Hemochromatosis and Autoimmune Conditions

[Miracle]

Recently I've had some heart problems which I posted about under the Heart problems - advice appreciated thread, but since Gaby suggested that it may be related to Iron Ferratin overload, I am posting the continuation of my saga here. Short summary, Afib popped up out of nowhere two weeks ago, it was pretty intense and scary at moments, but never life threatening. Intensity waxed and waned on a day to day basis. It was always the worst when I lied down for bed. Donating a pint of blood was the only thing that help me, however it was short lived. Afib came back last night rather intensely so I drove my self to the hospital again seeing as though I couldn't sleep at all and my heart's beats where way off.

This time however, I got the correct Iron test:

Troponin I: <0.012ng/ml
Iron, Total: 71 mcg/dl
Iron Binding Capacity, Total (CALC): 207 mcg/ml
% Saturation (TBC) 34%
Ferritin: 208.0ng/ml
Transferrin: 148mg/dL
D-Dimer Quantitative: <215 ng/ml FEU

Note that these numbers are post donating a pint of blood, and many many blood tests in a one week span. Per Gaby's article that Breo kindly shared with me:

Some researchers suggest that ferritin should fall between 20-80 ng/ml, with an ideal range being 40-60 ng/ml. If you are above those levels, but less than 150, consider donating at the blood bank. You can only benefit and at the same time, your blood will potentially go to someone who needs it more.

So, my ferratin levels are still high even after all the blood I've "Decanted" this week. Being the cheeky bugger that I am, I convinced the nurse who discharged me that he had previously taken off my blood catheter. So I left the hospital with it still in my vein and well taped to my arm. Seemed like a clever way to decant more blood this week to me

 

[Chu]

So, my ferratin levels are still high even after all the blood I've "Decanted" this week. Being the cheeky bugger that I am, I convinced the nurse who discharged me that he had previously taken off my blood catheter. So I left the hospital with it still in my vein and well taped to my arm. Seemed like a clever way to decant more blood this week to me

It's ferritin, not ferratin.

I am by no means an expert, and others will correct me if I'm wrong, but having seen other people's values, I don't think that 200 is too high. It's higher than ideal, yes, and giving blood is good, but some members of my family had it at 1000, to give you an idea. Also, what I read, FWIW, is that you would lose about 30 or 40 points for each blood donation, so you can assume that 240 was roughly your previous value.

But did you get any other diagnosis or treatment from the hospital? Or the electrocardiogram/cardiologist visit? That sounds a bit scary, and you are young. Hopefully you'll soon know the cause and can fix the problem easily. Keep us posted!

 

[Miracle]

Good to know, thank you. Perhaps ferritin is not the culprit then?

Unfortunately, no other diagnosis at the hospital. The only advise I got was to stop drinking coffee and go see your practitioner to figure out what is wrong. Lately, I only drink one cup a day and I did stop that, but I didn't notice any difference. Frankly, instead of seeing a practitioner, since at this point since I have passed every blood test, x-ray, and 3 separate ECGs, I'm inclined more to go see an acupuncturist first.

 

[Gaby]

The saturation is a good indication along with ferritin. In your case, it's in the high end: 34%. With this donation, it would be hopefully closer to 30% or less. That's good enough. If I remember correctly, it was your high hemoglobin and hematocrit that gave it away. Perhaps you have the advantage of using all your iron more effectively thanks to health measures you've taken. Still, Hb and Ht in the high range is usually a sign that a decanting any now and then is beneficial. Men who donate blood have less cardiovascular events.

 

[JeanneT]

I have recently had blood work and looks like I have high numbers for both cholesterol and ferritin. My PA is not thinking the ferritin is overload but a result of inflammation. She is centering on the cholesterol issue for now. She is suggesting I take Ezitimibe as I have refused statins. I think she said I could take red yeast rice with that? I am confused because I think these products work on different organs and wonder if that is safe. I am also concerned after reading most of this thread, that my high ferritin is very concerning. She did not think giving blood would make it lower. In New York one has to have permission from a doctor to give blood if over the age of 76, which I am, but she will give me a slip if I press her for it, I am sure.

