For those with pernicious anemia after wls-
What kind of treatments are you doing? I'm beginning to feel my dr isn't aggressive enough. I do monthly shots and DAILY sublingual but my levels are not coming up too much. It has been 9 months. First reading was 146, was 187 and third is 327. I am having numbness-tingling in forearms and hands. My toungue hurts daily. AND I FEEL LOUSY! Should I get a more aggressive Dr or just go with the program, assuming the levels will just be slow in coming up. Thanks in advance! Lori
(I'm three years out and started shots 9 mos ago, before that was just weekly sublingual 2500 mcg)
Lori at Goal 
RNY October 2004
I have read that some people need to go to weekly shots, but know of anyone in particular. Some people seem to have more problems getting enough B12 than others.
I am only 9 mos post op and have not had any problems with B-12 yet. However, I decided early on to use the B12 patch as opposed to the sublingual B12. The ad claims that it is as effective as injections because B12 can be destroyed by digestion and being absorbed transdermally, this is prevented. I use one patch a week.
They are a bit pricier than tabs, but this is something I wanted to hopefully forever avoid and am willing to pay the extra. You can only find them on the internet, do a search for B12 patch and you will find them. If I were you, I would probably start with 2 patches a week or more but maybe talk to your doctor, I'm not sure off hand how much is supposed to be delivered with each patch.
I am only 9 mos post op and have not had any problems with B-12 yet. However, I decided early on to use the B12 patch as opposed to the sublingual B12. The ad claims that it is as effective as injections because B12 can be destroyed by digestion and being absorbed transdermally, this is prevented. I use one patch a week.
They are a bit pricier than tabs, but this is something I wanted to hopefully forever avoid and am willing to pay the extra. You can only find them on the internet, do a search for B12 patch and you will find them. If I were you, I would probably start with 2 patches a week or more but maybe talk to your doctor, I'm not sure off hand how much is supposed to be delivered with each patch.
Hi,
I was diagnosed with pernicious anemia 4 months ago. I am getting monthly shots, taking a weekly inhaler and doing the sublinguals daily. I was told it will take 6-9 months to get levels up.
The tingling in my arms and legs is still there but slowly getting better. I have been tripping and falling a bit less.
I am still very tired and working hard to bring my energy levels back. Sleep is a premium.
Making a commitment to animal protein has been the hardest thing for me. I have upped my dairy, meat and eggs and feel better when I do.
Good luck on this slow and steady recovery.
F
http://en.wikipedia.org/wiki/Pernicious_anemia
http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm
http://www.nhlbi.nih.gov/health/dci/Diseases/prnanmia/prnanm ia_what.html
http://www.umm.edu/blood/aneper.htm
If you go to google and run a search on "Pernicious anemia" you will find a world of information. As always, use the most reputable medical sites.
First, since you are post WLS, we KNOW without question or testing that you lack the ability to possess the intrinsic factor that allows the body to absorb B12. That part of your intestines has been completely bypassed so you will never again absorb B12 by food alone. Some are successful with the sublingual tablets. If you notice, the dosage is usually 2500 which is over 40,000 (fourty thousand) percent of the RDA. It is believed that some are able to to have success with this treatment because the dosage is so high that the body is *forced* to accept some of this component that is introduced into the body. The actual RDA of B12 is typically easily achieved through diet unless one has a disorder that prevents the body from producing the IF because of disease or as is the case when a portion of the bowel is bypasses as in the post-op gastric bypass patient.
