Squid machine for iron overload

[lindajo]

Does anyone know where the squid machine for measuring iron overload is. I think there is only one in the U.S.

My iron is climbing for no good reason. I have had one transfusion in the last five years. I would like to go wherever that machine is.

[eve]

there is one in nyc – columbia presbyterian
and childrens hospital in oakland california

eve

[lindajo]

Thanks for the information.

[Sandy L]

Hi Linda

What happens when you have iron overload? What will this machine do for you? Do you think that maybe some of the vitamins or supplements that you have just started might be raising the iron in your blood?

I know from you posts that you are very knowledgeable and probably know what vitamins you are taking and what they can do but can you share you knowledge with us.

Thanks and good luck with the machine.

[lindajo]

Well, I found out that the doctor wants me to go somewhere else. Haven’t decided what to do yet. My iron overload is puzzling. I have only had 16-18 units over the past 15 years. The past five years I have only had two units of blood.

My nutritional supplements were reviewed by a nutritionist, three chiropractors, and a chemist, not to mention my hematologist and general practitioner. We didn’t think any of them were causing the problem but as a precaution I went off of them in January to see. Initially I had a slight drop but now it is climbing again.

I am only at a level of 562. Many MDS specialists don’t chelate until 1500 is what the aplastic anemia-mds foundation research person told me today. They stop chelating when the level gets to some say 1000 others prefer 700.

The only thing I take now is Darvocet for pain and occassionaly sudafed for allergies.

I may not get a benefit from the SQUID machine if they aren’t going to chelate. I may wait until I get to 1500 to go.

Right now I am going to try and get into Cleveland Clinic to
see Dr. Mikkael Sekeres. Maybe he will have an idea or I can check into getting into the clinical trial for EXJade.

[patti]

Hi Linda,

I thought I saw on this list fairly recently that Exjade was approved now? Maybe I’m wrong. Wish I had some words of wisdom about the iron but I don’t. I’m sorry. Were you doing phelobotomy at one time to try and bring it down?

My MIL’s iron is at 1400 and her doctor said he doesn’t do anything until it’s 2000. Mom has already said she doesn’t want treatment for the overload though. But I digress… please let us know if/when you find out what’s causing it.

Best Wishes,

patti

[helenr]

Hi Linda

Has anyone thought you might have hemochromotosis?This is a very common genetic condition where some people have a higher ferritin count because they do not excrete enough excess iron. There is a simple genetic test available. I am also a carrier and one of our girls has the problem. As she is having children her levels are not too high yet.

Treatment is to donate blood. This is a problem when you a re anaemic. My husband’s ferritin was above 1000 when he was first diagnosed with MDS. He is now on the chelation route with 3units every three weeks.

Best wishes

Helen

[lindajo]

Yes, they thought of that. The initial analysis showed it wasn’t. They will repeat when I get to Cleveland,

[cthomas555]

Hi Linda,
I am a patient at The Cleveland Clinic and was referred by my hematologist there for the Ex-Jade protocol early this year but I have surmised that I do not fit their criteria. I also have RA and other inflammatory acute phase proteins that contributes to my increased measurements of over 5000. My rheumatologist says to ignore it and my hematologist does not show great concern …to my dismay.

Chris

[Author]

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