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Post by mlleelise on Sept 7, 2014 22:41:45 GMT -5
Hi all, I'm presently recovering from a 2nd revision with Dr. Keshishian. I went for a consultation and exploratory laparotomy - but woke up with major resection of my small bowel because I had TWO obstructions. Basically, my bowel was corkscrewed from being pulled tightly in one direction by an adhesions, and, further down, was pulled tightly in the opposite direction by another adhesion. Whew! I have an incision from my breastbone down nearly to my pubic bone - much, much bigger than my original DS incision. I guess adhesions are going to be a big problem for me, and I will have to find a local surgeon to check me out regularly. BUT, aside from that....I have been one of those DSers that has not needed much in the way of supplements - other than lots of calcium citrate - because I have been a super-absorber. No gas issues, no diarrhea - and, sadly, poor weight loss. My labs have been wonderful for the last 2 years...until last month. I noticed my Ferritin levels plummeted in the last 6 mos - down to 20 ng/ml from 250. (the ref. range being 13-150). My Transferrin level is 337 (ref range being 200-370) - so that was good. Iron was 109 (ref. 37-145), UIBC was 269 (ref. 112-346), TIBC was 378 (ref. 250-450). and % Saturation is 29 (ref. range 14-55%) The only other thing that was off (besides the Ferritin) was the Bun/Creat Ration which was 34 (ref range of 7-29) SO, my question is: how much Carbonyl Iron should I take daily? I started taking 50 mg. a day, along with Vit C...but I have a feeling I should take A LOT more to prevent things from getting worse. Any suggestions would be helpful! Thanks so much!
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Post by newyorkbitch on Sept 8, 2014 7:17:52 GMT -5
You need to see a hematologist, and you need iron infused. Soon.
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Post by Joanne on Sept 8, 2014 7:47:29 GMT -5
Yes
And the high BUN/Creatine ratio most likely means you're dehydrated.
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PeteA
Full Member
Posts: 221
Surgery Date: 4/15/13
Surgeon: Dr. Phillip Schauer
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Post by PeteA on Sept 8, 2014 10:23:53 GMT -5
Did Dr. K. have anything to say about the Ferritin drop? Was the drop after your latest surgery? It could be that it was artificially high from the inflammation caused by the obstructions although I'm just guessing. While I find the drop a little alarming I think you will have a hard time getting someone to give you infusions with all you other numbers being good.
Given your statement about absorption you might consider pushing the carbonyl to 100mg and add 1 Proferrin heme iron per day.
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Post by mlleelise on Sept 8, 2014 23:57:44 GMT -5
Thank you so much for the advice! NYB, I did see a hematologist last year when I had very high ferritin levels...so I will definitely give him a call tomorrow. And Joanne, hi there! I love your new haircut. :-) I drink a TON of water every day, so I don't get how I could have been dehydrated...but those tests were fasting - and not until around 10 AM, so maybe I hadn't had enough water since I had gotten up that day? I will bring it up to my PCP. Pete...no, Dr. K did NOT bring it up - which surprises me too. He got all of the tests pre-op, but, of course, I got copies when I was in CA. I looked at them finally a couple of days ago - and was shocked! I'll up my carbonyl to 100 mg, and add Proferrin heme iron as you suggested - but still will see the hematologist again. I really appreciate all of your advice - thank you all. :-)
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Post by goodkel on Sept 9, 2014 1:17:20 GMT -5
I have been taking 150 mg of carbonyl iron with 150 mg of polysaccharide iron for years with good results. I take them with C and several times a week with copper to assist with the absorption.
I tried the Heme when I was early out with a deficiency at my first set of labs, but they did nothing for me and were too expensive to experiment with long term when other options were available. I have read of others having success with it, though.
