Everyone MUST read this!!!

A friend of mine posted this email she received on another website that I frequent.  Here is the original post.  Some of the more important replies are listed after. -------------------------- Original Post I just wanted to share this email that I received. Some food for thought: (OSSG) Long Term Post Ops Dying I spent some time with friends yesterday, and found out that they work at a company that processes human bone and tissue. They told me that they get WLS people in there who've had diagnoses of . . . osteoporosis vitamin deficiencies, including . . . - anemia - scurvy (vitamin C) def - rickets/osteomalacia (vit D) - beri beri (B1) - pernicious anemia and/or brain damage (B12) protein malnutrition, etc. Remember, by the time they see them, the patient is dead. This is a very real danger for us, people. Please do program like VitaLady's, and don't rely on your surgeon's Tums/Viactiv and Fred/Barney program. Your surgeon won't be dead of malnutrition, *YOU* will. We all need protein, calcium citrate, iron, magnesium, zinc, vitamins A, D, E, BComplex, and especially sublingual or injected B12. Most prolly need to take C, pantothenic acid, maybe copper, in addition to a couple/3 good multis. I know of several who've died, heart attack (B1 and/or protein) in young people with no history or diagnosis of heart disease, of beri beri (B1), or who've killed themselves because they thought they were going crazy (Bvites). And even more who are alive, but injured, *permanently disabled* by vitamin deficiencies. People who are chronically anemic (iron and/or BComplex), constantly constipated (magnesium citrate and/or pantothenic acid), have joint/bone pain (Vitamin D). Please be aware of, and protect yourselves from these problems, which are *totally preventable*. With regular, complete labs and DEXA scans, good supplement programs, we can all stay healthy, and prevent these problems. Scary huh? ---------------------------------------- Important Reply #1 Well what is more scary is when your body just refuses to absorb the supplements and then starts to deteriorate. Welcome to my world! I was a healthy fat girl 5 yrs ago and I am a girl who is slowly dying 5 yrs post op. ------------------------------------------------ Important Reply #2 (Name removed) XXXXXXXXXXX, can you please share with us what you are going through? I guess we can figure it out but I'm sure I'm not the only one who'd like to learn more about the details about not being able to absorb supplements. All of them? Have you seen a doctor about a revision? Would that be a solution? I am so sorry that you are in this position.I am actually sitting here in shock. -------------------------------------------------------- Important reply #3 You are correct about the calcium issue. My body just wont do it and I would need 2500mg per day of calcium per day and there is just NO possible way for that to happen. I have not been faithful about taking supplements because I just made excuse after excuse. I have permanent damage. My body will soon go into kidney failure due to this. My labs have been done every year with normal results up until now. I have had DEXA scans done every year also. About 5-6 yrs post-op is when one will show signs of these things. My doctor is now testing me for renal failure and also hypercalcemia. I am looking into Boniva infusions due to me not being able to absorb the calcium. I am in pain day in and day out, I have now resulted to being on daily pain meds. This all came about within the last month.  ------------------------------------------------------------- Important Reply #4 See what is scary is even those who are faithful about their supplements MUST make sure they are taking more than the "recommended" dose do to malabsorption. For the first 3 yrs I did do everything by the book and I STILL had bone loss. DEXA scans are not for the elderly. They are VERY important and should be done every year even if your ins pays for it once every 2 yrs I would opt to pay for it out of pocket. No one really knows what percent we actually absorb and what goes to waste. I have other medical problems which is working against me so I am falling into this double malabsorption problem. As far as the infusions. This is still new for me to look into.  ---------------------------------------------- Important reply #5 Interesting article: http://care.diabetesjournals.org/cgi/content/full/28/2/481 --------------------------------------------- Important Reply #6 Here are the tests that are recommended from the article XXX posted. http://care.diabetesjournals.org/cgi/content-nw/full/28/2/48 1/T1 And from the same Abstract: Secondary hyperparathyroidism One form of bone demineralization, secondary hyperparathyroidism, has been reported by several groups to occur in patients who have had gastric bypass (19–21). While the prevalence is unclear, it appears to be more common than previously thought. At our institution, we studied 65 consecutive patients seen for follow-up after gastric bypass. Time since surgery varied from 1 to 9 years; parathyroid hormone, calcium, and vitamin D levels were measured. Twenty-nine percent of patients were found to have elevated parathyroid hormone levels. Although the study group was small, patients at >4 years’ postsurgery had a much higher rate of secondary hyperparathyroidism. Average 25(OH)D level in patients with secondary hyperparathyroidism was 21 ng/ml, whereas patients with normal parathyroid hormone levels had an average 25(OH)D level of 30 ng/ml (normal 20–57 ng/ml). The majority of the patients with secondary hyperparathyroidism has responded to pharmacologic replacement of vitamin D, with normalization of parathyroid hormone levels. It should be noted that vitamin D and calcium supplementation at the usual recommended daily requirements did not normalize parathyroid hormone levels in at least one study (20). and this bit... Protein deficiency is easy to recognize by following albumin. Fat malabsorption manifests