I have been Iron Deficiant for some time & NOW am Iron Deficiant w/ Anemia.
My Dr. put me on Iron Pills 2.5 mo's ago & I took slow FE but when I went back my hemglbn was 12.1. It was 12.8 Before I started the Iron pills.
My Ferratin is 6.
They are checking absorbtion problems (Which I doubt) and doing an upper & lower endoscopy, just to be safe.
Im 38 y/old female.
I cant understand why my body didnt absorb it.
Now she mentioned trying the pills for another month but then said if it doesnt work, she'll do IV Iron.
I have read HORRIBLE things & can use some help!!
Im scared.........I read that Sucrose is the least to worry about??
What Can I expect??
Can I choose to have a blood transfusion instead??
Thx all!
Blessings!
I totally understand your concerns about the infusion, though I know plenty of people reach the point where they're willing to risk any possible complications in the hope of feeling better. From what I understand, they will run a test dose before they start the full-on infusion, just to make sure you don't have a negative reaction to the IV iron.
Given that you have a month to see if the numbers go up by continuing the oral iron, make sure you are maximizing the absorption rate by taking Vitamin C along with it. I take 325mg of ferrous sulfate 3x/day, along with 500mg of Vitamin C (gel capsule) with each dose. While raising the levels is a slow process, this seems to be working for me.
I ordered some Betaine HCL (hydrochloric) yesterday b/c it's supposed to help with absorption; you might want to run a search on that and see if it might be helpful, though of course you'd want to run it past your doctor.
My ferritin is at an all-time "high" of 13 (low was 7). While the hematologist was OK with that level, my internist and the doctor I correspond with online believes the ferritin level is the best way to determine anemia. In light of that, I have ordered some ferritin (bioavailable iron, supposed to be easier on the GI tract and well-absorbed); the doctor said it was fine to take this in addition to the ferrous sulfate.
Again, I understand your concerns, but I'm sure MANY of the members here can offer you reassurance in you have to have an infusion. Hang in there!!
Nancy
The Following User Says Thank You to nancyjo For This Useful Post: smalldog (10-29-2012)
BriansMom444--Welcome to the boards! First, know that you have to take in a larger amount of iron than is lost for whatever reason. Are you having a history of heavy periods? Second, If you already have a low ferritin (under the range), you really don't have any stores to pull from. In addition to this, Slow Fe is one of the lowest dose irons they make besides a multivitamin and your body requires a much higher dose. I would rule this out as a cause before I thought about absorption issues(which ~COULD~ also be happening at the same time) and iron IV.
As Nancy said, she takes 325mgs 3X daily which relates (I think) to about 65mgs of elemental iron x3=195mgs of elemental iron. You can see the difference in the amount that you having been taking. How much have you been taking as prescribed? This same thing happened to me because I wasn't able to take iron due to the Ferris Sulfate making me so ill. My Hgb dropped for a long time until I realized that my Hematologist wasn't too concerned about this, didn't show it, or didn't help me to correct it. This is when I started understanding (iron via internet and GI doctors recommendations), I also responded and finally, over a long period of time resolved the anemia and I am currently working on the ferritin. I was a 2 Ferritin and now 2 yrs later I am at 58. I was taking 300mgs of Poly iron 150 2X daily. Now I take for maintenance dose 150 daily. I also take PPI's for acid reflux and my GI doc believes that this is causing malabsorption of iron. First, they said that it was my periods, so I had an endometrial ablation to slow or stop the bleeding. After this it was thought to be iron absorption due to the fact that my Ferritin was 43 a little over the one year mark.
The only way to really know is to rule out things one at a time and see what is currently happening. Many people with an iron problems have to take a maintenance dose the rest of their lives or until Menopause for some.
I would work really hard at a higher dose with Vit-C and diet, you should respond better. If not, then you know their are other problems going on. And, of course we are always thankful that IV iron therapy dose indeed exist, for many people this is the only answer. You can read about iron and how to balance it with foods that increase the absorption and others that may inhibit absorption.
You are also mildly anemic and it may take a little longer for your levels to come up verses someone that is not anemic. Be patient, it takes time. Keep us posted.
