Iron Deficiency Anemia. Infusions? Advice? (x-post)
I know, Debbie Downer here. When I was actively losing weight, I saw nothing but rainbows and puppy dogs m'self, but after a couple years, it seems the health issues come out of hiding en masse.
I used to read about that stuff and think, "Well, that stupid slob didn't take their vitamins. Duh."
I have taken my supplements religiously. More than most people, and following all the rules. I have been accountable every day, balanced my diet, and now I am tanking once again.
This time, it's anemia. I started seeing a cardiologist in April because I kept "hitting the wall" when I exercise-- it was suddenly getting harder, and wearing me out. He discovered a new murmur, but nothing major.
In May, I had my hormones tested, because I was so emotionally labile and weepy I wasn't making any sense. We discovered I had three times the amount of estrogen in my system of a normal woman my age, so I started taking HRT. And it was through these labs that we also discovered I am anemic. Which explains why I just haven't been able to get my head up off the floor, bootstrapping or not.
My Ferritin level is a 9. (Normal is 13-50.) Your ferritin is your back-up or storage iron. Once you start depleting that, you're hosed. My red blood calls (normal is 3.8-5.1) went from a 4.3 to 2.9. My iron saturation (nromal is 15-55) is at a freakin' 4.
So my PCP tells me to take some more Carbonyl. Mmmmmkay-- but of course it did not a damn thing. That's the thing with the iron-- you either absorb it orally or you don't. Turns out I don't, and had been living off the stored stuff for three years. So we toussle a bit and he sends me t o a hematologist/oncologist. I watched my labs tank over time, but no one would do anything because the weren't officially *low.*
In 2008, my Ferritin (stored iron) was 149 . Again, today-- it's a 9. NINE. Now, I am *officially* LOW.
I go to the hematologist, and he says, "No, that's NOT normal, that's hideous. We can give you some better iron, if you think that will help." By better iron, I know he means heme iron, which costs me $70 a month, and I have figured out by now will not do squatola to raise iron scores. So I say, "Let's skip the formalities and talk infusion." And he says, "Bigger issue is why you're losing the iron, but yep, I agree, you need the infusion, and you need it now. Like, today. Like, let's go now."
-------------------------------------------------
The infusion lab is also the chemo lab. You immediately are treated very very kindly ("Care for a drink? A cookie?") because the people around you are fighting for their lives. This is humbling. They even offer you a special parking spot, but I refused mine-- as long as I am able-bodied, I am hoofin' it!
I was lucky-- I am getting Venofer. Venofer is an iron sucrose IV. The first infusion lasts about an hour and they watch you very closely for anaphylaxis. I felt fine. I am scheduled for nine more shorter infusions-- each lasting a half hour. (I have now had three so far.) The doc tells me we will retest in a while, but there's a very good chance I will be coming to this blood lab three times a week, cyclically, for the rest of my life.
I had the RNY to get healthy. Truly. And this ain't it. So yep, while I appreciate the smaller size, these sicknesses make me angry. And yes, I am thrilled to have insurance, but the $30 co-pay each time I walk in a doctor's door (and that's 18 times this month) is kicking my ass up and down a street. And while I am so very glad not to be one of the chemo people, it sure is a freakin' bummer to literally spend my entire summer in medical and surgical care, as a direct result of an electove surgery I had on a perfectly functional gastointestinal system.
My friend said, "But hey, you look great." I wanted to kick her ass on the spot. If I end up a gorgeous corpse, I am going to be so effin' pissed.
___________________________________________________________
For those of you who have gone the infusion route:
1) Did you get the level back up and maintain with oral iron, or are you back in for infusions periodically?
2) You get yours in big doses, or smaller ones spaced days apart?
3) Any side effects? (I feel like I wa**** by a bus the day after, just general malaise.)
4) I am noticing a little weight gain-- did you have that as well? How much? Did it come back off after you stopped getting the IV fluids? (I know, it's 30% sucrose and a bag of fluids, so water gain is unavoidable. I don't want to eat less, though, because I feel so weak as it is. SHould I drop back my calories?)
