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Is pernicious anemia low vitamin B12 or Intrinsic Factor

David

Co-Founder
Location
Naples, Florida
I'm confused about pernicious anemia. Each source I read confuses me more. Does anyone know if pernicious anemia is specifically:

1. Low intrinsic factor
2. Low vitamin B12
3. Low iron due to the above.
4. Some combination of the above.

Thank you!
 

kiny

Well-known member
It's 1 and 2

2 is the consequence of 1

You don't produce enough intrinsic factor, your tummy needs intrinsic to bind with extrinsic, to take up the B12, you don't have it, so you never get the B12.
 

David

Co-Founder
Location
Naples, Florida
Now, if I have low B12 because my terminal ileum is inflamed do I have pernicious anemia? Or is that only if I have low B12 because I have low intrinsic factor?
 

kiny

Well-known member
From what I understand, the prenicious anemia is a condition of just not having enough intrinsic factor, and then that's associated with X, Y, Z.

For crohn's it's inflammation, on those spots there should be mucosa, but instead it's replaced by what's under it, just intestin, or mast cells when it starts healing, those don't have the ability to bind with the extrinsic factor so you are considered to have prenicious anemia.
 

kiny

Well-known member
ok, now people are making me doubt what is considered prenicious anemia and what not
 
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It is confusing.
Pernicious (meaning harmful or even fatal) anemia is only one type of B-12 deficiency. Pernicious anemia results from the presence of an autoantibody against intrinsic factor (IF), a protein made in the stomach, that is necessary for the absorption of vitamin B-12 further down the intestinal tract.
If you have an inflamed or resected terminal ileum then you may have B-12 deficiency and all the same symptoms of pernicious anemia, but that condition is not called pernicious anemia, since it doesn't involve the lack of I.F.
 
Also leading to confusion:
Anemia is a lack of sufficient red blood cells. Iron deficiency anemia (the most common type of anemia) is quite different to B-12 deficiency anemia.
 

DustyKat

Super Moderator
Pernicious anaemia is the name given to type of anaemia experienced from a lack of intrinsic factor.

Intrinsic factor is a glycoprotein that is excreted by the parietal cells in the mucous membrane of the stomach. The role of intrinsic factor is to absorb B12 from the food you ingest.

If you have intestinal damage from Crohn's in the terminal ileum or have had your terminal ileum resected you still have the ability to absorb B12 from food but you don't have the ability to absorb that B12 from the intestine into the body.

Dusty. :)
 

DustyKat

Super Moderator
Oops, I mean't to add that pernicious anaemia is the common name give to a lack of intrinsic factor but it in fact refers to the type of anaemia caused by a lack of B12 full stop. So whether your lack of B12 is via intrinsic factor, malabsorption or severe dietary restrictions they are all technically pernicious anaemia.

Now have I thoroughly confused you!

Dusty. :)
 
With due respect, the term 'pernicious anemia' is sometimes also incorrectly used to indicate megaloblastic anemia due to any cause of vitamin B12 deficiency, however its proper usage refers to that caused by atrophic gastritis, parietal cell loss, and lack of intrinsic factor only.
 

Crohn's 35

Inactive Account
:lol: @ Jessi... without being techical I have never had low iron, or enemic. I have low b12 because of two resections in the Ileum. If you have Crohns in that area, most likely you are not absorbing it. I had my b12 shot yesterday and I have a bit more energy but I am certainly not running a marathon :lol: come to think of it I never run (only on the treadmill) LOL
 

DustyKat

Super Moderator
With due respect, the term 'pernicious anemia' is sometimes also incorrectly used to indicate megaloblastic anemia due to any cause of vitamin B12 deficiency, however its proper usage refers to that caused by atrophic gastritis, parietal cell loss, and lack of intrinsic factor only.
I will respectfully agree to disagree.

Dusty. :)
 

David

Co-Founder
Location
Naples, Florida
This is the exact issue I've been facing. I know both of you are extremely bright, well read, and know boatloads of medical stuff. I haven't been reading crappy websites that review tacos, washing machines, and IBD but actual medical texts that give me conflicting definitions which I'm guessing is why the two of you disagree.

