I haven't had my blood levels checked yet, I go in to the doctor next month for a check up so I will ask to have it tested then. Yesterday I did go in and donate blood just to see how I would feel afterwards. I must say that in the week leading up to this, I wasn't feeling the greatest. I was achy, and I had a constant headache and neck ache. I was also overly tired. After donating yesterday, I started feeling better soon after. Now I don't know if it was all in my head, or if I really do feel better. We will see how I continue to feel this week.
Hemochromatosis and Autoimmune Conditions
- Thread starter RedFox
- Start date
Thanks for all the information on hemochromatosis. :) I should've commented sooner, but kept getting distracted by life.
I remember a few years ago that my GP said my iron levels had been accumulating, but weren't dangerously high and so she didn't try diagnosing me. I had lab work done by another doctor roughly one year ago that didn't have a ferritin reading, but listed my TS% at 38%, so I thought hemochromatosis was worth considering in light of the info presented here.
Nowadays it's both expensive and a hassle to go to a doctor, so I donated blood last month to see whether I'd feel better or not. Unlike the last time I'd donated (before I did low-carb), I didn't feel dizzy or irritated at all. What really surprised me, though, even though it's been mentioned throughout the thread, was that my spine didn't get immediately (or at all) inflamed when I tried two different vegetables (Swiss chard and kohlrabi) within two days of the blood donation. I also felt much less sensitive to butter. Unfortunately, I think my tolerance for anything other than meat and tallow/lard decreased as the month went by.
I should've looked harder for a blood test before I donated, since my results are probably skewed, but I finally got one a week after I donated through this site that didn't require a doctor: http://www.healthcheckusa.com/Iron-Panel/46885/ (see if you have a LabCorp near you before you order anything).
Here are my results (with lab ranges in parentheses):
TIBC: 317 ug/dL (250-450)
UIBC: 240 ug/dL (150-375)
Iron, Serum: 77 ug/dL (35-155)
Iron Saturation (same as TS%): 24% (15-55)
Ferritin, Serum: 93 ng/mL (13-150)
Thankfully nothing is dangerously high OSIT, but my ferritin is still out of the 20-50 ng/mL maintenance range mentioned earlier. For now, I think I'll donate next month and retest my blood for any significant changes, while waiting for my copy of The Iron Elephant.
I remember a few years ago that my GP said my iron levels had been accumulating, but weren't dangerously high and so she didn't try diagnosing me. I had lab work done by another doctor roughly one year ago that didn't have a ferritin reading, but listed my TS% at 38%, so I thought hemochromatosis was worth considering in light of the info presented here.
Nowadays it's both expensive and a hassle to go to a doctor, so I donated blood last month to see whether I'd feel better or not. Unlike the last time I'd donated (before I did low-carb), I didn't feel dizzy or irritated at all. What really surprised me, though, even though it's been mentioned throughout the thread, was that my spine didn't get immediately (or at all) inflamed when I tried two different vegetables (Swiss chard and kohlrabi) within two days of the blood donation. I also felt much less sensitive to butter. Unfortunately, I think my tolerance for anything other than meat and tallow/lard decreased as the month went by.
I should've looked harder for a blood test before I donated, since my results are probably skewed, but I finally got one a week after I donated through this site that didn't require a doctor: http://www.healthcheckusa.com/Iron-Panel/46885/ (see if you have a LabCorp near you before you order anything).
Here are my results (with lab ranges in parentheses):
TIBC: 317 ug/dL (250-450)
UIBC: 240 ug/dL (150-375)
Iron, Serum: 77 ug/dL (35-155)
Iron Saturation (same as TS%): 24% (15-55)
Ferritin, Serum: 93 ng/mL (13-150)
Thankfully nothing is dangerously high OSIT, but my ferritin is still out of the 20-50 ng/mL maintenance range mentioned earlier. For now, I think I'll donate next month and retest my blood for any significant changes, while waiting for my copy of The Iron Elephant.
mcb
The Living Force
zlyja said:
That's pretty good. The service I found offered the same tests (also from LabCorp) but the SF had to be ordered separately, making the price a little higher. It still seems inexpensive, either way.
Yes, you certainly do want to check where LabCorp is, locally, before ordering. For me, it's like 2 miles from my house.
mcb
The Living Force
Megan said:
I finished the book and even more mental alarms are going off because of the many similarities with my lifetime of symptoms. But then I have my lab requisitions and I have an appointment in the morning for the blood draw.