5) How low were your numbers, and did you continue to exercise? Any changes in your exercise routine?
Thanks for any advice/stories you can share.
-S.
I used to read about that stuff and think, "Well, that stupid slob didn't take their vitamins. Duh."
I have taken my supplements religiously. More than most people, and following all the rules. I have been accountable every day, balanced my diet, and now I am tanking once again.
This time, it's anemia. I started seeing a cardiologist in April because I kept "hitting the wall" when I exercise-- it was suddenly getting harder, and wearing me out. He discovered a new murmur, but nothing major.
In May, I had my hormones tested, because I was so emotionally labile and weepy I wasn't making any sense. We discovered I had three times the amount of estrogen in my system of a normal woman my age, so I started taking HRT. And it was through these labs that we also discovered I am anemic. Which explains why I just haven't been able to get my head up off the floor, bootstrapping or not.
My Ferritin level is a 9. (Normal is 13-50.) Your ferritin is your back-up or storage iron. Once you start depleting that, you're hosed. My red blood calls (normal is 3.8-5.1) went from a 4.3 to 2.9. My iron saturation (nromal is 15-55) is at a freakin' 4.
So my PCP tells me to take some more Carbonyl. Mmmmmkay-- but of course it did not a damn thing. That's the thing with the iron-- you either absorb it orally or you don't. Turns out I don't, and had been living off the stored stuff for three years. So we toussle a bit and he sends me t o a hematologist/oncologist. I watched my labs tank over time, but no one would do anything because the weren't officially *low.*
In 2008, my Ferritin (stored iron) was 149 . Again, today-- it's a 9. NINE. Now, I am *officially* LOW.
I go to the hematologist, and he says, "No, that's NOT normal, that's hideous. We can give you some better iron, if you think that will help." By better iron, I know he means heme iron, which costs me $70 a month, and I have figured out by now will not do squatola to raise iron scores. So I say, "Let's skip the formalities and talk infusion." And he says, "Bigger issue is why you're losing the iron, but yep, I agree, you need the infusion, and you need it now. Like, today. Like, let's go now."
-------------------------------------------------
The infusion lab is also the chemo lab. You immediately are treated very very kindly ("Care for a drink? A cookie?") because the people around you are fighting for their lives. This is humbling. They even offer you a special parking spot, but I refused mine-- as long as I am able-bodied, I am hoofin' it!
I was lucky-- I am getting Venofer. Venofer is an iron sucrose IV. The first infusion lasts about an hour and they watch you very closely for anaphylaxis. I felt fine. I am scheduled for nine more shorter infusions-- each lasting a half hour. (I have now had three so far.) The doc tells me we will retest in a while, but there's a very good chance I will be coming to this blood lab three times a week, cyclically, for the rest of my life.
I had the RNY to get healthy. Truly. And this ain't it. So yep, while I appreciate the smaller size, these sicknesses make me angry. And yes, I am thrilled to have insurance, but the $30 co-pay each time I walk in a doctor's door (and that's 18 times this month) is kicking my ass up and down a street. And while I am so very glad not to be one of the chemo people, it sure is a freakin' bummer to literally spend my entire summer in medical and surgical care, as a direct result of an electove surgery I had on a perfectly functional gastointestinal system.
My friend said, "But hey, you look great." I wanted to kick her ass on the spot. If I end up a gorgeous corpse, I am going to be so effin' pissed.
___________________________________________________________
For those of you who have gone the infusion route:
1) Did you get the level back up and maintain with oral iron, or are you back in for infusions periodically?
2) You get yours in big doses, or smaller ones spaced days apart?
3) Any side effects? (I feel like I wa**** by a bus the day after, just general malaise.)
4) I am noticing a little weight gain-- did you have that as well? How much? Did it come back off after you stopped getting the IV fluids? (I know, it's 30% sucrose and a bag of fluids, so water gain is unavoidable. I don't want to eat less, though, because I feel so weak as it is. SHould I drop back my calories?)
