Hello, I'm new, having some DS issues and I'm scared :(

[barrelracinbroke]

First, I'd like to thank Larra for introducing me to this site. I appreciate it.

A little history, I had DS surgery on 2/18/2000 with Dr. Gary Anthone at USC. Then, in 2002, I had a revision to lengthen my common channel since I couldn't stop losing weight. I don't know how long my common channel is. I wish I did. But, I've been able to maintain my weight well. Since then, Dr. A moved out of state and I've just had regular annual labs by my primary. In the past couple of weeks, I've been feeling very nauseous, I "think" I got some sort of bug as I had dark (sorta green) stools and then, watery diarrhea. The bowel movements have gotten better but I still have no appetite and don't feel well at all. I'm very scared, as I can't stop losing weight since I'm not able to eat much. I'm down to 125lbs as of this morning.

I'm going to call Dr. K's office tomorrow (thank you Larra for recommending him) to see if they can get me in quickly. I sure hope they can. After reading some posts I know they've come a long way in learning what we need to maintain health. Hoping Dr. K can help me. I've just taken a multivitamin since my original surgery and calcium 3 years ago.

I've also had some kidney issues since my original surgery (stones and a lower GFR rate than prime). Once my revision was done, I had "less" kidney stones. But, my kidneys are still not perfect and I have high oxalate in my urine.

Being this sick and having high urine oxalate is scaring me tremendously. Can anyone offer some support? How quickly do you think Dr. K's office will see me? I'd like to be seen in the next couple of days.

Thank you again for any advice.

 

[DianaCox]

I was hoping someone would bring you here so I could also suggest Dr. Keshishian.

Please give us DETAILS of what you are eating and drinking and how much, what vitamins and other supplements you are taking (including the EXACT type of vitamin by brand name and dosage, and how many of each, how many times a day), and we'll tell you what you are doing wrong. . As for the oxalates, you are probably taking in too many oxalate containing foods/drinks (spinach, nuts, tea), and taking way too little calcium citrate - some of the calcium binds to the oxalates in your diet so you don't absorb it into your bloodstream and thus kidneys.

 

[southernlady]

Welcome @barrelracinbroke

 

[Larra]

So glad to see you here!

I think you will get a lot of good advice here on how to improve your supplementation and so on. Not a substitute for medical care of course, but I'm hopeful Dr. K will come through for you.

 

[barrelracinbroke]

Thank you all so much! I have been doing my best to stay calm but this is causing me so much anxiety. I'm really scared, so I appreciate your advice and support.

Since my revision surgery, I have pretty much eaten what I want and stayed very active to keep my weight in check. I ride horses and stay physical. I thought with the revision that I would get more nutrients from my food and wasn't as worried about malnutrition. Sounds as though I should've been. Since the revision and the ability to gain weight back, I just tried to eat "well". From what I'm reading here, I don't focus on protein as I should. :/

Here's some details:
Over the years, my basic labs have pretty much stayed in check with the exception of an occasional mild anemia that I would add iron for and it would go away. I've taken vitamins off and on during the years. Most recently, it's been the Multiple vitamin with iron from Bariatric Advantage. Sometimes I take 2 pills, sometimes 3 (the recommended dosage) only because the percent of daily values were so high and I'm not well educated on what I needed to be taking.

I was hurt in bad horse accident in 2011 and 6 broken bones, it was found that I did have osteoporosis stemming from hyperparathyroidism. My PTH levels were off the charts. I had a parathyroidectomy in April of 2012. Since then, I had taken 1200mg a day of calcium citrate (Citracal Max) and my bone density has improved greatly. I recently "upped" my calcium to 1800mgs a day because I'm also going through early menopause (I'm 43 years old) and I know that's going to effect my bone density. I've continued to see the endocrinologist annually and my PTH levels and calcium levels have all been within normal range. I also hadn't had any more kidney stones and "thought" everything was well. Also, I've had some back problems that include arthritis. So, I had gone to a rheumatologist who ran some tests on me (still 2012) she came back and said my kidneys were only functioning at 40%! She told me to immediately stop taking my anti-inflammitories. That obviously scared the crap out of me!! So, I immediately went back to the endocrinologist and my PCP who both said my kidneys were functioning fine??? I was confused but took their word for it. Hoping maybe her tests were wrong??

