5 years out, Ferritin issues

metamorphosis007
on 4/26/14 9:18 am

Hello all! Had my surgery 5 years ago, and have had amazing results. My only big issue now is my ferritin levels. I used to take 10 Ferrlecit infusions once every year or so and that would hold me over. In the past year, I no longer become anemic, but my ferritin drops quickly after infusions. From 375 to 67 in 3 months. A few times I've gotten as low as 2. My hemo wants my levels to stay above 200. I now get 6 infusions every three months with monthly lab draws which show I drop about 100 points of ferritin a month. The infusions are very rough on me, I have awful reactions and take a bunch of pre-meds so I don't go into anaphylaxis. Not to mention the hassle of having to take time off work and have someone drive me home after the infusions are over. My hematologist seems to think that I am losing the ferritin simply because of my surgery and because I still have a heavy period. I understand why I don't absorb iron, but I don't understand why my body is not holding onto the ferritin more efficiently. I'm just wondering in anyone else, this far out, has had similar issues with the ferritin levels. 

You gotta love livin', baby, 'cause dyin' is a pain in the ass.---Frank Sinatra
Amy W.
on 4/26/14 12:22 pm, edited 4/26/14 12:23 pm - Buckeye, AZ
Do you take iron pills? Sounds like it might be your heavy periods and all that blood loss each month. I have issues too. I also have infusions.

5" 7' -  HW: 328 Current: I stay around 155 :) 
"...Because when you stop and look around, this life is pretty amazing."


 
 
 
 
 
  

Amy, Daredevil
Extraordinaire

on 4/27/14 1:05 am - Los Angeles, CA
DS on 08/06/13

Have you considered an IUD that would lighten or eliminate your periods?

*DS with Dr. Ara Keshishian on 08/06/13* SW: 231 CW: 131 GW: 119 * Check out My YouTube Channel: AmysDSJourney *

   

metamorphosis007
on 4/28/14 10:36 am

I have a 3 year old that was conceived shortly after my DS with a Mirena in! And unfortunately it never lightened my periods, only prolonged them. 

You gotta love livin', baby, 'cause dyin' is a pain in the ass.---Frank Sinatra
airbender
on 4/27/14 9:43 am

everyone is different, some vit d, some vit k, vit a, iron, CA,  deficienies -you get the picture....some suggestions...if you don't mind the stain, you can get iron injections much safer than the infusions.  I would also take oral, at least to supplement.  a great iron RX is proferrin forte, 3xs/day ask your hem/onc about them.  my hem/onc wanted to give me infusion----no way...so the proferrin forte I was taking 4 a day now I am down to 1 a day.    if you have a heavy period, I would opt for the mirena (I have not had a period in 10+ years, with mine-love it, and I am not getting rid of it.. obviously if you are trying to get pregnant or have not had children this wont work)

teachmid
on 4/27/14 10:53 am - OKC, OK
The type of infusion I had a couple of years ago took about 15 minutes, no premedication or side effects.
Wish I remembered the name.
My hematologist says I have to wait until my ferritin is below 20 for another. Right now it's 23
     -Gail-
SW  257    CW  169  GW  165
  
teachmid
on 4/28/14 9:08 am - OKC, OK
The type of infusion I had a couple of years ago took about 15 minutes, no premedication or side effects.
Wish I remembered the name.
My hematologist says I have to wait until my ferritin is below 20 for another. Right now it's 23
     -Gail-
SW  257    CW  169  GW  165
  
Most Active
Recent Topics
×