Need Help in No Cali

I need a doc that understands RNY post op patients.  I am 4 1/2 years post op and everything was great but now I am iron deficient and Kaiser docs don't want to treat me...the intial recommendation for me was 325mg ferrous sulfate 1x per day - finally I have gotten in touch with a Bartiatric Nutrionist from the Richmond Bariatric clinic - she recommends an iron infusion and told me to switch to ferrous gluconate 3x per day but I have already been denied a consult with hematology and the iron infusion.  My levels

HGB 10.3
Hematorcrit 32.2
MCV 68
Iron 22
Ferritin <1
TIBC 571
Vit B6 and Vit D are a little low but nothing that better supplements won't help.

Kaiser docs told me that iron deficiency isn't a problem if it isn't causing severe anemia and that my HGB is just barely low.  Docs said infusions are too dangerous and that I should just be able to up my iron levels with oral supplements.  I am trying to get a 2nd opinion from a hematologist (self-pay) but so far no luck.  Any recommendations for docs in Sacto area?   My hair is falling out, skin is dry, I am more than exhausted, have shortness of breath and heart palpitations.  I supplement protein daily so I don't think that is why the hair is thinning - besides it doesn't feel the same as when I am not getting protein, my hair is different (what is left of it...)  Your advice is not only solicited by I am begging for it!  thanks -dawn

I think your Kaiser docs are nuts!  My hematologist wants my ferritin at 65 or above.  Heck, last week I saw her and I was at 90 and she still gave me my iron infusion.  As for iron infusions being dangerous, there is one called Venofer.  It takes about a half an hour to get.  I get IV benadryl first and then the Venofer.  I'm allergic to the world and have never had an issue with the Venofer.   My hemoglobin and hematocrit have been normal since last year but my ferritin stays low.  So you don't have to have a low hemoglobin to be anemic.  And a hemoglobin of 10.3 is considered anemic.  Normals for women are 11-15.

Unfortunately, I can't recommend anyone since I'm in Iowa.  If your insurance won't treat you, I'd file a complaint with your AMA or insurance commission in California. 

You HAVE to get this treated.  You can end up damaging organs because they aren't getting enough oxygen.  Please seek help any where you can.  What about your WLS doc?  Where is he/she in all this?  Surely he knows the dangers of this for someone who has had RNY. 

Please don't give up and keep fighting to get treatment even if you have to pay for it yourself.  Your life is in danger. 

Keep us all informed.

Lyn

Thanks for your encouragement - I am so tired it makes it that much harder to fight the docs...but I do have a list of hematologists from my WLS guy and I am waiting to see if they will see me... I do have trouble believing they don't care about the ferritin level...thanks for the encouragement -- it really does help!  dawn

Hi Dawn,
 I agree with the other Lyn (hi Lyn! ) but in the meantime, while fighting the *******s....get on-line and order some GOOD iron. Do NOT take anything that says ferrous sulfate. Crap, total crap and you'll be constipated for months! Here is what I take:
Hematinic Formula by Solgar or:
 Natures Plus Chewable Iron
Get a good iron and start pounding it, daily. I doubled my dose (from whatever it says on the bottle) and took it twice a day, morning and night. My ferritin level went from 7 to 60 in a couple of months.
 The trick is getting a good one that you will absorb. Order on-line or go to a reputable vitamin store. Buy a iron that is amino acid chelate (bound to a protein for high absorbability) or ferrous gluconate is ok too, just make sure you buy one that is non-constipating. Some manufacturers put this on their label.
 But I would NOT wait for the docs, just start pounding the iron and if you are taking the right one, your levels will start to go up, while you are fighting with stupid Kaiser....
 Best of luck to you, Kaiser is soooo irritating sometimes!

