Meds that drain D and Calcium

After a 5 year remission of Trigeminal Neuralgia, I'm back on Trileptal.  Unfortunately, this med not only drains the body of Vit D and Calcium, but also can cause kidney stones... yippee.  Just a bit annoyed (read angry as hell this kicked in again)... thinking I should be proactive and just do more doses of D and Calcium.  Now that I don't have to take iron anymore since according to my hematologist I'm just not absorbing it anymore -- the iron infusions as long as they run in slowly aren't bad at all.  My iron sat and ferritin had tanked pretty low, there was nothing in the bank, so to speak and soon the h & h would have been dangerously low...Doc said he didn't know how I was still walking around, guess I'm just too stubborn to slow down till I'm critical, lol. 

Question is... should I just up the D another 50,000 IU... and up the calcium citrate, what... another 630 or more than that?  Anyone take trileptal out there in the community?  Neuro knows about the malabsorption issue, of course, he's been my doc over a decade, but can't advise on this, not his field of expertise.  Primary doesn't really have a clue, and won't consider asking my surgeon since his nutritionist is for pity.  You all are the experts, what do you think?

Thanks!

I know your question was about vitamin D, and Calcium, "cant help you there", but if you dont mind, I have a question about your iron being so low?  Im assuming that you took your Iron the  way you were soposed to, so I guess Im wondering how it got that low?  I ask because Im having surgery next month, and I was under the notion that if you take your vitamins, and drink your protien, and follow the rules, that for the most part everything will be fine.  Im counting on that notion ...lol.  I know sometimes other things can happen.  Do you know why you have had a hard time with it?  Sorry for prying, Im just more than a little nervous about my surgery next month, and if there is something I can do that could prevent a problem, I want to know about it....

many DSers do not absorb Iron no matter which form or how much they take. So they get infusions. 

You're not prying, not at all.  We all bare it all here, lol!  Even before my DS I had iron deficiency anemia and had to take massive doses of iron ... and with my pregnancies, double that!  So doing 360 mg of iron with the DS wasn't too bad, but there is just a short amount of duodenum with this surgery ... and the specialized cells there that uptake the iron just weren't working too well, hematologist doesn't know why that happened, but he has quite a few DS clients who come in for infusions.... Though I have a pretty huge payment on them because medicare covers only 80%, the doc office offers interest free payments as long as I pay it off within a year.  Doc says I'll have to be doing this the rest of my life.  My age probably has something to do with absorption since the older we get, the more we naturally malabsorb... and my general health prior to the DS wasn't all that great.  

Still and all, the benefits of having a BMI of 25-27 as opposed to what it was... and the sleep apnea because of the weight pressing down ... the high triglycerides and cholesterol... the much higher pain from arthritis carrying around all that weight on the aging bones, the fact that I am no longer considered diabetic (most everyone in my family has diabetes AND heart disease)....  I still consider myself on the winning side.  I would do it again to effect a cure from all that even though I have to do the infusions, it is a small price to pay in the long run.  I would expect most everyone here would say the same!  

The only thing I can say to do to try to prevent problems is to be as healthy as possible, with numbers in good range prior to your surgery..  It would have been helpful for me to have had an iron infusion prior to surgery... I found out after it that my serum iron was low and my iron sat was low... don't know how that was missed by my doc, but I didn't even see the results till after the fact.  Keep every single copy of your lab values and set up an excel spread sheet so you can watch your trends.  

The guys and gals here are very helpful so when you have issues, they ordinarily jump right in with advice and encouragement.  There's also a FB page you might want to look into as well.

Good luck, when is your surgery?

You have really have had a time of it, my goodness.  I always learn something new on here everyday.  Its nice to hear that you dont regret your DS.  Not the first, "or last" time Ive heard that one.......lol

Patti I don't know anything about the meds you need to take, but I'm really sorry to hear you are having Trigeminal Neuralgia to deal with again.

Have you thought about adding a bone builder, like the Calcium Hydroxyapitate. It's supposed to be more absorbable then even the citrate. Also taking it just before you go to bed is supposed to help also, and the same goes for the D3. 

I hope this helps you just a little bit.

Hang in there!

Thanks for the advice on the calcium hydroxyapatate.  I fell asleep with the laptop, good thing I am in the recliner.  The trileptal is making me so so drowsy!  I need to catch up on sleep anyhow, it's been a tough few months.  Take it on an empty stomach, yes?  As opposed to with a meal.  Meals are protein shakes lately, It still hurts too much to chew.  Ah, for a nice steak!!!  Maybe when I have enough of it in my system, I can chew on some meat... hamburger just isn't the same, kwim?  

thanks so much, H!

Hi Patti,

I don't have any experience with Trileptal but can only relate what I did when I started taking Fosamax, which played havoc with my D3, calcium and PTH.  I doubled my dry D3 to 100,000 IUs a day and increased my calcium citrate to 3,600 mg a day. I use Vitalady's capsules to decrease the constipation issue that Citracal causes me. I've seen some folks taking as much as 150,000 IUs of dry D3 but I didn't have to increase it that much. When I Googled Trileptal it mentioned electrolyte imbalance as a potential side effect, so I hope you're able to get your docs to check your sodium and potassium often as well. Good luck with all this. I'm so sorry you're having to deal with it.

--gina

Thanks, Gina!  I can always count on your advice, very much appreciated.  If I could just get them to run the labs and call me with orders of what to do instead of having to pay out for every visit, that would be awfully nice.  As it is, I see several specialists a couple times a year... how did I ever find the time to work?  Now my job is seeing doctors, lol!  I'll have to call my endo because he has me on a diuretic to help prevent kidney stones, see what he thinks about all the electrolytes going out of balance.  The man is a genius, so I will follow up first with him after I see my neuro again next month.  I forgot how trileptal woozes me out.  whew.  And I already have bouts of double vision with the MS, so this is ever so much fun (NOT).  On top of all of this, I'm grieving the loss of my best friend.  I see the flag every day that the Marines gave me at the BG William Doyle on Wednesday.. and I am filled up again.  When it rains it pours!!