Hemochromatosis and Autoimmune Conditions

[Drazen]

Here are my blood test results received today with the ferritin tested separately last week:

Test Description Result Range Units
Iron, Serum 10,8 11-32 umol/L
UIBC 39 25-54 umol/L
Iron Saturation 20 %

Test Description Result Range Units
Ferritin, Serum 106,5 20-250 ng/mL

Erythrocytes 4,46 4,34-5,72 x10 12/L
Hemoglobin 137 L 138-175 g/L
Hematocrit 0,445 0,415-0,530 L/L
MCV 99,8 H 83,0-97,2 fL
MCH 30,8 27,4-33,9 pg
MCHC 308 L 320-345 g/L

Cholesterol 281,8 mg/dL
HDL 61,7 mg/dL
LDL 196,9 mg/dL
Triglycerides 46,3 mg/dL

Looks like my serum iron is low and mcv/mchc are out of range. Also ferritin should be lower. Any help with this results is welcomed, I will re-read this thread again. Going to donate blood soon and start with the calcium disodium 750mg EDTA chelation - three days per week in the morning plus ALA and evening supplementation with minerals and vitamins and then check my ferritin level next month.

 

[Gaby]

Looks like my serum iron is low and mcv/mchc are out of range. Also ferritin should be lower.

Hi drazen,

This could be due to lack of B12 vitamin. I will add a B-complex vitamins into the mix.

 

[Stoneboss]

Just had another blood test and got the results today. I donated blood for the third time (I can only donate once every 56 days) about 10 days ago. Anyway, my ferritin level is now at 81.4. Just over 3 months ago, I was at 286.4, then 2 months later I was at 113.8. I'm still doing EDTA, but only did 2 cycles (of three consecutive days) in the last 56 days between blood donations. I'm thinking of doing the same thing this round and get another blood test after the next donation at the end of August to see where I'm at. If I end up between 40 and 50, I may have to consider stopping taking EDTA so that I don't get any lower for my ferritin level. Have to wait and see I guess. Otherwise, things are looking good. :)

 

[Drazen]

Looks like my serum iron is low and mcv/mchc are out of range. Also ferritin should be lower.

Hi drazen,

This could be due to lack of B12 vitamin. I will add a B-complex vitamins into the mix.

Hi Psyche,

I'm already taking this one _http://www.thorne.com/Products/Vitamins/Multi_Bs/prd~B112.jsp for last 6 months, one capsule every other day. Maybe I should take it every day?

 

[Alana]

Though my ferritin/saturation levels are normal, my husband's are close to 500/60 respectively! He was able to get a phlebotomy prescription from his doctor for once a month, but we also ordered some EDTA, and it arrived yesterday. So we are starting our rounds today. Will do 3 days with EDTA and 4 off, to begin with and see how it goes. My husband is going on July 11th for more blood tests, and we will see then what difference there will be in his iron/ferritin/saturation levels.

After two donations of 300 ml and 500 ml respectively, and 3 rounds of EDTA, my husband's ferritin levels dropped to 288 as the new iron panel results showed yesterday!
He did one more round of EDTA after that (which we will continue, 3 days a week on, four days off for the time being and later more sparingly) and donated 500 ml of blood yesterday too, so it might have gone lower still, but we will know next month for sure, when he goes for more blood tests.

So, like others found out, decanting and EDTA work well together
I am now curious about the activated charcoal as well, it might good to try it out at some point, maybe for maintenance a couple of times a month, and/or when it's not easy to get hold of more EDTA.

 

[Gaby]

Hi Psyche,

I'm already taking this one _http://www.thorne.com/Products/Vitamins/Multi_Bs/prd~B112.jsp for last 6 months, one capsule every other day. Maybe I should take it every day?

What I would do is to take a sublingual form when the bottle above finishes. There are B12 plus folate sublingual supplements. It is just in case you have a lowered digestive absorption of the vitamins, plus the sublingual forms acts faster and more effectively.

Those who cannot absorb B vitamins from the gut for whatever reason, take it either in sublingual format or by injection. Yeah, the former sounds better. So you can experiment with the sublingual version and then get tested again down the road to see if it made a difference.

It could be that you just need more B vitamins, in that case you can ask to have B vitamin levels added into your next lab test panel. Maybe it will clarify things better.

 

[Drazen]

Hi Psyche,

I'm already taking this one _http://www.thorne.com/Products/Vitamins/Multi_Bs/prd~B112.jsp for last 6 months, one capsule every other day. Maybe I should take it every day?

What I would do is to take a sublingual form when the bottle above finishes. There are B12 plus folate sublingual supplements. It is just in case you have a lowered digestive absorption of the vitamins, plus the sublingual forms acts faster and more effectively.

Those who cannot absorb B vitamins from the gut for whatever reason, take it either in sublingual format or by injection. Yeah, the former sounds better. So you can experiment with the sublingual version and then get tested again down the road to see if it made a difference.

It could be that you just need more B vitamins, in that case you can ask to have B vitamin levels added into your next lab test panel. Maybe it will clarify things better.