Tis' frustrating but kinda funny as well :D
 
Classic pernicious anaemia is defined as having intrinsic factor antibodies. However, pernicious anaemia can develop from; having surgery to any part of the digestive tract; from coeliac disease; and/or crohns disease. It can also develop from chronic gastritis. If your body loses the ability to absorb B12 from a natural process then the resulting anaemia does become pernicious. This is often referred to as B12 Malabsorption however the treatment for pernicious anaemia and B12 malabsorption is the same and the end result of not getting treatment for pernicious anaemia and B12 malabsorption is also the same..death.

Regards,
Pat
Canada Delegate Pernicious Anaemia Society
 

David

Co-Founder
Location
Naples, Florida
Hi Pat!

Welcome to the forum and thank you so much for chiming in :) A couple questions:
If your body loses the ability to absorb B12 from a natural process then the resulting anaemia does become pernicious.
1. Do you have pernicious anemia as soon as your body loses the ability to to absorb B12?

Or

2. Do you have pernicious anemia as soon as you have low B12 because of your lack of ability to absorb B12?

Or

3. Do you have pernicious anemia as soon as your iron levels become low because of your low B12?

Thank you! And again, welcome :) I hope you become a regular part of our community.
 
Hello David,

Thank you for your welcome. Your questions are often asked on our forum and there is no clear answer.

1. Once the body loses the ability to absorb B12 then, in my opinion, pernicious anaemia has developed.

2. You would have to determine first if your low B12 is caused by an inability to absorb B12. For example, some doctors will prescribe cyanocobalamin tablets to swallow when a patient presents with low B12. If you cannot absorb B12 then swallowing cyanocobalamin tablets will not raise your B12 level. However, if your B12 level did raise to a healthy level and this level should be over 500, then this would just be a diet related B12 deficiency. If your B12 level did not raise above 500 then I suspect it would be pernicious anaemia (PA).

3. Iron has nothing to do with PA other then it can co-exist with PA and is quite common in our members. It is also very common for our members to have not only PA but Iron Deficiency Anaemia (IDA) and folate anaemia. In order to have healthy red blood cells, you need a healthy supply of B12, iron and folate. It seems that when you are low in B12, your body will draw from iron and folate to try and make up the loss. Thus you end up with lower levels of iron and folate. This causes a problem for many of our members because most of our doctors don't check folate levels. In order for a B12 injection to be properly utilized it needs a healthy supply of both iron and folate.

My daughter was diagnosed with PA and folate anaemia. To date she has not become deficient in iron but she is monitored yearly for this level as well as B12 and folate.

Regards,
Pat
 
Although I do not have IBD, I was diagnosed years ago with pernicious anemia. My lab work showed high levels of intrinsic factor antibodies. For the rest of my life, I have to give myself a monthly 1cc B12 shot.
 

David

Co-Founder
Location
Naples, Florida
Thank you for your detailed response Pat :)

2. I've read some studies (example abstract) that state high dose oral cyanocobalamin can be absorbed by patients with pernicious anemia and even in those who have had their terminal ileum removed. They seem to feel that approximately 1% of the B12 passively diffuses into the bloodstream from the small intestine. However, the NIH seems to think it is too unreliable. Point being, a rise in B12 from high dose oral supplementation may not necessarily mean diet related deficiency.

3. Do you feel low B12 can lead to iron deficiency anemia? And have you read this by chance?

New:

4. I notice you use "500" as what appears to be your normal level for B12. Would that be correct? If so, what is the "normal" level there in Canada or does your group feel 500 pg/ml is the correct normal? Here in the USA, most doctors will not supplement if you're 200 pg/ml or higher. I've noticed in some countries like Japan, 500 or higher is considered normal which is what I agree with as I continue to read available research.

Thanks :)
 
Because of this thread I went to find out if I could get testing for vitamin and mineral levels. In fact, you can purchase your own tests with the blood taken at a chain diagnostics company, like labcorp.

Reading the description of the tests is somewhat educational in itself the normal levels are listed and in some cases what symptoms abnormal levels would result in.

Figuring out which test to take is not going to be easy, and I only went looking because I can imagine not being able to convince a doctor to order the tests.

For some vitamins there were more than one test.

Sent from my ADR6350 using Tapatalk
 

David

Co-Founder
Location
Naples, Florida
Because of this thread I went to find out if I could get testing for vitamin and mineral levels. In fact, you can purchase your own tests with the blood taken at a chain diagnostics company, like labcorp.
Oooh! This is very interesting to me!

