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Old 03-11-2013, 10:10 AM   #1
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IV iron infusion as we speak - my story

Having a total dose infusion of iron dextran. 1400mg. They told me it will take 6 hours.

My story...I'm a 42 yr old female.
Back in January of 2012 I had an episode of fainting or blacking out 3 times back to back. I had never had anything like that happen to me before in my life. I had gotten up that morning and went to the kitchen to fix a cup of coffee and started to feel really strange. My face felt really flush, my limbs felt really heavy, my vision was getting blurry. I thought I better go lay down for a bit. My parents happened to be here visiting thank goodness. I needed to use the bathroom so I told myself, I will go pee and then lie down. I sat down on the toilet and remember leaning on the wall next to me. Next thing I know I'm coming to and my head is on the floor by my feet and I was still sitting on the toilet. Lol
I knew I just needed to get to my bed and lie down so I got up and started walking and next thing I knew I was waking up and I was half in and half out of the bathtub. The back of my head hurt as I had apparently hit my head on the wooden window ledge above the tub. I was quite disoriented and it took quite a while before I could manage to get myself up. Again I thought I just need to get to my bed. Next thing I knew I was coming to again and I was on the floor of my bedroom. I got up and got in my bed and laid there for a little while until I felt more normal. I got up and went and told my parents what happened and they insisted on taking me to the ER.
They ran blood work, did other tests and told me they couldn't find anything wrong with me. They said all my labs were normal. (Just last week I finally went and got a copy of my labs from the hospital and my h&h were low...not bad low but still low. Hemoglobin was at 10 and hematocrit s at 31%. They did not run iron tests.)

Over the past year I've had several near instances of that happening again but I recognize it and immediately lie down. The other symptoms have been gradually increasing over time to include extreme fatigue, insomnia, shortness of breath, dizziness, lightheadedness, RLS issues, achy muscles, and a major ice addiction and more that I probably am not thinking of right now. I always explained these things away from other stuff.

I started feeling much worse with the symptoms increasing in frequency somewhere around last October or November.
I knew I needed a hysterectomy due to a prolapsed uterus and suspected adenomyosis. My periods were getting heavier and heavier. So I called my gyn and told him I was ready to do it.

Scheduled my surgery and the pre-op blood work showed I was anemic. My hemoglobin was 8 and my hematocrit was 27%. Doctor said he wanted to do surgery anyway because he figures it was the heavy periods causing it so better to remove my uterus before I could have another period and my numbers drop even further. He did not test my iron levels.
The morning of surgery I asked him again about giving me blood and he said no...he doesn't like the risks and said he'd prefer my body to auto-transfuse. I then asked him about giving me an iron infusion since I was there in the hospital and already hooked up to an IV. He said no I didn't need that. Tells me all of that while also saying he expected my recovery from surgery to be delayed and slower than normal because of my low blood levels.

Fast forward 2 weeks.... Surgery went great. No issues from that at all but I was feeling horrible. More tired than ever...not sleeping at all, more dizzy, and getting those "pre pass out feelings" more and more. Doc thought it might be a little post op depression or anxiety and i said NONSENSE! i know my body and i know when something just isn't right so he decided to draw some blood. He called me the next morning and said my levels had dropped a bit more and he was sending me to a hematologist. They still didn't check my iron levels.

The next day I went on my own and ran some iron tests (that's the business I'm in -selling discounted blood tests directly to the consumer). I didn't want my appt with the hematologist to be for nothing other than him ordering labs and I knew he was going to run iron tests so I wanted results in hand to bring to him.

Hemoglobin - 7.5
Hematocrit - 23%
Total iron - 11
Iron saturation - 2%
Ferritin - 6

Hematologist ordered this infusion... A one time thing hopefully. Will retest in 3 weeks to see where I am and if all good, I will take oral supplements to maintain..if not then another infusion and will begin searching for another cause.