Here are the numbers:

Ferritin: 341
Iron: 87
Total iron binding capacity, calculated: 300
TIBC: 29
Unsaturated iron binding capacity: 212.5


LDL:182
HDL: 66
Total: 274
Triglycerides: 143
A1C: 5.9

I know I have to do better with diet, exercise and supplements and will do that. I also have osteoarthritis in my knees, back and hips so it has often been torturous to move the way I know will help. I am tired of feeling old and weak and depressed so any advice is appreciated before I make decisions and take action on her suggestions. thank you

 

[Mrs. Peel]

Ferritin: 341
Iron: 87
Total iron binding capacity, calculated: 300
TIBC: 29
Unsaturated iron binding capacity: 212.5


LDL:182
HDL: 66
Total: 274
Triglycerides: 143

My ferritin levels have been around the same as yours for years now, they get retested every 6 months and maybe go down 25 or 30 points and then go back up. I believe it is from inflammation also. It doesn't even phase me anymore. I asked my partner's oncologist in the Oncology and Hematology Department about it one time and he didn't seem concerned and also said it's probably from inflammation. Not that information is good mind you, just didn't want you to panic.

My total cholesterol is about the same as yours also, actually a bit higher. My doc plugged all my numbers into a model that considers a bunch of other risk factors and told me my risk of heart disease is very low so she doesn't push the statins. I have heard of people taking red yeast rice though.

 

[Gaby]

I think red yeast rice is a good option that could help lower the inflammation in the cholesterol too. Triglycerides should go down with better dietary choices. One important marker to determine iron load in the body is transferrin saturation or iron saturation.

 

[Lilou]

@JeanneT , I'd be inclined to refuse the Ezitimibe. The doctor was pushing my mother to take something to lower cholesterol prior to her hip replacement, even though her total cholesterol was only 209. She took it for 4 days before I stopped it. She exhibited a marked change in her mental status - real spaced out. She returned to normal in a day or two after discontinuing it. So I don't advise it from our experience with it.

 

[JeanneT]

I think red yeast rice is a good option that could help lower the inflammation in the cholesterol too. Triglycerides should go down with better dietary choices. One important marker to determine iron load in the body is transferrin saturation or iron saturation.

thanks, Gaby. what do you think about the other drug, Ezitimibe with it? She wants me to try it also. She is the first health practitioner I have worked with who admits I have free will and is trying to honor my hesitance with the statins. Another blood test will be done in 6 months and I am hoping to see improvement, but will ask for the transferrin saturation.

 

[JeanneT]

I failed to mention that I do have some blockage in one of the arteries. It is 40 per cent. I also just had an ultrasound done on the carotid and it is clear. I think they are nervous that I am not on statins and clearly there is inflammation.

 

[Lilou]

I failed to mention that I do have some blockage in one of the arteries. It is 40 per cent. I also just had an ultrasound done on the carotid and it is clear. I think they are nervous that I am not on statins and clearly there is inflammation.

You'd probably do better to take nattokinase/serrapeptase for the blockage. Solaray has an enteric coated combination available. You could also take Kyolic (aged garlic). These things slowly dissolve blockages. Cholesterol medicine will not dissolve a blockage and may not even prevent it from getting worse, IMO.

For the ferritin, maybe your doctor would prescribe phlebotomy for 1/2 pint instead of the full pint as is typical. You'll know more after having saturation levels checked.

 

[Lilou]

You should also request a high sensitivity C-reactive protein blood test. That will measure just how much inflammation you have. @JeanneT

 

[JeanneT]

You'd probably do better to take nattokinase/serrapeptase for the blockage. Solaray has an enteric coated combination available. You could also take Kyolic (aged garlic). These things slowly dissolve blockages. Cholesterol medicine will not dissolve a blockage and may not even prevent it from getting worse, IMO.

For the ferritin, maybe your doctor would prescribe phlebotomy for 1/2 pint instead of the full pint as is typical. You'll know more after having saturation levels checked.

thank you, Lilou! Funny, I just started taking the nattokinase but will order the duo you suggest and aged garlic, too. the c-reactive test sounds good too. I appreciate the advice.

 

[Gaby]

thanks, Gaby. what do you think about the other drug, Ezitimibe with it? She wants me to try it also. She is the first health practitioner I have worked with who admits I have free will and is trying to honor my hesitance with the statins. Another blood test will be done in 6 months and I am hoping to see improvement, but will ask for the transferrin saturation.

Ezetime is as bad as statin drugs or worse. After a certain age, most people have plaque of some sort or another. Exercise, diet and supplements is the way to go though.