John in GR iron overload – natural remedy question

[patti]

John,

My MIL is doing the same thing you are in terms of trying to manage and reverse her disease naturally. I did a search on past topics and found out you were doing that also. Mom has RAEB-t with > 30% blasts. Today we found out her ferritin is 1100. The doctor told me 2000 is critical but when I pressed her she told me that didn’t mean organs start failing at 2000. I know I’ve seen others here talk about their iron being 5000 and also Neil say that it takes 10-14 yrs to experience organ failure from iron overload. We don’t want to do anything about the overload because we feel like the Desferal will compromise what we are doing naturally. Do you have any thoughts on this?

Mom is taking something called Immunical that is a high concentrated dose of immune system builders. She takes it once a day. But it has .72gms (yes, gms – not Mcgs.) of iron in it. Should she stop? Our concern is that it seems to be a good immune builder. Also, we’re reading that vitamin C is not good because it binds to the iron and keeps it in the body. Your thoughts? She’s taking 3000mg for immunity. So far, in over 9 months, she’s not had one infection (neutrophils only 400-500 the whole time) and she feels great. The doctors don’t believe her. But, she’s transfusion dependent now. Every 2-3 weeks. Not sure what we should do about the iron overload since we want to stay natural. Like I said earlier, there seems to be a conflict between when actual damage is done and these guys saying 2000 is critical.

Any suggestions or thoughts? Thanks

patti

[Suzanne]

I would check with your doctors about taking things with added iron if she is getting transfusions. After I had my two rounds of chemo and quite a few tx’s, my ferritin was at 1900 but they said they would not do anything for at least a year and would hope the body would slowly take care of the excess on its own.I have had no more transfusions and when the ferritin was measured a couple of months ago it was down to something like 1600 so it is very slowly going down. They have no plans to do anything except let my body slowly take care of it at this point. I eat a normal diet but I do try to avoid anything that has extra iron added and I certainly would not take any suppliment that had added iron unless directed to for some reason by my docs.

[patti]

Hi Suzanne,

It looks like you’re doing great! That must be a tremendous blessing! I actually avoid asking mom’s doctors anything that has to do with the natural because their response is always the same. If there wasn’t an FDA trial for something natural then it’s not worth taking. I’m really serious. They actually told us a few visits ago that we had no idea how well mom was doing in light of the disease she had and we told them we knew she was doing well and we attributed it to God’s mercy and lots of supplements. They were sure that neither of those things really mattered. Anyway, that’s why I thought I’d ask here. If no one was sure about the supplements I thought maybe someone would know about the 2000 number being “critical” vs. it taking 10yrs for organ failure for iron overload. Thanks for the input.

Patti

Patti

[Suzanne]

I have read some comments about the iron removal process. Even tho it is something that one can put up with if necessary, if there is any way to avoid it I would avoid. They are working on a more tolerable way but it has not been approved yet as far as I know and I have not seen much news about it recently. I am glad your Mother -In -Law is doing well. Others on the forum have had good results they feel suppliments have helped. I think most of us would just love to be around at that 10-14 year mark when the iron might cause a problem.

[Terri]

Patti, Bob is not tx dependant and he actually is low on Iron and takes Iron supplements, The Hemo was even giving him IV Ferratous for six weeks to try and help boost his iron. Apparently the MCV on the CBC indicates low levels. None of this has really changed his numbers, His reds are still normal and his HGB hangs in the 10s and 11s. Bob also takes many Vitamins and supplements however none of his immune support items have any extra iron except the one supplement.

I would check with the doctor since the Overload can be a problem.

Each case is different. I hope all works out

[Jimbob]

Patti,
The head pharmacologist at OHSU was kind of leary on vitamins, supplements herbs, diet, etc but has gotten much more positive latey and has even given seminars on the positve effects of various alternative and complimentary methods to help treat bone marrow diseases.
Now that I have beaten CMML, I am going back on the alternative route to treat the problems caused by the medications.

[John in GR]

Hi Patti,

Iron overload has not been a problem for me as I have not required transfusions since diagnosis four years ago except for a one week period when I was in the hospital for Sweet’s Syndrome. Accordingly, I have not studied the subject and do not consider myself to be especially knowledgeable, but know someone who is.

