Recent Posts
on 5/7/19 8:34 pm
Try and find a doctor that will administer injections to get you out of deficit. It maytake more than one. Once you stabilize you will need to take DRY vitamin ADEK supplements and more than you would think you would need.
You need to find a DS doctor right away as you probably have other issues going on. Calcium PTH among them.
I think, unfortunately, that doctors like yours still believe that you don't need to know anything, that he knows exactly what you need and you should never, ever question a doctor, let alone tell them no. He works for you, not the other way around.
Hopefully the doctor recommended to you will be a little more amenable to work "with" you.
Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175
I get ya for sure! If our patient/doctor relationship wasn't what it is, I would "Fire Him!" He doesn't see it as abandoning me. He just sees it as agreeing to "not agree!!" For example, our hospital (_____ Hospital). Yes, My Doctor is Dr ____ (same name as Hospital) from a long list of Dr ______!!! (Small town-One Hospital) Anyway, our hospital lab reports Vitamin D as having a range of 30-60. My lab results say that my D is >60. I explain that I need to know the "actual" result. (I didn't tell him that want my D to be at the very least 80 or better yet in the range of 80-100.) He said that is ABSOLUTELY not necessary. He said, "At a result of >60, You need to cut back on D." He doesn't know... that I take 50,000 a day and an extra 50,000 on M/W/Th for a total of 500,000 a week. He would have a cow!!! I asked him to state in his order for the labs that he wants the actual results for Vit D. He said that he didn't know if they would do that... I told him how I had called the lab and was told that if the doctor ordered it they would do it. He didn't write that request on the order which I noticed when I checked out. I asked for someone to ask him to note the request on his order. The nurse took the order and wrote it in herself and initialed it. I get the labs done later this month....who knows ???? In hindsight, I should have ... As the Vets always say.... just smile, nod and do what I need to do. He is TOTALLY FREAKED OUT at the amount of labs that I want. ( I show him about 8 examples of lab requests used by other doctors. They even have the doctor's names on them!!!) He's so afraid that "he" will be held accountable. He said that he wouldn't lie and say that I was deficient when I wasn't. I of course go "on and on" about why I'm not deficient and how I need the labs to monitor how I'm doing. How the labs are a preventative measure. He's afraid that I'll get bills for $1000s of dollars for labs that are not approved. He has reluctantly ordered the labs for years. I don't know why he feels he should take a stand NOW!! ?sad face!
BTW: My surgeon is at Johns Hopkins and is an amazing cutter. (I'm 10+ years out) His staff follow-up is horrible! In his support group, I was told to take Flintstone Vitamins!!!! Really!!!!!!!!! When I went to the NUT, I was treated as a Gastric Bypass patient - RNY. Low fat...count calories...on and on. You know what that means........ yes, I should try again since it's been over 10 years. It's my understanding that they don't do the DS much if at all anymore. It's 3 hours away, but I may go that route and try again!
Well, At this point I'm just rambling. Without DS sites like this one and the 6 sites that I follow on Facebook, I would be lost!!!
I do have one doctor in my small town that has been suggested by someone that I trust. I'm going to meet with her. I'm also going to.... in a nice way tell my doctor that if he can't support me on my journey, I'll need to find another doctor. He's 68 years old, maybe he just isn't able to meet my medical needs any more. By writing all this down for you, I find it very cathartic. It has given me perspective on this issue that is very emotionally painful and consuming. Thank you for helping me in a way that I didn't know I needed! A way that you didn't know would help me. Advise to "Just Fire Him" fell on deaf ears with me. Now, I feel free to make some emotionally comfortable decisions, and It's a "Good Thing" Thank you for opening this door for me. Sometimes, just a kind word or sharing thoughts of compassion mean so much. Thank you for helping me!!! ð?'?ð?'?ð?'?
I'm so sorry your doctor has abandoned you like that (sorry but that's exactly what he's doing). I hope you can find another doctor who's willing to work with you. Obviously he doesn't understand the word "preventive" because that's what our labs are - to keep us from getting deficient.
Is there a hospital that might be able to recommend someone? When I was shopping around for doctors (I'm fortunate to live with tons of doctors to choose from) I would actually make an appointment and interview them. I always made it clear that I had very specific needs and didn't want to waste the doctor's (or my) time if they weren't willing to work with me (at least to learn and understand my needs). I'm so thankful that my current doctor was willing (and almost excited) to learn all about the DS.
Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175
I had a duodenal switch back in 97 or 98. I have become severely deficient in Vitamin A which effected my vision and even though I am deeply tanned from a florida vacation i am very low in vitamin D as well My primary care dr asked me to reach out to ask for help how to treat as he has no experience with this. my dr was in virginia does anyone get vitamin infusions/ Please i don't know where to begin to get helpand I don't want the night blindness to return
If only it were that easy!!!!!!!!!
He doesn't understand the DS and sees no reason to order so many labs. When the results come back good for normies, it reinforces his contention that the labs aren't needed. He doesn't need to interpret the results... I can do that and always have vets to help me if necessary. I have been able to convince him to order the labs until this time. He refuses to order the complete DS labs. He told me to find a doctor that specializes in the DS. He feels that I'm not deficient, so he's not justified ordering labs for deficiency. I'm getting upset talking about it!!! He said that he'd write a referral for any doctor that I wanted that specializes in the DS. I have insurance that doesn't need referrals. He's been my doctor for 35 years and tells me every 6 months that I was as he says, "circling the drain" and wouldn't be alive today without the DS. He saw me go from 367.5 pounds to 160 pounds. He has been there for both my parents deaths, my car accident, my DS surgery.....I could go on and on and on. I taught his kids and go to his church. He refers to my surgery as Gastric Bypass. ?. I have shown him tons and tons of research, pictures, testimonies and diagrams. I've physically brought in my cases of vitamins packed for the month, so he can "actually see" how many vitamins that I take to keep my labs appropriate. I say, you didn't tell me to take these vitamins. I know to take them. I take them to keep my labs as they should be!!! As I became frustrated this last time, he agreed to order the labs for the last time. He said that I was getting too upset and he wanted to take my blood pressure because he thought that it was skyrocketing. By the way, I no longer have high blood pressure, high cholesterol, diabetes, sleep apnea or any other condition. I take no medication. I'm a success. (I've had setbacks due to noncompliance a couple times. I'm not perfect!). The doctor and I are the same age and care about each other. This is unfortunate in many ways. I live in a small town and our paths cross in some wonderful ways. "This is just a painful reality that has been coming to a head for about 3 years."
Soooo.... That's my story in a nutshell. There is more history between us that has been wonderful. I love his family. He's wonderful.... except for this!!!
Why wouldn't your primary do this? Mine does because my surgeon is 3 hours away and labs there are out of network. I tell her the labs he requires for the DS and she orders them during whatever checkup I'm at. Obviously she knows what the normal levels of these things would be anyway and if I need anything she orders it.
310/190/170
sw/cw/gw
"I don't cry over spilled milk because I'm lactose intolerant"
