How Long Until b12 injections work?

Discussion specifically about the diagnosis and treatment of Pernicious Anaemia

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How Long Until b12 injections work?

Postby beecee » Mon Jun 04, 2012 2:27 pm

I'm on 2 months of weekly injections ...low b12 serum, homocysteine was elevated, IF neg/parietal neg(told the IF/parietal are 50% accurate) and have celiac and hashis...clinically diagnosed w/ PA.
dizziness and hair loss improving and not fully bedridden since injections but still having leg neuropathy and fatigue. how long did it take others to get a real substantial improvement to be close to real functioning?
thanks
beecee
 
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Re: How Long Until b12 injections work?

Postby beecee » Tue Jun 05, 2012 3:18 am

been sick for many years...almost 10. diagnosed celiac in 2007 and was close to death. slow recovery bec was acutely anemic then. can't haveiron infusions or supplements and slowly got ferritin and iron up over about a year or so with cast iron pans andmolasses,and nutrition. but never recovered my stamina, have had dizziness, neuropathy, breathlessness, palpitations and over past year, in bed more than not.
folate was in range, iron is in range, but my ferritin never gets above around 20ish....hematogist dismisses ferritin level because iron is fine.
since injections, dizziness has improved, and able to be out of bed most days but still sleeping a lot and when the fatigue hits it's simultaneou with leg muscle pain/burning/tingling.
dr said will take about 3 mo to know impact of injections...clearly it's some improvement but i'm wondering if i will ever regain stamina.
been tested for almost everything. no one put together PA despite having hashis/celiac/and untreated h pylori from 2003 to 2007....and i'm hoping i can regain health. getting tested for diabetes with A1c test (glucose ok)to reassure myself bec i keep looking for what else is correlated with these conditions. also wondering if i should go back to adding molasses to up the ferritin and maybe a lot of spinach for folate. can't tolerate supplements and if numbers ok i don't want to over do. but keep wondering if maybe i'm not absorbing something else since celiac and PA are both malabsorption.
also, had a great deal of stress in last 2 months and wonder if i'm not getting full benefit of injections bec the stress may deplete b12. appreciate any thoughts/comments....and if anyone else was so sick and fully got on feet again. many thanks
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Re: How Long Until b12 injections work?

Postby Maudy » Tue Jun 05, 2012 9:23 am

I'm a firm believer in the fact that stress depletes b12. Definitely.

Firstly, you didn't mention loading doses - usually 6 injections given over the course of a fortnight - did you get these?

Secondly, your doctor seems quite up on things. After asking about loading doses why not ask if you can have injections every other day until symptoms stop improving - that is the guideance given for neurological involvement by the BNF.

Thirdly, you can buy folate over the counter if you need to.

Finally, it does take everybody different lengths of time to improve, but you are not going to improve substantially if you're not on the right dosage.
The loading doses are given to raise your b12 levels to high. The maintenance doses are given to maintain it out of deficient.
Problem is that even if you have one injection of b12 your blood serum levels will go into the high range - however serum levels measure a total proportion of b12 and up to 80% of that can be doing nothing. This is why the experts (and they aren't usually your GP), recommend that b12 blood serum levels should measure over 2,000 all the time.

Let us know what dosages you have had and also any blood levels (including serum b12) that you have had measured together with the ranges.

Hang on it there, it'll get better.

Edit to say - just seen the bit that says you can't tolerate supplements. In what way?
I can't tolerate any supplements (or medication) that has calcium as a filler. That's tri-calcium phosphate, di-calcium phosphate and anything else with the word 'calcium' in it. I have to search out supplements that don't have these fillers.
Mine is due to the fact I have low stomach acid which makes it an alkaline stomach which makes digestion a problem. Not going to complicate matters by going into it now, but what are your symptoms?
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Re: How Long Until b12 injections work?

Postby JDee » Tue Jun 05, 2012 5:14 pm

Hi bcole and :text-welcomewave:

You sound like you have been through quite a bit already and you obviously have a fair bit of background knowledge.

Most of us won't accept 'within range' as an acceptable answer anymore. You would do best to get your blood test printout as suggested to make sure your levels are 'good' not just scraping through into the reference range.

Take care
Jac
Both of my parents were diagnosed with PA. Mum is on 2 monthly injections and relatively OK. Dad progressed to dementia and sadly died 14/2/13. Despite my own levels being 'normal' I have some symptoms. Jac.
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Re: How Long Until b12 injections work?