PS--You can also call your local pharmacist or Hematologist and ask about higher dose irons that are GI friendly, they are out there. Some like mine are OTC without a script but located inside the pharmacy. It's something to ask your doctor about, you should always go by what they recommend for you as a patient. You were probably just dragging your feet with the slow fe.
__________________ Best of luck to you! FLFLOWERGIRL
*****************
Hashimoto's Thyroiditis
Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
Fibromyalgia/Chronic Fatigue Syndrome
Nobody is a bigger chicken than me! I had 3 iron ivs 200mg sucrose Iron. I sat and waited for the side effects but I didnt have any. I think one of the keys to get less of a reaction is not having more than 200mg at a time some dr will do much more and then the patient suffers pain for weeks from to much at once. Another thing I would like to point out is blood transfusions also have side effects a women on here almost died form having 3 units of blood all at once but previously had done 2 units with no problem nothingis an easy fix when it comes to raising your ferritin. good luck Charlene
Thx SO much for taking the time to respond! I truly, genuinly appreciate that. In todays world, who has time, huh?
Nancy, i am going to ask my Dr about the Ferritin Iron. Do you feel its made a difference? I switched to Ferrous Sulfate, twice a day....Wondering why the hematologist only said twice. Perhaps because my hemoglbn isnt "that" low?
You didnt mention what your hemoglobin was?
Flowergrl, Thx also for all the info........I too was thinking that maybe the Slow FE was weeker than other brands but the pharmacist said Its the same exact thing as Ferous sulfate. He said it was just a tad bit lower (49 mgs of elemental iron, as opposed to 65mgs w/ Ferous sulfate).
In any event, I switched and I bought 500 mgs of Vitamin C.
I take the vitamin C at the same time as the iron. Is that correct?
Also since Im taking the iron 2X day, should I take Vitamin C 2X as well? Just a thought.
Im a lil confused why my Dr didnt say to keep trying the Iron. Why she (the hematologist) would even bring up Iron IV. When i spoke to my intern, he said "you have time". A friend of mine, a cardiologist said He wouldn't do the IV...only as a last resort. Im getting confused. He told me to call another hematologist for a second oppinion & when I did, the woman who answered the phone said THERE ARE NO RISKS w/ IRON IV?? She said its done all the time, theres no consent, patients are not warned because there is none. Hmmm? She said they use Venefor. Any thoughts?
I have been eating Liver, raisons, special K, oatmeal, apricots, seseme seeds, Turkey, beans, ect.......I really cant understand why after 2 mo's my iron dropped.
I had a colonoscopy 2 years ago & an upper endoscopy but looks like I have to do it again.
Funny thing is............I found an old lab sheet (I am one to ask for everything) & it was from 2006. My GYNO did the bloodtest & the ferritin was 5. When I saw this (in 07) my gyno was no longer in the same office, i questioned my intern and he repeated it. It was a 7 or 8, I believe. At that time, he put me on Slow FE & when my iron hit 15, he read the bloodwk & said you can stop the iron. I questioned it being it was still low but he said its fine & recomended IF i wanted to take it during my period but it wasnt necesary. I think if it worked then, why not now.
Sort of upsets me because maybe I wouldve had more stores?
Another thing, while its on my mind.......I never get any upset stomach or dark stools or anything when I take iron. So many people complain, I dont notice a difference. Maybe that shows its not working. I take it on an empty stomach.....I think Ill absorb more.
Flowergrl, you said your DR didnt seem to concerned, about you bloodwk? I wasnt sure I understood. Did the iron kick in just like that? Why didnt you absorb it at 1st?
When does a Dr order IV Iron......At what point?
Im sooo confused! I really am! I wrote this yesturday but am continuing writting it today & today i called a hospital near me 7 asked about it. The guy who answered the phone was a IC Unit Dr & he said, its a pretty invasive procedure.
Im just real worried & Anxious.
Charln, TY too for your input. Im glad it was successful for you.
Does anyone know, are these supposed to be done in a hospital? My hemotologist says she does them in her office.
I have so much to say but have to put my 4 y/old to bed.
Thx SO much for taking the time to respond! I truly, genuinly appreciate that. In todays world, who has time, huh?