Since I didn't feel well last week, I went to my PCP. He ran a CBC that came back all within range, a Metabolic Panel that came back with a little high glucose (111 and I've never had that before) and my alkaline phosphatase was low at 37. I "think" that may mean some malnutrition? He also ran a urine test that again scares me with my kidneys. They came back with high urine PH, a 1+ in protein and oxalate crystals were present. My creatinine and BUN levels are within range, with an EGFR of 77. I know it should be over 90 to "not" be considered a problem according to most sites but to my PCP, they were within normal range so no need to worry. Well, I'm worried!!!! So, I had lowered my calcium this week back down to 1200mgs thinking the citrate was what the raise in urine PH might be from?? But, after reading posts on this forum, I understand I need to continue the higher doses of calcium citrate to possibly lower my urine oxalate. So, today, I've started back on 1800mgs.

My doc basically told me I caught a bug, gave me some ranitidine and sent me on my way. I just know my body and I'm still not feeling well. I have zero appetite and my bowel movements, although more normal consistency, are a lot more frequent than they've been in years. I can't stop losing weight, I have no appetite and I'm not sure what condition my kidneys or nutrition is in. I'm literally laying here feeling like I'm dying because I'm withering away.

THANK YOU SO MUCH FOR TAKING THE TIME TO READ THIS AND OFFER YOUR ADVICE. I really appreciate it. It's helped me to speak with people who understand.

Chris (normally the sarcastic, strong one who's freaking out that she's dying and making her beloved husband crazy with fear as well)

 

[barrelracinbroke]

One more thing I forgot to add! I drink way way way too much coke!! That stopped yesterday! Which is probably why I dropped another 2lbs. Well, that and not wanting to eat.

 

[Elizabeth N.]

Hi and welcome. If I were in your shoes, the first thing I'd do is to read the vitamins board a lot and get on all the supplements in the "Vitalady list," most of which you can find on Amazon.

How about Reclast infusions for your osteoporosis? I don't know if you can have them after parathyroid surgery.

I take 3,000 mg calcium. 1,800 is a DSer bare minimum. Some people are reporting good results with a product called Bone Up.

I take Immodium for the runs.

Bummer that you either got no education or didn't listen, had two probably unnecessary surgeries and are now in this position. I hope you will find some things that help here and I am not criticizing you. I DO want to point you out to newbies as a dire warning of what WILL happen, sooner or later, if you are noncompliant.

 

[DianaCox]

I'm going to make some comments as I read your post - most are requests for more information:

• "my basic labs have pretty much stayed in check" - more details please - WHICH labs? This is what an actual DS basic list entails - please compare and tell us which ones you're missing: http://www.paclap.com/downloads/annualdslaborders.pdf
  • You need to get all those other tests done ASAP.
• "Multiple vitamin with iron from Bariatric Advantage. Sometimes I take 2 pills, sometimes 3" HIGHLY unlikely that this is remotely adequate, especially if that's the ONLY vitamin you're taking.
• "I did have osteoporosis stemming from hyperparathyroidism. My PTH levels were off the charts. I had a parathyroidectomy" - I sure hope this parathyroidectomy was actually medically necessary. Lack of calcium, vitamin D, magnesium, vitamin K can lead to hyperparathyroidism - meaning your parathyroids were doing what they were supposed to do - leach calcium from your bones to KEEP YOU FROM DYING of low blood calcium. This mistaken diagnosis has been made over and over by endocrinologists who don't understand the DS, which is why we are SO adamant about patients KNOWING and UNDERSTANDING their surgery and how it works, and how to discuss it with their doctors!
• "I had taken 1200mg a day of calcium citrate (Citracal Max)" - Please confirm that you know that a 630 mg dose of calcium citrate in the form of Citrical Max is TWO pills.
• Get your kidney function tests redone.
• "I had lowered my calcium this week back down to 1200mgs thinking the citrate was what the raise in urine PH might be from??" NONONONO! Calcium in your gut binds to oxalates in your food, to prevent them from getting into your blood. And high pH means your urine is TOO ALKALINE - low pH is high acid! Do NOT cut back on your calcium citrate! If anything, you may need a prescription like UroCit to INCREASE your blood citrate levels.
• Get a stool culture.