5) How low were your numbers, and did you continue to exercise? Any changes in your exercise routine?
Thanks for any advice/stories you can share.
-S.
"Oh sweet and sour Jesus, that is GOOD!" - Stephen Colbert Lap RNY 7/07-- Lap Gallbladder 5/08--
Emergency Bowel Repair 6/08 -Dr. Meilahn, Temple U. Upper and Lower Bleph/Lower Face Lift 12/08
Fraxel Repair 2/09-- Lower Bleph Re-Do 5/09 -Dr. Pontell, Media PA Mastopexy/Massive
Brachioplasty/ Extended Abdominoplasty (plus Mons Lift and Upper Leg lift) / Hernia Repair
6/24/09 ---Butt Lift and Lateral Thighplasty Scheduled 7/6/10 - Dr. Ivor Kaplan VA Beach
Total Cost: $33,500 Start wt: 368 RNY wt: 300 Goal wt: 150 Current wt: 148.2 BMI: 24.7
Wow, your situation is really frightening. I don't have any advice that would help but would like to ask how common this is. Is there any way to know beforehand if you can absorb iron orally? How often do you have to go back for infusion treatments? Three times a week forever or three times a week every couple of months? I really hope the infusions get your levels back up and you can continue to lead a healthy, active life.
Meg
Meg
last year (4 yrs post op), my ferritin level was 3. i was immediately sent to a hematologist and he began infusions ..wanted to do blood transfusion. i received 18 weeks of infusions (sometimes twice weekly)
For those of you who have gone the infusion route:
1) Did you get the level back up and maintain with oral iron, or are you back in for infusions periodically? since receiving the infusions....AND AFTER AN ENDOMETRIAL ABLASION..i have maintained my iron levels orally..(not as high as he'd like to see..but so much better than last year)
2) You get yours in big doses, or smaller ones spaced days apart? i received 100mL fluids w/iron which took about 30 minutes each time...again, sometimes this was twice weekly...eventually went to just once weekly
3) Any side effects? (I feel like I wa**** by a bus the day after, just general malaise.) i ALWAYS felt better immediately after..which lasted for hours ..burst of energy! i was also receiving vit b12 injections weekly at first, then bi-weekly..then monthly ..now i take it sublingually daily.
4) I am noticing a little weight gain-- did you have that as well? How much? Did it come back off after you stopped getting the IV fluids? (I know, it's 30% sucrose and a bag of fluids, so water gain is unavoidable. I don't want to eat less, though, because I feel so weak as it is. SHould I drop back my calories?) since feeling so much better ..and able to get back on track...ive lost 20 pounds...yes, i was exhausted, sluggish, short of breath .. no, i dont think you should limit calories now..you need as many as you can get...but verify that with your doctor.
5) How low were your numbers, and did you continue to exercise? Any changes in your exercise routine? after a year, my ferritin is still only 16 ..i go back to my hematologist every 4 months now as follow up i did not exercise...i had ZIPPO energy and just didnt feel well..after i starting feeling better ..and after my last follow up where the hematologist cleared me ..i exercise with no issues now
i ended up having to have an endoscopy to rule out gastric bleed or ulcer..and then due to my very heavy menstrual cycles, had the endometrial ablasion done...this seems to have done the trick, however, i am always cautious and very in tune to how i feel now..i know i was on myh death bed..i dont know how i continued working and taking care of my family but i did.
please take care and good luck!
-hugs-
dawn
For those of you who have gone the infusion route:
1) Did you get the level back up and maintain with oral iron, or are you back in for infusions periodically? since receiving the infusions....AND AFTER AN ENDOMETRIAL ABLASION..i have maintained my iron levels orally..(not as high as he'd like to see..but so much better than last year)
2) You get yours in big doses, or smaller ones spaced days apart? i received 100mL fluids w/iron which took about 30 minutes each time...again, sometimes this was twice weekly...eventually went to just once weekly
3) Any side effects? (I feel like I wa**** by a bus the day after, just general malaise.) i ALWAYS felt better immediately after..which lasted for hours ..burst of energy! i was also receiving vit b12 injections weekly at first, then bi-weekly..then monthly ..now i take it sublingually daily.