its presence by loss of fat-soluble vitamins. Patients can present with a number of problems after this procedure. In our clinic, the most common presenting complaint is fractured bones or a bone density study showing "severe bone loss." Due to fat malabsorption, severe vitamin D deficiency will develop along with an already reduced ability to absorb calcium (23). In general, fat-soluble vitamins A, D, and K will be deficient in two-thirds of these patients within 4 years after surgery. Up to 50% will have hypocalcemia, and all of these patients with low vitamin D levels will have secondary hyperparathyroidism (24,25). Manifestations of all the different fat-soluble vitamins can be seen, ranging from unusual rashes, to osteomalacia, to easy bruising. Fortunately, there is a rather simple solution: pancreatic enzyme replacement. When pancreatic enzymes are replaced, there is some weight regain, and physicians often observe patient noncompliance as a result. The hyperparathyroidism may be difficult to treat and may require separate treatment or even surgery.  -------------------------------------------- My Reply Aw damn babycakes! I had no idea. Last time I saw you, you looked so fit and healthy and having a great time! Please keep us posted on your treatment and results. This is something you cannot go alone, we're all in this together sweetie. Don't let some negativity get to you, you're stronger than that! You fiesty little minx you! You are in my prayers and I'm heading to the store tonight to replennish my vitamin stores. I ran out of my B-complex yesterday. Now which is the kind of Calcium that we DO absorb better? ----------------------------------------------- Important reply #7 It is Calcium Citrate. Keep in mind we can't have more than 600mg at a time and many women need at least 2000 mg a day. Calcium can't be taken with iron or your multi-vitamin and can't be consumed within a certain time frame of protein consumption. It took me 3 yrs of testing to see things happen. It does not happen overnight! My thyroid is also causing a problem with absorption so my body is failing me not due to my lack of taking calcium but there are other medical factors working against me, this is the reason why mine showed up like this. ---------------------------------------------------------- Important Reply #8 Yes, but on the calcium citrate...there is twice as much elemental calcium in calcium carbonate. (Ergo, the calcium citrate horse pills.) So we absorb LESS calcium better...and the end result is still under debate. (Except that most of the real pros just discount the coral calcium stuff as marketing hype.) And with either kind you have to have magnesium in the right ratio and it's not always provided that way, even in the calcium itself. It should be 2:1 (up to a certain level, but I'm not sure what that level is.) Yet one that one of my doctors recommended has 600mg of magnesium but only 20 mg of magnesium. That ain't workin'. And there has to be Vitamin D. So if you malabsorb D (like I do) then you can take calcium 'til the cows come home and you're merely providing it with a little side trip between the bottle and your toilet. And, you can't take any calcium with iron or iron-containing foods. I believe (but I'm still looking around for the article) that we are supposed to take the calcium carbonate (easy, because they come in decent tasting chewable forms) with our meals and the calcium citrate between meals. There was a theory that calcium caused kidney stones. But now that idea is being given less credit. This is important to learn about. ------------------------------------------------ Important Reply #9 2 years ago, I visited Vitalady in Washington and she helped me with my vitamins. I have a huge pill bag with instructions written out. NO, I have not been perfect but when I am, this is what I take: This is NOT as bad as it looks: I break up in AM, PM, taking care to follow the rules for taking iron as Christine already pointed out. - 2 calcium citrate (with magnesium and Vit D) 1000mg cal cit citrate, 500 mg magnesium, 400 IU Vit. D -1 dry Vitamin A & D 10,000 IU of A 400 IU of D - 1 Zinc Chelate, 50mg - 2 stress B + Vit. C - 1 Dry Vitamin E - 400IU - 2 Bariatric formula Multi vitamin (to me these are expensive vites so I'm switching). Now, I am anemic, I've had an infusion so I take a ****tail of iron supplements: * 2 Carbonyl 25 mg (aka Tender Iron) *1 Elemental Iron, 150 mg (Polysaccharide Iron complex) I take with 1 chewable Vitamin C, 50,mg. I buy Nature valley at walgreens usually buy1, get1 and always a $1.00 off coupon in the paper. Also, - 1 Sublingual B12 1000 mcg. also contains 400mcg folic acid I take when I remember a few times a week. - I still do Protein drinks at least 1x per day (usually), always striving for 2. Instatized brand like whey protein. I LOVE MY PROTEIN DRINKS!!! ----------------------------------------------------- Important reply #10 You mentioned your thyroid. Have they checked your parathyroid? I remember correctly parathyroid issues can cause problems with the bones absorbing calcuim, resulting in high levels in your blood, causing stress on other systems, like kidneys. So it's not that it is not absorbed in the gut, it is more that once it is in the bloodstream the body doesn't now how to transfer it to the bone and you can essential get "toxic" from calcium. It has been awhile since I have seens parathyroid stuff, so I may not be 100% right, but this is what I seem to remember. I also think this can happen if people have their thyroid removed, because the parathyroid is so tied in, it often gets removed too. Or if the parathroid stops functioning this happens. FYI, for my supplements: Womans formula multi from vitamin shoppe B12 2000mcg sublingual CHEWABLE calcium citrate with Magnesium and D from vitamin shoppe- (3g sugar for 4 tabs, but it is fructose not processed sugar or corn syrup so I have no problem with it, citrus, takes a week or so to get used to the taste but now I like it, esp because