Are these lab test necessary?

Marquis Mark

Well-Known Member
According to DSFacts.com, the following lab tests are recommended for DS patients

See: https://www.dsfacts.com/blood-work-and-lab-orders.php

I've never heard of the ones in red. What are they? What is their purpose and how necessary are they?

Also, I believe copper should definitely be added to the list. My copper has plummeted since the DS and I just had to get three infusions. I was taking 40 mg a day and none of it was absorbing. The only doc who seems to recommend copper is Rabkin. It's not on Keshishian's list.

Laboratory tests
CBC, platelets
Electrolytes
Glucose
Iron studies, ferritin
Vitamin B12
Liver function
Lipid profile
Albumin and Pre-albumin
RBC folate
Fat-soluble vitamins (6-12 months)
- Vitamin A
- Vitamin D, 25-OH
- Vitamin E
- Vitamin K1 and INR
Metabolic bone evaluation
- Intact PTH
- 24-Hour urine calcium
- Urine N-telopeptide (annually)
Metabolic stone evaluation (annually)
- 24-Hour urine calcium, citrate, uric acid and oxalate
Zinc
- Trace elements (annually or as needed)
- Selenium
Miscellaneous (as needed)
- Carnitine
- Essential fatty acid chromatography
 

Larra

Well-Known Member
I haven't had ANY urine tests thus far and have never heard of that one.
And as fate would have it, I just read something about carnitine. In the past, it was thought to be a vitamin and was even given the name B7. But it isn't. It was also thought that people needed to consume it, but actually the liver and kidneys will make it if you need it. The reason for the article was regarding a question about carnitine's supposed weight loss properties, which, in fact, and nonexistent, but there was a lot of good info about carnitine in the article.
I have no idea why essential fatty acid chromatography would be needed. Yet another test I've never had (almost 12 years post-op now).
I do agree that copper should be on the list. You aren't the first person around who has rapidly become copper deficient. I've been ok, but I do get it checked.
 

Marquis Mark

Well-Known Member
I haven't had ANY urine tests thus far and have never heard of that one.
And as fate would have it, I just read something about carnitine. In the past, it was thought to be a vitamin and was even given the name B7. But it isn't. It was also thought that people needed to consume it, but actually the liver and kidneys will make it if you need it. The reason for the article was regarding a question about carnitine's supposed weight loss properties, which, in fact, and nonexistent, but there was a lot of good info about carnitine in the article.
I have no idea why essential fatty acid chromatography would be needed. Yet another test I've never had (almost 12 years post-op now).
I do agree that copper should be on the list. You aren't the first person around who has rapidly become copper deficient. I've been ok, but I do get it checked.
I'm very grateful I checked Rabkin's list and insisted on copper tests. Lack of copper can cause permanent nerve damage. Get it tested, ya'll.

Any other labs (not on the list above) that people recommend getting tested and, if so, why?
 

Settledownnow

Well-Known Member
I also get B1, B6, and Folic Acid (B9) tested.

Where did you go to get a copper infusion? Did your PCP order it or did you go to an endocrinologist or ? I'm having significant eye issues related to low Vit A and need an injection very badly but apparently, there is a short supply. I'm taking 100K Vit A daily and my level is still low.
 

Marquis Mark

Well-Known Member
I also get B1, B6, and Folic Acid (B9) tested.

Where did you go to get a copper infusion? Did your PCP order it or did you go to an endocrinologist or ? I'm having significant eye issues related to low Vit A and need an injection very badly but apparently, there is a short supply. I'm taking 100K Vit A daily and my level is still low.
My DS surgeon at Kaiser So-Cal ordered it for me. They're pretty rare. The Kaiser infusion nurse said she'd only seen one other. They use Curpic Chloride. I'm getting my Copper/Cerruloplasmin retested in a couple of weeks. Sure hope it works. Otherwise, I'm screwed and may have to reverse this thing.

Doesn't Keshishian have Vitamin A injections?
 

Settledownnow

Well-Known Member
My DS surgeon at Kaiser So-Cal ordered it for me. They're pretty rare. The Kaiser infusion nurse said she'd only seen one other. They use Curpic Chloride. I'm getting my Copper/Cerruloplasmin retested in a couple of weeks. Sure hope it works. Otherwise, I'm screwed and may have to reverse this thing.

Doesn't Keshishian have Vitamin A injections?
I hope it works for you! There seems to be a problem getting vit A from the manufacturer and Dr. K's office is trying to locate a new source. As of right now, they are not giving Vit A injections.
 

DianaCox

Bad Cop
My DS surgeon at Kaiser So-Cal ordered it for me. They're pretty rare. The Kaiser infusion nurse said she'd only seen one other. They use Curpic Chloride. I'm getting my Copper/Cerruloplasmin retested in a couple of weeks. Sure hope it works. Otherwise, I'm screwed and may have to reverse this thing.

Doesn't Keshishian have Vitamin A injections?
I think you mean cupric chloride.

I have a friend in SoCal who has a Rabkin DS, who is having copper issues too - I will ask him how he's handling it. He's 14 years out. (He was a friend from college, who was about to have an RNY when I discovered the DS - I begged him to not do it. He said he'd wait and see how mine went in Aug 2003, and if I didn't die, he'd look into it. He came up to NorCal to get his in Jan 2004).
 

Marquis Mark

Well-Known Member
I hope it works for you! There seems to be a problem getting vit A from the manufacturer and Dr. K's office is trying to locate a new source. As of right now, they are not giving Vit A injections.
Availability of supplements is one of things I find most disconcerting about the DS. There are very few affordable suppliers of the dry A, D & K we need by the truckload. If the Bio-Tech company every went out of business this board would light up like a Christmas tree.

On top of that, not many people have access to Vitamin D & A shots. I'm lucky I live within driving distance to Dr. K, but even he now charges an office visit with every injection. He used to just charge for the injection, once you were a patient and showed him your lab results.

Anyway, good luck. I'm rooting for you.
 

harrietvane

Well-Known Member
I have regular Vitamin D shots that cost me SGD80 a pop (not covered by insurance), but when my Vitamin A was low, my PCP also couldn't find anyway at the hospital to get a Vitamin A injection. The best the pharmacy came back with was a ridiculous TPIN suggestion.
 

Settledownnow

Well-Known Member
Even my eye doc says the cause of my eye issues are related Vit A deficiency but she cannot give Vit A injections. Of course, all the eye docs in the office will inject dermal fillers and botox upon request. It does not make sense. So, I fly to CA to see Dr. K. (when A is available). Talk about a pricey vitamin injection.
 
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