VSG to DS: Iron Infusion Complete

[Stefanie S.]

I wanted to send some encouragement to anyone out there suffering from low iron / ferritin. My May numbers showed me low in iron and I was told to try 325mg per day. I was retested in July, and instead of improving, my numbers continued to go down. I was referred to a hematologist who could not get me in until October. But I was feeling sooooo tired and I knew I wasn't focusing very well. I begged them to get me in sooner, to no avail. Called a few other hematologists, some of who had a waiting list and were scheduling out a year!

Finally a friend referred me to someone and they asked to see my labs. I got them over right away. Doctor took a look THAT DAY and told his schedulers to get me in ASAP. I went in the next day, and he ordered iron infusions for the following week. I felt validated! He said that I wasn't in dangerous levels, but he had seen bariatric patients like me and the trend would just keep going down no matter how much iron I was taking and I would continue to feel worse and worse. He saw no need to prolong that suffering. I wanted to hug him!!

So, after reading several posts here, I realize that my numbers are a little worse than some, but certainly better than others. No matter! I say, keep at it until you find a hematologist that CARES and understands our unique situation. And at very minimum, you may want to call a hematologist at the first sign of low numbers and not feeling well, because the wait may be long to get in. I'll post my numbers here so you can see exactly what my hematologist thought was worthy of a round of infusions.

 

[Stefanie S.]

Also... I will ask my hematologist when I go for my follow-up in 2 months, but does anyone know how in the world in just August, my iron numbers actually went up, but my ferritin went down? I was almost surprised that the doctor went ahead with my iron infusions after seeing that my iron had started to jump up. But I'm so glad he did, because I already feel so much better!

 

[nedsmehlp]

Thanks for posting your iron numbers! My numbers are so comparable to yours. My PCP put me on an iron prescription but my numbers have dropped the last 2 months. She told me to take double the pills. I still feel tired! I'm going to try to find a hematologist that will get me in soon! Stefanie, you have helped me many times with your posts! Thanks for sharing your experiences so if we have the same problem we know what to do!

 

[Stefanie S.]

Thanks for posting your iron numbers! My numbers are so comparable to yours. My PCP put me on an iron prescription but my numbers have dropped the last 2 months. She told me to take double the pills. I still feel tired! I'm going to try to find a hematologist that will get me in soon! Stefanie, you have helped me many times with your posts! Thanks for sharing your experiences so if we have the same problem we know what to do!

You just made my day! That's what this is all about - sharing our experiences and learning from each other. I'm sorry you are so tired. It is miserable. I dealt with it for 4 months. YES, please start contacting hematologists now so you can get on their schedule. Tell them that your iron is directly related to DS, and that you no longer absorb iron via the gut, and that you've been told you will probably need an iron infusion. I'm pretty introverted, but I'm learning to advocate for myself and tell doctors exactly what I need. Keep me posted!

 

[Spiky Bugger]

Thanks for posting your iron numbers! My numbers are so comparable to yours. My PCP put me on an iron prescription but my numbers have dropped the last 2 months. She told me to take double the pills. I still feel tired! I'm going to try to find a hematologist that will get me in soon! Stefanie, you have helped me many times with your posts! Thanks for sharing your experiences so if we have the same problem we know what to do!

We need to tell doctors that the parts of the gut that absorb iron aren't there anymore and that it doesn't matter if it's a bottle of iron supplement pills or a pound of liver and onions, it ain't gonna get absorbed. Now, that isn't the exact scientific truth...but it tells the story. If they can follow that...tell them that the same applies to Vitamins A, D, E and K...and calcium and maybe copper and other stuff.

If they can't follow that, get a new doctor...because it just isn't worth getting sick, then disabled, then dying.

PS--if you are in an HMO and you like your doctor otherwise, you CAN try saying, as nicely as possible, something like, "Well, you know I'm not much of a fighter, but will you tell me how to appeal this decision and get a referral to a hematologist experienced in post-bariatric surgery malabsorption, so that we have more input on this, you arrogant horse's ass?" Except leave off the last four words.

 

[Stefanie S.]

We need to tell doctors that the parts of the gut that absorb iron aren't there anymore and that it doesn't matter if it's a bottle of iron supplement pills or a pound of liver and onions, it ain't gonna get absorbed. Now, that isn't the exact scientific truth...but it tells the story. If they can follow that...tell them that the same applies to Vitamins A, D, E and K...and calcium and maybe copper and other stuff.

If they can't follow that, get a new doctor...because it just isn't worth getting sick, then disabled, then dying.

PS--if you are in an HMO and you like your doctor otherwise, you CAN try saying, as nicely as possible, something like, "Well, you know I'm not much of a fighter, but will you tell me how to appeal this decision and get a referral to a hematologist experienced in post-bariatric surgery malabsorption, so that we have more input on this, you arrogant horse's ass?" Except leave off the last four words.

Or include the last 4 words... and repeat them over and over I tell you, my anxiety was through the roof trying to get someone to understand and care.

 

[Settledownnow]

Also... I will ask my hematologist when I go for my follow-up in 2 months, but does anyone know how in the world in just August, my iron numbers actually went up, but my ferritin went down? I was almost surprised that the doctor went ahead with my iron infusions after seeing that my iron had started to jump up. But I'm so glad he did, because I already feel so much better!

Ferritin and iron are not the same. Ferritin is a protein that stores and releases iron. See Ferritin Level Blood Tests
My hemo does not really go by ferritin levels because the levels are impacted by many other factors. It can be one indicator of anemia, but ferritin alone cannot be used to diagnose anemia. Also, see Iron Deficiency Anemia Secondary to Inadequate Dietary Intake for more on the diagnosis of anemia.

Thinking about what you went through, you might ask the hematologist you saw to write a letter to your DS surgeon and PCP that states your diagnosis of anemia related to malabsorption, the iron infusion, and the follow-up treatment plan. They need to know this is a big deal and your labs need to be monitored on a regular basis. At least they may help the next patient, if not you.

 

[southernlady]

I was always told that ferritin is your savings account for your iron.

 

[Stefanie S.]

Update: Just had my iron checked and the infusion worked, though I'm just barely into normal on all of my numbers now. Doctor said I'll likely need infusions every 6 months until menopause. He said that he'll continue to monitor me after menopause, but I probably will no longer need infusions. I'm not sure I understand that fully, but we shall see what happens. He also said not to bother taking any kind of iron supplement as they are absolutely not absorbed... that works for me!

 

[southernlady]

Update: Just had my iron checked and the infusion worked, though I'm just barely into normal on all of my numbers now. Doctor said I'll likely need infusions every 6 months until menopause. He said that he'll continue to monitor me after menopause, but I probably will no longer need infusions. I'm not sure I understand that fully, but we shall see what happens. He also said not to bother taking any kind of iron supplement as they are absolutely not absorbed... that works for me!

I’m 63, had the baby motel taken out at 39. I still went thru menopause about 6 years ago (blood tested three years in a row). I required an iron infusion 3 years ago.

You are a DSer, all the old rules about iron are thrown out. We can’t absorb iron well due to what is bypassed in our guts, male and female.

 

[Stefanie S.]

I’m 63, had the baby motel taken out at 39. I still went thru menopause about 6 years ago (blood tested three years in a row). I required an iron infusion 3 years ago.

You are a DSer, all the old rules about iron are thrown out. We can’t absorb iron well due to what is bypassed in our guts, male and female.

That's what I was thinking! Thank you for confirming. I mean I'm not excited that I'll probably always need an infusion, but it makes more sense to me.