Really hoping and praying the low iron is what is causing the RLS at night and sleeplessness because I'm really at the end of my rope! Sooo ready to feel human again and have a quality of life again.

So far so good on this infusion. No reactions... Just a little groggy from the Benadryl.

 
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Old 03-13-2013, 05:30 PM   #2
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Re: IV iron infusion as we speak - my story

Just thought I'd update on the infusion.
Had no reaction at all during the infusion. Went very smoothly.
Woke up yesterday feeling pretty good...the nurse had told me that might be the case but not to get excited about it because it wasn't going to last. And boy was she right!
By late afternoon I was feeling pretty yuck. My whole body was achy and I was running a fever. The little burst of energy I had that day was gone and I was so tired. The feeling of an elephant sitting on my chest and being short of breath is back too.
Today is more of the same.
At least I'm finally getting some sleep as the hematologist gave me a script for Restoril because I was literally half out of my mind with desperation for sleep and its working!

Hoping tomorrow is the day I start feeling better!

 
Old 03-14-2013, 06:42 AM   #3
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Re: IV iron infusion as we speak - my story

Please keep us updated on your progress with this.

I hope everything improves for you.

After reading this, I am going to start taking an iron supplement for my anemia.

My Hemoglobin was 12.1 and my Hematocrit was 39.2 in February 2013.

I've had these low readings since 2011.

 
Old 03-20-2013, 06:09 AM   #4
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Re: IV iron infusion as we speak - my story

It's great to hear your infusions are going well. I had 6 treatments back in June 2012. Since then, my ferritin levels continue to drop so it looks like I will be going back for more. I felt so great by the sixth treatment and I am sure you will too!

The horrible catch 22 of low iron is the menstrual bleeding. Iron serves as a clotting agent in our blood - it gives it weight and thickness. So if you're iron is low, your blood is thinner. If your blood is thinner, you bleed more during your period. If you bleed more during your period, you iron stores go even lower. It's a vicious cycle! This could explain your heavier periods.

Oh the troubles of being a lady!

Last edited by SmallSails; 03-20-2013 at 06:10 AM.

 
Old 03-20-2013, 11:30 AM   #5
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Re: IV iron infusion as we speak - my story

Quote:
Originally Posted by SmallSails View Post
It's great to hear your infusions are going well. I had 6 treatments back in June 2012. Since then, my ferritin levels continue to drop so it looks like I will be going back for more. I felt so great by the sixth treatment and I am sure you will too!

The horrible catch 22 of low iron is the menstrual bleeding. Iron serves as a clotting agent in our blood - it gives it weight and thickness. So if you're iron is low, your blood is thinner. If your blood is thinner, you bleed more during your period. If you bleed more during your period, you iron stores go even lower. It's a vicious cycle! This could explain your heavier periods.

Oh the troubles of being a lady!
It's been a week and a half now since my iron infusion. I'm finally starting to feel a little better. Still running a low grade temp every day and that is certainly not helping me feel any better. This has been going on for 5.5 weeks now...since my hysterectomy.

I still am very fatigued and tire very easily.

I can tell the iron is starting to get into my system though because miraculously I no longer crave ice at all...and let me tell you... I was majorly addicted.
Another thing I craved continuously that has also gone away is pistachio's. I have no idea if that's related or not...but find it interesting.
I also have a very weird taste in my mouth.

Go for labs on the 1st and I can't wait to see what my levels are.
Still waiting to feel "normal"....whatever THAT is! Lol

 
Old 09-25-2013, 12:22 PM   #6
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mtfksb HB User
Re: IV iron infusion as we speak - my story

Quote:
Originally Posted by SmallSails View Post
It's great to hear your infusions are going well. I had 6 treatments back in June 2012. Since then, my ferritin levels continue to drop so it looks like I will be going back for more. I felt so great by the sixth treatment and I am sure you will too!

The horrible catch 22 of low iron is the menstrual bleeding. Iron serves as a clotting agent in our blood - it gives it weight and thickness. So if you're iron is low, your blood is thinner. If your blood is thinner, you bleed more during your period. If you bleed more during your period, you iron stores go even lower. It's a vicious cycle! This could explain your heavier periods.

