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
