Hemochromatosis and Autoimmune Conditions

Regulattor

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FOTCM Member
Few weeks ago I've send my Father to do Ferritin level check and lo and behold his results came back with 640+ ng/mL!
That's all after four Years ago I have also send him to check for Ferritin and then result was above 400.
I gave him EDTA to chellate which he did for some time. He didn't check it again after chellation but I think that he has significantly lower it.
That was 4 Years ago and he was in mid 400 range, which today's level makes troublesome. I've send him to family practitioner with blood test
results and she told him that his Iron (Fe) level was within lab references so he should not to worry about Hemocromatosis!?! She told him that he must do another extended blood tests in order to get a full picture, but phlebotomy wasn't mentioned. He has high blood pressure, enlarged heart and high Ferritin. Quite telling. Will see what will his doctor tell him next. If nothing I would give him another EDTA treatment.
 

Laura

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This page has a little graphic (scroll down a little) that shows too high ferritin for men being 300.
https://www.medicinenet.com/ferritin_blood_test/article.htm

Mayo Clinic says 20 to 500 is normal for men.
https://www.mayoclinic.org/tests-procedures/ferritin-test/details/results/rsc-20271960
 

Mr.Cyan

The Living Force
FOTCM Member
Just to add; a couple of years ago I was having trouble with joint aches and fatigue - and when I did my ferritin test it was 300+. Since then I have donated blood 6 times in the last 2 years; and all the joint aches have gone. Each donation I made was the standard 450ml of blood (I think).

The doctor similarly told me that 300+ is the normal range for men; and refused to recommend phlebotomy - and similarly suggested extended and more detailed blood tests if I was concerned about hemochromatosis. I refused to go along.

I have not yet had a retest of my ferritin levels after the blood donations - but judging from the way my body is feeling now; and I can say that it is working, as the joint aches have not come back. During this process I did think about EDTA chelation; but as the blood donations were working, I did not try it. Hence nowadays, I work towards donating blood once every 3-4 months. Probably will check my ferritin levels again at some point next year.
 

Tiffany

A Disturbance in the Force
Aloha All!

I’m curious as to which chelator is best? IP6, EDTA, Lugol or Activated Charcoal? Also specific brands and instructions on use? 33 year old female diagnosed with HH this year as well as Auto-Immune Thyroid/Hashimotos(?) (Thyroid Peroxidase Ab: 194) with all other thyroid markers falling within normal range.

Thyroglobulin Ab: 1 / <4
TSH: 1.66 / 0.34-5.60
Free T3: 3.5 / 2.2-4.0
Free T4: 0.8 / 0.6-1.6

Have seen TWO different Hematologists and both basically scoffed at my numbers, and told me to “live my life” aka eat red meat, drink alcohol and not worry. They also both denied my request to be given an Rx for therapeutic phlebotomy making me feel as if I was being a hypochondriac! Since being diagnosed (09/2017) I have taken matters into my own hands and donated blood twice (while avoiding red meat, Vit C and limiting alcohol consumption). Ive always followed a mostly low carb diet due to bloating and digestive issues.

After two blood donations my Ferritin levels have dropped from 231 to 94

Other current values:
TIBC: 230 / 30-160
Iron: 187 / 228-428
% Transferrin Sat: 81 / 20-50

My concern is that there aren’t always blood drives available for me to donate at, and I would like to stay on top of keeping my iron levels as “controlled” as my body will allow. My other concern is it there is any reason I should not incorporate a chelator due to the Auto-immune thyroid issue? Currently taking daily selenium, zinc to support my thyroid. Any other supplements I should incorporate to support/preserve thyroid and keep hemochromatosis complications at bay (liver, joint damage)?

Any and all advice is much appreciated!!
 

Laura

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I like the EDTA for chelation, myself. But I do take a modest dose of iodine every day too.
 

Altair

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Tiffany said:
Aloha All!

I’m curious as to which chelator is best? IP6, EDTA, Lugol or Activated Charcoal? Also specific brands and instructions on use? 33 year old female diagnosed with HH this year as well as Auto-Immune Thyroid/Hashimotos(?) (Thyroid Peroxidase Ab: 194) with all other thyroid markers falling within normal range.