I can chew it Vit C chewable 500mg XXXXXXXXXX, I hope things work out. Make them work you up. Don't necessarily let them "blame the surgery" and possibly overlook another cause I'm not saying that these complications can't come from surgery, but I think a lot of PCPs tend to attribute everything to WLS, without looking at other potential problems. --------------------------------------------------- Important reply #11 That sounds a lot like what we DS'ers are taught. Even when we have normal--or close to normal--calcium levels in the blood, there can still be problems. If the calcium is coming from our food and supplements, great. But when the body needs calcium for day-to-day operations and isn't getting it, the body will start "borrowing" calcium from the bones and teeth to use in the day-to-day operation of the body. (This version was simplified so tht I could wrap my brain around it.) When the "borrowing" is happening, the PTH (parathyroid hormone) level goes UP...and the calcium level might show as fine or "a little low." But it isn't fine...not when the PTH is elevated. (I'm sure there is a version of this that someone who knows from science could share...this was how I was taught.) And while we're at it, those BANDSTERS could probably use a little coaxing about labs, too. The RnY people malabsorb a little and the DS'ers malabsorb a lot and the bandsters with good restriction who are following the program and losing weight fairly routinely are PROBABLY cutting it close on protein and/or iron. (And maybe the sleeve people, too.) So, everybody, get your freakin' labs done. REGULARLY. -------------------------------------------------------- Important reply #12  (This is from a Banded Physician's Assistant) Well stated, XXXXX! You've definitely earned a degree in biochem with your DS.... Very true- it's important to get a PTH, intact level with labs if you're a malabsorber of any type. A "normal calcium" means nothing. Or next to nothing. Spot on in terms of bandsters, too- some people will have iron or protein issues early on when they're recently post op. (iron especially a problem in menstruating women). Still important for banded people to be taking their MVI and calcium supplements forever. (And there are so many great chewables, gels, and other formulas out there now for WLS patients.) Not to hang crepe here, but I see a lot of labs come across my desk at work- It's pretty uncommon to see malabsorbing patients without some type of deficiency-even if they're perfectly compliant. So I applaud Sue et al who are so diligent about it all. It's vitally important to get labs done every 3 months in the beginning stages- Maybe a little iron deficiency or a little Vit D deficiency or a little B-12 deficiency won't seem like much now, but over the course of years it can really take a toll on your bones, your kidneys, your liver.... Damn it. Why can't they come out with the pill soon? I know bariatric surgery will be obsolete at some point- just when?! Went to a conference on obesity at Harvard a few weeks ago- It's exciting to know that we're making great strides in understanding the causes and treatment of obesity. It's pretty validating, actually, to realize it's not just our being gluttonous pigs with no willpower that led us to this state. We actually have too little Leptin or maybe too much Grehlin or maybe our hypothalamus is f'd up. There are a multitude of causes. ---------------------------------------------- Important reply #13 My PTH levels came back high, which is basically stating Hyperparathyroidism. I have my DEXA scan on Friday and once that comes back I am going to have my GYN or PCP give me a script for the Boniva IV to be done. My insurance will cover it. It just sux cause this is something that I didn't know was going on until I had pain which caused me to request the labs. If I wasn't on top of this it would have been missed. I want to thank everyone for their support and prayers. I can use them more than you know. ****************************  End of Important Stuff in Original Post****************************** I have ranted in the post about the importance of Vitamins and regular labs.  Now I've posted the proof.  The person with the calcium problem is a friend of mine who I met thru the other WLS Forum I frequent.  She is a young  (just turned 30) single mom with 3 kids, has worked wonders with her surgery and looks fantastic (does some modeling on the side and is a Nurse) but now has to face this new set of problems. I was non-compliant with my calcium intake before I read this yesterday.  Today I am not. Please, Please, Please, get with the program people, if you haven't already.  This is LIFE AND DEATH!!!!!! For those newbies and those waiting for approval or thinking about WLS, you MUST take into consideration the malabsorbtion of important vitamins into your decision process.  If you absolutely cannot stick to the required vitamin regime for THE REST OF YOUR LIFE, then DO NOT have this surgery. Much Love to you all!

Defintely good reading stuff!  Thanks for bringing to our forum.  Super helpful! Debbie

Thank you Dineen.  This is very scary but so true. Kim S

Wow - what an eye opener!  I take my supplements religiously, but it makes me wonder if I'm getting enough despite what the doc says.  Thanks Dineen - I sure didn't go through all of this to end up like some of those in your post in a couple more years - scary!!!!!

Dineen, Could you please email this post to me so I can forward it on to a few inportant people who do my care. Thanks for sharing.  I hope everyone takes this serious and advocates your own care. !!!!!     I can't say this enough    !!!!    My personal email address is : Hambear73@ aol.com. See you lighter. Joanne

Wow.. that is frightening!!  After reading this I got a knot in my belly.  I don't think ppl realize how important supplements are. I know for sure that if this surgery is approved I will be taking my supplements religiously. This was definitely an eye opener for me.  Ryanne