Thanks for the post - I feel so sick and tired!  I have been in touch with someone via email who may be able to get  me the right iron, or who will stick with me as I try different types.  The gluconate is starting to make me nauseous after 3 doses...I am  trying to get it in and relying on the docs is so-o frustrating...I think we are going to opt out of Kaiser in June during open enrollment -  it is too hard when you don't fit into the norm - they really don't seem to know what to do with me!  Thanks for the support!  dawn

How about a gastroenterologist?  My husband became anemic (no bariatric surgery) and he had a EGD with a biopsy and is allergic to gluten.  My ferritin level is >100 without supplements other than a multivitamin!  Hard to believe we both had RNYs.  Daisy

Thanks to all who have posted.  I am disheartened - my doc says that at my HGB levels I should not have any symptoms and that iron deficiency doesn't cause any symptoms at all - just anemia.  He politely suggested that if my symptoms are getting the better of me that I could 'talk' to some people at Kaiser - probably psych.  Y'know I went in to his office 3 weeks ago complaining about fatigue, hair loss and dry itch skin.  At that time I thought it was thyroid...He as much as told me that either something would show up in the blood work or that it was just stress and that he wouldn't be able to treat it, it should resolve on it's own in 6 mos.  Now 3 weeks later I have given up my gym class 2x per week because of the fatigue and now if I move to fast I get out of breath and heart palpitations - I guess he believes that I am just stressed over this non-existent medical condition.  d#$%n d@cs and their stress/mental health dx!  I  have been through chronic major depression and it was one of the health problems this surgery cured!  Now that I have some measurable complaints (you can see my scalp) he thinks it is stress because they are not treating my 'mild' anemia.  Sorry, I am just *****ing now - I made another appointment so he can tell me to my face that he mis-diagnosed me the first time - he should have diagnosed me mental since that is what he is thinking now...

On a side note he researched me ferritin going back to 2005 - it was in the 70's immediately post -op but in Nov 2006 it dropped to 22 but because that is still in the normal range no one paid attention - that will teach me to rely on medical professionals!  Had I started oral iron supplements at that time...and if I had a $1 for each time I have said IF...

I know, whine, complain and moan but I am TIRED, COLD, BREATHLESS and now disheartened.  It is late and I am really tired, maybe tomorrow it will all seem reasonable and rational and he will actually try to find out what my problem is...push some karma my way...thanks dawn

I mentioned the gastroenterologist.  How about an endocrinologist for a really good thyroid workup!  Or try a cardiologist to treat the heart palpitations!  I would not go back to the doctor you saw before.  He is just collecting office fees without using his brain.  Or how about an ER visit.  My sister had a 10 lb tumer that many doctors missed but they found in an ER.  I know you are tired and don't want to spend any effort running around but you need to.  good luck, Daisy 

Thanks for the suggestion.  I made an appt for today with my PCP to let him have a do-over.  I told him that if anemia wasn't causing my symptoms I still wanted a diagnosis for the problems I originally went to him for!  He was sympathetic and spent over an hour with me and my husband trying to figure out what to do.   He was very frustrated that the hematologists has denied his request for referral and although he is able to order the iron infusion he is hesitant to do it.  He said that in the next two weeks there is a test he can do to see if I am absorbing the iron and making new red blood cells.  At least he was sympathetic and although it sounded like he had given up in his email he hadn't...however it was still up to me to make the appointment, he didn't bother to call me!  BUT he did send me to an ENDOCRINOLOGIST who rocks!  She was very sympathetic and didn't treat my symptoms like I was mental.  She is testing me for inflammation that would make me at risk for Hashimoto's, celiac disease and something to do with cortisol.  But she strongly thinks that I am hypoglycemic.  I have to do so more research in to this but she says that she has treated a lot of RNY patients who 2+ years post op develop hypoglycemia.  She also said that Vit D blood tests have a standard deviation of 10 points and that she thinks that my Vit D is very low and that causes fatigue and muscle fatigue/weakness.
I am very happy to be working with her!  So, I think ti was just bad communcation from my doc's office and the other specialists he consulted.  I am still waiting to hear from the private pay hemtaologist...I still want a second opinion about that.  I am making big changes to my vit/mineral regimen and looking to switch to better protein - I will post my progres...Thanks for all the posts and support.  dawn

I have been suffering from low blood sugars since 6 months out.  My endocrinologist told me a long time ago that I should eat only lean protein 8 times a day.  I tried but it was impossible.  7 days ago I started eating only 2 oz of lean meat and non starchy veges up to 8 times a day and I have not had one low blood sugar in days.  Not after swimming either which always stressed my blood sugars.  I take a multivitamin and calcium citrate.  keep in touch and I hope it works out for you.  Daisy