Vitamins and the DS

[Proteinsnob 10]

She's already well known as a long-term vet with good information. But I've honestly never heard of you before (not trying to be rude, just have never seen you and I've been around a long time). What I have heard of is people dying from bad information. I got the same lame advice from my RNY surgeon 12 years ago about the Flintstones Vitamins. I added a specialty bariatric Iron Vitamin that I'd rather not name which turned out to be junk. I trusted that company. Well, I have trust issues now. Show me the labs. My Iron levels plummeted and I ended up needing infusions. I didn't find out about labs and Vitalady until my health was impacted.

I care more about someone dying than I do about hurt feelings and I would question anyone who had different priorities.

Edited December 24, 2013 by Proteinsnob

[Proteinsnob 10]

Actually, sheesh, I just realized I am further out than 12 years from RNY. It's closer to 15 now.

[Sheanie 29]

Arts: despite your insistence that I am not "playing nice", Carly is now charting her own lab values on a spreadsheet and most likely will be spotting her own deficiencies. Now, if that occurred because of me, perhaps, not "playing nice", then I will be the one throwing sand in the sandbox at recess. I have also (gasp!) been known to run with scissors.

As for my "credentials", I don't owe you any such explanation. But, for anyone wondering, I am not a doctor nor do I hold any medical degree. I do have a medical background and have extensive knowledge of medical information. I have learned about my DS and Vitamins and I chart my own lab results on a spreadsheet. I follow my own Vitamin trends, spotting deficiencies before they happen.

If I had truly been offensive, I would hope that a moderator or the forum owner would have sent me a PM to that effect. As I have not received any such notice, I am confident that my advice was welcome.

If "nannying" is allowed to run rampant on this forum, it will certainly be scaring away other "vets".

[carly0426 8]

Thanks everyone. I appreciate all the advice and the passion behind it. Went back to my regular doctor and she said I have TOO MUCH B12. I'm an ultra absorber :-)

[Elisabethsew 50]

I "found" vita lady when my medical MD proved that he knew nothing about post-op DS requirements and appeared not to have an interest in learning. People who have blood drawn have the right to receive a copy of their results. Like others, I track my labs on a spread sheet. The ones I have to keep an eye on are Iron (Fe), Iron saturation, ferritin, total iron binding capacity (TIBC), and Vitamin D. I absorb little to no Fe and need to get infusions once or twice a year. It's very important to be informed and trend your blood work.

[Sheanie 29]

I, too, needed Iron infusions. Funny thing, though, after infusions I can now absorb Iron orally. My ferritin is actually coming up nicely on Proferrin Forte, which I now am getting by prescription, so that's a savings for us. At $50 per bottle, that's the most expensive Vitamin I take. But it's cheaper than infusions, so I'm not complaining.

B12 is Water soluble, mine is very high as well, and I'm not concerned.

I also follow the Vitalady DS regimen, but I tweak how much I take of my A and D according to my lab results.

[Elisabethsew 50]

I've tried a lot of OTC and prescribed Fe oral replacements but not Proferrin Forte. I'll have to give it a try. My medical MD is useless as far as post-op DS goes but trusts me enough to honor my suggestions. Presently, I'm at a Ferr of 7 and an Fe sat of 4. I needed to get through x-mas and will be scheduling Fe infusions (Infed) in the next week. I last got one in Feb. I'm glad to hear you're absorbing it better. Thanks for the tip. Merry Christmas.

I, too, needed Iron infusions. Funny thing, though, after infusions I can now absorb Iron orally. My ferritin is actually coming up nicely on Proferrin Forte, which I now am getting by prescription, so that's a savings for us. At $50 per bottle, that's the most expensive Vitamin I take. But it's cheaper than infusions, so I'm not complaining.

[Sheanie 29]

Holy shit, Elisabeth! Pardon my French, but is your Ferritin 7? As in SEVEN? I do hope I misread that. Mine was 9, and I was blacking out at work when I stood up. I can't imagine how horrible you feel at 7. My hematologist infuses at a Ferritin of 50. He is very young and says he prefers not to let patients become symptomatic before infusions. Love that man.