What fixes are likely necessary:

• I'm betting your D3 levels are in the toilet - after seeing your levels, you likely will need to start taking a buttload of DRY (water miscible) D3, 50K to 100K IU/day (disregard the RDA which is 2000 IU - it is meaningless for us).
• You should get BOTH kinds of vitamin K as well (K1 and K2), also in water miscible form, from or comparable to what Vitalady sells (not sure what's happening with her as she transitions her business to the new buyer)
• Vitamin A? Mine is still fine without ever supplementing, but YMMV
• Start taking a good probiotic or two
• Zinc and magnesium levels are probably low too
• Coke (WITH sugar??) is bad for your bones too
• What are you eating with respect to protein?
• How much fat are you eating?

 

[barrelracinbroke]

Thank you! I've read a lot about "vitalady" on here. I will look up her vitamins for sure!

My endocrinologist said if my bone density isn't normal at this year's scan that he does want me to try some alternatives to just taking calcium and vitamin D.

As far as the compliance, I think a lot of this was so new when I had it, they didn't really know. I remember calling Dr. Anthone when I had my first kidney stone and he said the surgery and stone were in no way related. That was the end of 2000. Since then, I've obviously learned they most definitely are. I had 5 stones between 2000 and the end of 2002 when my revision was. I had 2 more between 2002 and 2012 when my parathyroidectomy occurred and none since my parathyroidectomy. I know that doesn't necessarily mean there's none in there, but none have passed if so and there is no blood in my urine since the parathyroidectomy.

I'm NOT knocking Dr. Anthone here but, back then, he basically said since my revision I was now a "medial" bypass instead of "distal" that I absorbed more from my food. He told me to take a multivitamin, iron and then I started following up with my PCP as Dr. Anthone moved. I assume he's learned a lot more since then if he's still practicing.

To all the newbies, yes, most definitely follow up!! This surgery changed my life in so many ways for the good. I was 28 years old when I had it and I've gotten to do so many wonderful things because of it. I just hope I'm going to be ok now.

 

[Elizabeth N.]

Believing a surgeon about labs and supplements is almost a guarantee of problems.

 

[Elizabeth N.]

(Which is something we've had to learn with experience.)

 

[barrelracinbroke]

Diane, wow, what an eye opener. I've copied and saved your post. THANK YOU!! My replies are in caps.

I'm going to make some comments as I read your post - most are requests for more informat

• "my basic labs have pretty much stayed in check" - more details please - WHICH labs? This is what an actual DS basic list entails - please compare and tell us which ones you're missing:
  • You need to get all those other tests done ASAP
  • JUST BASIC LABS. CBC'S, CMP'S, AND THIS LAST ONE HAD A VITAMIN D-25 (CAME BACK AT 50.8), AN IRON SERUM (CAME BACK AT 89), BILLIRUBIN (CAME BACK AT .10), FERRITIN (CAME BACK AT 26) AND THYROID PANEL (TSH OF 1.96) INCLUDED. DEFINITELY NOT THIS DETAILED. I'M CALLING DR. K'S OFFICE TOMORROW. SHOULD I SEE HOW SOON HE CAN GET ME IN AND ASK HIM TO RUN THESE LABS OR HAVE MY PCP RUN THEM SOONER? HOPING DR. K CAN SEE ME THIS WEEK.
• "Multiple vitamin with iron from Bariatric Advantage. Sometimes I take 2 pills, sometimes 3" HIGHLY unlikely that this is remotely adequate, especially if that's the ONLY vitamin you're taking.
• THAT IS THE ONLY VITAMIN I TAKE
  
• 
  
• "I did have osteoporosis stemming from hyperparathyroidism. My PTH levels were off the charts. I had a parathyroidectomy" - I sure hope this parathyroidectomy was actually medically necessary. Lack of calcium, vitamin D, magnesium, vitamin K can lead to hyperparathyroidism - meaning your parathyroids were doing what they were supposed to do - leach calcium from your bones to KEEP YOU FROM DYING of low blood calcium. This mistaken diagnosis has been made over and over by endocrinologists who don't understand the DS, which is why we are SO adamant about patients KNOWING and UNDERSTANDING their surgery and how it works, and how to discuss it with their doctors!
• I WAS DIAGNOSED WITH HYPERPARATHYROID PRIOR TO DS. BUT WAS "TOLD" I JUST HAD SLIGHTLY HIGH CALCIUM AND NOT TO WORRY ABOUT IT......