My friend Marla Brown has made a wonderful recovery from aplastic anemia (AA), a close cousin of MDS. Marla, who had 175 transfusions has made great progress re resolution of her iron overload problem. I will try to get some info for you from Marla. I have great respect for Marla’s knowledge. I’m sure she can provide some good info. You can find Marla’s story and mine at http://www.geocities.com/marlakins/index.html

Jimbob, it’s exciting to me to see more and more doctors giving alternative and complementary stuff some thought and consideration. My local hematologist, who a few years ago told me he didn’t believe in “that stuff” but figured I would only waste money, a few weeks ago asked me what I was doing.

I hope you all have a great weekend.

John

[uno grasshopper]

Hello Patti:

I’m Marla, John from GR’s friend. He asked me to check out your post regarding iron overload and share anything that I think might be helpful to you. First of all I’m only a fellow patient, not a doctor. I don’t have MDS, but rather have recovered naturally from Aplastic Anemia (AA), which is a condition considered a step away from MDS. Anyway, to get to the point, I was told the same thing you were about critical iron overload levels–at 2000 ferritin, it’s recommended that you do something about it. I was transfusion dependent and was trying to do everything I knew naturally to reduce or stop my ferritin from rising. I tried inositol, EDTA chelation therapy, and various seaweeds. However, my ferritin level continued to climb so that at just over 2100, I gave in to subcutaneous Desferal infusions. I decide to take the Desferal because I had to weigh my options. I had read that it took years for organ failure to occur, but why wait for that time? Organ failure doesn’t happen overnight, it’s a gradual process which starts once the iron begins to store in excess. Ten or more years down the road is when you “see” and/or “feel” the damage, not when it begins. Considering the damage and stress excess iron can cause on the body, I decided Desferal would be okay because it’s basically only a chelating agent to remove excess minerals and not a drug designed to kill or interfere with the structure or cellular functions of my cells. My personal opinion is that chelating agents such as Desferal is less intervention than taking growth hormones such as GCSF or erythropoietin. My prescription was to take the Desferal 6x a week, each infusion lasting 10hrs. I did mine at night while I slept, so that I could disconnect in the day when I was awake. However, I’m a bad patient, so when my tummy started to feel sore, I cut down and started only taking the Desferal 2x a week and during my red cell transfusions (the nurse can piggy-back a desferal line on your transfusion line so you won’t need an extra stick). At that rate, I was able to get my ferritin slightly lower at 1700 and keep it there while I was still transfusion dependent. Once I became independent of transfusions, I stopped the Desferal for one year hoping that my body would get rid of the excess iron on it’s own. Unfortunately, it only came down alittle bit in one year to 1500. So, since my hgb had recovered to almost normal levels, I began to do phlebotomies in place of the desferal–500mL, once a month for over a year. I figured that just letting the blood out is more natural than the desferal infusions. I am now within the normal range.

Regarding your supplement, I think it’s better not to take anything with iron in it. Technically, if the body is functioning normally and you have enough or excess iron, your body will reduce iron absorption from foods through the digestive tract. However, that is not always the case, and you can inadvertently load excess iron through supplements. There are various conditions which enhance iron absorption such as certain mineral imbalances, an example being a phosphorus deficiency. It’s likely that a person with a condition as serious as ours has mineral imbalances. BUT, having said that, the proof is in the pudding. If your MIL is feeling good and subsequent iron tests show that her ferritin isn’t climbing while taking the supplement, then she should be fine. But if it continued to climb, I would stop taking it.

As far as vitamin C, it is known to enhance iron absorption through the gut (that is, the iron from your foods). BUT, vit C is also known to “mobilize” stored iron into ferritin, thus allowing a chelating agent such as Desferal to pick it up and excrete it from the body. Vitamin C is very important for numerous functions in the body, so would definitely not try to limit my intake from food sources. I prefer whole food sources as opposed to bottled supplements because vitamins from foods are more bioavailable to the body. My opinion is that if you’re going to take lots of vit C, then you would do well to also have a chelating agent so that the mobilized ferritin will get bound and excreted from the body rather than just re-circulated and re-deposited somewhere else in the body.