Nancy, i am going to ask my Dr about the Ferritin Iron. Do you feel its made a difference? I switched to Ferrous Sulfate, twice a day....Wondering why the hematologist only said twice. Perhaps because my hemoglbn isnt "that" low?
You didnt mention what your hemoglobin was?
Not Nancy, but wanted to share some info. Your doctor probably only prescribed 2X daily because it is so harsh. However, it's really well absorbed IMO. You are still fairly low in the Hgb department to feel well. Your optimal value should be 14. This is when you will begin to store more iron too.
Flowergrl, Thx also for all the info........I too was thinking that maybe the Slow FE was weeker than other brands but the pharmacist said Its the same exact thing as Ferous sulfate. He said it was just a tad bit lower (49 mgs of elemental iron, as opposed to 65mgs w/ Ferous sulfate).
You only absorb a small amount of iron and the higher dose is what was recommended by ALL of my doctors. When I asked about the Slow Fe they rolled their eyes at me. It takes a lot of iron and a long time for ferritin to fill. Only about 2-3 months for anemia to resolve.
In any event, I switched and I bought 500 mgs of Vitamin C.
I take the vitamin C at the same time as the iron. Is that correct?
Also since Im taking the iron 2X day, should I take Vitamin C 2X as well? Just a thought.
Yes, it should be taken with both tabs to increase the absorption as long as you can tolerate it.
Im a lil confused why my Dr didnt say to keep trying the Iron. Why she (the hematologist) would even bring up Iron IV.
Probably because you meet the criteria for no ferritin and borderline mildly anemic. Also, ~she doesn't think that you absorb iron~. She is giving you one last go! Hematologists give IV iron all the time, it's their forte'. When I met my Hematologist he ordered IV for me because I had a 2 ferritin and was moderately anemic. The next time he read my labs a couple days later I showed that I absorbed very little, but that was all he had to know, that I did indeed absorb. I was too ill to take a chance with the IV for me personally.
When i spoke to my intern, he said "you have time". You do have time. This time is only to prove that you can/cannot absorb iron.
A friend of mine, a cardiologist said He wouldn't do the IV...only as a last resort. Im getting confused. I know it can be confusing, however; IV iron is reserved as a last resort for those that do not absorb iron for different reasons. One of my doctor's showed me a warning in the docs medical book, then I was really scared. I like you didn't know what to think.
He told me to call another hematologist for a second oppinion & when I did, the woman who answered the phone said THERE ARE NO RISKS w/ IRON IV?? That statement is just not true. IV iron is not without risk.
She said its done all the time, theres no consent, patients are not warned because there is none. Hmmm? She said they use Venefor. Any thoughts?
It is done all the time. And I think that Venofer is the one with the least amount of risks and reactions. My Hematologist told me the same thing. He said that he has only had one problem is 11 years of giving iron. He also said that the only people that say they have reactions are out to benefit from it in some way. Well, I knew this statement was not true. Because I have read about many, many people here and their stories.
I have been eating Liver, raisons, special K, oatmeal, apricots, seseme seeds, Turkey, beans, ect.......I really cant understand why after 2 mo's my iron dropped. That is what happens without a ferritin to back up the Hgb to keep it at a normal level. Your iron stores were not filled up and being called on for use.
I had a colonoscopy 2 years ago & an upper endoscopy but looks like I have to do it again.
I was pretty upset that I had to have this 5 yrs early but I am so glad that I did it, really I didn't have a choice. You should always have all GI issues ruled out or you may be fighting a forever battle.
Funny thing is............I found an old lab sheet (I am one to ask for everything) & it was from 2006. My GYNO did the bloodtest & the ferritin was 5. When I saw this (in 07) my gyno was no longer in the same office, i questioned my intern and he repeated it. It was a 7 or 8, I believe. At that time, he put me on Slow FE & when my iron hit 15, he read the bloodwk & said you can stop the iron. I questioned it being it was still low but he said its fine & recomended IF i wanted to take it during my period but it wasnt necesary. I think if it worked then, why not now.
Sort of upsets me because maybe I wouldve had more stores?