4) I am noticing a little weight gain-- did you have that as well? How much? Did it come back off after you stopped getting the IV fluids? (I know, it's 30% sucrose and a bag of fluids, so water gain is unavoidable. I don't want to eat less, though, because I feel so weak as it is. SHould I drop back my calories?) since feeling so much better ..and able to get back on track...ive lost 20 pounds...yes, i was exhausted, sluggish, short of breath .. no, i dont think you should limit calories now..you need as many as you can get...but verify that with your doctor.
5) How low were your numbers, and did you continue to exercise? Any changes in your exercise routine? after a year, my ferritin is still only 16 ..i go back to my hematologist every 4 months now as follow up i did not exercise...i had ZIPPO energy and just didnt feel well..after i starting feeling better ..and after my last follow up where the hematologist cleared me ..i exercise with no issues now
i ended up having to have an endoscopy to rule out gastric bleed or ulcer..and then due to my very heavy menstrual cycles, had the endometrial ablasion done...this seems to have done the trick, however, i am always cautious and very in tune to how i feel now..i know i was on myh death bed..i dont know how i continued working and taking care of my family but i did.
please take care and good luck!
-hugs-
dawn
One of the things I worry about it where the blood's going-- I am NOT a bleeder-- I had an ablation in 2003. :(
"Oh sweet and sour Jesus, that is GOOD!" - Stephen Colbert Lap RNY 7/07-- Lap Gallbladder 5/08--
Emergency Bowel Repair 6/08 -Dr. Meilahn, Temple U. Upper and Lower Bleph/Lower Face Lift 12/08
Fraxel Repair 2/09-- Lower Bleph Re-Do 5/09 -Dr. Pontell, Media PA Mastopexy/Massive
Brachioplasty/ Extended Abdominoplasty (plus Mons Lift and Upper Leg lift) / Hernia Repair
6/24/09 ---Butt Lift and Lateral Thighplasty Scheduled 7/6/10 - Dr. Ivor Kaplan VA Beach
Total Cost: $33,500 Start wt: 368 RNY wt: 300 Goal wt: 150 Current wt: 148.2 BMI: 24.7
(deactivated member)
on 8/22/10 3:29 am
on 8/22/10 3:29 am
I hope they find what is causing your iron defiency anemia. I was anemic a few years ago and after having a hsyterectomy that took care of it. I do read a blog of someone that has had RNY and she has had to have iron infusion.. very interesting. Are you wishing you hadn't had the surgery at all now? I have not had my surgery yet and am very nervous about things like this.
BK-
Three years ago I was a beautiful fat woman who liked herself but had bad sleep apnea and was damn near immobile (at 370 pounds). I had blood sugar (dumping type) issues and gastric problems. I had the surgery because my quality of life was getting to be badly compromised.
I am now a size 10 woman who had to spend $33k on plastics to remove the tremendous skin piles, be treated for a Vit D deficiency, had and emergency gallbladder removal, and emergency bowel obstruction (which nearly killed me.) I have chronic bowel impactions and constipation. I have half the red blood cells I had just three years ago and the anemia's making it hard to get moving, and the treatment is making me gain weight. I have to take daily hormone replacements for the huge ampunt of estrogen that's been dumped in my system. I have to count literally every thing that goes in my mouth and balance it all nutritionally. My groceries cost twice what they once did. I spent over $400 this month on insuranec co-pays alone.
So my answer is this: if I get to live a longer life, it will have been worth it. And if this mess kills me off, I will be highly pissed. I said, "I will live free or die trying" and only time will tell where I get to fall on that continuum.
If you are not in the "I will live free or die trying" place, I wouldn't do it. If your health is not compromised, I wouldn't do it. If you think it will solve all your problems, I wouldn't do it. I knew these things were a possibility and had to take a shot to save myself-- no other real options, so I am sort of stuck dancing with "the one that brung me" for both the good and bad of it.
