Hemochromatosis and Autoimmune Conditions

[Gaby]

I not sure if I should be donating blood anymore, or at least for a while. Back in early April of 2013, I took a blood test which showed my ferritin level at 286.4 (this was about two weeks after donating blood). Since then, I've been donating blood every two months, and my ferritin levels have decreased dramatically. My last donation was on February 27, 2014. This time I felt physically weak, (especially in my legs), for about two weeks. I went for another blood test in mid March and my ferritin level was at 31.

I have to wonder if my high ferritin levels was because of inflammation, and not because of high iron levels. I quit alcohol completely in January 2013, and I suspect that my high ferritin levels was due to inflammation caused by my abuse of alcohol over the years. Or, maybe it was a combination of both, inflammation and high iron?

You cannot determine iron overload from ferritin alone. Ferritin is also a marker of inflammation. That is why you need TIBC, transferrin, iron and ferritin. This was discussed in this thread, but still it is good to hear that you have healthier levels of ferritin and are fighting inflammation :)

 

[Stoneboss]

Thank you Gaby. I realize that you can't determine iron overload by ferritin levels alone. The problem is that no doctor here will give me a requisition for a complete hematology panel because they don't think I have an iron overload issue. I was only going by how I felt after the last blood donation (weakness for about two weeks, which never happened before). However, a year ago in May, I did see a Naturopath and paid to get a blood panel done. At that time my ferritin was about 150. The test results were: TIBC: 59 umol/L, iron: 10 umol/L, saturation: 17%. I think that my iron levels were pretty well ok? Yet my ferritin was still quite high. That's why I'm thinking that in this case, my high ferritin had more to do with inflammation than high iron. Then again, I could be totally wrong about this. Maybe I should pay to get another full hematology panel done, so I would know for sure?

 

[Gaby]

Thank you Gaby. I realize that you can't determine iron overload by ferritin levels alone. The problem is that no doctor here will give me a requisition for a complete hematology panel because they don't think I have an iron overload issue. I was only going by how I felt after the last blood donation (weakness for about two weeks, which never happened before). However, a year ago in May, I did see a Naturopath and paid to get a blood panel done. At that time my ferritin was about 150. The test results were: TIBC: 59 umol/L, iron: 10 umol/L, saturation: 17%. I think that my iron levels were pretty well ok? Yet my ferritin was still quite high. That's why I'm thinking that in this case, my high ferritin had more to do with inflammation than high iron. Then again, I could be totally wrong about this. Maybe I should pay to get another full hematology panel done, so I would know for sure?

Yeah, well the saturation at 17% looks pretty good. Actually, a bit low... Normal range is 25-35%. So comparing that with your hemoglobin and hematocrit, you get a better idea. Well, at least you are in a recovery path

 

[Serendipity]

I've only done my ferritin tests last week, and in retrospect I think I payed with my health for waiting and not acting before. I managed to get papers needed for doing the iron profile test as far back as September last year, and all I had to do was to take the blood test. Instead, I fell under the spell of general law. Few days after, countrywide strike of doctors began, and lasted for more than a month (still shouldn't haven been an excuse to find a way to get tested), and afterwards I all but forgot about it.

The months passed by, and I assumed my paper for doing the test (sorry, I don't know the exact English word) became outdated, and I couldn't imagine how could I get the new papers from my doctor, when she was more than reluctant to write them the first time around. 'Luckily', I started developing health problems that led me back to my doctor where I found out that, contrary to my assumption, my papers for doing the blood test weren't outdated, and in the same time the health issues prompted me to start thinking and asking question, and that led me to remember this thread, which led me to think that my new health problems could very likely be due to iron overload.

A year ago, after being on keto diet for a few months, and as I was becoming keto adapted, my energy levels, mental clarity, digestion, skin health, and general well being all improved and I thought would continue to improve. Then, 4-6 months back and maybe even before, it was all gone before I knew it, and host of new issues slowly began to emerge. Already skinny as I was/am, I continued losing weight, my energy levels became low, then there's also this weird general state of feeling plain lousy, kinda 'heavy', I'd say even inflamed, which was funny because, more than ever I was carefull of what I eat, and wasn't eating anything that was causing a reaction in me, and that was a lot of things, except saturated fat, meat, eggs, bacon and sweet potatoes.