I will search for the sublingual form, thanks! :)

 

[nicklebleu]

Just had another blood test and got the results today. I donated blood for the third time (I can only donate once every 56 days) about 10 days ago. Anyway, my ferritin level is now at 81.4. Just over 3 months ago, I was at 286.4, then 2 months later I was at 113.8. I'm still doing EDTA, but only did 2 cycles (of three consecutive days) in the last 56 days between blood donations. I'm thinking of doing the same thing this round and get another blood test after the next donation at the end of August to see where I'm at. If I end up between 40 and 50, I may have to consider stopping taking EDTA so that I don't get any lower for my ferritin level. Have to wait and see I guess. Otherwise, things are looking good. :)

Instead of stopping EDTA - which certainly has beneficial effects way beyond iron - you might consider continue it but at the same time reintroduce vitamin C, which effectively increases iron absorption. Over time you might find a balance between EDTA and vitamin C which holds you ferritine levels in balance, with the occasional blood donation if the ferritin starts to rise again.

I personally would even consider a low dose iron replacement if all else failed to be able to continue taking oral EDTA, however I also think that a trace mineral panel should be obtained in regular intervals just to make sure that you don't get deficient or oversubstitute.

 

[Stoneboss]

Just had another blood test and got the results today. I donated blood for the third time (I can only donate once every 56 days) about 10 days ago. Anyway, my ferritin level is now at 81.4. Just over 3 months ago, I was at 286.4, then 2 months later I was at 113.8. I'm still doing EDTA, but only did 2 cycles (of three consecutive days) in the last 56 days between blood donations. I'm thinking of doing the same thing this round and get another blood test after the next donation at the end of August to see where I'm at. If I end up between 40 and 50, I may have to consider stopping taking EDTA so that I don't get any lower for my ferritin level. Have to wait and see I guess. Otherwise, things are looking good. :)

Instead of stopping EDTA - which certainly has beneficial effects way beyond iron - you might consider continue it but at the same time reintroduce vitamin C, which effectively increases iron absorption. Over time you might find a balance between EDTA and vitamin C which holds you ferritine levels in balance, with the occasional blood donation if the ferritin starts to rise again.

I personally would even consider a low dose iron replacement if all else failed to be able to continue taking oral EDTA, however I also think that a trace mineral panel should be obtained in regular intervals just to make sure that you don't get deficient or oversubstitute.

Thanks nicklebleu, that's good advice, especially being able to reintroduce vitamin C which from what I have learned from this forum is very important. I would like to start with vitamin C now, but should I maybe wait until after the next blood donation and see where I'm at with my ferritin level?

 

[nicklebleu]

Just had another blood test and got the results today. I donated blood for the third time (I can only donate once every 56 days) about 10 days ago. Anyway, my ferritin level is now at 81.4. Just over 3 months ago, I was at 286.4, then 2 months later I was at 113.8. I'm still doing EDTA, but only did 2 cycles (of three consecutive days) in the last 56 days between blood donations. I'm thinking of doing the same thing this round and get another blood test after the next donation at the end of August to see where I'm at. If I end up between 40 and 50, I may have to consider stopping taking EDTA so that I don't get any lower for my ferritin level. Have to wait and see I guess. Otherwise, things are looking good. :)

Instead of stopping EDTA - which certainly has beneficial effects way beyond iron - you might consider continue it but at the same time reintroduce vitamin C, which effectively increases iron absorption. Over time you might find a balance between EDTA and vitamin C which holds you ferritine levels in balance, with the occasional blood donation if the ferritin starts to rise again.

I personally would even consider a low dose iron replacement if all else failed to be able to continue taking oral EDTA, however I also think that a trace mineral panel should be obtained in regular intervals just to make sure that you don't get deficient or oversubstitute.

Thanks nicklebleu, that's good advice, especially being able to reintroduce vitamin C which from what I have learned from this forum is very important. I would like to start with vitamin C now, but should I maybe wait until after the next blood donation and see where I'm at with my ferritin level?

I would probably wait until the next iron panel has been taken - you don't want to become iron deficient.

 

[Stoneboss]

Just had another blood test and got the results today. I donated blood for the third time (I can only donate once every 56 days) about 10 days ago. Anyway, my ferritin level is now at 81.4. Just over 3 months ago, I was at 286.4, then 2 months later I was at 113.8. I'm still doing EDTA, but only did 2 cycles (of three consecutive days) in the last 56 days between blood donations. I'm thinking of doing the same thing this round and get another blood test after the next donation at the end of August to see where I'm at. If I end up between 40 and 50, I may have to consider stopping taking EDTA so that I don't get any lower for my ferritin level. Have to wait and see I guess. Otherwise, things are looking good. :)

Instead of stopping EDTA - which certainly has beneficial effects way beyond iron - you might consider continue it but at the same time reintroduce vitamin C, which effectively increases iron absorption. Over time you might find a balance between EDTA and vitamin C which holds you ferritine levels in balance, with the occasional blood donation if the ferritin starts to rise again.

I personally would even consider a low dose iron replacement if all else failed to be able to continue taking oral EDTA, however I also think that a trace mineral panel should be obtained in regular intervals just to make sure that you don't get deficient or oversubstitute.