I noticed that the book for the most part reflects conventional thinking about diet and nutrition, going so far as to recommend sticking to the USDA food pyramid! While the ketogenic diet might aggravate the condition in some ways (such as through eliminating grains which might otherwise reduce iron absorption), it might help in other ways such as avoiding added damage from eating toxic foods.
I wonder now about the risks to people with hemochromatosis of taking some of the supplements that we have recommended. It sounds as though titrating vitamin C might be a very bad idea (and I was doing that for a while until it just didn't feel right and I quit), and I don't know about others such as NAC and lipoic acid. I am down to only magnesium and my prescription hormones until I see the lab results.
(Some of this may have been discussed earlier, before the topic had my full attention, and I might have missed it. Sorry if I am repeating.)
It looks like the author of the Iron Elephant, Roberta Crawford Morency, got active again on the web:
_http://robertacrawfordmorency.com/
The last update was on the 4th of April (where I think the iron elephant category was created) this year and some others followed. Eventually there is a possibility to ask her if she sells an electronically version or if a new edition is planned? With "whois" is also her email address to be found, cause the blog itself doesn't has a contact field.
_http://robertacrawfordmorency.com/
The last update was on the 4th of April (where I think the iron elephant category was created) this year and some others followed. Eventually there is a possibility to ask her if she sells an electronically version or if a new edition is planned? With "whois" is also her email address to be found, cause the blog itself doesn't has a contact field.
After reading this thread, I also ordered a copy of The Iron Elephant. Still waiting, it's shipped from the US.
Last week I went to the GP to have my blood levels tested, and the results arrived on Saturday. Like zylja, I put the lab ranges in parenthesis. So far, I found it very interesting how these lab ranges vary in different countries.
Iron: 27.9 µmol/l (9.0 - 27.0)
Transferrin: 2.4 g/l (2.0 - 3.6)
Iron Saturation of Transferrin: 46% (16 - 45)
Ferritin: 131 µg/l (10 - 220)
Last week I went to the GP to have my blood levels tested, and the results arrived on Saturday. Like zylja, I put the lab ranges in parenthesis. So far, I found it very interesting how these lab ranges vary in different countries.
Iron: 27.9 µmol/l (9.0 - 27.0)
Transferrin: 2.4 g/l (2.0 - 3.6)
Iron Saturation of Transferrin: 46% (16 - 45)
Ferritin: 131 µg/l (10 - 220)
Megan said:
Indeed. That is why I brought up the topic. While going paleo and ketogenic helps with a lot of things, there appeared to be a glitch, at least for some people.
When a person is eating the standard diet, they are probably suffering from leaky gut and all the wrong things get in, but they are also suffering from malabsorption of the right things. They may be collecting too much iron and that is contributing to the conditions that they have, but the leaky gut problems also contribute. So, they change their diet and some things clear up. The gut begins to heal, and THEN iron absorption issues might begin to stand out for those who have iron overload problems either genetically or for some other reason we don't know. Then, that person thinks "Oh, paleo/keto doesn't work" or "I need more carbs" or whatever, when that is not exactly the problem.
One thing I noticed in reading the levels of iron contained in foods is that meats are not necessarily the highest in iron content and pork, in fact, is rather low. The items that have the highest iron content, aside from organ meats, are breakfast cereals! So, a person could be loading iron for years but until they go paleo or keto, the issues do not appear. As Crawford points out, you can have lower ferritin due to disease processes that are already going.
In other words, the answer is not just simple: "oh, in a few months time I accumulated a bunch of iron" because it just doesn't happen that fast. But what does seem to be happening is that, with other issues beginning to clear up, healing of the gut and so forth, the iron problem can then stand out.
And certainly, titrating vitamin C is not the thing for someone with iron absorption issues to do but I don't think that even that can raise the levels that much over a year or so. But it might be that it affects the stored iron vs the iron taken up in ferritin so that the problem is visible.
One begins to see the logic of the ancients as derived from archaeological finds: they consumed a lot of FAT over meat and spent a lot of time breaking bones open and getting out the fatty marrow. The logic of the ketogenic diet begins to make sense for those with iron overload: more fat than protein. It is also the path that kicks on the alternate system that eliminates the need for vitamin C entirely.
The damage that gluten, casein, and carbs do is quite clear. But the damage that iron overload can do was not so clear until the gluten, casein and carbs were out of the way. Plus, we have to consider epigenetics - how the parents' diet can affect the child's genes, and then how the diet of the individual can turn genes on and off.