Aside from the research I did on what causes PA, I also studied the treatment of PA along with lab tests, readings, studies, means, etc. My PCP didn't agree with the research I had regarding treating the anemia. It's important to remember that doctors (especially PCPs) cannot possibly keep up with all the current information on disease/illness/etc. and treatment. To do so, he'd never be able to see patients! Also, they are "general" doctors and not "specialists". The best treatment for any blood disorder will obviously come from a Hemotologist (though he can't know it all either! LOL) Anyway, my PCP wanted to take a much more conservative approach (injections once per month) which I believed would not help my stores quickly enough and it would therefore take me longer to recover and feel better. I had to "encourage" a better treatment plan than what he wanted but I got what I wanted and it has worked. The suggested treatments vary - some physicians think oral / sublingual B12 is sufficient and it may be for some but I felt like trying that hadn't worked for me. It does take 2 years for the liver to become depleted of its B12 stores which is why we start to see PA in WLS patients around the 2 year mark. The concensus regarding treatment of PA in post op WLS patients seems to be B12 injections which can be sufficient done subq rather than muscular. The dosage and administration should be at the minimum 1000 mcg injections sub-q every day for three days, then once per week for 4-5 weeks, and then monthly for life. Levels should be checked after treatment begins at 1 month, 3 months, 6 months and then yearly. HOWEVER, looking further, I found a more aggressive initial treatment seemingly more acceptable to those suffering from PA because they felt better faster and the body replinishes its stores faster. This treatment would be 1000 mcg dosage(s) injection sub q every day for one week / seven days, then twice a week for 4 - 6 weeks and then monthly for life. I ended up doing 1000 mcg injection sub-q for four days, then twice a week for 4 weeks and then once per week for 2 weeks and I'm now seeing how far I can get before I start to suffer from the tinlging extremeties. It was also helpful for me to "split" my dosage such as 500 mcg every other day (after the initial daily dosages) and then split 50/50 for the remainding weeks. After 7 weeks of my personalized treatment plan my B12 went up 425 points to 870. To me, it's amazing that my range was still under 1000 after all of treatment I received. However, it should be kept in mind that B12 is water soluable and there is no upper limit (a limit whereby the FDA warns to no go over). There are definite consequences to mega dosing even with water soluable vitamins that do not have an UL. I initially suffered from a particlar type of lesion (that looks remarkably like a pimple but isn't) on the face, neck, chest and back; however, it did subside when dosage decreased and compared to the pay off - it was a minor inconvience at best. It should also be noted that vitamin and iron levels should be considered by patient. The "normal range" is a highly broad range determined by a particular mean (group of patients/people). You and your doctor should work together to determine what is the best level for you! I also believe this regarding a whole host of other blood test(ing) and treatment(s). I also learned that high doses of Vitamin C can affect the number of the level of your B12 at a higher range -- meaning large doses of vitamin C can push the B12 reading/number higher than the patients true level ---- so that this should also be a mindful part of the treatment plan. My surgeon wants my B12 level over 1000 and I've just reached 870 so not too much farther to go!
This has become much longer than I anticipated so I will just STOP!
I hope this information is beneficial to you as well as others!
Update as of 07/12/2007: I haven't had blood work lately but have an appointment to recheck in late August. The longest I have gone since the inception of treatment without tingling is 21 days. Months later, I have not yet been able to reach the "once a month injection" goal. I suspect, however, that this is obtainable and in the near future. I have taken the prescription iron faithfully so I do expect to see *some* increase in my ferritin level (iron stores) which were exactly at the minimum on my last set of labwork. Because my B12 level were recovering and my H&H levels were good (and I have a conservative Hemotologist), iron fusions were not ordered. I am feeling better as well though may days are on and off -- good days and bad days and I never know which it will be!!!
*added from written post on 07/13/2007
**** I have the following information posted on my profile -- it was written after literally hours of research of medical journals, etc. and I have posted website for informative reading as well. For me, I believe that my B12 may have been on the *low* side for "me* prior to surgery which would explain some symptoms from which I suffered prior to WLS but couldn't seem to conquer. *I* believe it to be a shame that physicians don't look me for low B12 levels more often as raising B12 levels in many people who were even in the *normal range* yet suffering from *unexplained* physical, psychological, mental, and emotional symptoms have experienced dramatic life changes after raising B12 levels. *I* suspect that many people are improperly diagnoses because B12 is *overlooked.* Also, as a side note, typically anyone over 50 (irregardless of gastric bypass) begin to not produce less of the intrinsic factor (IF) in order to properly absorb B12. It is (in my opinion) of benefit for the over 50 patient to mindful of this medical *fact.* Low levels of B12 have now been linked to Alzheimer's disease -- though once the diagnosis of AD is made, it's too late to treat it with B12; therefore, it is *safe* to conclude by many studies that B12 should be evaluated and potentially supplemented by the over 50 age group.
http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm
http://www.nhlbi.nih.gov/health/dci/Diseases/prnanmia/prnanm ia_what.html
http://www.umm.edu/blood/aneper.htm
If you go to google and run a search on "Pernicious anemia" you will find a world of information. As always, use the most reputable medical sites.
First, since you are post WLS, we KNOW without question or testing that you lack the ability to possess the intrinsic factor that allows the body to absorb B12. That part of your intestines has been completely bypassed so you will never again absorb B12 by food alone. Some are successful with the sublingual tablets. If you notice, the dosage is usually 2500 which is over 40,000 (fourty thousand) percent of the RDA. It is believed that some are able to to have success with this treatment because the dosage is so high that the body is *forced* to accept some of this component that is introduced into the body. The actual RDA of B12 is typically easily achieved through diet unless one has a disorder that prevents the body from producing the IF because of disease or as is the case when a portion of the bowel is bypasses as in the post-op gastric bypass patient.