Thyroglobulin Ab: 1 / <4
TSH: 1.66 / 0.34-5.60
Free T3: 3.5 / 2.2-4.0
Free T4: 0.8 / 0.6-1.6

Have seen TWO different Hematologists and both basically scoffed at my numbers, and told me to “live my life” aka eat red meat, drink alcohol and not worry. They also both denied my request to be given an Rx for therapeutic phlebotomy making me feel as if I was being a hypochondriac! Since being diagnosed (09/2017) I have taken matters into my own hands and donated blood twice (while avoiding red meat, Vit C and limiting alcohol consumption). Ive always followed a mostly low carb diet due to bloating and digestive issues.

After two blood donations my Ferritin levels have dropped from 231 to 94

Other current values:
TIBC: 230 / 30-160
Iron: 187 / 228-428
% Transferrin Sat: 81 / 20-50

My concern is that there aren’t always blood drives available for me to donate at, and I would like to stay on top of keeping my iron levels as “controlled” as my body will allow. My other concern is it there is any reason I should not incorporate a chelator due to the Auto-immune thyroid issue? Currently taking daily selenium, zinc to support my thyroid. Any other supplements I should incorporate to support/preserve thyroid and keep hemochromatosis complications at bay (liver, joint damage)?

Any and all advice is much appreciated!!

Hi Tiffany,

Since this is your first post on the forum, we would appreciate it if you would post a brief intro about yourself in the Newbies section, telling us how you found this forum, how long you've been reading it and/or the SOTT page, whether or not you've read any of Laura's books yet, etc. You can find examples of introductory posts in the section of the Forum to get an idea.

I can recommend you EDTA and Lugol as well. Just take them 2-3 hours apart because EDTA can chelate iodine as well.

Activated Charcoal should not be taken regularly as far as I know since it absorbs many useful minerals as well.
 

Tiffany

A Disturbance in the Force
Altair said:
Tiffany said:
Aloha All!

I’m curious as to which chelator is best? IP6, EDTA, Lugol or Activated Charcoal? Also specific brands and instructions on use? 33 year old female diagnosed with HH this year as well as Auto-Immune Thyroid/Hashimotos(?) (Thyroid Peroxidase Ab: 194) with all other thyroid markers falling within normal range.

Thyroglobulin Ab: 1 / <4
TSH: 1.66 / 0.34-5.60
Free T3: 3.5 / 2.2-4.0
Free T4: 0.8 / 0.6-1.6

Have seen TWO different Hematologists and both basically scoffed at my numbers, and told me to “live my life” aka eat red meat, drink alcohol and not worry. They also both denied my request to be given an Rx for therapeutic phlebotomy making me feel as if I was being a hypochondriac! Since being diagnosed (09/2017) I have taken matters into my own hands and donated blood twice (while avoiding red meat, Vit C and limiting alcohol consumption). Ive always followed a mostly low carb diet due to bloating and digestive issues.

After two blood donations my Ferritin levels have dropped from 231 to 94

Other current values:
TIBC: 230 / 30-160
Iron: 187 / 228-428
% Transferrin Sat: 81 / 20-50

My concern is that there aren’t always blood drives available for me to donate at, and I would like to stay on top of keeping my iron levels as “controlled” as my body will allow. My other concern is it there is any reason I should not incorporate a chelator due to the Auto-immune thyroid issue? Currently taking daily selenium, zinc to support my thyroid. Any other supplements I should incorporate to support/preserve thyroid and keep hemochromatosis complications at bay (liver, joint damage)?

Any and all advice is much appreciated!!

Hi Tiffany,

Since this is your first post on the forum, we would appreciate it if you would post a brief intro about yourself in the Newbies section, telling us how you found this forum, how long you've been reading it and/or the SOTT page, whether or not you've read any of Laura's books yet, etc. You can find examples of introductory posts in the section of the Forum to get an idea.

I can recommend you EDTA and Lugol as well. Just take them 2-3 hours apart because EDTA can chelate iodine as well.

Activated Charcoal should not be taken regularly as far as I know since it absorbs many useful minerals as well.