Also, 3-4 months ago my skin started showing a clear signs that something wasn't well in my organism, and that happens almost always when that is the case. For example, during the time I had mononucleosis 6 years ago, big skin hives would appear all over my skin, and then disappear in minutes. Now, instead of hives, there is some kind of rash, or allergic reaction of some kind, and it was getting worse in past few months. Dermatologist wasn't able to give me a proper diagnosis. Same as was with hives when I had mononucleosis, this 'allergy' is placed mostly on/around my blood vessels. For example, on the front side of my forearm where there's a lot of veins. Don't know if that means anything though.

EDIT: Also I was getting sick with cold unusually often in the last 3-4 months, which was never the case for me before.

Finally, here are my results. I'm only 23, but seems that didn't prevent ferritin to get to quite a high level!

Ferritin: 402.6 ng/mL (30-233)
Serum iron: 20.51 µmol/L (11-32)
TIBC: 48.85 µmol/L (49-72)
UIBC: 28.34 µmol/L (25-54)
Transferrin saturation ~ 42%

Can't find any data on transferrin levels on my bloodwork test results. I'll go to hematologist tomorrow and see that I get some decanting prescribed.

Thanks for reading. I ask everyone who hasn't done so yet, to take the iron profile test and not make the same mistakes I made, especially if you are on keto diet which clears the leaky gut syndrome and allows for greater iron absorption.

 

[Gaby]

Finally, here are my results. I'm only 23, but seems that didn't prevent ferritin to get to quite a high level!

Ferritin: 402.6 ng/mL (30-233)
Serum iron: 20.51 µmol/L (11-32)
TIBC: 48.85 µmol/L (49-72)
UIBC: 28.34 µmol/L (25-54)
Transferrin saturation ~ 42%

That is way too high, so is the saturation. Better late than never. Imagine a few more months with those levels...

Hope you can get a weekly decanting and some screening for mutations too.

 

[Serendipity]

Finally, here are my results. I'm only 23, but seems that didn't prevent ferritin to get to quite a high level!

Ferritin: 402.6 ng/mL (30-233)
Serum iron: 20.51 µmol/L (11-32)
TIBC: 48.85 µmol/L (49-72)
UIBC: 28.34 µmol/L (25-54)
Transferrin saturation ~ 42%

That is way too high, so is the saturation. Better late than never. Imagine a few more months with those levels...

Hope you can get a weekly decanting and some screening for mutations too.

Yeah Gaby, I know. I'll do all that is necessary in order to lower my ferritin levels. Primarily decanting, and hopefully I wont have to argue with hematologist for decanting prescription. Do you really think that weekly decanting is necessary? Seems like it's so frequent, but what do I know Also, do you recommend doing EDTA protocol and if so, what schedule? I already got EDTA at home, it has been standing here for months.

Funny thing. The same day I went to test my iron profile there was organized blood donations going on at my university. I applied to give blood since I already suspected having iron overload, but they didn't let me because of my skin rash/allergy. And even since this thread was first started, I always kinda suspected I could have some iron overload going on, too bad I wasn't smart enough to act on it before. But as you say, better late then never :)

Edit: Ah prescription! That is the word for those pesky papers that doctors prescribe :)

Also, I'm not aware how is the screening for mutations done nor why. Have yet to finish reading the whole thread. Maybe hematologist will be able to prescribe it?

 

[Gaby]

Also, do you recommend doing EDTA protocol and if so, what schedule? I already got EDTA at home, it has been standing here for months.

What does the label recommends? I've heard enough people getting bad cramps, so in the end, from my side, I just tell people to follow label instructions and to not forget minerals. You could take EDTA in the evening and minerals in the morning. On the other hand, there is enough iron to chelate... You could do 1 gram twice per day on an empty stomach. Apparently, 10% of oral EDTA gets absorbed.

Make sure your minerals don't have iron.

Funny thing. The same day I went to test my iron profile there was organized blood donations going on at my university. I applied to give blood since I already suspected having iron overload, but they didn't let me because of my skin rash/allergy. And even since this thread was first started, I always kinda suspected I could have some iron overload going on, too bad I wasn't smart enough to act on it before. But as you say, better late then never :)

Edit: Ah prescription! That is the word for those pesky papers that doctors prescribe :)

Also, I'm not aware how is the screening for mutations done nor why. Have yet to finish reading the whole thread. Maybe hematologist will be able to prescribe it?

I think it depends a lot with the country. Even without considering vital information in this thread and that all health care providers should know... where I am, your levels are mandatory screening for hemochromatosis genes. At least the ones that are available for standard screening. Depending on results, possibly recommend family members for screening as well.