Aside from the research I did on what causes PA, I also studied the treatment of PA along with lab tests, readings, studies, means, etc. My PCP didn't agree with the research I had regarding treating the anemia. It's important to remember that doctors (especially PCPs) cannot possibly keep up with all the current information on disease/illness/etc. and treatment. To do so, he'd never be able to see patients! Also, they are "general" doctors and not "specialists". The best treatment for any blood disorder will obviously come from a Hemotologist (though he can't know it all either! LOL) Anyway, my PCP wanted to take a much more conservative approach (injections once per month) which I believed would not help my stores quickly enough and it would therefore take me longer to recover and feel better. I had to "encourage" a better treatment plan than what he wanted but I got what I wanted and it has worked. The suggested treatments vary - some physicians think oral / sublingual B12 is sufficient and it may be for some but I felt like trying that hadn't worked for me. It does take 2 years for the liver to become depleted of its B12 stores which is why we start to see PA in WLS patients around the 2 year mark. The concensus regarding treatment of PA in post op WLS patients seems to be B12 injections which can be sufficient done subq rather than muscular. The dosage and administration should be at the minimum 1000 mcg injections sub-q every day for three days, then once per week for 4-5 weeks, and then monthly for life. Levels should be checked after treatment begins at 1 month, 3 months, 6 months and then yearly. HOWEVER, looking further, I found a more aggressive initial treatment seemingly more acceptable to those suffering from PA because they felt better faster and the body replinishes its stores faster. This treatment would be 1000 mcg dosage(s) injection sub q every day for one week / seven days, then twice a week for 4 - 6 weeks and then monthly for life. I ended up doing 1000 mcg injection sub-q for four days, then twice a week for 4 weeks and then once per week for 2 weeks and I'm now seeing how far I can get before I start to suffer from the tinlging extremeties. It was also helpful for me to "split" my dosage such as 500 mcg every other day (after the initial daily dosages) and then split 50/50 for the remainding weeks. After 7 weeks of my personalized treatment plan my B12 went up 425 points to 870. To me, it's amazing that my range was still under 1000 after all of treatment I received. However, it should be kept in mind that B12 is water soluable and there is no upper limit (a limit whereby the FDA warns to no go over). There are definite consequences to mega dosing even with water soluable vitamins that do not have an UL. I initially suffered from a particlar type of lesion (that looks remarkably like a pimple but isn't) on the face, neck, chest and back; however, it did subside when dosage decreased and compared to the pay off - it was a minor inconvience at best. It should also be noted that vitamin and iron levels should be considered by patient. The "normal range" is a highly broad range determined by a particular mean (group of patients/people). You and your doctor should work together to determine what is the best level for you! I also believe this regarding a whole host of other blood test(ing) and treatment(s). I also learned that high doses of Vitamin C can affect the number of the level of your B12 at a higher range -- meaning large doses of vitamin C can push the B12 reading/number higher than the patients true level ---- so that this should also be a mindful part of the treatment plan. My surgeon wants my B12 level over 1000 and I've just reached 870 so not too much farther to go!
This has become much longer than I anticipated so I will just STOP!
I hope this information is beneficial to you as well as others!
Update as of 07/12/2007: I haven't had blood work lately but have an appointment to recheck in late August. The longest I have gone since the inception of treatment without tingling is 21 days. Months later, I have not yet been able to reach the "once a month injection" goal. I suspect, however, that this is obtainable and in the near future. I have taken the prescription iron faithfully so I do expect to see *some* increase in my ferritin level (iron stores) which were exactly at the minimum on my last set of labwork. Because my B12 level were recovering and my H&H levels were good (and I have a conservative Hemotologist), iron fusions were not ordered. I am feeling better as well though may days are on and off -- good days and bad days and I never know which it will be!!!
*added from written post on 07/13/2007
**** I have the following information posted on my profile -- it was written after literally hours of research of medical journals, etc. and I have posted website for informative reading as well. For me, I believe that my B12 may have been on the *low* side for "me* prior to surgery which would explain some symptoms from which I suffered prior to WLS but couldn't seem to conquer. *I* believe it to be a shame that physicians don't look me for low B12 levels more often as raising B12 levels in many people who were even in the *normal range* yet suffering from *unexplained* physical, psychological, mental, and emotional symptoms have experienced dramatic life changes after raising B12 levels. *I* suspect that many people are improperly diagnoses because B12 is *overlooked.* Also, as a side note, typically anyone over 50 (irregardless of gastric bypass) begin to not produce less of the intrinsic factor (IF) in order to properly absorb B12. It is (in my opinion) of benefit for the over 50 patient to mindful of this medical *fact.* Low levels of B12 have now been linked to Alzheimer's disease -- though once the diagnosis of AD is made, it's too late to treat it with B12; therefore, it is *safe* to conclude by many studies that B12 should be evaluated and potentially supplemented by the over 50 age group.
I have two sides to my brain - a right side and a left side. The trouble is sometimes there is nothing left in the right side and nothing right in the left side.
Post-Op RNY 6.5 years
HW 252 GW 140 CW 140
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