Postby beecee » Wed Jun 06, 2012 12:54 am

First, i'm very grateful for the support and info. here's the data (and other tests run but i included what i thought was relevant):

Mar 29 April 9 May 7 Range Notes
b12 330 275 499 200-1100 pg/mL
folate 16.1 24 normal >5.4 ng/mL
MMA 222 235 114 87-318 nmol/L
Homocystein 17.0 9.9 9.9 5.4 - 11.9 micromol/L
Reticuloycyte 1.1% 0.5 - 2.2%
46,310 20,000-80,000 cells/mcL
iron 160 82 181 40-`60 mcg/dL ate red meat2x/day+4Tablespoon molasses
from Jan-Mar to raise ferritin
Tibc 405 397 400 250-450 mcg/dL
Ferritin 25 31 25 10-232 ng/mL
Copper 199 70-175 mcg/dL

Began Weekly injections 4/9 after the blood test.
I feel like I fade toward end of week and dr says it's "impossible" it's related to injection. I have been thru so many dr's, and this PA seems like when i finally got diagnosed for celiac...so many dr's think they know about the disease/symptoms and are ill informed and don't connect the dots and think things thru. I've heard/read about loading doses of daily injections but didn't know this was common.
I need a dr who really knows about PA, and has treated lots of patients. Any suggestions for dr in US? if not, any dr in UK who will do a tel consult? any suggestions how to find dr? i've been reading www.pubmed.com looking for dr's who have done research and not really finding anyone.
Thoughts???Comments? and many thanks - this is an awesome site.
beecee
 
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Re: How Long Until b12 injections work?

Postby beecee » Wed Jun 06, 2012 1:03 am

sorry, tried to line up data and when published it all ran together.....

will list in this format to help reading/comments:

March 29- data + "normal range"
b12 330 range 200 - 1100 pg/mL
folate 16.1 range >5.4
MMA 222 range 87-318 nmol/L
Homocystein 17.0 range 5.4-11.9 micromol/L
iron 160 range 40-160 mcg/dL
tibc 405 range 250 - 450 mcg/dL
transf sat 40 range 15-50%
ferritin 25 10-232 ng/mL

April 9 (began shots after test) - range listed above
b12 275
folate 24
mma 235
homocycstein 9.9
iron 82
tibc 297
transf sat 21
ferritin 31

May 7
b12 499
mma 114
homocystein 9.9
reticulocyte 1.1% range 0.5-2.0%
46,310 range 20,000-80,000 cells/mcL
iron 181
tibc 400
transf sat 45
ferritin 25
copper 199 range 70-175 mcg/dL

appreciate any comments/thoughts....sorry for duplicating, just trying ot make it easier to read
beecee
 
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Re: How Long Until b12 injections work?

Postby kimks mom » Wed Jun 06, 2012 1:26 am

Hi bcole,

You have done well to get your homocysteine level down....apparently the injections are working despite a low level of 499, however, things seem to have slowed down as your homocysteine level has not dropped further. A level of 7 or 8 would be ideal. You are also dropping in ferritin..do you have a copy of the other test results that include haemoglobin, MCH, MCHC and MCV. Do you take folate supplements...just curious because your folate level is way up, which is good as B12 needs it but unusual if you don't supplement with folic acid.

You should have loading doses. Cyanocobalamin loading doses are 5 injections per week for two weeks, weekly for a month before going on maintenance dosage of monthly. You have two conditions that led to PA, Hashimotos and Coeliac disease.

There is a doctor in the US who does telephone consulations. He is based in Arizona and has a great deal of knowledge about B12 deficiency and thyroidism. He has written several papers, one paper below discusses memory loss.



I don't hesitate to say he is an expert on hypothyroidism and B12. He is a medical doctor but he deals in metabolic medicine which includes B12. The article below mentions Dr. Dommisse:
http://www.transformtheillusion.com/art ... 20B12.html

and this is Dr. Dommisse's website:
http://www.johndommissemd.com/

and from his website, some notes on Vit. B12 deficiency:
http://www.johndommissemd.com/page/368501

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: How Long Until b12 injections work?

Postby Maudy » Wed Jun 06, 2012 7:23 am

Well kiddies, am I the only one to get excited when I see the b12 result and the homocystein in the same chart - in real life!!!!

Look at that. It's a beaut! B12 says she's got normal levels. Homocystein says not. A wonderful example of how the serum b12 can fail to accurately diagnose b12 deficiency. Wonderful!!!

Pretty similar story with the iron. Iron normal range, ferritin far too near the bottom end.

Pat has given you some lovely links to a doctor you can contact. I'm sure he will confirm about loading doses.

Sorry to get excited about your blood test results but here in the UK we wouldn't get the homocystein done. We would just get the serum b12 and be told we were 'normal.'

Try and get the loading doses. I'm sure the doc will help you. But you will take time to repair.
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Re: How Long Until b12 injections work?

Postby beecee » Wed Jun 06, 2012 12:37 pm

had wilson r/o...copper is prob elevated from oral contraceptives (or the going thought)
i'm not comfortable with the arizona dr who had license revoked.....too outside my comfort zone
i'm going to try to locate the dr who wrote the book w sally about "could it be b12"
my question is: can loading doses really make a diff even if on 8 weeks of weekly injections?

also, can anyone explain to me please why the injections can raise the levels, and i'm told that creates long term stores of b12 but i don't feel fully back? i'm getting at how is it we get injections, numbers go up, but then deplete and need injection again? does this mean we use up the b12 quickly and it takes a while for numbers to deplete and reflect this?