Oh the troubles of being a lady!

 
Old 09-25-2013, 12:32 PM   #7
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Re: IV iron infusion as we speak - my story

Thanks for sharing, I had my 1st 8 week treatment of ferrlicet 18 months ago (my numbers were the same as yours), I am 48 going on 49. I had an allergic reaction to every dose of the ferllicet (hand swelling ,leg swelling, chest pain etc) but they just gave me benedryl to get through it. My iron numbers went up alot and then within about 9 months ,back down again. I tried to get them up myself by juicing spinach and high iron drinks, excersising more, eating more red meat but nothing helped. Dr. finally told me I needed another infusion. I did it yesterday, this time iron dexstran , 1 day 5 hours. They filled me with benedryl, steriods etc... I had an initial flushing reaction to the trial size , they waited another hour and I was able to take the rest. My chest was paining me throughout however, I have an iron intolerance (nothing by mouth ) and even the IV iron my body doesn't like. So my esophosgus starts building up eocinphils (allergens) while the iron is going in and the more they multiply the more it hurts. By the time I went to bed last night it was awful, it does help sleeping straight up. HOwever, they had me on so many steroids I couldn't sleep! Today I feel weak and tired,(my chest pain is much better) which I didn't have with the ferlicet and I read today it takes about 3 weeks for the new iron to get working in my system...hoping menopause is around the corner.

 
Old 01-14-2014, 10:41 AM   #8
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Re: IV iron infusion as we speak - my story

Hi,

I just had my 1st iron infusion last friday.

I have iron defficiency due to 15 years of heavy periods and copper IUD use. I have removed my IUd and had been taking iron supplements for a month (115mg elemental iron with vitamin C and 500mg of Lysine).

I feel very tired, my hair is shedding and I am pretty down.

I was wondering how long will it take before I feel an improvement?

My hemoglobin llevels are nromal (14,5) but my ferritin is low 24.

please help

 
Old 01-15-2014, 05:39 AM   #9
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Re: IV iron infusion as we speak - my story

Quote:
Originally Posted by mariaeva View Post
Hi,

I just had my 1st iron infusion last friday.

I have iron defficiency due to 15 years of heavy periods and copper IUD use. I have removed my IUd and had been taking iron supplements for a month (115mg elemental iron with vitamin C and 500mg of Lysine).

I feel very tired, my hair is shedding and I am pretty down.

I was wondering how long will it take before I feel an improvement?

My hemoglobin llevels are nromal (14,5) but my ferritin is low 24.

please help
I felt better on the 30th day after the infusion(the 2nd infusion that was the all day infusion ). I recall looking at the calendar the 1st day I felt better and it was exactly 1 month after the infusion. My numbers were much lower than yours so hopefully it won't take as long for you! I am unable to take any iron by mouth without a complete GI catastrophy! I hope you are feeling better soon!

 
Old 01-15-2014, 05:42 AM   #10
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mtfksb HB User
Re: IV iron infusion as we speak - my story

Quote:
Originally Posted by Jeff85018 View Post
Please keep us updated on your progress with this.

I hope everything improves for you.

After reading this, I am going to start taking an iron supplement for my anemia.

My Hemoglobin was 12.1 and my Hematocrit was 39.2 in February 2013.

I've had these low readings since 2011.
HI, As a male I have heard from several doctors and read too that men should never take iron supplements without a doctors recommendation. It has something to do with the way men and woman are different with iron and men can easily take too much iron ! I hope you are feeling better.

 
Old 01-15-2014, 08:24 AM   #11
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Re: IV iron infusion as we speak - my story

Thank you so much for your reply!

Guess I will have to wait a little bit more before I feel any better. I have a second infusion schedule for the 20th and and my last one on the 30th.

Will you keep you posted on my numbers.

Thank you so much

 
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