Ferritin can be falsely elevated in the presence of inflammation or injury or improper blood sample collection. So before your MIL decides to take anything, she might want to have another ferritin test taken to make sure that number is correct. Also, at 1100 ferritin, it’s really a personal judgment call whether to start desferal or not because desferal is “less” likely to cause trouble at higher ferritin levels–that is, the lower your ferritin gets (I believe it’s somewhere around 800), the higher the chance of developing side effects from the desferal like vision and/or hearing disturbances. I have my suspicion that as the ferritin gets lower, the chelating agent is still looking for things to grab and possibly takes other needed minerals thus causing some side effects. Just my guess on that one. Best to take it when ferritin levels are high. OR another possiblity is to go easy with it. Instead of going head on with daily desferal, you might want to consider doing it once or twice a week and during transfusions to see if it maintains the ferritin at her current level. Then when she starts making her own red cells again, begin phlebotomies if her body is not excreting the excess ferritin. OR she could wait until she gets into the 2000s. I did, and I still managed to do fine.

Hope this is helpful. Take care, and good luck to you and your MIL!

Marla

[patti]

Marla and all,

Thank you for your help! Lots of helpful information. Marla, I did read your story on geocities and told my MIL about it. What a great testimony to the body healing itself! I understand what your saying about the vit. C but all of the information I read on desferal says that if you’re doing desferal treatments not to take anymore then 500mg. of vit. C because it can cause death. Is that false? Since posting my first message we’ve talked to the doctor and they wouldn’t start treatments until she were at 2000. Part of our thing for not doing the desferal is that even if everything goes really well it seems like we won’t have mom for more then another year, if we’re lucky (except I don’t believe in luck – so I’ll say blessed instead). Is that defeatest? We have a good attitude about healing, we’re also just trying to be realist. Maybe those two can’t go hand in hand.

Thank you so much again for all of the info. I so much appreciate it. Her ferritin will get checked once a month when she sees the doctor. At her next check if it goes up I will pull her off of the immunical.

[Terri]

Patti, Maybe your Mil can take a differnt Immune booster that does not contain the iron??

[uno grasshopper]

Hi Patti:

Yes, I’ve heard the recommendation to limit Vit C intake with iron overload. I believe that information came from here:
http://www.annals.org/cgi/content/full/131/6/476?maxtoshow=&HITS=10&hits=10&R
ESULTFORMAT=&fulltext=vitamin+C+%2B+iron+overload&searchid=1108642670636_1326
&stored_search=&FIRSTINDEX=0&journalcode=annintmed

Here’s a clip from it:

“In persons who have thalassemia major with iron overload, vitamin C (ascorbic
acid) can mobilize iron stored in reticuloendothelial cells, sometimes leading
to acute cardiac toxicity (1). Withdrawal of vitamin C supplementation has
been associated with improvement of left ventricular function, and vitamin C
deficiency may protect against the cardiac effects of iron overload in
patients with thalassemia major (1). In contrast, there is little published
evidence that vitamin C mobilizes large quantities of iron or induces acute
(or chronic) toxicity in hemochromatosis. Urinary iron excretion, a measure of
iron mobilization, was not increased by oral vitamin C in untreated patients
with hemochromatosis who received an infusion of desferrioxamine. Furthermore,
these patients experienced no associated adverse effects (2). In our review of
hemochromatosis management, we cited the unusual report of a 29-year-old man
who for 1 year had taken 1 g of ascorbic acid tablets daily and artificial
orange juice containing supplementary ascorbic acid. Eight days after
presentation, he died of complications of cardiomyopathy. At autopsy,
well-known complications of iron overload due to hemochromatosis, including
severe iron deposition in his myocardium, pancreas, and liver, and
micronodular cirrhosis, were discovered (3). Accordingly, the authors’
conclusion that this patient’s ingestion of large amounts of ascorbic acid
could have induced or accelerated the development of cardiomyopathy was
“speculative” (3).”

