Hello Friends

[Patti Lieb]

I’m 74 yrs young - a 14-year-out DS veteran currently keeping up on new findings for us DS peeps. My surgeon was Dr. Marchesini in Curitiba Brazil. I’m a diabetic on an insulin pump so have dietary needs in addition to malnutrition. Can be complex. This month I had my first iron infusion with another treatment scheduled next week. First time I have been anemic since surgery. I am super conscientious about my meds and vitamins but find I’m losing a lot of vitamin efficacy lately. Keep me posted on new ideas please.

 

[DianaCox]

I am 15 years out, 65 years old. My vitamin needs have increased over time. Iron is a tough one - amazing you haven't needed an infusion before this!

Give us a list of what you're taking, both dosage/frequency and BRAND. Some are less good than others.

 

[Patti Lieb]

These are the vitamins I’m taking this week. I change brands frequently to see if the changes make a difference. Since I’m diabetic I check my blood work 4x yearly.

Vitamins
AM PM BRAND
Alpha Lipoic acid 200 mg 1 Jarrow
Calcium Citrate 525 mg 4 x Bone-Up Jarrow
Calcium Citrate with D3 1000 (600) 1 1 Solar
Multi-Vit Kirkland
Vit A 10,000 mg 1 GMC
Vit B12. 2500 mcg. 1 NaturesBounty
Vit D3 20,000 mg 1 1 NaturesBounty
Biotin 5000 mcg 1 Natrol
Vit K 2 100 mcg 1 1 Jarrow MK-7
Vit K2. 100 mcg. 1. WholeFoods
Vit C 1000 mg 1 - Kirkland
Vit E 400 I.C. 1 Solaray
Iron 65 mg 1 NaturesBounty
Ferrex 150. 100 u
Feosol. 65 mg
Fish Oil 1250 mg 1 1 Kirkland
CoQ10 350 mg 1 1 WholeFoods
Align Probiotic 1 P&G
FiberCon 2 Pfizer
Turmeric 1000 mg 1 Youtheory
Aspirin. 81 ml

 

[DianaCox]

Are your fat soluble vitamins (A, D3, E and K1 and K2) all dry/water miscible forms?

Are your calcium citrate doses TWO tablets per dose? (Look at the bottle - one dose = 2 tablets)

Zinc? Many of us need to supplement with zinc.

 

[Munchkin]

Hi Patti and welcome. I am also 15 years out.

 

[JackieOnLine]

Hello, Patti!

 

[southernlady]

Welcome Patti Lieb

 

[Patti Lieb]

Dry vitamins are so expensive. Which ones do you use?
I always check portion size. Right now using Jarrow brand Bone - 3 per serving plus I add to that.
I’ve used zinc before. It’s in range now so I stopped.

I will send you the medications I take daily. I’m a pill-machine!

Novolog 38-50 units Dr. William Kaye Endocrinologist
Synthroid .75mg 1x AM Dr. William Kaye Endocrinologist
Creon 1200 units 3-4x w/ meals Dr. Raul Rosenthal Gastroenterologist
Omeprazole. 40 mg 1x AM 1x PM Dr. Raul Rosenthal Gastroenterologist
Quetiapine Fumarate 50 mg 1x PM Dr. Carl Spirazza Internist
Effexor (Venlafaxine) 150mg (2x75mg) 1x AM 1x PM Dr. Carl Spirazza Internist
Simvastatin. 5 mg 1x AM Dr. Carl Spirazza Internist
Lisinopril/HZTC 20/12.5 mg 1x AM Dr. Carl Spirazza Internist
Evista (Raloxifene) 60 mg 1x PM Dr. Carl Spirazza Internist
Azelastine Nasal spray #1 spray Dr. Carl Spirazza Internist
Nitrostat 1/150 (as needed) Dr. Michael Lewis Cardiologist
Famotidine 40 mg. 1x AM 1xPM. Dr. Dosch

 

[Patti Lieb]

By the way I am feeling well except for the blood issues.

 

[DianaCox]

Why are you taking famotidine (H2 antagonist) and omeprazole (PPI) prescribed by two different doctors, presumably both for reflux?

I assume your Synthoid dose is a mistake - do you mean 0.075 mg, or 75 micrograms?

Why are you taking Creon?

That is a lot of medications. I would be concerned that there could be unexpected interactions - I hope you at least get them all from the same pharmacy so they can look out for the most obvious ones. Your liver has to detoxify/metabolize all theses drugs. I would start looking for what could safely be cut back.

 

[Patti Lieb]

I agree. However I always hand the nurse in the room the list of vitamins and meds and assume that she and the doctor both look at my maladies and my list.

Oh dear.

The bariatric doctor who works with DS patients prescribed Creon. He said it’s important for pancreas enzymes to treat malabsorption.

Synthroid is 0.075 as you stated.

I will check the duplicate. Is Lisinopril also in that group?

 

[southernlady]

The bariatric doctor who works with DS patients prescribed Creon. He said it’s important for pancreas enzymes to treat malabsorption.

Are you borderline underweight? Your labs in the toilet? Those are the only two reasons I know for DSers to take creon.

 

[Patti Lieb]

Dr. Raul Rosenthal is head of Bariatrics for the Cleveland Clinic in Weston FL and Head of Surgery at the same facility for all disciplines. I hardly think he does not have good reason to have me on Creon, the single pharmacy medication he has recommended to me. What is your expertise in this area, if you don’t mind my asking.

 

[DianaCox]

Is he a DS surgeon? Did you have issues with malnutrition? Underweight? Because Creon “undoes” some of the benefit of the DS, by providing the enzymes deliberately kept away from your food until the common channel by the surgery. Do you not know why this drug was prescribed for you?

I have a PhD in medical biochemistry and molecular biology. And 15 years post-op as a DS advocate.

I have NEVER in 15 years of constantly being on DS message boards and talking to DS surgeons heard of anyone taking Creon except as a rescue from malnutrition, in particular protein malabsorption and/or excess weight loss. And in that case, usually more than the dosage you’re taking. I’m not an MD, but that looks like a pointless subtherapeutic dosage* for the purposes I’ve ever seen it used. So I’m curious why you are taking it.

* https://www.drugs.com/creon.html
Initial dose is 500 units/kg per meal. Assuming you weigh 165 lbs or 75 kg, that is 37,500 units PER MEAL.

 

[hilary1617]

Hi @PattiLieb,

The main point of a DS is to have selective malabsorption, so we don't typically see people who have had DS who take Creon except for those who are looking to gain wait or who have nutritional issues. I took Creon after a cancer surgery where part of my pancreas was removed and it helped me gain weight. It also caused burning tailfeathers which was successfully treated with Welchol (bile salt sequestrant).

Dry forms of the fat soluble vitamins (A, D, E, K) are the versions that DSers patients can readily absorb. Oil-based vitamins are largely not helpful to DSers, most of their content ends up being flushed down the toilet.