Got My Surgery Date! But...

[Clematis]

Memorize this: With a DS, it's not what you swallow it's what you ABSORB.

We malabsorb fats, ergo fat soluble vitamins like ADEK. (Each one of us malabsorbs a bit differently.) My LAB results with falling A levels told me my vitamin A was not being absorbed and was being pooped out so I needed more vitamin A -- a lot more. An ordinary person would reach toxic levels by what I (and most with DS) take, but once you have the DS, you aren't "normal."

FYI: You want most vit/nutrient lab results to be in the top of the range except for PTH which you want low.

 

[Clematis]

Please note that you will probably need copper, magnesium citrate and especially zinc. Zinc is a big one many of us become quickly deficient in and low zinc levels can cause a host of symptoms like skin issues, hair loss and cognitive dysfunction.

 

[Clematis]

Oh and the reason we say to track your own labs is that your physician (usually PCP orders labs, not surgeon) scans down the list only for the high or low flags put on by laboratory. They won't necessarily notice that you have plummeted in values if you started at top end, are now at bottom end but are still within range. I start increasing supplements if I get within 15-20% of the bottom acceptable value as it can take a long time to raise concentrations.

 

[Ainu]

That's good to know. I'm terrified of vitamin deficiencies. There are so many conflicting things I'm being told about what and how much I need to take. And of course, I'll have to find out what my body will take. I need to accept that there's going to be some trial and error in the beginning. No matter how well I prepare, I won't know how my body will react until it's done.

I just want everything to be perfect from day one and I know that's just not going to happen.

 

[DianaCox]

Routine labs - ALL OF THE THINGS - is non-negotiable.
Follow TRENDS, not just numbers - some things we get low on are HARD to get back up from once they get in the low normal range.
When you have to adjust something, retest within a few weeks.

 

[Spiky Bugger]

For example I take (in addition to what's in 2 Centrum and in Premier Protein):

Vitamin A 25,000 daily PLUS another 25,000 3x a week
Vitamin D 50,000 3x a week
K1 1000 daily
K2 100 daily
Vitamin E alpha tocopherol 400 daily

Last month lab messed up vitamin E test and instead of testing for alpha tocopherol, tested for GAMMA tocopherol and that one was low so now I take 400 of that.

I also take Copper 2mg, Magnesium Citrate 200, and ZINC 50 daily PLUS another 3x a week. I no longer supplement Vitamins C or Calcium Citrate because I was getting kidney stones.

NOTE: WHAT YOUR LABS "TELL" YOU TO TAKE MAY BE DIFFERENT THAN WHAT I TAKE

Calcium, especially taken WITH the consumption of high oxalate foods, is what is supposed to PREVENT kidney stones...for which I am having surgery AGAIN next week...or so numerous folks-who-should-know tell me.

More info, please.

 

[Clematis]

Calcium SUPPLEMENTS over X amount (very individual) are known to cause stones in some people. Supposedly this isn’t the case - or they have no data to support - calcium in foods (but I disagree).

All I can relate is mostly anecdotal.

I had stones in the 1970s after a poverty period where I lived on buttered spaghetti noodles with gobs of Kraft Parmesan cheese. At the time the urologist said maybe I was eating too much calcium. I stopped my spartan diet and no more stones...

For 35 years. Then in the UK in 2014 (pre DS) I awoke with a stone. This after 6 months of rigid Atkins and probably a pound of cheese a day - lots of calcium in food.

DS 11/2015 1800 mg calcium citrate, Two premier protein each having 50% RDA calcium, calcium carbonate in two Centrum plus all the calcium in yogurt and cheese sticks. Eight months later the first stone hit and then I continued to get one every six weeks average although sometimes as short as three weeks. Cleveland Clinic urologists and nephrologist shrugged and I’m sure blamed DS.

I took the fancy Litholink 24hr urine test (far more comprehensive than usual 24hr urine). I emailed Frederick Coe MD at University of Chicago, reknowned kidney stone expert, asking for advice without realizing he was the inventor of that test. He said my numbers were just a bit off and in his experience could not account for my plethora of stones.

DS, PPIs were likely culprits.

Agony and lithotripsies ensued, vacations were ruined, tens of thousands were spent over a year.

Then I decided I would remove a variable and get off PPIs by weaning myself to H2s and then hopefully off antacids entirely. I had just had an X-ray and at that point was stone free. Over the next 5 weeks I ate fistfuls of Tums (calcium carbonate) to ease the transition to H2s... and ended up with a huge stone more than double the size of any stone before it. It was blocking ureter and kidney was being damaged from hydronephrosis. In only a month.

Whoa! Hey docs could all this be from calcium? Yes they said (even tho I had asked them this a year before and given them my detailed supplement Excel sheet totals). But not from food, they said. I mentioned that prior to DS stones were after large calcium in food intake. They shrugged again. I immediately stopped all calcium supplements except for what is in Centrum and in one Premier Protein. (Is that food or supplement??) I eat one Greek yogurt and one cheese stick. I’m away from my laptop so don’t have my data but I think this works out to 1200mg.

I recently had a scan and there are no stones after 4 months. A miracle.

I was Dxed with osteopenia last January. So I hope that food calcium works. I’m not scheduled for another DEXA until Jan 2019.

YMMV

 

[Ainu]

Hey everyone. Sorry I disappeared for a while. My fiance and I decided that right before my surgery would be the perfect time to try and buy our first home.....cause we plan so well.

Anyway, I see one of my doctors on the 24th and I'm going to ask for more pre surgery labs. I'm missing a bunch of vitamin levels I need to fill out my Excel sheet.

I've never had problems with kidney stones so I'll just take what vitalady recommends and go from there.

Thank you everyone with their support. Even anecdotal helps.

 

[harrietvane]

And store your spreadsheet on the cloud so you still have it when your *!@#ing laptop dies on you!

 

[hilary1617]

Congratulations on your new home!

 

[Ainu]

Thank you. It's been quite the nightmare actually. We got the key last Tuesday to go in and do some work for the mortgage and a hit water pipe had burst at some point (house is empty) and plowed an enormous home through the whole house and ruined everything with steam.

They're gutting everything and putting new floors, subfloors, drywall, paint, molding, everything. But the stress has been so bad I gave myself an ulcer (with the help of painkillers) and I've been desperately trying to get it to heal.

Closing date was six days before surgery and I'm not sure if things can get done in time now.

 

[southernlady]

Thank you. It's been quite the nightmare actually. We got the key last Tuesday to go in and do some work for the mortgage and a hit water pipe had burst at some point (house is empty) and plowed an enormous home through the whole house and ruined everything with steam.

They're gutting everything and putting new floors, subfloors, drywall, paint, molding, everything. But the stress has been so bad I gave myself an ulcer (with the help of painkillers) and I've been desperately trying to get it to heal.

Closing date was six days before surgery and I'm not sure if things can get done in time now.

Oh my goodness. That is extremely stressful.