I do hope you get in soon for your infusions. My hematologist wrote my Rx for Proferrin Forte, but a regular doctor can write it as well. I was unable to absorb oral Iron pre-DS. One time while pregnant I actually got my Iron up by taking dessicated calves liver capsules and liquid chloryphyl (sp) on the advice of my midwife. Now, because of mad cow disease, calves liver capsules are very difficult to obtain. Proferrin works for me. I hope you have the same good luck that I did after infusions with it.

I really think that since most DSers stop taking oral iron after needing infusions that it's quite possible that we might be able to absorb iron orally once our levels are up again with infusions. But, apparently, most of the older hematologists advised patients to not bother with oral iron after infusions. So we just didn't know.

[LilyKeaton 3]

Ok, I found nothing offensive to the poster in the way Sheanie expressed herself Arts so it would help me to understand what is acceptable here if you would rewrite it the way you think it should have been given. Thanks

[Sheanie 29]

Lily, he took exception (I think) to me calling Carly's DOCTOR an idiot. Which is hilarious when taken in context, because I'm married to one. My husband readily admits he knows absolutely nothing about Vitamins. They don't teach that in dental school, or medical school. So I think what Arts was upset about was my calling an idiot an idiot.

It's all relative. Once I realized I couldn't depend on my surgeon and family doctor for Vitamin help, I moved on to the ones who could really help me: Vitalady and the DS forums and veterans on those sites.

People who get offended usually haven't had their eyes opened yet by having their Vitamin levels tank from following bad advice. I have. So I recognize idiots when I see them. A surgeon who recommends Flintstone Vitamins is an IDIOT, unless he's a pediatrician, that is.

My Vitamin A tanked while taking Celebrate DS Essentials, which contained absolutely NO Vitamin A whatsoever. I took those because my surgeons office sold them to me as an all-inclusive ADEK that was everything I would need. I learned the hard way that my surgeon gave bad advice. I hope to help other DSers with my experience, so that they do not have to learn the way I did.

[Elisabethsew 50]

Hi Sheanie,

No, your eyes did not deceive you. My ferritin is currently at 7 and my Fe sat is at 4. I had Fe deficiency anemia before surgery and after tons of testing it was determined I don't absorb Fe. My H&H is steady at 11/34 but that will soon fall. Working 2 jobs (one on the night shift) means I am always tired but when I notice I am winded going up stairs, that's the signal that tells me my H&H is falling. I called the hem-onc today and the office was closed so I'll try on Monday.

Holy ****, Elisabeth! Pardon my French, but is your Ferritin 7? As in SEVEN? I do hope I misread that. Mine was 9, and I was blacking out at work when I stood up. I can't imagine how horrible you feel at 7. My hematologist infuses at a Ferritin of 50. He is very young and says he prefers not to let patients become symptomatic before infusions. Love that man.

I do hope you get in soon for your infusions. My hematologist wrote my Rx for Proferrin Forte, but a regular doctor can write it as well. I was unable to absorb oral Iron pre-DS. One time while pregnant I actually got my Iron up by taking dessicated calves liver capsules and liquid chloryphyl (sp) on the advice of my midwife. Now, because of mad cow disease, calves liver capsules are very difficult to obtain. Proferrin works for me. I hope you have the same good luck that I did after infusions with it.

I really think that since most DSers stop taking oral iron after needing infusions that it's quite possible that we might be able to absorb iron orally once our levels are up again with infusions. But, apparently, most of the older hematologists advised patients to not bother with oral iron after infusions. So we just didn't know.

[LilyKeaton 3]

Thanks Sheanie

Edited December 28, 2013 by LilyKeaton

[Elisabethsew 50]

I was shocked at the Flintstone Vitamin suggestion as well. I picked a bottle up while shopping and on the back of the bottle it advises twice the amount for adults. This is for people who are unable to swallow Vitamins and certainly would not meet the needs of a DS patient. This illustrates the need to not assume an MD is all knowing. If anything, surgeons enjoy the actual procedure and turf most patients to follow-up with a PCP.

[Sheanie 29]

Yes, Elisabeth, and it's also scary when you consider that the labels are directed to "normies", or non-DS people. Our needs are not addressed on the backs of any bottles anywhere.

Our needs are dictated by the results of our labs.

[DSwitcher 35]

Sheanie, My Celebrate chewables, have A, D and E, a little low on the K. I had planned to add an ADEK after surgery. Does that seem sufficient for the basic multi? I will, of course take other supplements...