Cystectomy and Bl2 deficiency

14 years 6 months ago #27660 by kcnorthstar
Replied by kcnorthstar on topic Cystectomy and Bl2 deficiency
Thanks Pat. I went to Dr. Normans site and now understand that there are 2 MMA tests. I didnt catch that before. There is the SMMA or serum MMA test and the uMMA or urine MMA test. So correct me if I am wrong but there seems to be 4 tests used to measure B12 deficiancy.

Serum b12
Serum Homocysteine
SMMA (Serum MMA)
uMMA (Urine MMA)

And of these 4, uMMA is the most reliable.
I think I am going to go ahead and order the in home test kit from the web site just so I dont have to wait for my doctor.

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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14 years 6 months ago #27659 by Patricia
Replied by Patricia on topic Cystectomy and Bl2 deficiency
Hi kc.......actually the uMMA test is the most reliable but you can't imagine how many doctors don't know about it and rely on the serum test. Its really hard to get them to order it.....besides its costly..more so than a serum test. I actually did it myself through Dr. Norman who invented the test and he's right here in Cinti...at least it put my mind at ease about it even if it did come out of my own pocket. Check here
www.b12.com/
my homocystenes are high right now so my uro also ordered a B6 test. I just had a shot of Bl2 so i'm going to wait until the end of the month to have it measured when counts would be going down.
Pat

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14 years 6 months ago #27646 by kcnorthstar
Replied by kcnorthstar on topic Cystectomy and Bl2 deficiency
This is an important thing for people with urinary diversions to check seeing as most doctors dont tell patients about it. I went to the link that Pat posted and my take on it is that the serum test for B12 is not reliable. The MMA and Homocysteine tests are much better indicators of B12 deficiancy. Looks like even though the serum test may show normal levels the other two tests can show a deficiancy. The long term affects of B12 Deficiancy can be pretty bad.
Others interested in this topic may want to look at the thread entitled "b12 and the amount of intestine used" from about 4 months ago which contains some info from various forum members.
Im going to ask my doctor for the MMA and Homocysteine tests. This is just too important to take any chances with.

KC

Age 59
DX Jan 2006 - T1B G3
RC - Neobladder June 2006

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14 years 6 months ago - 14 years 6 months ago #27640 by Patricia
Replied by Patricia on topic Cystectomy and Bl2 deficiency
InTransition.....not if they catch it in time. So much depends on your doctors knowledge of this. My uro very diligent in checking every 6 months after my cystectomy and mine was at a danger level pretty quickly...certainly not the 2yr store they said i'd have. I started in the 800's and by 6 months i was down to 270...so they started the Bl2 shots immediately. I only have to do one a month and its no big deal. I still get checked once a year to see where it is..Personally i recognise the symptoms when i'm low...i happen to get a sore tip of the tongue or a tingling in my toes...and thats almost always when i'm due for my next shot. I think i should be on a 3 week schedule but hard to convince docs of that!! I am truly a pain in their butt!!
By the way..repercussions on not having enough Bl2....very similar to MS. Neurologic damage, eye damage, dementia...check out this page
forums.wrongdiagnosis.com/showthread.php?t=9948&page=2
Pat

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14 years 6 months ago #27639 by inTransition
Replied by inTransition on topic Cystectomy and Bl2 deficiency
Pat: Is treatment straightforward? Do you have long term repercussions from this deficiency?

Diagnosed Stage 3 March 09.
RC August 09 at MD Anderson, TX
Ileal Conduit (Bag Lady)
Age 52

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14 years 6 months ago #27632 by Patricia
Cystectomy and Bl2 deficiency was created by Patricia
Make sure your Uro checks this level along with other blood work. Its been discussed before but worth repeating.
Vitamin B-12 is an essential nutrient that cannot be synthesized by humans. The human liver is the major site of vitamin B-12 storage, and most stores can last approximately 3 years without replacement. The terminal ileum is the exclusive site of vitamin B-12 absorption in humans. Most urinary diversions in which ileum is used are performed in a way to compensate for the physiology of vitamin B-12 absorption; however, more than 50 cm of resection appears to be the critical length at which abnormal B-12 absorption may be expected.

With the addition of intrinsic factor, Pannek et al demonstrated that 20 of 25 (80%) patients with more than 50 cm of ileum who underwent resection for continent diversion demonstrated abnormal Schilling test results.3 Patients with shorter limbs of ileum are not immune to vitamin B-12 deficiency and/or megaloblastic anemia; symptoms may take longer to manifest. Long-term follow-up studies in patients with shorter ileal segments demonstrate a 25-28% incidence of complications from vitamin B-12 deficiency. Patients in whom more than 50 cm ileum is resected are at increased risk for vitamin B-12 deficiency, which usually does not become clinically apparent for at least 2 years.

With that being said mine was down to danger levels within 8 months of my cystectomy...........Pat

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