How much? What tests can you get done? What company is this through? Tell me tell me tell me :)

Oh, and have you read our vitamin and mineral deficiencies thread?
 
Google online blood tests, there will be several results. :)

I saw that thread. I'm very interested in the topic. Thanks for all the time you have put into it.

Try Direct Labs and click the read more on the folate test. Sound familiar?

Sent from my ADR6350 using Tapatalk
 
I just looked at my blood test results from last year and my b12 was tested at 317 pg/mL with a reference range of 180-914. But it says that less than 145 would be deficient. Why is there so much discrepancy over what is considered "normal"?

Scott, that's cool abt getting to pick your blood tests.
 

DustyKat

Super Moderator
Do you feel low B12 can lead to iron deficiency anemia? And have you read this by chance?

I don't think a B12 deficiency causes Iron deficiency anaemia but I do think with Crohn's they are closely linked and most likely occur together for many people.

Many of the heme iron rich foods aren't tolerated well by many Crohnies, particularly red meat. Add to that the issues of bleeding, whether it be the obvious type or the more insidious microscopic type, and for women, menstruation, then iron deficiency anaemia can easily become a problem.

Just my two cents worth...

Dusty. :)
 
Thank you for your detailed response Pat :)

2. I've read some studies (example abstract) that state high dose oral cyanocobalamin can be absorbed by patients with pernicious anemia and even in those who have had their terminal ileum removed. They seem to feel that approximately 1% of the B12 passively diffuses into the bloodstream from the small intestine. However, the NIH seems to think it is too unreliable. Point being, a rise in B12 from high dose oral supplementation may not necessarily mean diet related deficiency.

3. Do you feel low B12 can lead to iron deficiency anemia? And have you read this by chance?

New:

4. I notice you use "500" as what appears to be your normal level for B12. Would that be correct? If so, what is the "normal" level there in Canada or does your group feel 500 pg/ml is the correct normal? Here in the USA, most doctors will not supplement if you're 200 pg/ml or higher. I've noticed in some countries like Japan, 500 or higher is considered normal which is what I agree with as I continue to read available research.

Thanks :)
Hi David,

1. Yes, I have also read the studies about high dose oral cyanocobalamin. I also drafted the PAS policy on oral cyanocobalamin. The studies refer to high dose cyanocobalamin as being effective to treat PA/B12 deficiency. However, the effectiveness is based on PA patients being able to absorb 1 per cent by diffusion. One per cent of a 1,000 mcg oral cobalamin tablet equals 10 mcg. Even if there are 5000 mcg oral cyano tabs, the amount absorbed would only be 50 mcg. For any PA patient who has neurological involvement or SACDSC (sub acute combined degeneration of the spinal cord) the amount absorbed would in no way be able to do any repair to the damaged nerves. We have had members prescribed oral cyanocobalamin prior to a diagnosis of PA. Those members were not able to get their B12 level above 300.

2. I had not read the article on Erythropoiesis but I always suggest to our members they ask their doctor to order a reticuloycte test as a follow up to see if they are responding to treatment. We are well aware of the importance of iron and folate and how it relates to B12. We further stress that when you have a nutritional deficiency such as B12 that you are more susceptible to developing other nutritional deficiencies such as iron or folate. Everyone of our members either have a folate deficiency or an iron deficiency along with the B12 deficiency, some have all three deficienies. PA patients have a similar problem to crohns disease patients. Constant diarrhea is a common symptom. This usually does clear up when the patient gets enough B12 but we have found that folate deficiency makes this symptom worse. When a member mentions they have constant diarrhea, we tell them to get their folate level checked and it usually turns out the member is folate deficient. When you have constant diarrhea you lose a lot of nutrients. I would think the same happens with a crohns patient as a PA patient..as soon as they eat, it goes right through them. This is a topic that I wrote for our forum and ask all new members to read it. It discusses the importance of iron and folate and why it is necessary to take a Vitamin B complex if you are taking B12 injections for a prolonged period of time.

We do use 500 as a cut off level. We know that B12 deficiency can occur in the absence of megaloblastic anaemia as there is quite a bit of research on this. We have chosen to go along with the theory that Japan uses this level as a cut off point but we have never been able to find the actual research article that states this. We have found many articles that allude to this but not the actual paper itself.

