Feeling sick and tired, cant increase Ferritin levels

Laura in Texas
on 4/13/19 5:16 am
RNY on 09/17/08 with

Can you go to a hematologist and self-pay?

Laura in Texas

52 years old; 5'7" tall; HW: 339 (BMI=53); GW: 140 CW: 150 (BMI=24)

RNY: 09-17-08 Dr. Garth Davis

brachioplasty: 12-18-09 Dr. Wainwright; lbl/bl: 06-28-11 Dr. LoMonaco

"If what you're doing doesn't work, change what you're doing - don't complain that it doesn't work."

sunshinespring
on 4/13/19 3:34 pm - Bay Area, CA

I guess that is another option, I was told that total infusion cost to be around $2100 once I found that out I stopped researching maybe I should be shopping around for infusions, I guess is not bad if its once a year.

NHPOD9
on 4/13/19 6:09 pm

My infusions run about $4500, but I also take a method that may be more expensive. I know I wouldn't be able to self-pay. Further, the hematologist would not accept me as a patient unless I was referred. It took years of badgering my PCP before she referred me.

However, could your gynecologist refer you? Granted I was pregnant, but my gyno was much more willing to refer me when my levels got low, and had she not relocated, I would have used her as a referring doctor when my levels tanked again.

~Jen
RNY, 8/1/2011
HW: 348          SW: 306          CW:-fighting regain
    GW: 140


He who endures, conquers. ~Persius

Laura in Texas
on 4/14/19 6:46 am
RNY on 09/17/08 with

I definitely think it should be your back-up plan. Good luck!!

Laura in Texas

52 years old; 5'7" tall; HW: 339 (BMI=53); GW: 140 CW: 150 (BMI=24)

RNY: 09-17-08 Dr. Garth Davis

brachioplasty: 12-18-09 Dr. Wainwright; lbl/bl: 06-28-11 Dr. LoMonaco

"If what you're doing doesn't work, change what you're doing - don't complain that it doesn't work."

Amy R.
on 4/13/19 6:34 pm

Have you been diagnosed with pernicious anemia? A lot of us have - generally it seems to mean that our bodies no longer make enough intrinsic factor to hold onto iron stores. It's beginning to be recognized as an auto-immune disorder. I'd be interested to hear your doctors thoughts and then to hear why he is refusing to refer you to the hematologist.

Also, Do you take a sublingual B12? That is said to aid in either the production of intrinsic factor and/or assist with iron absorption. I'm not saying that's going to cure you but if you're not taking the B12 in either an injection or sublingual those might be a couple of things you could try.

It's hard to imagine why people are getting such resistance to these infusions? My oncologist has a standing order in my chart to begin infusions when I reach a certain level. Do I just have better insurance? Or does your doc think you'll come to some harm by receiving infusions at this point?

It just doesn't make sense. I can only imagine how exhausted you and all of the others must be. It's hard to understand from here and I'm so very sorry you're dealing with all of this frustration simply because they won't approve the needed treatments.

caveat: I'm not up on the latest in iron levels and infusions and such so please don't take my word for anything. Talk to your doc; and hopefully more knowledgeable OH'ers will come along with more feedback as well.

sunshinespring
on 4/13/19 9:52 pm - Bay Area, CA

Thank you for message I been diagnosed when anemia by my previous doctor *****ferred me to a hematologist and that hematologist had a standing order that anytime my levels were less than 20 to get infusions, unfortunately my last doctor got transferred and by the time my ferritin sank again I had to push for the new doctor to approved me and she did almost 2 years ago, but I had to fight for it she only did it because I had a copy of the hematologist back then now she keeps saying that I'm fine that my iron levels are fine and ferritin isn't important and she makes me so mad!! You know she prescribed me 2000 units of vitamin D weekly! Yes weekly because my Vit D is a 22 I take 5,000 everyday imagine if I listened to her, a good idea is to ask my gastroenterologist for a referral thank you for the idea she knows of my struggles, I have medical and is so hard to get the care without jumping through this hoops, the self pay idea is also out because I found out I need a referral even for that and they don't due it because I have medical and I feel so sick, I'm out of air it hurts to breathe and can't put 2 words together my brain so foggy and my joints hurt, my b12 is 726 I'm just so confused, thank you for the message I will have to look around to see if my gastro can help me.

Amy R.
on 4/13/19 10:25 pm

I am just really sorry you are dealing with all of that. Your vitamin D supplementation is SO low compared to mine and many others. Does it get you in normal range and keep you there? Because I have to take 50,000IU twice per week to get and stay where I need to be.

Good luck and keep pushing. The squeaky wheel and all, right? They really will eventually get tired of you and get you taken care of if you just keep pushing. Loudly if possible.

Looking forward to hearing the good news that you've finally gotten what you needed. It's hard to hang in but that's pretty much all you can do. Don't let them make you so frustrated that you give up.

Take Care and please keep us posted when you have the time.

Kathy S.
on 4/17/19 5:23 am - InTheBurbs, XX
RNY on 08/29/04 with

This is what I use and it's worked well for me for years. I hope you can get your infusions soon but if not this may help you.... Good Luck

https://www.bettymills.com/generic-otc-ferrous-sulfate-elixe r-16-oz-(feosol)-medline-otc6020650?referer=search

HW:330 - GW:150 - MW:118-125

RW:190 - CW:130

Janet P.
on 4/18/19 8:02 am

You need a hematologist, not your GP. You will never get your numbers up simply by taking oral iron and eating iron-rich foods.

Try to find a hematologist who understands WLS - they will get the malabsorption. When I first experienced anemia, the doctor I went to had previous RNY patients (I had the DS). His opinion was any ferritin under 50 was anemic. I love him!

I've had various infusion drugs (ferrilicit and venefor) that worked but not long term. My last round of infusions was almost 2 years ago. New drug called Injectafer. Designed specifically for people that don't absorb oral iron. Starting ferritin was about 13 and it has stayed over 200 since April 2017 (last labs were Dec 2018 and my ferritin was 213).

I hope you find relief soon - I can't imagine functioning at 8 (you're probably not).

Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175

Valerie G.
on 4/25/19 6:12 am - Northwest Mountains, GA

Iron is absorbed mostly in the stomach. With your RNY, you are not using your stomach, but just a small remnant piece that has been sewn into a tiny pouch, so your chances of absorbing iron with food are extremely slim. For supplements, Proferrin iron forte is the easiest absorbed when it comes to iron.

As for complaining, your doctor is literally denying you care. Many docs will order infusions when iron levels dip below 12. One thing you can request is a referral to a hematologist, which can investigate your iron absorption.

Valerie
DS 2005

There is room on this earth for all of God's creatures..
next to the mashed potatoes

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