also, while it's great the homocysstein was checked, this was all inadvertent. the hemtaologst was thoroughly checking me before a colonoscopy to decide whether to give me pre-treatment for clotting bec i also have von willebrands. i can complain of extreme fatigue, dizziness, neuropathy, hair loss, all day long and they just stare back at me. once he took the test and the low b12 level and elevated homocystein showed up, the endocrinologist says "oh, you probably have PA" like he's a genius...but he never thought to test for it on his own.
oh, i also think the shots are working on some level bec hairdresser told me i'm getting new hair growth.

but mainly, i'm trying to understand a realistic timeline and if i will ever regain stamina. dr said may take 3 mo but a friend w PA told me it took her 6 mo.

please keep the comments coming, it's much appreciated. also, any other dr references? thank you for the recommendation however i just need a little more comfort with a license.

other test:
May 9
hgb 13.5 range 12.0-16.0
hct 41.0 range 37.0-47.0
mcv 93.0 rane 81-99
mch 30.5 27.0-31.0
mchc 32.9 range 33.0 - 37.0
rdw 11.1 11.5-14.5

no supplements (stomach can't tolerate). no folate. i'm also suprised my folate is high.

what also do you make of low ferritin level? i think it's low side of range yet dr's say the stores don't matter as long as iron is high.....i ate red meat 2x/day plus molasses to see if made diff but it was before injections.

lots of questions i've asked....
1. why can i feel depleted days after getting shot when b12 goes up...how does this depletion/absorption thing work
2. would loading dose make a diff even if been on weekly shots?
3. reasonable expectations for regaining stamina?
4. dr recommendations?

thanks all
beecee
 
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Re: How Long Until b12 injections work?

Postby kimks mom » Wed Jun 06, 2012 1:56 pm

Hi bcole,

Pernicious Anaemia patients cannot store B12 because they cannot access the enterohepatic circulation so the myth about stores is just that...there are no stores of B12. You are using all of the injection as it goes to try to repair some of the damage.

Regarding Dr. Dommisse's revocation of his licence, that may be for now but I don't think it will be permanent. In my opinion his problems began with "Quackwatch" because Dr. Dommisse chose to think outside the box and treat people without resorting to drugs. There is another doctor in Wales who is doing the same thing as he has given many of our members methylcobalamin infusions..were he in the United States I am sure Quackwatch would perscecute him as well.

However, I do agree that you need to speak to someone whom you are comfortable with. Sorry, I have no other suggestions.

It is difficult to say when you will pick up and get your stamina back. It can take anywhere from 3 to 6 months and longer for some. It depends on how you respond to treatment and how often you get injections. My daughter self-injects twice a week, three times if she thinks she needs it and she doesn't have any symptoms. She uses this regime to prevent a return of any symptoms. She uses cyanocobalamin but injects subcutaneously and injects only 400 mcg and not the standard 1000 mcg intramuscularly.

The purpose of loading doses is to saturate the body with the B12, to replace quickly the B12 that has been lost. B12 injections will raise the B12 level but then it will also drop once the benefit of the B12 injection has worn off.

Regards,
Pat
I am a support person for my daughter who was diagnosed with PA and Folate Anaemia in 1994, at the age of 27. Another daughter diagnosed with Hashimotos 2010 but she doesn't have PA.
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Re: How Long Until b12 injections work?

Postby beecee » Wed Jun 06, 2012 5:15 pm

http://www.pnas.org/content/104/50/19995.full

can anyone make sense of this? i'm asking because it sounds like its possible to have PA and nuerological symptoms when folate is above normal and b12 low. am i getting this right?
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Re: How Long Until b12 injections work?

Postby anotherwithpa » Wed Jun 06, 2012 6:14 pm

Hi,

It is well known that a high folate intake can "mask" a B12 def..If you are B12 def your bloodcells become to large (macrocytosis), if you are folate def your bloodcells become to large as well. If you give a person a lot of folate it will mean the bloodcells become "normal" in size although a B12 def can coexist and will not show up in a bloodtest as to large a bloodcells...I hope I'm making this clear to you. Most here know it is dangerous to give artificial folate, with out testing serum B12. Also if a body receives a lot of folatte but is actually B12 def the the folate is "trapped" in a form the body can not use, as folate needs B12 to be metabolised into a form the body can take up. The same counts the otherway, B12 needs folate to be metabolised so the body can use it say.

It is therefore not good to take folate tabs if you have not had serum B12 tested first, it is also one of the reasons why some countries will not add folic acid to foods. Also there is evidence that artificial folate stays in the system (natural folate from food not). and it is currently unknown if this artificial folate causes any health problems, althoughthere is some research that implies certain harm..

For me the best article that explains all is this one, see:
http://emedicine.medscape.com/article/200184-overview

I hope I'm making things clear to you,

Kind regards,
Marre.
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Re: How Long Until b12 injections work?

Postby BeeNumber12 » Thu Jun 07, 2012 6:21 pm

Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: How Long Until b12 injections work?

Postby BeeNumber12 » Thu Jun 07, 2012 7:06 pm

Regards,
Dorothy
Please independently check any information or advice, by reading from or questioning reputable sources, before acting on it.
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Re: How Long Until b12 injections work?

Postby Poacher » Thu Jun 07, 2012 7:39 pm

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