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Member Since 16 Apr 2014
Offline Last Active Yesterday, 12:18 PM

Posts I've Made

In Topic: Iron Deficiency Vs Anemia Of Inflammation

Yesterday, 07:23 AM

Yes, it's very true that anemias can co-exist. And, worse yet, if you have a microcytic anemia (like iron deficiency) at the same time as you have a macrocytic anemia (like B12 or folate deficiency) it can actually cause blood tests to show a false normal results. I had never even heard of false normal test results until I was pretty much in that situation. It's crazy. (And it also sucks because you have all these anemia-like symptoms and your doctors look at your blood tests and try to tell you it's all in your mind when it really isn't...)


I realize now that this topic should probably have gone under the 'related disorders' section. Maybe a moderator could move it?

In Topic: B12 Injections

29 June 2015 - 02:31 PM

Do you know which form of B12 the injections are? Cyanocobalamin is the form most often used in the US and is usually given once a month. Hydroxocobalamin is the form more commonly used in parts of Europe. Generally speaking, cyano works more quickly but is not retained as well in the body as hydroxo.


Methylcobalamin is the newest form of B12 to be developed. It is not commonly in use by doctor's offices, although some are starting to warm up to it because it is the "active" form of B12 and doesn't require as much conversion in the body as cyano and hydroxo do. (But it's also more expensive than either of the other kinds and is not mass produced as an injectable the way the others are.)


Cyano manufacturers have stated that between 50%-98% of injected cyano is lost (excreted through urine) within the first 48 hours after an injection. So, if you received a 1ml injection, which is equal to 1000mcg, two days later only 20-500mcg remain for your body to use for the rest of the month. A typical person needs about 6mcg of B12 a day to replace what is naturally lost.


Another complication that you may or may not have, has to do with how B12 is recycled through the body in the methylation cycle. B12 is such a complicated molecule that the human body has developed a really complex system for dealing with it. If anything anywhere in that system messes up, the B12 never reaches its destination and is never used. That can sometimes mean that a bunch of inactive B12 is floating around in the blood, never able to be turned into active B12 for use. That is one of the reasons that tests of serum B12 after injections have been given are not considered reliable. There is an 'active B12 test' that has been developed but it is not widely available and is probably not covered by insurance. Once a person is on injectable B12, their treatment should be based on symptoms.


It would be a good idea to talk to your doctor and ask that your injections be based on your symptoms (in other words closer together than once a month) because you shouldn't have to suffer needlessly. There is no known upper intake limit for B12. That means you can't ever overdose on it (unless you have a pre-existing kidney condition/failure). Many doctors are not very knowledgeable about B12 and B12 deficiency. Some mistakenly believe that it is possible to overdose. If your doctor turns out to have that mistaken belief, ask him or her to provide you with scientific documentation to back up their belief. They won't be able to because it doesn't exist.


Unfortunately, getting B12 deficiency correctly treated is a bit of an uphill battle. Keep in mind that B12 works best in tandem with other nutrients such as folic acid and iron and that large amounts of B12 can lower potassium levels. Ideally everything would be measured and brought into correct balance. Realistically, sometimes you have to choose your priorities.


I'm sure the nurse means well, but she is probably not well-informed on the subject and you should really be talking to the doctor about increasing the injections. The nurse won't have the authority to do that.


One other thing to keep in mind, which is not a fun thing to think about, is that it is really important to know your limits when you are getting B12 shots. It is very tempting, once you finally have a burst of energy, to take as much advantage of it as you can. However, if you go full out, you are likely to overdo it and use up the B12 more quickly. Things that make your body use up B12 more rapidly are: stress, exercise, alcohol, and sugar.


Are you familiar with the Spoon Theory? It's a fairly good explanation of how you have to keep track of things in order to keep from running out of B12 before the next injection: http://www.butyoudon...e-spoon-theory/

In Topic: Tummy Troubles

24 June 2015 - 12:58 PM

I just bought a cookbook that has a rice milk mayonnaise recipe in it. It's actually this recipe: http://cybelepascal....iry-free-vegan/


I haven't had a chance to try to make it yet, but it does happen to be gluten, dairy, egg, and soy free. I thought you might want to give it a try.


I hope the therapy works. Good luck!

In Topic: Doubts About Diagnosis

24 June 2015 - 08:55 AM

To jump tracks a bit,

You have mentioned that you have both chronic gastritis and borderline low B12. Have you been tested for Pernicious Anemia?

There are myriad symptoms related to B12 deficiency and you don't have to become anemic before experiencing them. This is just something to consider. Do you have any relatives who have had B12 deficiency or Pernicious Anemia? Like celiac, it often runs in families.

In Topic: Anemia And Celiac

23 June 2015 - 11:05 AM

One thing I've learned is to request print outs of all of the lab results and make sure they include the reference ranges. That way you can see exactly what was tested as well as what the actual results are (not just a doctor saying all is normal).


Back in 2012, after a particularly bad episode of anemia-like symptoms (I couldn't get out of bed for three days), I went to my doctor and requested an iron panel be run. Those tests included serum iron, ferritin, transferrin, TIBC, and saturation %. A standard CBC was also done at the time to complete the picture.


When my doctor looked at the results, she interpreted them as iron deficiency and advised me to take oral iron. I am not a doctor, but when I looked at the results I realized her interpretation was mistaken. In iron deficiency serum iron and ferritin are low but transferrin is high. In my case the serum iron was low but the transferrin was low also and my ferritin was still normal. I had anemia of chronic disease (also known as anemia of inflammation) which is an anemia triggered by the body's immune response. And, more importantly, it can't be treated by oral iron. When I questioned my doctor about it, she realized the mistake and agreed with me. That is why it is important to get print outs and look them over.


Notice that I said all of that occurred back in 2012. I finally received an iron injection just a month and a half ago. It took me about 3 years to convince someone to actually treat the problem. I think a lot of doctors are wary of giving iron injections because they are uncomfortable and, if the doctor administers it incorrectly, it can produce a permanent dot on the skin. Iron infusions are considered superior to injections. If iron injections aren't available, are iron infusions available?


As cyclinglady said, it is possible to have more than one type of anemia.


With such a low ferritin level, I'm surprised there is not more urgency from her doctors to do something to treat it. The first step to figuring it all out is getting copies of all the lab results.

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