic acid supplementation for 4 months brings about haematological remission and replenishes body stores.

For prophylaxis in chronic haemolytic states or in renal dialysis, folic acid is given daily or sometimes weekly, depending on the diet and the rate of haemolysis.

For prophylaxis in pregnancy, see Prevention of Neural Tube Defects below.

[Sunfish]

firewoman et al -

you may want to do a search on B12 as i think it has been discussed in the past several times. i have been on B12 injections for about 2 yrs now due to a measured deficiency, likely related to my severe GI motility issues, malnutrition related to insufficient intake, malabsorption, etc. i was then started on what is the most typical protocal (in the US at least) for B12 deficiency which is 1000mcg weekly (same as 1mg for anyone to alleviate confusion) for weeks followed by monthly injections. after about a month i did notice some improvement in my sensory neuropathy issues (numbness, tingling, burning, etc in my extremities). i still have it some but after starting the shots it returned to where it had been about a year prior and symptomatically that issue hasn't continued to decline like much of the rest of my autonomic/ neuropathy issues. so it certainly wasn't life-changing for me but it was VERY nice to have improvement in that arena as at least that symptom is generally an annoyance for me rather than intermittantly disabling (as it had been for several months prior to discovering the deficiency).

my neuro (autonomic specialist) decided to increase my dose to 4000mcg monthly (or 1000mcg weekly) for maintenence to to perhaps help my autonomic issues further. that didn't bring any notable improvements but of course there's no way to know if i'd be worse off if we hadn't increased the dose & all of my docs agree that it certainly won't hurt anything and as it's quite cheap i don't see any reason to play with the dosing. during acute medicial crises, i.e. in ICU, a shot may get missed on occassion, but generally i give myself a 1000mcg IM shot weekly. b/c of limits on how much can be injected at once if i did it monthly i'd have to do 3 shots at once anyway so that doesn't really have an advantage (though it did initially when i had to get to the doc's office for the injection).

cyanocobalamin is what i use & my understanding is that it is standard in the US. i've had numerous docs/ hospitals/ homecare companies involved at least peripherally since i've been on the injections & have never run across another option. i'm not losing any sleep over it but am curious about why it's not the preferred form in the UK? anything other than the timing issue?

rachel i THINK that cyanocobalam is synonymous with cyanocobalamin but am not certain so don't hold me to it!

i've never felt any different systemically after an injection - whether given to me by a nurse/ doc or by myself. every so often i think a nerve gets hit & it hurts more than normal but in relation to other injections i've been on over the years (WAY too many) it's a low on the bothersome scale (compared to procrit, heparin, lovenox, some vaccines, etc). i'm only occassionally sore/ bruised after, it doesn't burn going in (or after), etc.

i honestly can't think of why the injection would bring on any sort of fatigue, though as flop mentioned i wouldn't expect most people to notice anything positive after one injection either. i realize that there are MANY things we don't understand though so don't dismiss the fact that the fatigue could be possible. the only thing that did cross my mind is the possibility that an injection could cause an adrenalin rush for some & that the fatigue would thus be a result of that rather than what is actually injected? hope my throwing this thought out there doesn't offend. i would see it as more likely if someone were particularly apprehensive/ adverse to needles but perhaps in those who struggle with frequent adrenaline rushes/ surges from many stimuli it could happen without any conscious knowledge?

ok...B12 ramblings over....

melissa

[Sunfish]

flop -

thanks for the info. we were (yet again) posting concurrently .

it appears that the half-life/ duration is the substantive issue in the preferred forms. fewer injections would be particularly helpful for those who have to get to an office for the injection (if not able/ willing to inject oneself) but it's nice to know that the preference doesn't seem to be an issue of medicinal efficacy.

i'd of course love to have to give myself fewer shots too but am guessing the longer-lasting form is more expensive & as i generally have to either fight for insurance approval for injected meds or simply pay out of pocket (if the cost is low the fight isn't worth my or my doc's time or energy) it's not a switch that would fall high on my priority list at the moment in the midst of a million things. why my insurance makes a stink about paying a mere $4 for a bottle of B12 that will last me over three months when they wouldn't question someone giving me the injection in an office which would cost WAY more is beyond me but ah well. the mysteries of the health care system.

melissa

[Rachel]

Thanks Flop and Sunfish for the info. I don't have time to read it all thoroughly right now (We're about to continue my son's birthday party! ), but I will be reading it soon. Thanks for taking the time to share.

Rachel

[flop]

Melissa,

I have no idea what the prices of B12 injections are in the US and the BNF prices are what it costs the NHS in the UK not what a private patient would pay - but cyanocobalamin is ?1:67 for 1mg and hydroxocobalamin is ?2:46 for 1mg, works out cheaper if you only need 1/3 of the shots.

I have no understanding of healthcare pricing and politics, I guess each country comes up with it's own guidelines??

Flop

[icthus]

I've been on B12 injections (self-inject) since around 1996. This year I skipped about 4 months. After figuring out that I was getting so tired that I was taking spot naps and becomes a zombie, I remembered I stopped B12. Back on them, and doing much better. Prescribed by neuro for dysautonomia etc. Also, because I am now reacting to the shots, I have to break up the shot into 1/2 dose 2x/month so I don't get so wiped out. The split dose works better for me.

[Rachel]

Melissa,

I thought it strange too that I would get tired for 2 days or so after a B12 shot. I certainly am not anxious about them. The B12 shot is one of the easiest things I go through and needles don't bother me. So I don't think an adrenalin rush could be the culprit. At first I thought it was just a coincidence that I was tired for a couple of days after the shot, but after it kept happening I thought that it must be the shot. I'm not really sure why, though. I'll have to ask my doc what he thinks.

Icthus, you said that you are now reacting to your B12 shots and have to do a split dose. Is your reaction one of extra fatigue for a day or so? And the lower quantity helps to alleviate that?

Rachel

[pearsjon]

i am glad to find out i was not the only one getting tired. i am going to monitor next shot friday to see if it happens again. did anyone have bone pain start after the b12 shots? i am at 5 days after 1st shot and am experiencing alot of bone pain. i think i need dg here.

day one of shot- got tired, awoken that evening with charlie horse bad, that lead to contracture for the next day and could barely walk.

day2-wlaking was painful and a chore

day3- muscle contracture let go

day4-a little bone pain and i am still tired

day5-alot of bone pain and nausea

i don;t know whats from b12 ND WHAT'S FROM dys. and it appears to be standard prtocol as for dosage. i am hoping it was just fluke it all hit me after shot. we will see friday.

but my main concern is the bone pain and nausea. i think i will contact prescribing dr. and let her know.

thanks for all your help yall.

cyanocobalamin 1000mcg IM once a week for amonth then once amonth.

[Eli6596]

Hi,

After I spoke with our hematologist at my clinic a few years ago, I changed from giving B12 shots to giving B12 1000mcg orally daily to my patients. If the level is very low, I will give the shots until the level is normal. I then change to the pills and recheck a level to make sure the pills are keeping the level normal. There are studies to support this. If you google vitamin B12, I bet you could find them.

Karyn

[Sushi]

I just had blood tests results that show I can't utilize either B 12 or Folate, no matter how much I take. I have been supplementing them for years and still test low. It seems to be related to some mutations in the genes involved with the methylation cyle in the cells. One of the ways to get around it is, (at least it was prescribed for me) the other form of B 12--hydroxocobalamin. (hard to read the small print). Also I've been given another form of folate (L-5-methly tetrahyrofolate), Intrinsic Factor and a couple of other things, the idea being to very slowly re-activate the methylation cycle which is, at present, blocked.