• "I had taken 1200mg a day of calcium citrate (Citracal Max)" - Please confirm that you know that a 630 mg dose of calcium citrate in the form of Citrical Max is TWO pills.
• YES, I TAKE 6 PILLS A DAY OF CITRICAL MAX RIGHT NOW.

• Get your kidney function tests redone.
• THESE WERE JUST REDONE ON THURSDAY OF LAST WEEK. SHOULD I GET THEM DONE AGAIN? HE WAS GOING TO RUN ANOTHER URINE TEST NEXT WEEK. BUT WASN'T CONCERNED AT ALL ABOUT THE BLOOD TESTS IN THE METABOLIC PANEL.

• "I had lowered my calcium this week back down to 1200mgs thinking the citrate was what the raise in urine PH might be from??" NONONONO! Calcium in your gut binds to oxalates in your food, to prevent them from getting into your blood. And high pH means your urine is TOO ALKALINE - low pH is high acid! Do NOT cut back on your calcium citrate! If anything, you may need a prescription like UroCit to INCREASE your blood citrate levels.
• OK, I WILL CONTINUE THE 1800 MGS (6 PILLS A DAY) OR SHOULD I TAKE MORE? BLOOD CALCIUM LEVEL WAS 9.7 WITHIN RANGE.

• Get a stool culture.
• IS THIS SOMETHING DR. K CAN DO AS WELL? SHOULD I WAIT OR DO IT NOW?

What fixes are likely necessary:

• I'm betting your D3 levels are in the toilet - after seeing your levels, you likely will need to start taking a buttload of DRY (water miscible) D3, 50K to 100K IU/day (disregard the RDA which is 2000 IU - it is meaningless for us).
• OK
  
• You should get BOTH kinds of vitamin K as well (K1 and K2), also in water miscible form, from or comparable to what Vitalady sells (not sure what's happening with her as she transitions her business to the new buyer)
• OK
  
• Vitamin A? Mine is still fine without ever supplementing, but YMMV
• IT'S IN THE MULTIVITAMIN I TAKE BUT NOT SURE OF MY LEVELS
  
• Start taking a good probiotic or two
• I ACTUALLY DID START TAKING ONE 2 DAYS AGO, FORGOT TO MENTION THAT. IT'S JUST A CVS BRAND. ANY RECOMMENDATIONS?
  
• Zinc and magnesium levels are probably low too
• OK
  
• Coke (WITH sugar??) is bad for your bones too
• YES.... ADDICTION. AND IT'S STOPPED NOW.
  
• What are you eating with respect to protein?
• PROBABLY NOT THE RIGHT KIND. MOSTLY STEAK AND CHICKEN, SOMETIMES, SALMON OR SEAFOOD.
• How much fat are you eating?
• I DO EAT A LOT OF CARBS. :/

 

[barrelracinbroke]

Thank you Elizabeth, I assumed that only a DS surgeon can help me right now in case something else is wrong. Am I taking the right direction in trying to see Dr. K?

 

[southernlady]

Thank you Elizabeth, who should we get labs from? our PCP?

If you get them done thru LabCorp or Quest, sign up for their app...they have both an iPhone AND an Android app...and get copies from them. Otherwise get the hard copies from whoever has been pulling them.

Read EVERYTHING you can on this board: http://bariatricfacts.org/forums/vitamins-labs.16/ And if you need help, post your labs (with ranges) and we can help you tweak them.

 

[barrelracinbroke]

Diane, I've printed your link of the blood tests that I need to have done. I will have my PCP write up an order for them and get them done.