Iron VERY low - please help

[Stefanie S.]

My 3 month labs showed low levels of iron and ferritin, so the clinic told me to increase my dosage to 60mg per day and retest, which I just did. My iron is 23, with a standard range of 45-150. My ferritin is 8, with a standard range of 11-204. I take Proferrin which is supposed to be highly absorbable. It is also VERY expensive...

Here's response from clinic:

Hi Stefanie,

I have reviewed your results, and yes unfortunately they still are very low. Continue what you are doing, are you taking iron with Vitamin C? This helps increase absorption. Also make sure you are not taking Calcium and Iron together. You may increase Elemental Iron until up to 300 mg 2-3x daily (as tolerated/constipation) for at least 3 months. Repeat labs after 3 months. I think at this point since you have tried supplementation and it is not increasing a referral to hematology would be reasonable. They usually take a couple months to get the appointment, so I can place the referral today if you would like.

Let me know what you are thinking!​

I don't know what I'm thinking? I read NOT to take Vitamin C with this particular type of iron. However, I guess I need to switch iron types anyway because I am going to take up to 300 mg, 2-3x per day, then I will spend my entire paycheck on my current brand. Advice? Suggestions? Brand recommendations? I've been super tired... now I know why. Hoping to resolve this soon.

 

[southernlady]

Ask for a referral to a hematologist. Oral iron is not going to be absorbed as they have taken that portion of you small intestines out of the absorption of iron.

You need infusions ASAP

 

[Stefanie S.]

Ask for a referral to a hematologist. Oral iron is not going to be absorbed as they have taken that portion of you small intestines out of the absorption of iron.

You need infusions ASAP

So no one that has had the DS can absorb iron? Eek! They never told me that!

 

[Munchkin]

I seem to absorb it just fine but SOME do not. Iron was the only supplement that made me feel sick. It took me ages to find one I could tolerate. Right now they are saying take twice the 'normal' RDA requirement and really that's not much. I think the normal is 33 or 38(too lazy to look it up). But it sounds like you need an infusion. Not more pills!

 

[Stefanie S.]

I seem to absorb it just fine but SOME do not. Iron was the only supplement that made me feel sick. It took me ages to find one I could tolerate. Right now they are saying take twice the 'normal' RDA requirement and really that's not much. I think the normal is 33 or 38(too lazy to look it up). But it sounds like you need an infusion. Not more pills!

I sent the clinic a message asking for an infusion. Still waiting. So once I get an infusion... do I continue pills?

 

[Munchkin]

I sent the clinic a message asking for an infusion. Still waiting. So once I get an infusion... do I continue pills?

Needing an infusion once doesn't mean you will need them forever. And for some people they last for years. I would get the infusion and switch to cheaper iron. I get mine from Puritan. And who knows...the cheaper iron may work better. I would continue to take iron and see what happens.

There are those who no longer bother with iron pills because the know they don't absorb them. But you are too new to know for sure at this point.

I seem to remember you are or were vegan. Are you eating enough high iron foods? Cooking in cast iron, etc?

 

[Stefanie S.]

Needing an infusion once doesn't mean you will need them forever. And for some people they last for years. I would get the infusion and switch to cheaper iron. I get mine from Puritan. And who knows...the cheaper iron may work better. I would continue to take iron and see what happens.

There are those who no longer bother with iron pills because the know they don't absorb them. But you are too new to know for sure at this point.

I seem to remember you are or were vegan. Are you eating enough high iron foods? Cooking in cast iron, etc?

Wow - great memory! Yes, before my DS, I was vegan, and coincidentally, never had iron issues. But after the DS Surgery, I eat meat, cheese, and eggs every day. It seems weird that an iron infusion could last so long, but I sure hope it does for me! I hope I can get one soon too.

 

[Settledownnow]

My hemo always tells me not to bother to take iron supplements. Despite this, I have started to experiment with taking iron to see if I can stretch out the months between infusions. My iron has been the same since January at this point. I cannot get my iron to normal levels with oral supplements but I'm thinking I may be able to keep my iron from dropping as quickly. It is just a personal experiment. I go every 6 months for iron studies and a recheck. Make sure you continue to be followed by the hematologist so you can address low iron quickly and as needed.

I doubt you would have to wait 2 months for an appointment. That's too long to wait with your iron numbers. You might want to go around your PCP and schedule the appointment yourself if you do not hear something in a couple of days.

 

[DianaCox]

I don't take iron, except what's in my prenatal. Binds me up. I have needed infusions every 18 mo - 3 years since about 6 years out.

 

[Clematis]

I agree that 3 months is too long to wait.

FYI: Proferrin is heme which as far as I know can be taken with anything, including calcium (why I shell out the big bucks for it). My iron numbers are fine using it, and I take it in a handful with everything else I take twice a day.

 

[Spiky Bugger]

I need infusions every 6-9 months.

I don`t bother with oral iron.

 

[Stefanie S.]

Thank you to everyone. I can't seem to get my clinic to understand the urgency. I just compared my numbers from my labs done on May 2. Iron was 34 on May 2 and is now 23. Ferritin was 11 and is now 8....... after doubling my already high intake of supplements. I don't understand why they don't think this is worth getting me in much sooner for. So I'm taking matters into my own hands But I'm getting passed around at the Benign Hematology Clinic... they keep saying they need a diagnosis. I told them I guess malabsorption. They ask what kind of blood disorder. I say none. Ay! I didn't know this would be complicated!

Update... got someone, but I have to get all my medical records to them, and then he said they are scheduling into September. I'm too tired to take care of all of this

 

[Stefanie S.]

I need infusions every 6-9 months.

I don`t bother with oral iron.

Interesting. I wonder if I'll need to do this. By any chance do you know the cost? I am considering switching jobs and may be without insurance coverage for a couple months.

 

[Spiky Bugger]

I think I saw something horrid charged for the iron I'm using...like two grand a round, two rounds every 6-9 months. I think the "older" formulations might cost less.

But that is the "billed" amount, which is fantasy.

Here it is.

First Visit...
Billed: $2085.
Medicare Paid: $630.
Secondary Paid: $157.50

So they made ends meet with $787.50.

Second Visit...
Billed: $2085.
Medicare Paid: $634.20
Secondary Paid: $0.00

So they made ends meet with $634.20 that time.

 

[Spiky Bugger]

Thank you to everyone. I can't seem to get my clinic to understand the urgency. I just compared my numbers from my labs done on May 2. Iron was 34 on May 2 and is now 23. Ferritin was 11 and is now 8....... after doubling my already high intake of supplements. I don't understand why they don't think this is worth getting me in much sooner for. So I'm taking matters into my own hands But I'm getting passed around at the Benign Hematology Clinic... they keep saying they need a diagnosis. I told them I guess malabsorption. They ask what kind of blood disorder. I say none. Ay! I didn't know this would be complicated!

Update... got someone, but I have to get all my medical records to them, and then he said they are scheduling into September. I'm too tired to take care of all of this

So, how's your hemoglobin?

If it gets low enough while they dick around, you might get help...