When I hit a 20 ferritin my Hematologist released me that was at the 10 month mark into this. However, he said, that I have to take iron until I am completely through menopause and not until. That's a big difference than what you were told. This is your problem, you didn't fill the stores and the cycle repeated. Many people are told they can stop and they end up here on the boards. When a patient is anemic they are to be on iron supplement for up to 6 months after the anemia is resolved. Many people though end up having a problem with absorption and have to stay on iron indefinitely, like me.
Another thing, while its on my mind.......I never get any upset stomach or dark stools or anything when I take iron. So many people complain, I dont notice a difference. Maybe that shows its not working. I take it on an empty stomach.....I think Ill absorb more. Or maybe you weren't on enough iron to cause a change of color. I noticed a big change in color from 1X (150 Poly Iron) to 2X. Or maybe there is more to it like you say.
Flowergrl, you said your DR didnt seem to concerned, about you bloodwk? I wasnt sure I understood. Did the iron kick in just like that? Why didnt you absorb it at 1st? I was too ill to take the iron and had to stop and start and take with food and low dose and on and on until my blood kept dropping. The doctor did nothing to help me other than to monitor me. He acted like it was okay to take such a little bit. When I read you need high dose iron and had to replace more than is lost I got the picture. Also, I had an ablation to stop the heavy periods that added to the problem. Of course this guy told me I need to have the big "H." I truly feel like I fixed myself with the help of these boards.
When does a Dr order IV Iron......At what point? When you cannot absorb orally. Or when you have bottomed out like many of us have. They go on and fill the stores for you because oral route takes up to a year.
Im sooo confused! I really am! I wrote this yesturday but am continuing writting it today & today i called a hospital near me 7 asked about it. The guy who answered the phone was a IC Unit Dr & he said, its a pretty invasive procedure.
It is not without risk, but I am so glad that it is offered for those that need it.
Im just real worried & Anxious.
Charln, TY too for your input. Im glad it was successful for you.
Does anyone know, are these supposed to be done in a hospital? My hemotologist says she does them in her office.
It is done in both settings. Keep us posted.
I have so much to say but have to put my 4 y/old to bed.
I welcome ANY thoughts......God Bless!
__________________ Best of luck to you! FLFLOWERGIRL
*****************
Hashimoto's Thyroiditis
Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
Fibromyalgia/Chronic Fatigue Syndrome
Last edited by FLFLOWERGIRL; 02-22-2009 at 08:37 AM.
I have had a total of 6 Iron Infusions with the brand name of Venofer. They have all been in the hematologist's office. I haven't experienced any significant side effects except for water retention (something to do with the clear bag they also run, maybe?). I was also extremely nervous and considered a hospital setting. For people prone to reactions, my doctor has given benadryl prior to the infusion.
Overall, I think the infusions are helping, but the whole cycle of replenishment takes alot longer than I thought. My husband and I thought the infusion would be a like an instant pick me up, but the nurse explained that it has taken a long time to deplete your iron stores and it will take a while (months) to restore it.
Hi, BrainsMom444
What is Ferritin? I might sound stupid, but I'm from the US, and my doctor has not mentioned it. Hgb and iron level and other things, but not Ferritin. I found out my Hgb was 6.5 and my iron level was 1 almost 2 months ago. So I know nothing.
I had Iron infusion, instead of blood transfusion, was told it is safer. I was told blood transfusion were last resort. I was told some people have reactions to it, so they give you small anount first to see if you do. They gave Benadryl to help. Didn't give enough first infusion, I got restless feeling. Nurse argued with me normal, but I told doctor I can use Benadryl to make me sleep, never got restless feeling. Doctor up the amount, and I didn't get restless feeling that time.
I only needed two infusions, had first Friday and second the following Monday. 3rd visit for infusion, I was up to 9.3. So they told me to come back 3 weeks. When checked my Hgb it was 12.5. I was told might need one again later, but not now.
Now going to the Gastroenterologist next week. Oncologist wants upper and lower GI to try to find bleed. Said has to be one some where. Not showing in stools or urine
I had chronic anemia as chikd and adult, till I went through Menopause. This just poped up a few months ago, after having reaction to antibiotic..Don't know if had anything to do with anemia.
Doctor said this has been going on for a long time, has to be slow bleed.
I'm 66.and I didn't get a chance to worry. Did infusion on first visit.Just got voice mail this weekend, telling me to call, wanted me to come in that day. My appt was Jan 16. I didn't call!