Mahalo Altair for your reply! My apologies for skipping to the front of the line, and posting without properly introducing myself! It was not my intention! I am simply seeking out information and clarity where medical professionals seem to be lacking :(
 

Ellipse

The Living Force
FOTCM Member
Hi all,

My own Ferritin level is fluctuating to a great extend above the normal. However it's not catastrophic and I've a medical follow-ups. My doctor want me to have a new MRI. This is just one year after the first one revealed an above normal iron load in the body. So I'm a bit reluctant for health consideration. I'm not sure MRI is so harmless as they tell us.

So, I wonder, did some of you had the same examination and if yes, what was the treatment and the outcome after?

Thanks
 

Chu

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I personally haven't done an MRI Ellipse, but have heard that MRIs are really not that harmful, especially done once in a while.

What do you do in terms of "follow-ups"? Do you give blood often? Others will know more, but I think that what's important to check as well is the fixation rate (coefficient de saturation), because it indicates whether the iron is accumulating in your liver, or being processed just fine. FWIW, in case you haven't checked that already.
 
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Ellipse

The Living Force
FOTCM Member
Thanks Chu, I suspect too it's not that harmless, I will do a search on the Net if can find some infos in this direction. Especially if it's an hepatic RMI which require a contrast product to be injected in the body. And some of such products had been suspended (French link) because gadolinium is remaining in the brain.

One year ago my fixation rate was above normal but is now at the normal upper limit. The doctor is searching if it's an hidden hemochromatosis because the ferritin level increased regularly since 10 years.

I did not start to give blood to not distort tests results and in case of Aceruloplasminemia it's not recommended.

Aceruloplasminemia is a rare autosomal recessive disorder in which the liver can not synthesis the protein ceruloplasmin properly, which is needed to transport copper around the blood. Copper deficiency in the brain results in neurological problems that generally appear in adulthood and worsen over time.

Aceruloplasminemia has been seen worldwide, but its overall prevalence is unknown. Studies in Japan have estimated that approximately 1 in 2 million adults in this population are affected.

Aceruloplasminemia belongs to the group of genetic disorders called neurodegeneration with brain iron accumulation (NBIA).

...

The type of neurological disruption corresponds to associated regions of iron deposition in the brain and liver.[4]

The first RMI revealed I do have iron deposit in the liver. The doctor asked for genetic search but after one year, the result for one gene is still missing so she want to do a liver ultrasound exam and the new RMI.
 
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Chu

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I did not start to give blood to not distort tests results and in case of Aceruloplasminemia it's not recommended.
Any way you can know whether that's the case or not? Giving blood would bring your levels right down. If it were me, I wouldn't wait so long for the sake of the tests, since what you already know is that you have iron deposits in your liver, and that the levels keep going up.

The first RMI revealed I do have iron deposit in the liver. The doctor asked for genetic search but after one year, the result for one gene is still missing so she want to do a liver ultrasound exam and the new RMI.

That's super long for a test! Just doing a quick search, I see that you can buy a kit online, but it's quite pricey:

If that's an option for you, maybe you can accelerate the process that way? A big FWIW.
 

Ellipse

The Living Force
FOTCM Member
Thanks for the link Chu but the page does not explain what gene is tested.

One year ago, I got quickly the result for gene p.Cys282Tyr, which is negative but the doctor ask for another gene. At the moment I can't recall the one it is but for this one it seem very complicated and I don't understand why. There is only one laboratory in France which do this test. I wrote to the laboratory which told me they are waiting for the confirmation of the doctor. Perhaps it's very costly, I don't know.

I've to find back what gene it is and ask to the site you provided if it do this research.
 

Keyhole

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A quick question for any of the MDs or anyone else who has knowledge in diagnostics/hemochromatosis/hemosiderosis:


Would very low Total Iron Binding Capacity and U Iron Binding Capacity, along with high Transferrin Saturation merit the diagnosis of iron overload despite having normal ferritin and serum iron?

Here is a picture of my recent bloods: 1577782734365.png

I am confused. The way I learned to pinpoint hemochromatosis is ferritin/serum iron, along with the other markers. All of the books I have of bloodwork interpretation make no mention of normal ferritin/serum iron but low TIBC/UIBC and high TFS.


I was reading a paper which says it can indicate a functional iron overload, instead of a genetically predisposed iron overload. As per my memory, I am heterzygous for HFE, meaning that I carry a risk but that the risk is relatively minor.

Anyone got any ideas?

It seems I have some iron overload going on, but I am not sure why?
 
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