Regardless of mutations or not, decanting will be enormously helpful, even if it is not weekly. I don't know your Hb and Ht, but sounds like you could tolerate quite a few decantings.

Good luck with the hematologist, hope he/she is not one of those backward ones

At least you know and will take measures to decant. :)

 

[Serendipity]

What does the label recommends? I've heard enough people getting bad cramps, so in the end, from my side, I just tell people to follow label instructions and to not forget minerals. You could take EDTA in the evening and minerals in the morning. On the other hand, there is enough iron to chelate... You could do 1 gram twice per day on an empty stomach. Apparently, 10% of oral EDTA gets absorbed.


Make sure your minerals don't have iron.

It's 750 mg per capsule. The label recommends to take 1 capsule 1 to 2 times daily, on an empty stomach. So, I guess I'll just follow their advice and take one in the morning and another before second meal perhaps, and minerals in the evening? My iron free minerals are already on their way, and should arrive soon.

I think it depends a lot with the country. Even without considering vital information in this thread and that all health care providers should know... where I am, your levels are mandatory screening for hemochromatosis genes. At least the ones that are available for standard screening.

I'll consult with hematologist tomorrow and then see which course of action to follow.

Depending on results, possibly recommend family members for screening as well.

That's a great advice, I'll be sure to do that if results turn out to be positive.

Regardless of mutations or not, decanting will be enormously helpful, even if it is not weekly. I don't know your Hb and Ht, but sounds like you could tolerate quite a few decantings.

My hematologist had prescribed a lot of different blood tests to be done, so I have my Hb and Ht values, and they are 160 g/L (133-175) and 0.455 L/L (0.415-0.530) respectively, which sounds ok enough to me. Also unsurprisingly, there are many other values in my blood test results that are outside of reference interval, such as Alkaline phosphatase, which is way low (3 stars out of reference value - ***), basophils and basophils(%) which are both double in value then the higher end of the reference value (also ***), MCHC 352 g/L (320-345) (also ***), MPV 6.53 (6.80-10.40) (also ***), non - segmented granulocytes (%) 3 (0-2), and segmented granulocytes (%) 42 (44-72). :/ What do you think?

Good luck with the hematologist, hope he/she is not one of those backward ones

Thanks. I really hope I get to see the same one as before. She seems very nice and open, she even listened carefully to what I had to say, which can't be said for many doctors nowdays. I'll even recommend book "The Iron Elephant" to her.

At least you know and will take measures to decant. :)

Indeed, I was thinking the same. I'm happy cause at least now I know what's going on, so I can apply the knowledge and act accordingly, in order to protect myself and perhaps even others. My heartfelt thanks for your advices :)

 

[Gaby]

It doesn't look crazily out of range, but better let the hematologist take care of that. They have more blood tests than anything else to help them put stuff in perspective along with your symptoms and what has happened health-wise lately.

Hb and Ht does look high to me, but still reflecting iron overload...

Good luck!

 

[Serendipity]

It doesn't look crazily out of range, but better let the hematologist take care of that. They have more blood tests than anything else to help them put stuff in perspective along with your symptoms and what has happened health-wise lately.

Hb and Ht does look high to me, but still reflecting iron overload...

Good luck!

Thank you! That's a relief :)

 

[Serendipity]

I went to see a hematologist this morning and returned disappointed. This was different doctor and unlike the young doctor that I saw last time, it was obvious from the start that her cup was full. She wouldn't hear of prescribing a decanting, but instead she gave me a long list of varied further tests to do. She said it's too early to tell if this is hemochromatosis and also that this level of ferritin isn't that high for decanting to be necessary, and there's no need to diminish my health by doing so. Go figure. She also said that only way to diagnose hemochromatosis was by (where I jumped in and said genetic testing, but she said no) liver biopsy!

I described my symptoms to her, starting from weight loss, skin rash, almost constant mild headaches lately, lack of energy, trouble falling asleep lately, struggle with breathing while trying to fall asleep lately, fatigue, etc.. She asked my about my diet and whether I smoke or not. I didn't want to be honest in stupid way so I just said I eat mostly meat and some vegetables and smoke just a few cigarettes a day. She asked why I don't eat cereals and I said because of sensitivity to gluten, to which she replied that there are gluten free cereals that I should eat. She then wrote in anamnesis that patient's diet is relatively orderly even though it's high in meat. Go figure.

