iron infusions update

good morning everyone. bet most of you are pretty cold this Valentines day!  it just 20 here in western ky but the wind is howling and it feels much much colder.  I get to drive to the doctors today for my Iron infusion but I would not miss this for the world... well then again if it was snowing I would reschedule I have been having iron problems for years, probable since I was a teenager but it was never found because no doctor even thought to loo****il after I had my GBS. then it was found I was really anemic and at one time my iron was a 7...

 

so although I have a wonderful surgeon that has a dietition in his office I still had a lot of problems and the iron pills caused severe constipation, once so bad I had to go to the ER..  I went to a hemotologist who knows more about cronic iron problems.  I had my first iron infusion last Thursday.  well last night my husband looked at me and said, you have not been as *****y or quick tempered in the last few days, do you think it may be due to getting the infusions??  well l thought about it and found he was right,  there are times that I would fly off the handle for such little things that if I got into a MOOD, everyone would just leave me alone. but since about 3 days after the INFED iron infusion i feel really EVEN tempered, yes I still get upset but not like before, my husband said he can hardly wait until this last infusion kicks in. anyone else experiance this type of problem when their iron is low?  also I had a B 12 shot 2 weeks ago that may have helped!  I guess I will ask my hemotologist about it if i see him today or ask he nurse who does the IV... have a great day Donna

Hi Donna,  It has been quite a while since I have been on this site... but wanted to say I am sorry to here about your iron.. I too was always anemic and my endocronologist switched me to a drug call NIFEREX about a yr or so ago and for the first time in 25 yrs I am not anemic... I do get a slight constipation from it but usually it is just the opposite. Discuss this drug with your dr if you haven't already.. I find it amazing.  Donna

<< there are times that I would fly off the handle for such little things that if I got into a MOOD, everyone would just leave me alone.... anyone else experiance this type of problem when their iron is low?  >>  This is exactly the same as it was for me!   It's probable that I have been anemic for many many many years and just never knew about it until I had blood lab work done pre and post WLS surgery!  I now take Niferex and my iron levels are good and my moods are totally level and stabilized ... so much so that I kick myself for thinking that this could have been something totally preventable a long, long, long, long time ago --- I put myself and my family through so much unnecessary grief with some of my mood swings over the years.  And I can't get that time to change things, either.  When doing research about iron and the body .. I did read that moodiness and irritability can be a sign/symptom of low iron and/or anemia. But who thinks it's that when they're busy raising a family and running around on the go all the time.  My previous doctors chalked it up to just being a busy mom and all that. Interesting to hear that I'm not alone, though - so thanks for posting this about yourself! Take care, - Carol

Hi Donna! Yes, I am anemic too, my level is at a 2 right now.  Or it was 3 weeks ago.  I just had my first hematology appt Monday.  Got my lab results yesterday, and after doing 325 mg of ferrous sulfate twice daily, it increased to 18!  But my dr still wants it up to 50, so she up'ed me to 3 tabs a day.  I still don't know if I have to do the infusions yet.  Hopefully I will find out this week.

I have had extreme periods for the last 10 years, and since then, i have been in this battle.  I hate it, and I hate how I feel physically.  Constantly cold, bad headaches, absolutely exhausted.  I am trying to finish school right now, and i have 2 jobs.  One to pay the bills and the other for credits for school.  So physically, I am just whooped.  Since it is that time of the month, it makes it even worse for me. I am just drained!  The hematologist wants me to get on birth control pills to help slow the flow down, pcp won't give them to me yet.  Did you get the extreme headaches?  My moods, I have always been a slight bit *****y, so I don't know if my husband ever noticed me being any worse!  (LOL!) Except for the day before the period starts!  I get really bad body aches. Do you?  Sometimes it feels like I got punched in the center of my back. Well, Other than being tired and not having any energy, that is what I deal with.  I wish the back pain would go away.  As my iron levels pick up, the headaches go away, so I get some relief there! Laura

Laura,

I read on another support group that ferrous sulfate can irritate our pouch, so I take carbonyl iron. Was your iron level a 2 or your ferritin level? My iron levels were fine but my ferritin level was low, so now I take iron. My doctor said my ferritin level should be above 50 but I'm shooting for 100.

Hey there, My ferrotin was a 2, now 18.  I will ask my surgeon about the sulfate.  So far, I have not experienced any discomfort, or even constipation!  For the latter, I am surprised!  When I was first post op, I was so badly constipated, due to the iron, and that was just 1 tab a day!  Now I am up to 3, and so far..so good!  But I will definately ask, just to know if there may be long-ter, after effects.  Thanks for the heads-up! My Dr (the hematologist) wants me at 50 as well.  She said at 50, I will be normal.  Of course, I want to be better than normal.  I have been taking 2 multi-vitamin Geritol's with Iron as well, and eating beans and lentils like crazy over the last few weeks.  I guess it is working, slowly but surely! Have a great day!  Laura

I'm glad that you're starting to feel better.  I finally saw a Hematologist for my anemia.  She said that I will probably need an IV iron infusion every six months.  I am five years post-op.  I have had two infusions, before each infusion I was a grouch!  I experienced dizziness and shortness of breath and extreme fatigue.  I am just not absorbing enough iron orally.

I had my third iron - ferrous gluconate infusion yesterday. i am  having a series of 10. Last week (the day after my 49th birthday) my doctor called me because my Hgb was 6.8. Not good!

I was admitted to the hospital for 3 transfusions and had the first 1 infusions there. the second one infiltrated and ouch! mu sore arm. So i asked for a PICC line and now I won't have to worry about that complications. I don't know if I've been moody so much as tired all time. I also had some wierd symptoms - a sore mouth, leg cramps, shortness of breath and a wierd all consuming craving for black pepper on my food. i have had the craving for 3-4 months. It's all I could think about. Now the craving is completely gone. My mouth was better immediately after the transfusions (it was sore for 3 months!) I have not had leg cramps either. I'd be interested in hearing about other people's symptoms. The nurse who gave my infusion yesterday said somepeople get siarrhea from theiron infusions. I am normal so far, but when I take iron pills I get constipated. I may need the infusions twice a year too, hopefully not 10 every time! I am 3 years out.

has anyone been perscribed Repliva? My Ferrritin also was low (2)  Iron 11... Dpc says HBG not so bad at 9 (not so bad I dont need to be hospitalized...Yikes who knew that could happen)  any way I was at wits end so finally insisted I go to someone who would HELP ME feel better ... although I had read all about the iron infusion side effects I just wanted to feel better so I resolved myself to having it.... then the hemotogist prescribes this Repliva pill..... Well, I will take it for a month and see how I do.... on day 3 Let me know if you have been on this iron pill, and if it helped (PLEASE!)