Three years ago I was a beautiful fat woman who liked herself but had bad sleep apnea and was damn near immobile (at 370 pounds). I had blood sugar (dumping type) issues and gastric problems. I had the surgery because my quality of life was getting to be badly compromised.
I am now a size 10 woman who had to spend $33k on plastics to remove the tremendous skin piles, be treated for a Vit D deficiency, had and emergency gallbladder removal, and emergency bowel obstruction (which nearly killed me.) I have chronic bowel impactions and constipation. I have half the red blood cells I had just three years ago and the anemia's making it hard to get moving, and the treatment is making me gain weight. I have to take daily hormone replacements for the huge ampunt of estrogen that's been dumped in my system. I have to count literally every thing that goes in my mouth and balance it all nutritionally. My groceries cost twice what they once did. I spent over $400 this month on insuranec co-pays alone.
So my answer is this: if I get to live a longer life, it will have been worth it. And if this mess kills me off, I will be highly pissed. I said, "I will live free or die trying" and only time will tell where I get to fall on that continuum.
If you are not in the "I will live free or die trying" place, I wouldn't do it. If your health is not compromised, I wouldn't do it. If you think it will solve all your problems, I wouldn't do it. I knew these things were a possibility and had to take a shot to save myself-- no other real options, so I am sort of stuck dancing with "the one that brung me" for both the good and bad of it.
"Oh sweet and sour Jesus, that is GOOD!" - Stephen Colbert Lap RNY 7/07-- Lap Gallbladder 5/08--
Emergency Bowel Repair 6/08 -Dr. Meilahn, Temple U. Upper and Lower Bleph/Lower Face Lift 12/08
Fraxel Repair 2/09-- Lower Bleph Re-Do 5/09 -Dr. Pontell, Media PA Mastopexy/Massive
Brachioplasty/ Extended Abdominoplasty (plus Mons Lift and Upper Leg lift) / Hernia Repair
6/24/09 ---Butt Lift and Lateral Thighplasty Scheduled 7/6/10 - Dr. Ivor Kaplan VA Beach
Total Cost: $33,500 Start wt: 368 RNY wt: 300 Goal wt: 150 Current wt: 148.2 BMI: 24.7
ryntra
on 8/22/10 3:45 am - Grand Rapids, MI
on 8/22/10 3:45 am - Grand Rapids, MI
You're "lucky" that your doctor was willing to pursue an iron infusion as soon as he did...I had to beg and plead for one AFTER suffering with anemia for OVER a year in which my Ferritin level ranged between a 4 and a 5! They wouldn't do anything because my hemoglobin was "normal" at a 13! Needless to say, by the time I got to the hemotologist--I told him I wanted an iron infusion ASAP. My PCP did thorough testing beforehand to make sure there wasn't another reason for the anemia other than absorption. The hematologist gave me the choice of either one major infusion or smaller infusions two times a week for three weeks....I opted for the major infusion which lasted 6 hours. At my recheck three months later, my Ferritin was 45!
1) Did you get the level back up and maintain with oral iron, or are you back in for infusions periodically? The hematologist told me I might have to have infusion periodically for the rest of my life because I don't absorb oral iron. Now, I don't know what that means....I go for my three year post-op check in a week and I'm curious to see where my levels are now.
2) You get yours in big doses, or smaller ones spaced days apart? I preferred to get the big dose...it took 6 hours but it replenished all my levels instantaneously...it also worked a lot better in my schedule.
3) Any side effects? (I feel like I wa**** by a bus the day after, just general malaise.)
I was lucky as I didn't have any side effects....I was told I might feel like I had a bad flu for a day or two and I prepared for the worst but I felt fine.
4) I am noticing a little weight gain-- did you have that as well? How much? Did it come back off after you stopped getting the IV fluids? (I know, it's 30% sucrose and a bag of fluids, so water gain is unavoidable. I don't want to eat less, though, because I feel so weak as it is. SHould I drop back my calories?) I didn't notice any weight gain and I didn't have to change my diet or drop back any calories.
