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Post by patngin on Dec 19, 2014 21:32:52 GMT -5
Well I finally got in to see the Hemotologist. He told me that the reason for my iron being so low was a combo of Hep C and malabsorption. He put me on 325mg ferrous sulfate for 12 weeks and cleared me for the cure. If it works which it should it does for 95% of the people with my genotype we will check it out and I probably can take a lot less. Since one of the drugs used in the cure causes anemia and I am already there this should keep me in a normal range till its over then a lesser dose. The GoLytley almost killed me because my body absorbed it since I didn't have enough hydration in my body for it to draw out and go through me. I also found out since I decided against the 2 barrium things that it turned out to be a good choic because they wouldn't have gotten a good look at the small bowel anyway because of the DS. Now for the cure the price is $84000 for 84 pills. Glad I have the VA. Haven't gained any weight but haven't lost anymore either. They did an ultra sound of my liver and it looked good.
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Post by newyorkbitch on Dec 19, 2014 21:44:31 GMT -5
Well I finally got in to see the Hemotologist. He told me that the reason for my iron being so low was a combo of Hep C and malabsorption. He put me on 325mg ferrous sulfate for 12 weeks and cleared me for the cure. If it works which it should it does for 95% of the people with my genotype we will check it out and I probably can take a lot less. Since one of the drugs used in the cure causes anemia and I am already there this should keep me in a normal range till its over then a lesser dose. The GoLytley almost killed me because my body absorbed it since I didn't have enough hydration in my body for it to draw out and go through me. I also found out since I decided against the 2 barrium things that it turned out to be a good choic because they wouldn't have gotten a good look at the small bowel anyway because of the DS. Now for the cure the price is $84000 for 84 pills. Glad I have the VA. Haven't gained any weight but haven't lost anymore either. They did an ultra sound of my liver and it looked good. I will bet that the oral iron will not be sufficient. |
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Post by bboop on Dec 19, 2014 23:42:51 GMT -5
Get an infusion...why fool around? Get with it.
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Post by patngin on Dec 20, 2014 1:44:51 GMT -5
Oh I didn't mention I have to take 1 pill twice a day with food. So thats 650 mg. When I was on the supplements before I was ok with my iron levels it didn't crash till someone on another forum for Hep C told me I was not supposed to take iron supplements. If I get on the treatment they will be checking my iron at least every 2 weeks so if it is not sufficient they will know right away.
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Post by newyorkbitch on Dec 20, 2014 7:45:54 GMT -5
I think it's just ridiculous that you don't get an infusion. All that iron taken orally is going to have digestive implications, and you malabsorb it. Why is the hematologist opposed to giving you some infused iron?
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Post by Simba on Dec 20, 2014 8:34:11 GMT -5
I am not sure what you mean by "Well I finally got in to see the Hemotologist. He told me that the reason for my iron being so low" dont know what you mean by so low, what is low? low end of normal, or a diagnosis of IDA? Diagnosis of IDA in most patients can be made based on the measurement of a low serum Fe and low serum ferritin with an elevated TIBC. A low serum ferritin (<12 ng/mL) is virtually diagnostic of Fe deficiency and Fe infusions are recommended with a malabsorptive condition. If you are in this range, serum ferritin (<12 ng/mL), there should be no reason to be taking the oral Fe, and definetly not ferrous sulfate! ferrous sulfate is not absorbed well or tolerated, and will chop up your gi system. a hem/onc recommended this and not proferrin forte? I hope you are taking oral Fe because you are NOT actually IDA, if you are diagnosed with IDA then you should be put on Fe infusions and see a different hem/onc, even a PCP will order Fe infusions if you are indeed diagnosed with IDA.
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Post by newyorkbitch on Dec 20, 2014 14:19:18 GMT -5
I am not sure what you mean by "Well I finally got in to see the Hemotologist. He told me that the reason for my iron being so low" dont know what you mean by so low, what is low? low end of normal, or a diagnosis of IDA? Diagnosis of IDA in most patients can be made based on the measurement of a low serum Fe and low serum ferritin with an elevated TIBC. A low serum ferritin (<12 ng/mL) is virtually diagnostic of Fe deficiency and Fe infusions are recommended with a malabsorptive condition. If you are in this range, serum ferritin (<12 ng/mL), there should be no reason to be taking the oral Fe, and definetly not ferrous sulfate! ferrous sulfate is not absorbed well or tolerated, and will chop up your gi system. a hem/onc recommended this and not proferrin forte? I hope you are taking oral Fe because you are NOT actually IDA, if you are diagnosed with IDA then you should be put on Fe infusions and see a different hem/onc, even a PCP will order Fe infusions if you are indeed diagnosed with IDA. I have rarely seen a PCP who will deal with anemia and order iron infusions. People are usually referred to hematologists, which I think is appropriate. I agree that he should be infused, and that ferrous sulfate is not a good idea. Pat - your hematologist, unfortunately, does not understand how to deal with your malabsorption. You need to either find another hematologist, or speak to him about infusions and taking another kind of oral iron. Did the hematologist say you have iron deficiency anemia (aka "IDA") ? Can you please post your serum iron level, your ferritin level, and your TIBC level? And your whole CBC? |
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Post by Simba on Dec 20, 2014 15:10:26 GMT -5
My PCP has been RXing Fe infusions for IDA patients for many many years, and I am one of those patients.
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Post by newyorkbitch on Dec 20, 2014 15:35:33 GMT -5
My PCP has been RXing Fe infusions for IDA patients for many many years, and I am one of those patients. You're very lucky. I have a wonderful PCP, and I also have a wonderful hematologist. With my hematologist, I don't need a prescription - I just make an appointment, I walk in and I get a 5 minute push infusion of feraheme, and that's it. I do that 3 times a year. Perhaps you could share the name in case anybody else is near enough to make use of such a PCP. Also, who is the surgeon you spoke of whom you trust for postop nutritional advice? That would be helpful too. Also, would you mind cutting down on the abbreviations and jargon? Lots of people here would benefit from easier to understand language usage. Thanks. |
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Post by Simba on Dec 20, 2014 15:52:58 GMT -5
My PCP has been RXing Fe infusions for IDA patients for many many years, and I am one of those patients. You're very lucky. I have a wonderful PCP, and I also have a wonderful hematologist.
yes I think we are, my PCP is great, I self direct my care. IDA is very common and it is not necessary to see a hem/onc just for that, but your PCP has to be familiar with this treatment, just like anything else. Personally if I had IDA that did not respond to Fe infusion in 3 months I would go to a hem/onc, either something else is going on and you need to try different Fe infusions, then I think a hem/onc is warranted.
hopefully the OP is familiar with IDA treatments and advocate for himself or at least make sure he seeks proper medical professionals that can, but as a DSer we always have to advocate and educate our medical providers. |
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Post by newyorkbitch on Dec 20, 2014 16:31:15 GMT -5
Pat is not familiar with IDA or related treatments, which is why it's better to explain things clearly without too many abbreviations and jargon.
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Post by patngin on Dec 21, 2014 13:33:14 GMT -5
I do know I have had a very bad reaction to an infusion of human albumin. I thought I read somewhere that can rule out iron infusion.
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Post by patngin on Dec 21, 2014 14:02:04 GMT -5
Also Rx is for Ferate tabs supposedly highly absorbable formula.
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Post by newyorkbitch on Dec 21, 2014 15:12:58 GMT -5
I do know I have had a very bad reaction to an infusion of human albumin. I thought I read somewhere that can rule out iron infusion. Did you not speak to the hematologist about this? |
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