So this is a path that must be followed with some care and intelligence. There is no "free lunch" and knowledge is the key. Strait is the gate and narrow the way.
Laura said:
This really stands out to me as being one of the keys. as I posted earlier on this thread:
Could somebody with access to scientific papers get this one?
Precipitation of iron overload and hereditary hemochromatosis after successful treatment of celiac disease
This paper is very interesting too:
http://www.wjgnet.com/1007-9327/11/3323.pdf
Of course, sometimes instead of working on fiding a cure for both CD and homochromatosis, they make it sound like it's a good thing!
http://m.medwire-news.md/41/9919/Gastroenterology/Celiac_disease_patients_protected_by_iron_overload_gene
Okay, I did call the alternative health practitioner. And also this is not so easy. She likes to know my background story, beside the moon needs to have the right light (which is next week) and after it I'm not allowed to sit in front of a computer for three days, beside not eating fat and meat after this therapy (that's the theory). Oh well... So I called a haematologist, but for her I need a referral from my doctor and actual data, that means I need to explain to my doctor why I like to go to a hematologist (or I go to the appointment without it and just explain my situation, she may or may not refuse me then, or I may pay for it). Further it means before I can decant blood at the haematologist I need to explain why and show all my data, and everything is allright according to their lab standards, just to decant some blood. It's so annoying I'm feeling not well everyday and I just like to give some blood to see how it goes and at every place I need to justify myself why I like to it.
Nonetheless I'm trying to get both the referral and an appointment at the alternative practitioner and collect as much data as possible to back everything, like what Ailén quoted before. And hope that one doctor may go with the experiment to give it a go and looking for other alternatives as well. But I'm afraid that everything I would say might gonna be against belief system of the doctor (bread is healthy, too much fat is bad, a one sided diet may cause this and so on).
And thanks Muxel for the paper and nicklebleu for the link.
Nonetheless I'm trying to get both the referral and an appointment at the alternative practitioner and collect as much data as possible to back everything, like what Ailén quoted before. And hope that one doctor may go with the experiment to give it a go and looking for other alternatives as well. But I'm afraid that everything I would say might gonna be against belief system of the doctor (bread is healthy, too much fat is bad, a one sided diet may cause this and so on).
And thanks Muxel for the paper and nicklebleu for the link.
Gawan,
I don't know, but I would probably try to go it alone, if it's so hard AND if you have a high ferritin. You mentioned that you are on the anaemic side, so I would not decant the full 500ml, but only half of that and see what happensnto your hemoglobin. The decanting parphernalia should be obtainable through someone working at a hospital, in a pinch you can purchase most of this stuff on eBay.
I am actually looking into EDTA chelation therapy more in depth and will do a separate post once I am through with it ... but this might be more appropriate in your case. I would be very surprised if one of the mainstream doctors would go along with bloodletting you.
I don't know, but I would probably try to go it alone, if it's so hard AND if you have a high ferritin. You mentioned that you are on the anaemic side, so I would not decant the full 500ml, but only half of that and see what happensnto your hemoglobin. The decanting parphernalia should be obtainable through someone working at a hospital, in a pinch you can purchase most of this stuff on eBay.
I am actually looking into EDTA chelation therapy more in depth and will do a separate post once I am through with it ... but this might be more appropriate in your case. I would be very surprised if one of the mainstream doctors would go along with bloodletting you.
Just finished The Iron Elephant, and I attempted to donate a batch today since my SI is 21% and ferritin is 192. Well, maybe that's not so bad since the SI isn't terribly high, but ferritin could definitely be lower.
Unfortunately, they only took a half-bag because I went all feeling-flushed-yet-pale when the nurse had to move the needle for the 3rd time to keep the flow going. Now my arm is a bit sore. Sheesh! Then they wanted to load me up with bags of sugar.
Let's just say that the first Desanguinification Experience was "less than optimal"... Last time I gave blood about 10 years ago, it was a cake walk!
I will note that I feel fine right now, and I also just ended Round 1 of EDTA + DMSA. Maybe the timing was not ideal for some reason? Who knows.
In any case, given that this whole desanguinification thing is rapidly becoming a seriously annoying problem, I remembered a few notes from the Iron Elephant book. Hopefully I'm not repeating anything here, but here goes:
One mentions a Dr. George Kontoghiorghes who wrote an article in the British Journal of Haematology, 1986, 62, pp 607-613. Links:
_http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.1986.tb04082.x/pdf
_http://www.ncbi.nlm.nih.gov/pubmed/3964556
...neither of which I can access! Apparently this one went through human trials in 1987 or thereabouts, but I dunno if it is available.