I hope I have helped with iron infusion, but would like to know what Ferretin is.
Am I aloud to ask question on some one else's?
Good Luck, Diana
Last edited by DianaRo42; 02-22-2009 at 07:41 PM.
Reason: Misspelled
Dianaro42--Ferritin is the number that you gave for iron and you were 1. Ferritin is your body's iron stores. It is stored in the bone marrow and vital organs. The ferritin is what your body uses to keep your Hgb at a stable number. Your Hgb was really low which is vary dangerous and shows that it probably has been going on for a while. If you have something going on inside it may even be healed by now. Perhaps this is why it doesn't show on the stool testing. Occult blood testing only shows intermittent bleeding. However, it is a useful tool in evaluating for blood loss. Glad to hear that you are doing better now. Keep us posted.
__________________ Best of luck to you! FLFLOWERGIRL
*****************
Hashimoto's Thyroiditis
Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
Fibromyalgia/Chronic Fatigue Syndrome
Thanks for the info. I new iron level was amount of iron build up in bone marrow. Did not know it was called Ferritin. Thank you again. This message board has helped a great deal.
Hi, BrainsMom444
Now going to the Gastroenterologist next week. Oncologist wants upper and lower GI to try to find bleed. Said has to be one some where. Not showing in stools or urine
Diana
Diana,
I'm certainly not an expert on this subject just another patient trying to fugure out what is wrong and why and how to fix it but I wanted to share with you something that my hematologist said. I'm 58 and post-menopausal and was told I had iron deciciency anemia in Aug 08 with a ferritin of 5 and my GP immediately said see your GI to check for GI bleeding. An in-office and take-home stool test were negative and a 24 hour urinalysis was negative for blood as well. Anyway I had a colonscopy and then a capsule endoscopy to check the colon and the small intestine respectively and both were negative for bleeding. The GI said I didn't need an upper endoscopy because I just had one in March 08.
I finally saw a hematologist on November 20 and she did very thorough bloodwork. According to the letter she sent my PCP she wrote that "unfortunately in some patieints an obvious source of GI blood loss cannot be identified."
I don't know your whole story but I didn't want you to worry that you might have a serious bleed somewhere - maybe you don't - I'm hoping for you!
__________________ Best of luck to you! FLFLOWERGIRL
*****************
Hashimoto's Thyroiditis
Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
Fibromyalgia/Chronic Fatigue Syndrome
DianaRo42--Susie brings up a very good point! I personally know a couple other people of completely different ages, and neither have been able to find a definitive cause for a lowered Hgb/Ferritin. The answers are not always apparent. Keep us posted!
__________________ Best of luck to you! FLFLOWERGIRL
*****************
Hashimoto's Thyroiditis
Moderate Anemia (resolved) Low Ferritin-- Work in progress! Hiatal Hernia--GERD
Fibromyalgia/Chronic Fatigue Syndrome
I read on Mayo Clinic, that they sometimes never find out why those my age are so low. (I'll use my age), like it better than their word. (smile) I looked up all I could when found out I was seeing Dr. Philip. Oncologist. That's how I found this board, Mayo Clinic..
Thanks,. again
Hugs, Diana
Hi Susie,
Thanks so much, reminds me, I'm not the only one that can have weird things wrong, or test results.
Thanks for sharing !
My new doctor is so caring and patient . Didn't know they were still around. My GP is, but shows it in different ways.
Seeing another new doctor on Monday.GI.
Hi Diana,
I agree - it is nice to know others are experiencing similar issues. I guess "misery loves company"
I'm glad you like your new doctor - that is very important. I've had a number of medical issues within the last 4 years and have gotten much more assertive and fired my old GI, GP and Gyn when I didn't feel like I was getting the care and concern from them that I needed. It wasn't easy but it was necessary and I got the impetus from folks I met here on HB and other health communities on-line.
I Had 3 iron infusions in three days. I can not imagine what horrible things you heard. Its simply an IV and they test you ahead of time to make sure you can use if. I felt nothing during the procedures and infinitely better after.
Don't listen to horror stories
Keep us posted.
Re: Worried about iron infusion, please answer! 
