OT: Light Bulb Moment On Limb Movements and Iron

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kteague
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OT: Light Bulb Moment On Limb Movements and Iron

Post by kteague » Sat Apr 14, 2018 11:45 pm

A discussion today caused me to rethink my ever-ready advice to those with limb movements to check one's ferritin level and take iron to get it up. Not once did it cross my mind to include a disclaimer, and it should have. A 60 yo FB friend with MSA, or Multiple Systems Atrophy, was just diagnosed with Thalassemia. It is a hereditary blood disorder most common in those with some Mediterranean ancestry. For those who don't have the full fledged disease, but rather just the trait, it can appear like chronic anemia with no distinguishing symptoms. I know this because I have a daughter and 3 grandkids with it. For 9 years her doctor had me pushing iron, but an astute new doctor ordered more extensive iron testing and discovered her diagnosis. These persons cannot process iron properly, and giving them iron supplementation willy-nilly can result in iron buildup and cause damage to the brain and organs. Why it took doctors 60 years to discover my friend's blood disorder I'll never understand. What doctor who has a patient with chronic anemia that doesn't respond to treatment doesn't do more testing? Maddening. Now I can't help but wonder if her MSA may be related to iron buildup. From now on I will add testing for Thalassemia to my suggestion for ferritin level testing before recommending iron supplementation. Just in case.

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MamaGord
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Re: OT: Light Bulb Moment On Limb Movements and Iron

Post by MamaGord » Sun Apr 15, 2018 12:06 am

That is very interesting, thanks for sharing.
Emily ~ happily married mom to 4
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JDS74
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Re: OT: Light Bulb Moment On Limb Movements and Iron

Post by JDS74 » Sun Apr 15, 2018 10:43 am

+++1
Thank you.

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sptrout
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Re: OT: Light Bulb Moment On Limb Movements and Iron

Post by sptrout » Sun Apr 15, 2018 3:45 pm

Not sure that anyone should increase their ferritin level, you may be referring to iron in the blood being too low and needed to be increased, which is totally different. Ferritin is a marker in the blood indicating how much iron is being stored in your body's organs, something that you do not want. Oddly, once iron is stored in the organs, it has no way to remove it and so it just sits there and oxidizes (turning to rust to be simplistic). High ferritin levels (50 or more, sometimes OK upto 100 or so) is an indicator of a genetic blood disorder called "hemochromatosis" which stores high levels of iron in most organs of the body and can cause all kinds of problems including death if not caught and treated. The main treatment for high ferritin levels is blood donations, many blood donations, every week until the ferritin is either reduces to safe levels, or the person becomes anemic, or cannot handle that many blood donations. There are a couple other ferritin lowering options, but only used if a person cannot handle giving blood, and some cannot.

I am currently in the middle of my ferritin reduction program. After four blood donations in 3 1/2 weeks my ferritin dropped from 600 to under 300. My doctor told me to continue my blood donations until my ferritin level drops to 50, but at a reduced rate of once a month (which is still twice the number allowed by the FDA for normal blood donations; every 56 days). After I reach 50, I will have to keep giving blood for the rest of my life, but hopefully only two or three times a year.

Correct levels of iron in a person's blood is important, but ferritin is a bad thing, and can be a very bad thing.

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Re: OT: Light Bulb Moment On Limb Movements and Iron

Post by prodigyplace » Sun Apr 15, 2018 3:58 pm

sptrout wrote:
Sun Apr 15, 2018 3:45 pm
I am currently in the middle of my ferritin reduction program. After four blood donations in 3 1/2 weeks my ferritin dropped from 600 to under 300. My doctor told me to continue my blood donations until my ferritin level drops to 50, but at a reduced rate of once a month (which is still twice the number allowed by the FDA for normal blood donations; every 56 days). After I reach 50, I will have to keep giving blood for the rest of my life, but hopefully only two or three times a year.

Correct levels of iron in a person's blood is important, but ferritin is a bad thing, and can be a very bad thing.
Can the blood you donate be used since it has high ferritin levels? This is new to me.

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sptrout
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Re: OT: Light Bulb Moment On Limb Movements and Iron

Post by sptrout » Sun Apr 15, 2018 4:20 pm

prodigyplace wrote:
Sun Apr 15, 2018 3:58 pm
sptrout wrote:
Sun Apr 15, 2018 3:45 pm
I am currently in the middle of my ferritin reduction program. After four blood donations in 3 1/2 weeks my ferritin dropped from 600 to under 300. My doctor told me to continue my blood donations until my ferritin level drops to 50, but at a reduced rate of once a month (which is still twice the number allowed by the FDA for normal blood donations; every 56 days). After I reach 50, I will have to keep giving blood for the rest of my life, but hopefully only two or three times a year.

Correct levels of iron in a person's blood is important, but ferritin is a bad thing, and can be a very bad thing.
Can the blood you donate be used since it has high ferritin levels? This is new to me.
Yes, but it usually requires a doctor's prescription since a person has to donate many more times than what is allowed. Also, remember that ferritin is just a marker of iron being stored and is not a problem for anyone that will receive the donated blood later. One other issue though is that the blood center always checks a donator's red blood cell count to make sure that a person's blood is not lacking in this important feature. A person that is giving blood at a very accelerated rate will have their RBC reduced as the process continues. Once it drops below 39% then the blood is not usable and must be discarded. At this point the blood center may want to charge for the costs of taking your blood (not the case if a person is on Medicare or Medicaid). Using me as an example. my RBC started at 47% and has dropped to 41% after 6 donations in about 5 weeks. Still good enough for the blood center to treat my donation like anyone else's. Hopefully, with a once a month schedule that I am on now, my RBC will stay above 39%.

In addition to above, some doctors are equipped to take blood donations in their office (blood discarded) if the local blood bank will not accept hemochromatosis patients. What I stated above is what I am doing, but this varies by location and state I believe. I am not real clear on all the possibilities, but bottomline, there is no reason that a hemochromatosis patient's blood cannot be used in the blood donation system. However, sometimes the rules cannot keep with the truth.

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kteague
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Re: OT: Light Bulb Moment On Limb Movements and Iron

Post by kteague » Sun Apr 15, 2018 4:35 pm

Here's an article about ferritin.
https://www.healthline.com/health/ferritin#ferritin

Ferritin is necessary to a body in relation to iron processing for use by the body. Iron is necessary to our health. Too little or too much ferritin or iron can be problematic. There are so many blood disorders that levels harmful for one may be life saving to another. Some with limb movement issues have trouble accessing available iron. Not enough ferritin can be a culprit. Suggesting a ferritin level be at the upper end of what is considered a normal range is reasonable. I would never suggest one go outside what is deemed medically acceptable. I guess there will always be a possibility someone could have a diagnosis that makes general assumptions not applicable to them.