Personally, I think there is a lot of information missing in that article to come to a definite conclusion that high dose vit C would be bad in our case because first of all, we don’t have thalassemia, thus our iron storage may be slightly different. Notice the people with hemochromatosis reacted differently without the increased excretion of iron or adverse effect. Also, they didn’t specify how high their iron was to start with. Thalassemia patients can get really really high ferritin levels. I personally know of one gal with thalassemia who’s ferritin in 21,000. Another gal I know with sickle cell is up to 10,000. We are at 1,000 or 2,000–much less iron. So, is what we have enough to kill us? Keep in mind that vit C doesn’t “make more iron.” The iron is already in there. The trouble seems to be mobilizing the iron to store in the heart, thus causing the problem. Then with the 29-year-old, same thing. They didn’t say how high his ferritin or iron was. At autopsy he had iron storage in not only his heart, but in his liver and pancreas. I would assume his iron level as extremely high? They don’t tell us. Was he a thalassemia patient? What kind of vit C was he taking? Vit C is a very easy vitamin to manufacture and not all vit C supplements are made equal. There is good quality Vit C, and there is also junk vit C with toxic residues from production. (Another reason I really prefer to get my nutrients from whole foods). What other supplements was he taking? Iron supplements maybe? Multi with iron? Doesn’t tell us. The guy drank “artificial” orange juice, so what was the rest of his diet like? High in sugars, maybe? No mention of his fat intake or cholesterol level which also could potentially affect his heart. So you can see that there’s still pieces to the puzzle which are missing. What I have decided to do is be a bit cautious and get as many nutrients from whole food sources to avoid “over dosing.” It would be difficult to overdose on Vit C through eating foods. I try to focus on digestive health because I realize that you can eat the best foods in the world, but if you’re not digesting the foods properly, then you will become nutrient deficient anyway. Many drugs interfere with our digestive health.

Not sure if I gave you an answer here, but hopefully gave you some info to help you decide what you want to do regarding Vit C.

Take care,

Marla

[John in GR]

Hi Patti,

I am writing re your statement that even if things go really well we won’t have mom for more than another year.

On the one hand I sense that you and your mil are at peace re the prospect of your mother’s death. That certainly is commendable.

As to when and how your mil dies, however, that is in God’s hands. There are many, many people on this forum (myself included) who have exceeded the life expectancy that was provided at diagnosis. Personally, my plans are long term, understanding that God’s plan could be different.

The tendency is to mark time. Why bother buying tools or clothes if you’re going to be dead.

On the other hand, what if God gives your mil another 15-20 years?

It is a balance between being realistic and squeezing all you can out of the time you have been allotted.

I’m still buying tools. I hope I get to use them. In any case, I’m in God’s hands.

John

[patti]

Marla,

I just saw your post today. I’m going to print it for mom. I think I will suggest she eat foods high in Vit. C and forgo the supplements. She and I agree with you. Whole foods are the way to go when possible. Thank you so much for your input! You have no idea how much it has helped me (us)!

Blessings,

patti

[patti]

John,

I understand what you’re saying. I guess for us (me) there are so many things ahead that I’m trying to prepare myself both mentally, emotionally and spiritually to take them on. Mom and are born again christians and as she has so aptly stated, she has no fear of going home to the Lord. It’s just that she has always prayed to be able to care for her daughter until her daughter’s passing. Her desire to stay here is for her daughter more then for herself.

On my side of things, I’m forcing myself to see beyond the healing to what I will face eventually, and that’s the care of my 47 yr old SIL. She has the capacity of about a 4-6 yr old. But I’m a homeschooling mom of 3 small kids (7 and under) and also the secretary for my husband’s home business. So for me, the Lord has slowly been showing me that mom’s time is short. Not so much giving me a date – but letting me know that I need to prepare my heart to become a mom to another “child.” Does that make sense? We still pray for healing and look for God to take care of all things, I’m just a planner and trying to at least prepare (if that’s possible) for the change my family is about to go through. How will I do school with my little ones? How will I handle the business stuff? How will I take time for SIL’s own grief? So much. And I guess I’m guilty of feeling like the Lord isn’t choosing to heal mom and her disease is getting so progressively worse it’s hard to see anything else. And yet I believe sometimes God takes us to the brink before He heals. So, maybe I have lots of work to do spiritually.

Glad to know there are other believers here.

Patti

[John in GR]

You have my prayers for peace and strength to you and your family for what lies ahead. What occurs will not exceed your ability to cope. See Mt. 6:25-34

John

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