Anxiety about vitamins/malnutrition

on 11/24/20 3:27 pm
DS on 11/02/13

Hello there, I just made my account after having received my DS back in 2013. I'm about to turn 23, so I got my procedure when I was 16 (guessing I may be the youngest person on this forum now haha.) I know you'll probably be met with some surprise or even dismay at that fact given that it's pretty unconventional, but at this point it's safe to say that it was a good decision for me as by all measures I'm extremely healthy. However, the only persistent issue that's been plaguing me is anxiety issues. What I'm anxious about varies but for the past year or so I've gotten borderline obsessive when it comes to vitamin/malnutrition anxiety. This is despite going by the recommendations of my surgeon and having good bloodwork (I just got my labs for this year done a couple weeks ago and all looks good.) Current regimen is:

Kirkland multivitamin 2x a day

Kirkland calcium citrate (this version has d3, magnesium, and other minerals in it) 4x a day

Iron in the morning

5000IU Vit D 1x daily with one of my calcium doses.

However, after having done some more research this past year, I see that regimens for different people vary WILDLY, with recommendations calling for additional A, E and K as well as b12 on top of what I personally take, all the way up to the vitalady regimen which is on another planet compared to what I take. I've discussed this with my parents as well, who are 15 and 20 years out respectively from their own DS surgery, who are on the same regimen as me and have maintained good labs the entire time. Their answer to me is that while that may be better for some people (i.e. vitalady's regimen) there appears to be no real reason for me to take nearly that many supplements. However, despite this, I see people on this forum ranting and raving about how someone like me is "hospital bound" or "slowly killing myself" by not taking the 30+ supplements vitalady prescribed, even though like I said my entire family's labs have been fine for years despite taking what our surgeon (Dr. John Rabkin of Pacific Laparoscopy) recommends. While I realize that people are often really only educated as to their own personal needs (despite claiming to be more educated than all medical professionals it seems like) and that every DS patient adapts differently, has different abilities to absorb, etc., this has still left me with some pretty debilitating anxiety. For instance, after reading some vitalady testimonies on here, I got so anxious that I was basically slowly killing myself that I have been bedridden for the entirety of today. However, as I said, I've received no professional medical advice telling me to alter my intake and instead only have anecdotal evidence of peoples' own experiences telling me I need to change. I'm not trying to invalidate anyone else's experiences here, as like I said, no one's going to know their own needs better than themselves at the end of the day based on their own lab history and stuff like that. But at the same time the disparity between what I see here and what has worked for me thus far is still extremely distressing, especially given my age as I will have to monitor my vitamins for far longer than most patients given my young age. Basically, I really don't want to die an early death because of this surgery, and I want to feel like I'm doing enough.

Janet P.
on 11/25/20 3:47 am

The more important question is what labs are they checking? I have a laundry list of labs I get done once a year - this is a list I received from my surgeon almost 20 years ago. I also periodically reach out to my surgeon's office to ensure I'm not missing anything or to see if they've added something - maybe they learned something else that needs to be monitored. You'll only know what you're deficient in if they check it.

For example, my B12 is crazy high so I don't supplement that at all. My iron has been bad since the very beginning (ferritin is the key indicator) so I've always had issues and have had many iron infusions over the years.

I'm probably one of the people who take quite a bit more than you take. My calcium is always bad and I have gone from having a normal bone density to osteoporosis in 18 years. I'm sure part of it has to do with my family history. I take 3 times as much calcium as you do. Then there's D. I take 50k units of D3 three times per day and i'm barely in the normal range.

Maybe you and your family are one of the lucky ones. Try not to compare yourself to anyone on the board because as you have learned we're all different.

Janet in Leesburg
DS 2/25/03
Hazem Elariny

on 11/25/20 6:11 pm

If YOUR labs are good, don't waste a minute worrying about it. You are doing what you need to do today. Over time, that may change and you will have to change too. Sounds like you are ready and prepared so you are good to go.

Your parents are your closest genetic relatives and they are doing well on the same regimen as you. It is most likely you will continue to do well too.

(deactivated member)
on 1/5/21 5:33 am

Vitamins won't harm you!

on 1/11/21 7:09 am, edited 1/14/21 1:26 am

Don't worry about your lab history please, you did everything right and there is no reason to overthink about this. I am sure that you will be all right, I am also anxious about a lot of things and I know how does it feel to be in your skin. This is our nature and it's hard to change it, at least at this early age. When I get too anxious, I use to take some kratom extract, it has a soothing effect and it helps me stop overthinking and focus on more important things.

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