The Canadian reference range for B12 is 198 - 615 pmol/L. The PAS disregards the reference range for the following reasons:
They are too low and need to be re-visited. They are based on an outdated RDA established in the 1950's.
The serum B12 test is seriously flawed. In the UK, the PAS is working with Axis Shield link to have the serum B12 test replaced with the active B12 test. The serum B12 test measures all of the cobalamin in the body, both active and inactive. The active B12 test recognizes the difference and measures only the active cobalamin, that which the body can use. For example, you may have a B12 level of 340. Of that level, 300 could be haptocorrin (inactive B12). That means your true B12 level would be 40. This test is just becoming available in the UK and is now being marketed towards the U.S.

To get back to B12 levels, we suggest to our members they should strive for a healthy level of 1000 and over. Many of our members self-inject, including my own daughter and she maintains a B12 level of over 1300. Every one of our members who have chosen to learn how to self-inject, inject when they feel they need the injection and all have improved dramatically.

Regards,
Pat
 
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David, Accurate Diagnostics is a chain lab that I have used thru work. Google them and see if they are near you. They will talk to you about what you need.

Great thread.
 
There is now 'Methylcobalamin sub-lingual' being as a method of getting high dose B-12, which is supposed to be a better option than cyanocobalamin. Does anyone have any information on this newer B-12, and the sub-lingual delivery system?
 
Methylcobalamin works for some and not for others. But it is certainly worth trying. The Jarrow brand sold in the United States at 5000 mcg would be the best to take. iherb.com also sells Jarrow brands, I deal with them and have found them very reliable.

When you place the sublingual in your mouth, it works better if you can keep it from dissolving too quickly..so try to keep it either beneath the tongue or between the upper lip and your gum. The citrus flavour does bother some people and gives them sores in the mouth...to avoid that, keep moving the sublingual around in your mouth.

Regards,
Pat
 
Thanks Pat. I was thinking of the sublingual drops.... 5mg/ml. They recommend 4 drops per day (2000mcg.) It's compounded in a stable anhydrous base. I wonder how effective the absorption would be given your comment that slower is better.
 
Hi Handle,

I personally don't have any experience with sublingual drops. Some of our members have used a liposomal methyl spray and they said it worked for them, others have said the spray is not as effective as the sublingual. One thing we have learned over the last 6 years is that not one person responds to treatment in the same way. It becomes very much a trial and error method of trying to find the correct treatment regime.

Sorry, I am not much help on this but I personally think anything is worth trying once. I only know that subs are better absorbed at a more slower rate...as one person explained it, the slower the absorption, the more B12 you get. You would not be able to keep the drops in your mouth for long, perhaps the drops don't require this despite entering the bloodstream in the same manner as sublinguals.

Regards,
Pat
 
Much appreciated Pat. I will try the drops, and see for myself.

Thanks C.S. - practical limitations noted!
 

David

Co-Founder
Location
Naples, Florida
Hi Pat,

Sorry for the delay responding.
1. Yes, I have also read the studies about high dose oral cyanocobalamin. I also drafted the PAS policy on oral cyanocobalamin. The studies refer to high dose cyanocobalamin as being effective to treat PA/B12 deficiency. However, the effectiveness is based on PA patients being able to absorb 1 per cent by diffusion. One per cent of a 1,000 mcg oral cobalamin tablet equals 10 mcg. Even if there are 5000 mcg oral cyano tabs, the amount absorbed would only be 50 mcg. For any PA patient who has neurological involvement or SACDSC (sub acute combined degeneration of the spinal cord) the amount absorbed would in no way be able to do any repair to the damaged nerves. We have had members prescribed oral cyanocobalamin prior to a diagnosis of PA. Those members were not able to get their B12 level above 300.
Excellent information. Thank you so much.

2. I had not read the article on Erythropoiesis but I always suggest to our members they ask their doctor to order a reticuloycte test as a follow up to see if they are responding to treatment. We are well aware of the importance of iron and folate and how it relates to B12. We further stress that when you have a nutritional deficiency such as B12 that you are more susceptible to developing other nutritional deficiencies such as iron or folate. Everyone of our members either have a folate deficiency or an iron deficiency along with the B12 deficiency, some have all three deficienies. PA patients have a similar problem to crohns disease patients. Constant diarrhea is a common symptom. This usually does clear up when the patient gets enough B12 but we have found that folate deficiency makes this symptom worse. When a member mentions they have constant diarrhea, we tell them to get their folate level checked and it usually turns out the member is folate deficient. When you have constant diarrhea you lose a lot of nutrients. I would think the same happens with a crohns patient as a PA patient..as soon as they eat, it goes right through them. This is a topic that I wrote for our forum and ask all new members to read it. It discusses the importance of iron and folate and why it is necessary to take a Vitamin B complex if you are taking B12 injections for a prolonged period of time.
More wonderful info :)

How many of your members know the cause of their PA? Do you think undiagnosed Inflammatory Bowel Disease may be common in your society?