Thanks nicklebleu, that's good advice, especially being able to reintroduce vitamin C which from what I have learned from this forum is very important. I would like to start with vitamin C now, but should I maybe wait until after the next blood donation and see where I'm at with my ferritin level?

I would probably wait until the next iron panel has been taken - you don't want to become iron deficient.

I'm not sure I understand. If I started with vitamin C now, would I not be risking a rise in iron, not a deficiency?

 

[nicklebleu]

Just had another blood test and got the results today. I donated blood for the third time (I can only donate once every 56 days) about 10 days ago. Anyway, my ferritin level is now at 81.4. Just over 3 months ago, I was at 286.4, then 2 months later I was at 113.8. I'm still doing EDTA, but only did 2 cycles (of three consecutive days) in the last 56 days between blood donations. I'm thinking of doing the same thing this round and get another blood test after the next donation at the end of August to see where I'm at. If I end up between 40 and 50, I may have to consider stopping taking EDTA so that I don't get any lower for my ferritin level. Have to wait and see I guess. Otherwise, things are looking good. :)

Instead of stopping EDTA - which certainly has beneficial effects way beyond iron - you might consider continue it but at the same time reintroduce vitamin C, which effectively increases iron absorption. Over time you might find a balance between EDTA and vitamin C which holds you ferritine levels in balance, with the occasional blood donation if the ferritin starts to rise again.

I personally would even consider a low dose iron replacement if all else failed to be able to continue taking oral EDTA, however I also think that a trace mineral panel should be obtained in regular intervals just to make sure that you don't get deficient or oversubstitute.

Thanks nicklebleu, that's good advice, especially being able to reintroduce vitamin C which from what I have learned from this forum is very important. I would like to start with vitamin C now, but should I maybe wait until after the next blood donation and see where I'm at with my ferritin level?

I would probably wait until the next iron panel has been taken - you don't want to become iron deficient.

I'm not sure I understand. If I started with vitamin C now, would I not be risking a rise in iron, not a deficiency?

The problem is that optimal ferritin levels (around 50) are quite close to deficiency levels (< 30). So it's a narrow path to thread between enough iron, too much and not enough iron. But in general it is safer to err on the side of slightly too high than slightly too low, because as soon as you drop below the lower threshold your hemoglobin will start to fall.

Does that make any sense?

 

[Stoneboss]

Just had another blood test and got the results today. I donated blood for the third time (I can only donate once every 56 days) about 10 days ago. Anyway, my ferritin level is now at 81.4. Just over 3 months ago, I was at 286.4, then 2 months later I was at 113.8. I'm still doing EDTA, but only did 2 cycles (of three consecutive days) in the last 56 days between blood donations. I'm thinking of doing the same thing this round and get another blood test after the next donation at the end of August to see where I'm at. If I end up between 40 and 50, I may have to consider stopping taking EDTA so that I don't get any lower for my ferritin level. Have to wait and see I guess. Otherwise, things are looking good. :)

Instead of stopping EDTA - which certainly has beneficial effects way beyond iron - you might consider continue it but at the same time reintroduce vitamin C, which effectively increases iron absorption. Over time you might find a balance between EDTA and vitamin C which holds you ferritine levels in balance, with the occasional blood donation if the ferritin starts to rise again.

I personally would even consider a low dose iron replacement if all else failed to be able to continue taking oral EDTA, however I also think that a trace mineral panel should be obtained in regular intervals just to make sure that you don't get deficient or oversubstitute.

Thanks nicklebleu, that's good advice, especially being able to reintroduce vitamin C which from what I have learned from this forum is very important. I would like to start with vitamin C now, but should I maybe wait until after the next blood donation and see where I'm at with my ferritin level?

I would probably wait until the next iron panel has been taken - you don't want to become iron deficient.

I'm not sure I understand. If I started with vitamin C now, would I not be risking a rise in iron, not a deficiency?

The problem is that optimal ferritin levels (around 50) are quite close to deficiency levels (< 30). So it's a narrow path to thread between enough iron, too much and not enough iron. But in general it is safer to err on the side of slightly too high than slightly too low, because as soon as you drop below the lower threshold your hemoglobin will start to fall.

Does that make any sense?

It does... thanks.

 

[Jacques]

I finally got my results last Thursday:

TESTS RESULT UNITS REFERENCE INTERVAL
Iron Bind.Cap.(TIBC) 62 umol/L 45 - 80
Ferritin 24 ug/L 24 - 336
Iron, Serum 22 umol/L 12 - 31
Iron Saturation 0,35 0,20 - 0,50

The ferritin is just on the inferior limit line.

 

[Gaby]

I finally got my results last Thursday:

TESTS RESULT UNITS REFERENCE INTERVAL
Iron Bind.Cap.(TIBC) 62 umol/L 45 - 80
Ferritin 24 ug/L 24 - 336
Iron, Serum 22 umol/L 12 - 31
Iron Saturation 0,35 0,20 - 0,50

The ferritin is just on the inferior limit line.

It is good :)