When did you start to take Iron pills after infusions.

sunshinespring
on 5/24/17 2:19 pm - Bay Area, CA

Hello all,

I had iron infusions in November and they recommended not to take iron supplements right away but did not say when to, my ferritin levels are not what they were in January and would like to supplement, I have already sent an email asking my doctor but just wondering what you guys were advised

Thank you in advance!

CerealKiller Kat71
on 5/24/17 2:44 pm
RNY on 12/31/13

I also had my infusion in November. I was told to continue taking them once my levels were measured at 2 weeks after my infusion. The reason being is that it's useful for the hematologist to see if you increase, maintain, or drop once your levels are normal -- it gives some insight if you are absorbing at all. Then my levels were retaken every 4 weeks to watch the trend. They were still good in December, but dropping. Good in January, but dropping ... etc -- which gave us an early heads-up that I am not adequately absorbing iron from oral supplements. I have to drop under 35 for my insurance to pay for the infusions -- but it's trending down monthly -- at a very steady rate.

After my next infusion, my hematologist advised we can re-test with the patch to see if that works better for absorption. She asked that I not use it after November so we would be sure about oral absorption first.

At my last appointment, my hematologist said I was welcome to continue supplementing orally, but if I didn't want to bother any more, that was fine, too. It's obvious that I will likely need infusions two to three times a year.

"What you eat in private, you wear in public." --- Kat

sunshinespring
on 5/24/17 3:50 pm, edited 5/24/17 10:28 am - Bay Area, CA

OMG thank you for all this information, my hematologist also said to test every 3 months, when I started infusions I was 4 and in January my ferritin was 37.4 now I'm 24, my GP emailed me back and said I am fine at this number but I don't trust it, but I didn't supplement orally all this time per their instructions originally,

Now after the email back from GP I am just really worried and confused,

Thank you so much for all the info.

CerealKiller Kat71
on 5/24/17 5:48 pm
RNY on 12/31/13

That's really low -- I had infusions until I was over 90.

GPs and PCPs are notoriously under-concerned about low ferritin levels because they don't really understand that we are unable to absorb iron and rebuild like typical people. Thankfully, my PCP is in constant contact with my hematologist and has educated herself to understand that going below 30 is very bad for post-RNY patients.

Be sure to advocate for yourself!

"What you eat in private, you wear in public." --- Kat

sunshinespring
on 5/24/17 6:05 pm - Bay Area, CA

Definitely will, I had to fight for the first referral for infusions and I think I will have to for another one

Thank you for all the information!

seattledeb
on 5/25/17 1:46 pm

It can be a battle to get them onboard.

I am glad your doctor is do proactive.

Grim_Traveller
on 5/24/17 9:55 pm
RNY on 08/21/12
On May 24, 2017 at 9:44 PM Pacific Time, Kat W. wrote:

I also had my infusion in November. I was told to continue taking them once my levels were measured at 2 weeks after my infusion. The reason being is that it's useful for the hematologist to see if you increase, maintain, or drop once your levels are normal -- it gives some insight if you are absorbing at all. Then my levels were retaken every 4 weeks to watch the trend. They were still good in December, but dropping. Good in January, but dropping ... etc -- which gave us an early heads-up that I am not adequately absorbing iron from oral supplements. I have to drop under 35 for my insurance to pay for the infusions -- but it's trending down monthly -- at a very steady rate.

After my next infusion, my hematologist advised we can re-test with the patch to see if that works better for absorption. She asked that I not use it after November so we would be sure about oral absorption first.

At my last appointment, my hematologist said I was welcome to continue supplementing orally, but if I didn't want to bother any more, that was fine, too. It's obvious that I will likely need infusions two to three times a year.

I would love to read the results with the patch after your next infusion.

6'3" tall, male.

Highest weight was 475. RNY on 08/21/12. Current weight: 198.

M1 -24; M2 -21; M3 -19; M4 -21; M5 -13; M6 -21; M7 -10; M8 -16; M9 -10; M10 -8; M11 -6; M12 -5.

CerealKiller Kat71
on 5/25/17 6:36 am
RNY on 12/31/13

I will keep you updated.

I think she is excited about this, too! I am her personal little guinea pig.

"What you eat in private, you wear in public." --- Kat

sunshinespring
on 5/25/17 4:04 pm - Bay Area, CA

I am really interested too, since I have malabsorption also maybe a patch is the way to go,

On the meantime I need to figure out what am I doing wrong with the rapid decline on Ferritin,

Grim_Traveller
on 5/25/17 6:23 pm
RNY on 08/21/12

If you have been taking your iron and following those rules, you haven't done anything wrong. Some people just don't absorb oral iron very well after WLS.

The patch doesn't work well for everyone, but I have seen many have great results with the iron patch. It's worth a try. Just remember to stop 3 days before you have blood drawn for labs.

6'3" tall, male.

Highest weight was 475. RNY on 08/21/12. Current weight: 198.

M1 -24; M2 -21; M3 -19; M4 -21; M5 -13; M6 -21; M7 -10; M8 -16; M9 -10; M10 -8; M11 -6; M12 -5.

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