We do use 500 as a cut off level. We know that B12 deficiency can occur in the absence of megaloblastic anaemia as there is quite a bit of research on this. We have chosen to go along with the theory that Japan uses this level as a cut off point but we have never been able to find the actual research article that states this. We have found many articles that allude to this but not the actual paper itself.
I haven't been able to find the actual paper either. I wonder if it's true :D

The Canadian reference range for B12 is 198 - 615 pmol/L. The PAS disregards the reference range for the following reasons:
They are too low and need to be re-visited. They are based on an outdated RDA established in the 1950's.
The serum B12 test is seriously flawed. In the UK, the PAS is working with Axis Shield link to have the serum B12 test replaced with the active B12 test. The serum B12 test measures all of the cobalamin in the body, both active and inactive. The active B12 test recognizes the difference and measures only the active cobalamin, that which the body can use. For example, you may have a B12 level of 340. Of that level, 300 could be haptocorrin (inactive B12). That means your true B12 level would be 40. This test is just becoming available in the UK and is now being marketed towards the U.S.
I thought haptocorrin was a glycoprotein and helps B12 get past stomach acid and then is separated in the duodenum where IF should then bind to the B12.

Any thoughts on having methylmalonic acid and homocystein levels checked as a marker of B12 deficiency?

To get back to B12 levels, we suggest to our members they should strive for a healthy level of 1000 and over. Many of our members self-inject, including my own daughter and she maintains a B12 level of over 1300. Every one of our members who have chosen to learn how to self-inject, inject when they feel they need the injection and all have improved dramatically.
Why 1000?

More questions :)

5. How often does your society recommend people get injections?
6. Do you recommend loading doses?
7. How often do you suggest having actual B12 levels checked?
8. Reading your site, it says low folate or low iron can cause poor uptake of B12. Do you by chance have the source of this info?
9. I do not have PA but would like to join your society. Would that be ok? I feel it's important for me to learn as much about B12 as possible considering the nature of it and CD and I like how your society thinks.
10. Do you feel that B12 injections can adequately replete liver stores?
11. Smoking and cyanocobalamin is mentioned on your site. Do you have a source for your cyanide assertion? That's scary! :eek:
12. Any source for B12 loading doses causing potassium levels to drop?

Thank you!
 
Hi David,

How many of your members know the cause of their PA? Do you think undiagnosed Inflammatory Bowel Disease may be common in your society?
I would say that about 75% of our members do not know the cause of their PA or B12 Deficiency. Most of our members have been diagnosed just with a B12 deficiency. Some of our members do have crohns disease, some have coeliac disease and some gluten and dairy products sensitivity. It is important to push your doctor to investigate further the cause of any B12 deficiency. If you have classic PA, defined as having intrinsic factor antibodies, this means it is genetic. That being the case, children and siblings need to be tested to see if they have these antibodies or even to check B12 levels because sometimes a low B12 will be present long before you test positive for antibodies. There are a lot of problems with diagnosing PA because the intrinsic factor antibodies are present in only 60% of PA patients, therefore, you could fall within the 40% of PA patients who have PA but do not have the Intrinsic Factor antibodies. Parietal cells antibodies can be present as well in PA patients, however, the antibodies can also be present in diabetics and people who are hypothyroid.

I would have to agree that undiagnosed IBS is very common amongst our membership. Doctors seem to ignore the symptoms just as much as they ignore the symptoms of B12 deficiency. Too many times our members have been accused of making up the symptoms and too many times our members are offered anti-depressants when in fact because B12 def.and/or folate deficiency causes depression, anti-depressants will not work.

thought haptocorrin was a glycoprotein and helps B12 get past stomach acid and then is separated in the duodenum where IF should then bind to the B12.

Any thoughts on having methylmalonic acid and homocystein levels checked as a marker of B12 deficiency?
You are correct, David. Haptocorrin is a glycoprotein and does bind B12, I should have said B12 analogues. However, Haptocorrin not only binds active B12 but also B12 analogues.

