Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?

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Sequoiah66
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Joined: Wed Jun 27, 2018 9:47 pm

Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?

Postby Sequoiah66 » Wed Jun 27, 2018 11:42 pm

Greetings all:
Had a genetic disease that caused kidney failure at age 42. (13 years ago.) Got a transplant, but with extra mass of the old kidneys and the new one, I've got enough Erythropoetin that I make too many Red Blood Cells (RBC)

Have had RLS and PLM on and off for somewhere between 5 and 8 years. A few years it got bad enough that I started seeking medical support. Got some, but now its not enough. Now my RLS its constant and worse. In order to get enough rest to be vertical, my waking days are now too short.

Originally tried Pramiprexol (sp?) and it was great. But after a few years I started having side affects and had to stop. Went through a couple more meds and ended up with NeuPro. That helps some, but not enough. went up to 2MG patches, but started having morning nausea side effects. Back to 1mg every night or two.

Tried oral iron with seeming no affect.
Got a series of 4 weekly IV iron (only 250mg ea) and it raised my iron (feratin?) from 18 to 75 and voila! My symptoms vanished!!! YAY!!! But within a month they were back as my iron went down again and now is steady at 25.

Unfortunately, my Oncologist was the one who did the IV iron and she is paranoid about raising my iron as she wants my high Hematocrit (currently 59.2) to be much lower. It was higher (60 - 62) for many years since my kidney transplant. She thinks IV iron will cause yet higher Hematocrit.

This latest RLS bout may be a result of starting Phlebotomies 2 years ago every 1/2/3/4 mo to reduce my Hematocrit. Probably why I ended up with the 18 iron reading above.

So, join, looked at the Iron and RLS webinar (fabulous!!) and starting to educate my doctors. Oncologist won't contact the 2 specialists listed in Denver (I'm 60 miles north of that - tried to contact for apts but one won't see me because I'm Medicaid and the other haven't gotten a real person yet) but wants me to see a Hematologist to find the line to keep my hematocrit acceptable.

So I'm caught in a catch 22 between too low iron and too high Hematocrit. Anyone else been here and anyone found anything useful?

As I have an engineering, science and systems background, I modeled this and my savior is the time lags and the slow rate of red blood cell production and limited decline of Iron. I'm guessing there is no static (constant) solution, but there is a dynamic one where I do both IV iron and Phlebotomies in an endless series. That is, figure out a schedule of IV Iron and Phelbotomies that keeps me at a high enough Iron level (and RLS free), yet removes some blood whenever my red blood cell count gets too high (which will pull more iron out of my system to replace the blood cells.)

I need to get this going as my life is not very functional. Doctors are **so slow**.....

-- S

stjohnh
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Re: Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?

Postby stjohnh » Thu Jun 28, 2018 12:01 am

Hmmm... the RLS advice is simple, get more IV iron. Seems to me that a hematologist is the way to go so that you can get it safely. The high erythropoitin is a problem, the hematologist should be able to help. Worst case I suppose is surgery to remove the nonfunctional (but still erythropoitin producing) kidney.
Blessings,
Holland

Rustsmith
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Re: Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?

Postby Rustsmith » Thu Jun 28, 2018 1:43 am

Sequoiah66, you didn't say who it was that you checked with in Denver. If it wasn't the Neurology department at UC-Denver, I highly recommend that you get your doctor to give you a referral to them. I live in Pueblo and drive up there several times a year to see Dr. Jean Tsai. Although UC-Denver is not a Foundation Quality Care Clinic, the Foundation staff has assured me that it is only because they haven't submitted the paperwork (which is probably because they don't need the increased workload). The only downside is that it takes about 4 months to get a new patient appointment, but for me it has been totally worth it. They will also probably provide you with a referral to someone in their hematology department, so in many ways you get the best of all worlds since the doctors there are either researchers or teaching professors. Either way, you are getting access to some of the best doctors in the state.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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Sequoiah66
Posts: 4
Joined: Wed Jun 27, 2018 9:47 pm

Re: Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?

Postby Sequoiah66 » Tue Jul 10, 2018 7:00 pm

Post by stjohnh » Wed Jun 27, 2018 6:01 pm
Hmmm... the RLS advice is simple, get more IV iron. Seems to me that a hematologist is the way to go so that you can get it safely. The high erythropoitin is a problem, the hematologist should be able to help. Worst case I suppose is surgery to remove the nonfunctional (but still erythropoitin producing) kidney.


Yup. Heading to a Hematologist in ...17, 15, 13, 11, 9, 7 (YAY!) days!! Ostensibly to establish a max hematocrit, but hopefully also to get some IV Iron. Interestingly, my erythropoetin is lowish normal, I guess I am just on the more sensitive side of its effectiveness. And removing a kidney doesn't seem to be an option. It's a very nasty operation, compounded by the nasties that can grow in the kidney cysts.

In the mean time, I'm taking my iron supplement and injestingeating more iron foods later in the day and switched to Slow Fe and that might be helping a little bit.

Sequoiah66
Posts: 4
Joined: Wed Jun 27, 2018 9:47 pm

Re: Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?

Postby Sequoiah66 » Tue Jul 10, 2018 7:08 pm

Postby Rustsmith » Wed Jun 27, 2018 7:43 pm
Sequoiah66, you didn't say who it was that you checked with in Denver. If it wasn't the Neurology department at UC-Denver, I highly recommend that you get your doctor to give you a referral to them. I live in Pueblo and drive up there several times a year to see Dr. Jean Tsai. ...


Like seems to refer to like. My Sleep guy referred me to my oncologist as she knows more hematology, but she referred me to a full time Hematologist at UC Denver (Anshuts Medical Center) in their Cancer Center. Not a Neurologist. But I will keep that as an option for further referrals / consults. Yes, I WANT to get to researchers as I found with my PKD that is how one gets the best and most up to date care (which was changing monthly back then).

One .... slow motion .... step at a time. If only the doctors got to live this "dream life" of crawling through my days, maybe they would figure out ways to make things go faster for their patients...

badnights
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Re: Hello from Sequoiah66 - Anyone else Iron Deficient & RBC High?

Postby badnights » Fri Aug 03, 2018 5:24 am

If only the doctors got to live this "dream life" of crawling through my days, maybe they would figure out ways to make things go faster for their patients...
Amen to that. A lot of us are tired of being guinea pigs for our doctors to learn on, putting ourselves into or losing days or months of sleep just to convince then of something we were certain was wrong. The price is so high!

You have an interesting (and sad) problem that I know little about. I don't know if it will impact anyone's decision to give you IV iron (or daily oral iron), but people with WED/RLS can't seem to keep high enough levels of ferritin, even after having raised it to a decent level. Without continual supplementation, the level invariably (for most of us) falls again.
Beth - Wishing you a restful sleep tonight
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