5) How low were your numbers, and did you continue to exercise? Any changes in your exercise routine? At my lowest, my Ferritin was 4, hemoglobin was 8, and I don't remember what my saturation level was but I know it was low too....it definitely effected my exercise...I barely had enough energy to get through the day--let alone exercise!! I did my best but after I got my energy back my desire to exercise increased.
I totally understand your frustration....believe me I've thought the same things....at times it's like I've just changed one set of problems/issues with other ones. Yes, the RNY has made me healthier (I now have normal blood pressure, normal cholesterol, etc) but now I have vitamin deficiencies, abdominal issues, etc. I'm still glad I had the RNY but I can't say it's what I expected!
Good luck to you....I hope you start feeling better soon!
1) Did you get the level back up and maintain with oral iron, or are you back in for infusions periodically? The hematologist told me I might have to have infusion periodically for the rest of my life because I don't absorb oral iron. Now, I don't know what that means....I go for my three year post-op check in a week and I'm curious to see where my levels are now.
2) You get yours in big doses, or smaller ones spaced days apart? I preferred to get the big dose...it took 6 hours but it replenished all my levels instantaneously...it also worked a lot better in my schedule.
3) Any side effects? (I feel like I wa**** by a bus the day after, just general malaise.)
I was lucky as I didn't have any side effects....I was told I might feel like I had a bad flu for a day or two and I prepared for the worst but I felt fine.
4) I am noticing a little weight gain-- did you have that as well? How much? Did it come back off after you stopped getting the IV fluids? (I know, it's 30% sucrose and a bag of fluids, so water gain is unavoidable. I don't want to eat less, though, because I feel so weak as it is. SHould I drop back my calories?) I didn't notice any weight gain and I didn't have to change my diet or drop back any calories.
5) How low were your numbers, and did you continue to exercise? Any changes in your exercise routine? At my lowest, my Ferritin was 4, hemoglobin was 8, and I don't remember what my saturation level was but I know it was low too....it definitely effected my exercise...I barely had enough energy to get through the day--let alone exercise!! I did my best but after I got my energy back my desire to exercise increased.
I totally understand your frustration....believe me I've thought the same things....at times it's like I've just changed one set of problems/issues with other ones. Yes, the RNY has made me healthier (I now have normal blood pressure, normal cholesterol, etc) but now I have vitamin deficiencies, abdominal issues, etc. I'm still glad I had the RNY but I can't say it's what I expected!
Good luck to you....I hope you start feeling better soon!
Start/Surgery/Goal
314/299/165
Well S....my story is sorta parallel to yours.
First let me say I am a nurse. I know things and have to accept that I was not more of a advocate for myself and TRUSTED the doctors.
Fact is: in sept 08 I had (lets say a incident) found in front yard, down for over 45 min...possible stroke, TIA or seizure. I regained my strenght, speech in 2 days....I was checked from cartoids, echo. labs...ct's mri's. The end diagnosis was migraine. Hmmm....anyways..I was good then.
now, 2 yrs later...had my check up s every 6 months. Took all my supps. I had various complaints. I got blah off. Doctor says...labs fine...blah blah..I keep truckin on...exhausted, strange aches in joints, sleep issues.
May..2010. Kidney stone. Routine CBC...my er doc..says...I have to tell you you are severely anemic. HGB 7.9
My PCP....orders bunch of labs, long story short...you need zoloft, your not having these symptoms, your making mountain over mole hill.
I am ashamed...but I have to become my advocate.
GYN....working on the angle of my age 47, heaving bleeding....sched for biopsy of uterus and sono.
New PCP....starting over. My hgb is up now to 8.2. Ferritin now 3. was 1.
3 days ago. hema/oncologist. HE gets it. Hugs me..and says...I bet you are tired.
So this week we are going to start infusions. I work for a world known health system. There will be a fight to "where" and which infusion I get based on money.
I should know something tommorrow. He said for now...STOP all oral irons. Lets do infusions, lots of labs in 3 weeks, to include looking at copper level ( heard Andrea and vitalady preach that )
Baby steps...get to feeling better. My hemacult stools are neg. But will end up most likely doing sigmoid and egd scope. ( upper and lower end) yikes!!!