MMA and homocystein tests are excellent to use to test for B12 deficiency, however, these tests should be done prior to taking any form of B12 supplements. A serum gastrin test is another test that can check for B12 def. but it must be a fasting test. If the test result is elevated that means your stomach is trying to produce more acid. All PA/B12 def. patients have low stomach acid. This is why the bowel problems occur. You need to have stomach acid to digest the food you eat. When you don't have enough stomach acid, the food is released more slowly into the bowel where it may stay for awhile giving bacteria an opportunity to grow. The bacteria then causes diarrhea. So at first there is constipation followed by diarrhea.

Question 5. The PAS recommends injections on demand. We use the phrase that you alone know your body best..in recent discussion with a project manager from DUETS which is part of NICE (the National Institute for Health and Clinical Excellence) in the UK, I was asked what is the optimal dosage for PA patients. My answer was there is no optimal dosage but if there was then it should be injection on demand. The WHO has never placed an upper level on B12 because it is water soluble and the body excretes what you don't need, therefore, you can never overdose on B12. Optimal dosage means not having any symptoms. PA should go into remission if treated with enough B12 and you then become asymptomatic. My daughter is now asymptomatic. To answer your question, everyone responds to treatment differently. My daughter uses cyanocobalamin, she injects three times a week but not IM injections, she uses subcutaneous injections and each injection is 400 mcg. My daughter could not manage on the monthly maintenance dosage of cyanocobalamin. She had too many symptoms. She tried many different regimes, finally settling on three times a week and subcut injections. She was diagnosed almost 18 years ago and this year has been the best she has felt. She has been self-injecting since 2006, having found the old Anaemia Society online, the forerunner to our present society.

Do you recommend loading doses?
Absolutely, your body needs to be saturated with B12. Almost every cell in the body is affected by B12..there are many places for it to go in your body and it needs to get into the cells. But I believe that loading doses should continue until there is no further improvement and then cut back but never to what is the maintenance dosage as set out by our guidelines. In the UK, hydroxocobalamin is the B12 serum used and their maintenance dosage is once every 3 months, following loading doses. Personally, I think that is ludicrous. The PAS is working to have that changed. I don't believe that PA patients and those with B12 malabsorption can store B12 from injections because to be able to access those supposed stores of B12 in liver, you have to have a working enterohepatic circulation process. PA/B12 malabsorption patients do not have a working enterohepatic circulation process because it is dependent on being able to absorb B12. One of our members wrote an article on this, the PAS published it..if you wish to read it, this is the link

How often do you suggest having actual B12 levels checked?
For the first year following diagnosis, every 3 months. Folate and ferritin need to be done at the same time. TSH to check for thyroid issues should be done once a year. Most doctors will not order these tests as often but we suggest to our members to push to have it done. If your doctor wont do every 3 months, then every 6 months but don't go a year between tests. Once you are stablized then it is ok to go a year.

8. Reading your site, it says low folate or low iron can cause poor uptake of B12. Do you by chance have the source of this info?
There are many research articles that state this. By uptake, we mean the effectiveness of the B12 injection. This is one article for folate. A red blood cell is elongated and has a sphere in the middle that carries oxygen. B12 and folate deficiency, when it becomes megaloblastic, enlarges the red blood cells. In doing so, it flattens out the sphere resulting in less oxygen being carried through the body. Iron anaemia is the opposite, it decreases the red blood cell with the same result as B12/folate anaemia. Less oxygen is being carried through the body. This causes heart palpitations and also what we refer to on the forum as "sighs". It really isn't a yawn, more like a sigh as your body is trying to take in more oxygen. So if you don't have healthy levels of folate and iron, the B12 has to work harder and can't get to all the areas of the body it needs to get. Further, if you will accept experience on the part of the PAS, albeit, only 6 years experience, we see the same pattern over and over again. A doctor diagnoses PA or B12 def...gives loading doses and then the patient is put on maintenance dosage. One month after finishing loading doses, they are sick again..they are right back to square one. In most cases there was a folate deficiency, an iron deficiency or both that the doctor had not checked for. So the loading doses either had to be repeated or as in most cases the doctor would not do loading doses and so the patient begins to supplement with methyl subs between injections in addition to taking folic acid supplements and/or iron, depending on which additional anaemia they have. Methyl subs sometimes are not enough and the same patient begins to source other forms of treatment, either change doctors or go private as the UK has two health systems, a national health system and a private health system. In Canada we only have a national health system so if we wanted to go private, it usually means visiting your country.