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Post by mlleelise on Sept 9, 2014 10:18:22 GMT -5
Thanks for your input and experience, Goodkel. I just found out how expensive the Heme is! I did order one bottle last nite - but if the carbonyl + polysaccharide iron will do the trick, I'll switch to that. Cannot afford $60-90 a month, just for Heme. Is polysaccharide iron the one that's tough on the stomach? I have taken some iron that 'repeats' on me with each burp...really can't stand that! Thanks again. :-)
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Post by goodkel on Sept 9, 2014 11:09:37 GMT -5
I think it is the poly that is supposed to be tough on the stomach, but I have always taken my iron at noon after I have finished lunch. With food in your stomach it may not bother you either.
Your iron probably dropped because of your surgery. I have had two non-DS related surgeries since my DS and both times my values plummeted. They returned to normal in time, as yours might, too.
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Post by Girlrocker on Sept 9, 2014 11:18:35 GMT -5
I found this all very interesting too And yes, Heme/proferrin is pricier, many have tried to get it prescribed (with mixed results) for that reason, so it can be covered under insurance. Deb, I do think getting infused right now to build your ferritin back up is the way to go (if it does not pose a conflict with your medical/religious beliefs). I have only so far, needed the one round (3 treatments total); between that and going into menopause my levels have turned around. Actually, I have just experienced a high ferritin result for the first time (209) and not sure what that means for me, everything else looks pretty good. I'll post my own labs question so I don't hijack here Some people like me do well with an initial infusion boost, than manage through oral; some oral never works for and always need infusions, easily monitored via regular blood work. And considering all you've been through, brave lady! you'll probably want to get your labs done more frequently for awhile, like every 3 months, to keep an eye on things.
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Post by mlleelise on Sept 10, 2014 19:32:12 GMT -5
Thanks for the tip about taking the poly iron with food at lunch, Goodkel. I'll give that a try. Also, Dr. K said exactly what YOU said: he said not to be alarmed; that stress/surgery can result in low ferritin levels. However, my low level was 2 weeks PRIOR to surgery. I do have an appt on Friday with a hematologist, to be on the safe side. Sharyl - I'm all for an iron infusion, no problem there. It will depend on whether or not the doc will do it, if all my other levels are still okay. Like you, I went through a period with high ferritin levels - high enough that the doctor was concerned. I'd rather have that than these low levels. Thanks for the advice! I will stay on top of my labs, for sure!
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Post by mlleelise on Sept 13, 2014 16:28:18 GMT -5
I went to the hematologist yesterday, and he agreed to schedule an iron infusion for Sept 26th - if my insurance company will approve it. I guess it's questionable because I'm not anemic YET - just my ferritin levels are very low. Apparently, it's possible that my insurance company would rather wait til I AM anemic. :-(
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Post by newyorkbitch on Sept 13, 2014 16:31:25 GMT -5
I went to the hematologist yesterday, and he agreed to schedule an iron infusion for Sept 26th - if my insurance company will approve it. I guess it's questionable because I'm not anemic YET - just my ferritin levels are very low. Apparently, it's possible that my insurance company would rather wait til I AM anemic. :-( They can't code it anemia??
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Post by mlleelise on Sept 13, 2014 23:10:53 GMT -5
Good question...I should have asked him that. He just said that the insurance company might not approve it unless/until my iron levels were low. We'll see! I'm taking a butt-load of carbonyl and 1 Proferrin EX a day now; taking it all in the a.m., otherwise it interferes with all calcium etc. But I know that it's not enough to bring my ferritin levels up sufficiently. Have to wait and see...
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Post by mlleelise on Sept 24, 2014 23:28:18 GMT -5
I'm very pleased to report that my insurance company WILL pay for the iron infusion I'm scheduled for on Friday. YAY! Although not anemic, my ferritin level is very low. I'm hoping this will give me some pep...I've been really dragging. Can't wait to get the infusion...
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Post by goodkel on Sept 25, 2014 1:50:11 GMT -5
It should make you feel much better.