Then there is deferiprone, or Ferriprox in the USA, that is iffy because one doc claimed it causes hepatic fibrosis. This is the one they used in India and there was a battle to get it FDA approved - which makes me think it might actually be good, because when does the FDA ever try to protect you from things that are bad for you?
Another note: For France, the Association Hemochromatose is alive and well, still run by the same Dr. Pierre-Marie Morel:
_http://www.hemochromatose.fr/la-maladie/diagnostic.html
Apparently if one gets the genetic confirmation, one can get desanguinification prescribed. With a French doctor behind it, it might actually work for those in France. The association appears to be "partners with the Mairie of Toulouse", whatever that means...
Anyway, usually the oral chelators are ridiculously expensive according the author of The Iron Elephant, but I find it VERY hard to believe that our only solution is regular desanguinification. So, I wanted to toss the above info out there in case it provides some clues for further treatment possibilities. I find it impossible to believe that we can orally chelate most heavy metals relatively cheaply and effectively, but not iron! That just does not compute. DMSO and it's amazing and highly effective uses keep coming to mind...
Finally, the alfalfa session quote about "near tracks well worn" made me chuckle (as in "track marks" related to injecting drugs) as I sit here with a bandage around my arm and the promise of more desanguinification "adventures".
Unfortunately, they only took a half-bag because I went all feeling-flushed-yet-pale when the nurse had to move the needle for the 3rd time to keep the flow going. Now my arm is a bit sore. Sheesh! Then they wanted to load me up with bags of sugar.
Let's just say that the first Desanguinification Experience was "less than optimal"... Last time I gave blood about 10 years ago, it was a cake walk!
I will note that I feel fine right now, and I also just ended Round 1 of EDTA + DMSA. Maybe the timing was not ideal for some reason? Who knows.
In any case, given that this whole desanguinification thing is rapidly becoming a seriously annoying problem, I remembered a few notes from the Iron Elephant book. Hopefully I'm not repeating anything here, but here goes:
One mentions a Dr. George Kontoghiorghes who wrote an article in the British Journal of Haematology, 1986, 62, pp 607-613. Links:
_http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2141.1986.tb04082.x/pdf
_http://www.ncbi.nlm.nih.gov/pubmed/3964556
...neither of which I can access! Apparently this one went through human trials in 1987 or thereabouts, but I dunno if it is available.
Then there is deferiprone, or Ferriprox in the USA, that is iffy because one doc claimed it causes hepatic fibrosis. This is the one they used in India and there was a battle to get it FDA approved - which makes me think it might actually be good, because when does the FDA ever try to protect you from things that are bad for you?
Another note: For France, the Association Hemochromatose is alive and well, still run by the same Dr. Pierre-Marie Morel:
_http://www.hemochromatose.fr/la-maladie/diagnostic.html
Apparently if one gets the genetic confirmation, one can get desanguinification prescribed. With a French doctor behind it, it might actually work for those in France. The association appears to be "partners with the Mairie of Toulouse", whatever that means...
Anyway, usually the oral chelators are ridiculously expensive according the author of The Iron Elephant, but I find it VERY hard to believe that our only solution is regular desanguinification. So, I wanted to toss the above info out there in case it provides some clues for further treatment possibilities. I find it impossible to believe that we can orally chelate most heavy metals relatively cheaply and effectively, but not iron! That just does not compute. DMSO and it's amazing and highly effective uses keep coming to mind...
Finally, the alfalfa session quote about "near tracks well worn" made me chuckle (as in "track marks" related to injecting drugs) as I sit here with a bandage around my arm and the promise of more desanguinification "adventures".
I was also 'desanguinified' today - my first ever 'donation'!
It went without any hitches and I too am doing the DMSA and EDTA protcols (although my last cycle ended a few days back).
When I was tested last week, my SI was 32% and ferritin was 227, so it'll be interesting to see how (or if) that changes next time I have my blood-iron levels tested.
It went without any hitches and I too am doing the DMSA and EDTA protcols (although my last cycle ended a few days back).
When I was tested last week, my SI was 32% and ferritin was 227, so it'll be interesting to see how (or if) that changes next time I have my blood-iron levels tested.