I soon realized there's no point in further arguing with her, so I just let her do her job, ask more questions, do some standard tests and write her conclusions which are as follows: The patient has increased serum ferritin, without deviations in other related parameters, and it's necessary to widen the interpretation (meaning further tests): CRP, coagulogram, creatinine, urea, urine, CEA, ca19.9, psa, hbsAg, anti HCV, ABS, lung RTG + profile, EKG, abdominal ultrasound.

What am I to do next? If I go and try to donate blood, I'm afraid they won't let me when they see the bumps/rash on my skin. I'll do all the tests, because it can't hurt to do so, and in the mean time I'll try to find out if private doctor can or would do the blood letting. I'll also do EDTA protocol, once my minerals arrive. She did mention EDTA as a treatment for hemochromatosis, but was completely against decanting, which is no wonder, since she was totally clueless about danger of iron overload issue that book "The Iron Elephant" talks about.

I'm appointed to return with test results in a month, and it will be probably back to my first hematologist, if she returns.

 

[Gaby]

Yuk, cup is full doesn't even cover it...

I'll save my energy and look for a second opinion and/or a way to decant privately. I'm sorry that you put hopes into this specialist.

 

[Serendipity]

Yuk, cup is full doesn't even cover it...

I'll save my energy and look for a second opinion and/or a way to decant privately. I'm sorry that you put hopes into this specialist.

I don't know if I'm more disappointed or angry. But, you're right, I should save my energy and look for second opinion, and that means trying my luck with private clinic, since there's pretty much nothing that I can do anymore with doctors that my health insurance covers, except do the tests, which I will because you never know what else might be going on. And wait...

And, I know that even if I return with results in a month there's hardly any chance they'll prescribe decanting, even if I sit and do nothing and let my ferritin to rise even more so they can see that something is going on. Even then, I think they probably wouldn't really see that there's need for decanting, and I'm tired of waiting already. I'm gonna call a private clinic and see if they would do decanting, but I'm not having a high hopes in them either.

At least there's EDTA, and blood donations if they let me do it.

A side note on this rash or whatever it is. It's a weird thing. When it starts to itch and bumps/rash appears, it almost feels like something, that's not supposed to be in me and my blood, is trying to get out. Same sensation like when I had similar thing going on with hives during mononucleosis. When it first appeared 4 months ago, when I would scratch myself, almost always when I would remove just the top layer of dry itchy bump, in other words dead skin, white in colour, the blood vessels would be exposed, and what left was something akin to a bleeding bite mark - the blood was coming out. In other words, there are some kind of little white granules or patches of dead skin or whatever that would itch and when I would really gently remove it, it would reach all the way to the blood vessels with bit of blood pouring out.

That's why at first I thought that maybe I was infested with some kind of parasite, so I searched about my symptoms and other people's experiences on the net. On my list of suspects were bed bugs, lice or dust mites. I searched my whole room for bed bugs, but didn't find any. Dermatologist did a test for dust mites, and didn't find any. Why I'm telling all of this? Because it's curious that the marks would resemble a bite wounds, but are not coming from the outside as I thought at first, but from the inside.

It's as if my skin has been opening up, from the inside, and this might sound crazy and probably is, but could it be that my body has been trying to find a ways to get rid of the irritant that has been accumulating in the blood, through a skin. Anyway, it's just a weird idea. It's certainly a weird 'rash'.

EDIT: Also, my skin was always in good condition before this outbreak 4 months ago, which is very out of the ordinary. Now it's extremely dry. So dry, that I have been noticing big white marks on my clothes. First I thought it's the laundry softener, but then I realized it's only on the inside of the clothes. Seems that when I scratch, dead skin cells leave white stains.

 

[Gaby]

My thinking is that maybe the iron overload left you susceptible to a parasitic infection. From the way you describe it, it could be scabies too. I would have it checked since it is been months with this. Had you tried neem oil, coconut oil or anything?

 

[LQB]

It's as if my skin has been opening up, from the inside, and this might sound crazy and probably is, but could it be that my body has been trying to find a ways to get rid of the irritant that has been accumulating in the blood, through a skin. Anyway, it's just a weird idea. It's certainly a weird 'rash'.

On the idea that there is something in the blood that your body is trying to remove - I think I would try ALA + NAC (ALA = alpha lipoic acid, NAC = N-Acetyl cysteine) 2-3X per day and see if that does anything. I might also try some external coconut oil on the rash sites.