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Post by mlleelise on Oct 4, 2014 12:56:18 GMT -5
Well, I got my iron infusion last Friday - with another one scheduled at the end of October. However, I got a really nasty attitude from the administrating nurse. She said I didn't need one - why was I even there, etc. I calmly explained that although my iron levels were okay, my ferritin was not. It made me feel like I was wasting her time. Besides that, the hematologist told me to STOP taking any iron orally. I can understand this, I guess, since I am getting one more infusion at the end of the month...but how will I know when to begin my iron supplement regiment again? Any ideas?
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Post by newyorkbitch on Oct 4, 2014 13:11:51 GMT -5
Ask your hematologist.
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Post by newyorkbitch on Oct 4, 2014 13:23:58 GMT -5
You should have just said to that nurse "this is why my hematologist has recommended" and leave it at that. Argh.
Or next time you can say to her: "here's my hematologists's number, if you think you know better than he does, please call him."
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Post by goodkel on Oct 4, 2014 14:43:57 GMT -5
I would have taken that nurse's name and filed a complaint about her. Saved some other patients from her.
Ordinarily, I wouldn't mind a nurse questioning me, maybe wanting to learn more. But, not with that attitude.
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citizenk9
Junior Member
Posts: 99
Surgery Type: DS
Surgery Date: 10/13/2009
Surgeon: Dr, John Rabkin, San Francisco, CA
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Post by citizenk9 on Oct 4, 2014 15:16:01 GMT -5
I was able to get Proferrin Forte (has folic acid in it) covered by insurance. I also had to wait until my levels tanked before being approved for infusions. I kept showing them I was trending down but it didn't matter until my numbers were low enough. So stupid!
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Post by mlleelise on Oct 5, 2014 21:36:08 GMT -5
Good advice. thanks! I guess I felt intimidated by the nurse, since she had the IV needle in her hand...ready to stab me. ;-) Anyway, I appreciate the advice and will keep it in mind when I go again at the end of the month.
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Post by Joanne on Oct 6, 2014 6:24:39 GMT -5
Agreed. The nurse is there to follow the doctor's orders, not to question them. I wouldn't have given her the courtesy of trying to explain. I would have just said my doctor ordered it.
I'm a bit more bold but I would be inclined to call the administration and let them know you find it inappropriate for that nurse to be questioning your doctor's orders.
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Post by fullhousemom on Oct 6, 2014 16:12:34 GMT -5
Re: the stoppage of the oral iron. Ask your hema about about an iron absorption test. They will draw your blood, you take your oral iron, and they will continue to draw blood every hour for three hours to see if you have absorbed it.
I, too, was told to discontinue oral iron. Had the absorption test done with carbonyl iron and later with the heme. I absorbed none of it. I was told not to waste my money and I now rely on infusions.
Incidently, I had a uterine ablation one and a half years ago and have not needed an infusion since. Prior to that, I needed them evry six months. Good luck!
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Deleted
Deleted Member
Posts: 0
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Post by Deleted on Oct 15, 2014 16:57:35 GMT -5
I just wanted to add my thoughts. I'm not anemic. But I have had very lower ferritin levels. I've been able to bring them up but it's not part (that I know of) the anemia "camp". Even when it was below 10 I still wasn't considered anemic because everything else was great.
Congrats on getting it done and I'm sorry you had a snotty nurse! That's not fun. I've got a lovely staff at my infusion center and they are always happy to see me every 2 months when I go in.
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Post by bboop on Oct 15, 2014 20:11:18 GMT -5
If the nurse is rude to you again, report her to the hematologist. It is none of her business why you are there for an infusion. Your doctor sent you. Unless she now has a medical license. I had iron infusions about six years ago...after my surgery and I was anemic...I can't remember how many I had but now I don't even have to take oral iron. I'm older so I don't have monthly cycles anymore...that could be the cause, but it's sure worth a try. And don't let that horsey nurse intimidate you...she should be spanked.
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Post by mlleelise on Oct 19, 2014 23:22:30 GMT -5
A lot of food for thought! I'm chuckling because I have a picture in my mind now of a 'horsey nurse' getting a spanking, bboop! LOL I really do appreciate all of the advice!
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