My b12 is in normal range. He said...that I am using b12 from what I ate 5 yrs ago, he wants to watch it closely..to keep it from future tanking.
He feels that RNY....some do well on supps, and some just don't get it. Til we establish baseline, get up some...then maybe labs every 3 mo....I could very well have infusions as maybe yearly...just wont know for now.
I barely work. I love my job, its hard as hell...I work 4 to 5 12 hr shifts. I work my butt off...but I have nothing else to offer. I went to his office on thurs...and I was exhausted.
Good luck....would you like to keep in touch.
I have read your story...seen your posts. You are awsome....I still am glad to be where I am....I do not regret anything.
I will tell you more...when I find out!!!
First let me say I am a nurse. I know things and have to accept that I was not more of a advocate for myself and TRUSTED the doctors.
Fact is: in sept 08 I had (lets say a incident) found in front yard, down for over 45 min...possible stroke, TIA or seizure. I regained my strenght, speech in 2 days....I was checked from cartoids, echo. labs...ct's mri's. The end diagnosis was migraine. Hmmm....anyways..I was good then.
now, 2 yrs later...had my check up s every 6 months. Took all my supps. I had various complaints. I got blah off. Doctor says...labs fine...blah blah..I keep truckin on...exhausted, strange aches in joints, sleep issues.
May..2010. Kidney stone. Routine CBC...my er doc..says...I have to tell you you are severely anemic. HGB 7.9
My PCP....orders bunch of labs, long story short...you need zoloft, your not having these symptoms, your making mountain over mole hill.
I am ashamed...but I have to become my advocate.
GYN....working on the angle of my age 47, heaving bleeding....sched for biopsy of uterus and sono.
New PCP....starting over. My hgb is up now to 8.2. Ferritin now 3. was 1.
3 days ago. hema/oncologist. HE gets it. Hugs me..and says...I bet you are tired.
So this week we are going to start infusions. I work for a world known health system. There will be a fight to "where" and which infusion I get based on money.
I should know something tommorrow. He said for now...STOP all oral irons. Lets do infusions, lots of labs in 3 weeks, to include looking at copper level ( heard Andrea and vitalady preach that )
Baby steps...get to feeling better. My hemacult stools are neg. But will end up most likely doing sigmoid and egd scope. ( upper and lower end) yikes!!!
My b12 is in normal range. He said...that I am using b12 from what I ate 5 yrs ago, he wants to watch it closely..to keep it from future tanking.
He feels that RNY....some do well on supps, and some just don't get it. Til we establish baseline, get up some...then maybe labs every 3 mo....I could very well have infusions as maybe yearly...just wont know for now.
I barely work. I love my job, its hard as hell...I work 4 to 5 12 hr shifts. I work my butt off...but I have nothing else to offer. I went to his office on thurs...and I was exhausted.
Good luck....would you like to keep in touch.
I have read your story...seen your posts. You are awsome....I still am glad to be where I am....I do not regret anything.
I will tell you more...when I find out!!!
Hugs,
Sandy aka LinZhi's Mum
I was like you with the Iron. The first time I was at 3.5 fer, and hemo was 8. The first infusion was a 6 hour infusion and it lasted 1 year. The second time I had the 6 hour on 2 days. That doc told me if I didnt take B-12 injections 2x a month my iron would keep droping. the B-12 holds on to the iron that you get natually. I have done that faithfully and it has now been 4 yrs and I have not had to have another infusion. I do have to have massive doeses of vit D at times 50000 units but that bringit up and then I take 2000 units a day. Vit D and B-12 and Iron all work together. I had RNY surgery April 9 1999. Good luck to you. The larger doese do work best,
Most Active
Recent Topics
Have You Ever Experienced Weight Stigma in Healthcare? Letâ??s Talk!
hnvr87 · 2 replies · 1791 views
hnvr87 · 2 replies · 1791 views
