Low Iron, Low Ferritin

tigerlily96

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kent
Hi,

I have recently been diagnosed with PBC -primary biliary cholangitis, my Iron is 5 and ferritin 6, I suffer from alopecia, doc wants me to go on Urso and have an iron infusion. I'm avoiding both! Any advice would be great.
 

Henry

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Nov 23, 2014
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Why avoid Ursodesoxycholic acid? Also , with that iron status you should consider getting more iron.
 
OP
tigerlily96

tigerlily96

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Why avoid Ursodesoxycholic acid? Also , with that iron status you should consider getting more iron.
Because I react to all medications and all fillers and binders. Plus Urso well known for hair loss and that's the last thing I want. I have always ate red meat, and just didn't feel an iron infusion was right.
 

tankasnowgod

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I didn't know anything about PBC, but looking it up on wikipedia, I see that it's an "autoimmune" disease of the liver. Seeing this, I would be veeeeeery skeptical of an iron infusion. If your liver isn't working correctly, I would think the last thing you would want is an infusion of a problematic heavy metal.

While your iron and ferritin markers seem very low, how are your hemoglobin numbers? What about UIBC, Unbound Iron Binding Capacity?

Here is a random thought- maybe this liver condition is the result of your body being unable to produce the standard iron binding proteins, like ferritin, transferrin, and lactoferrin. As a result, your liver is sequestering all free iron that comes to it through the bloodstream. This could have led to liver damage, and the "autoimmune" condition, which falls in line with what Peat thinks about autoimmune conditions. Honestly, I have no idea, but that seems like a possibility.

I would certainly avoid an iron infusion or injection until you have the UIBC test done. If that number is low, I think the iron infusion would probably just make things worse. If hemoglobin is above 12.5, I don't know if there would be any upside to an infusion, despite your low iron numbers, anyway. You can buy lactoferrin (bound and unbound with iron) and ferritin as supplements, that may be something to look into.

Lastly, I would check out Iron Blog and look in the deficeincy, boost your ferritin, and out of balance sections, and see if anyone has dealt with this before, and what helped and what didn't.
 

tankasnowgod

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Looking over the Treatments on Wikipedia, a couple things jumped out at me.

First- "To relieve itching caused by bile acids in circulation, which would normally be removed by the liver, cholestyramine (a bile acid sequestrant) may be prescribed to absorb bile acids in the gut and be eliminated, rather than re-enter the blood stream. Alternative agents include stanozolol, naltrexone and rifampicin.[35][36][38]" Naltrexone seems to be very popular and well tolerated in people with autoimmune conditions. Also, I wonder if some dose/combo of activated charcoal/cascara/emodin would have a similar effect, and maybe even help the liver heal itself or get working again.

Second- "Patients with PBC have poor lipid-dependent absorption of Vitamins A, D, E, K.[43] Appropriate supplementation is recommended when bilirubin is elevated." Almost sounds like topical Estroban was tailor made for this! The topical route might be useful for a number of other supplements as well.
 
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tigerlily96

tigerlily96

Member
Joined
Sep 26, 2012
Messages
57
Location
kent
I didn't know anything about PBC, but looking it up on wikipedia, I see that it's an "autoimmune" disease of the liver. Seeing this, I would be veeeeeery skeptical of an iron infusion. If your liver isn't working correctly, I would think the last thing you would want is an infusion of a problematic heavy metal.

While your iron and ferritin markers seem very low, how are your hemoglobin numbers? What about UIBC, Unbound Iron Binding Capacity?

Here is a random thought- maybe this liver condition is the result of your body being unable to produce the standard iron binding proteins, like ferritin, transferrin, and lactoferrin. As a result, your liver is sequestering all free iron that comes to it through the bloodstream. This could have led to liver damage, and the "autoimmune" condition, which falls in line with what Peat thinks about autoimmune conditions. Honestly, I have no idea, but that seems like a possibility.

I would certainly avoid an iron infusion or injection until you have the UIBC test done. If that number is low, I think the iron infusion would probably just make things worse. If hemoglobin is above 12.5, I don't know if there would be any upside to an infusion, despite your low iron numbers, anyway. You can buy lactoferrin (bound and unbound with iron) and ferritin as supplements, that may be something to look into.

Lastly, I would check out Iron Blog and look in the deficeincy, boost your ferritin, and out of balance sections, and see if anyone has dealt with this before, and what helped and what didn't.
Can you believe the doctor will only test ferritin and Haemoglobin! And yes that's how I felt about the iron infusion I'm glad you agree. It says my Haemoglobin is 109g estimation.
 
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tigerlily96

tigerlily96

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Joined
Sep 26, 2012
Messages
57
Location
kent
Looking over the Treatments on Wikipedia, a couple things jumped out at me.

First- "To relieve itching caused by bile acids in circulation, which would normally be removed by the liver, cholestyramine (a bile acid sequestrant) may be prescribed to absorb bile acids in the gut and be eliminated, rather than re-enter the blood stream. Alternative agents include stanozolol, naltrexone and rifampicin.[35][36][38]" Naltrexone seems to be very popular and well tolerated in people with autoimmune conditions. Also, I wonder if some dose/combo of activated charcoal/cascara/emodin would have a similar effect, and maybe even help the liver heal itself or get working again.

Second- "Patients with PBC have poor lipid-dependent absorption of Vitamins A, D, E, K.[43] Appropriate supplementation is recommended when bilirubin is elevated." Almost sounds like topical Estroban was tailor made for this! The topical route might be useful for a number of other supplements as well.
Yea I don't get the itching...yet! I wonder how my fat soluble vitamins are but I only get tested for D, as I suffer from alopecia would have been good to know the rest. Got scared in the past of vitamin e used unique E topically had such a bad reaction. I use charcoal now again if I eat too many salicylates.
 

golder

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May 10, 2018
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What about normal iron and low ferritin? Just got this back from my blood test and would appreciate some insight :)
 

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