9. I do not have PA but would like to join your society. Would that be ok? I feel it's important for me to learn as much about B12 as possible considering the nature of it and CD and I like how your society thinks
We would welcome you David and as I said earlier, many of our members do not have a PA diagnosis. However, there is a cost to join and I think it is increasing this month. The PAS is a registered charity in the UK but is in the process of now being incorporated. Dues will be requested of all members. Thank you for the compliment. I am glad you dont see us as being radical because we are not. It is just that for many of our members, including my daughter, we have had to take the step of managing our own health because if we didn't, for most everyone, there would be no quality of life. Maintenance dosage for cyanocobalamin and hydroxocobalamin only corrects the haematological aspect of the disease, it does not allow for any repair to the nervous system. Until the PAS, my daughter was merely existing and not really living a life.

10. Do you feel that B12 injections can adequately replete liver stores?
David, if you read the article on the enterohepatic circulation process, you have my answer. The injections may replete liver stores but you cannot access it. Kevin, who wrote the article, was diagnosed just with B12 deficiency.

11. Smoking and cyanocobalamin is mentioned on your site. Do you have a source for your cyanide assertion? That's scary!
Yes, I do, this article is just one. Further, hydroxocobalamin, the other B12 serum is used as an antidote to cyanide poisoning which affects some of our firefighters. Hydroxocobalamin differs from cyanocobalamin in that it does not contain the small molecule of cyanide. Research says that is lasts longer in the body then cyanocobalamin but I don't agree with that.

12. Any source for B12 loading doses causing potassium levels to drop?
Any vial of cyanocobalamin issues the warning that intense parenteral treatment may cause hypokalemia. Care should be taken during loading doses, we always advise our members to eat more of the foods that are high in potassium during this time. I am sure it may happen but we have a membership of close to 6000 and we have not as yet heard of it happening to any of our members. Our membership includes online members and those who write in.

This Tuesday, our Chair and one of our moderators from our forum will be addressing the Scottish parliament on a lack of treatment and diagnosis for PA/B12 deficiency and also that there has been no review of the treatment and diagnosis of PA and B12 Deficiency.

I apologize for any typos or spelling errors. A long post.

Regards,
Pat
 
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Sorry, I forgot to add that we use a B12 level of 1000 as a level every member should strive for. We have no research to support this but again only experience. Every member who has improved to the point where they have almost a normal life has a level of over 1000. And these are all members who self-inject. Not everyone requires a high level, again, treatment is very individual. We stress that you need to maintain a level where you feel best. 1000 seems to be the starting point. When my daughter was on monthly injections, her level would vary from 400 to 735. She couldn't function at these levels. In addition to fainting, dizziness, exhaustion, she suffered with extreme pain in the jaw, neck, shoulder and back for 3 years. She spent thousands of dollars for acupuncture which helped with the pain but never got rid of it. Three months of twice weekly injections of cyano did get rid of the pain and it has remained that way.

Regards,
Pat
 
Pat, thanks for the awesome information. We Chronies are far to familiar with dismissive doctors and doing our own research, so we know how your group feels. I asked my GI if I needed to be checked for vitamin levels and he said, "no your skin looks fine, that's how I know your levels are ok". This is why learning what about the tests is important to me, cause I will order them myself. Thanks again

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DustyKat

Super Moderator
Bumping this thread as it has loads of fabulous information contained within it for those with B12 deficiency.

Tagging Malice67
 
Posted this previously but worth tagging onto this thread:

Be careful if taking folate when B-12 deficient

I originally presented with severe anemia - deficient in iron, folate, and B-12. Eleven iron infusions later my iron level is fine, but I can't keep the B-12 high enough without shots every 6-8 weeks. During all this time (14 months so far) I have been taking 1mg of folic acid a day as well. Turns out my blood folate level is now too high which is apparently a problem when your B-12 is low.

the article below is pretty technical and even with a M.S. in chemistry I did get lost in a couple of parts.. but the basic idea is that the combination of high blood folate and low B-12 changes how your body metabolizes certain chemicals. This results in impaired cognitive function plus some risk associated with cancer.

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