Questions on iron level in liver

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Offline LoriM

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Questions on iron level in liver
« on: July 15, 2009, 05:31:53 PM »
11 months ago, my daughter (almost three years old at the time) had a liver biopsy.  I asked and asked for the results and was told that if it were unexpected or abnormal the doctor would let me know.  Yesterday I saw a different doctor who mentioned that her biopsy showed her iron level at 20,000.  He said they would have expected it to be about 3,000 given her age.  Now, that seems really, really high to me and has me a little nervous.  At what level does the liver start becoming damaged?  Any suggestions, hints or input would be greatly appreciated! 

She didn't tolerate the Exjade and we will be starting the other chelation soon... sorry, starts with a D.  I am not thrilled with that, but guess I am going to have to get used to needles! 

Lori
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Offline Tedi

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Re: Questions on iron level in liver
« Reply #1 on: July 15, 2009, 06:12:27 PM »
Hi LoriM,
 I think its pretty much but liver biopsy is subective because of the place where they took a matterial.
I think the best method is MRI.

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Offline nice friend

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Re: Questions on iron level in liver
« Reply #2 on: July 15, 2009, 06:23:48 PM »
Hi LoriM,
i dont think that your almost 4 year old daughter's Liver iron could be 20,000 , its a really high level and as foar i think nobody can reach this level in the age of 4 or 5 years, i m doubtful abt wat your daughter's new doctor has said to you, i dont know wat other members of the forum think abt it, and please wait for their views , m not good at all this kind of stuff so please wait for moderators Admin's and other senior member's reply  and peep visiting bcoze i know they will reply ASAP they got some research regarding to your query ..  ....

best Regards
Umair

Edited : wat i wana say is that , a child couldn't b that much iron overloaded in jus 3  or 4 years of age .. i guess i m right abt it ...
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

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Umair

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Offline Lena

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Re: Questions on iron level in liver
« Reply #3 on: July 15, 2009, 06:31:06 PM »
I also think it is too much for a 4-year old. An MRI will show better.
How often is she transfused?


Lena.
« Last Edit: July 15, 2009, 06:36:42 PM by lena »

Re: Questions on iron level in liver
« Reply #4 on: July 15, 2009, 07:20:58 PM »
Hi LoriM,
 I think its pretty much but liver biopsy is subective because of the place where they took a matterial.
I think the best method is MRI.

This is correct, liver biopsy results are dependent on the sample taken. Iron store in the liver is not uniform. Best way to find the iron accumulation in the liver is to do ferriscan.

I agree with other members that 20,000 is not a reasonable number and their is a great amount of doubt in this number.
Regards.

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Offline Andy Battaglia

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Re: Questions on iron level in liver
« Reply #5 on: July 15, 2009, 08:15:32 PM »
Please have a Ferriscan done. Check below and see if they are still doing Ferriscan at this location, as it was on a clinical trial basis. If not, we can find a location in the US.

Wayne State University School of Medicine    HUH-MR Center Concourse, 3990 John R St    Detroit    Michigan    +1 313 745 1391
Andy

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Offline Andy Battaglia

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Re: Questions on iron level in liver
« Reply #6 on: July 16, 2009, 02:42:02 AM »
Lori,

I also doubt that your daughter's iron could be so high at her age. If your daughter can lay still for 20 minutes or so, she could have a liver scan which gives a complete view of the iron deposits in the liver. I would not subject her to another liver biopsy if she can't be scanned yet, and concentrate on chelation. A liver biopsy is almost like playing pin the tail on the donkey, when a patient is so young, because it is likely there will not be significant areas of iron deposits, but if you do hit one with the biopsy, it can make the liver look much worse than it really is.  She will have to use desferal for the time being but I would also suggest you try Exjade again when she is a bit older. What was her problem with using Exjade? Many of the problems can be alleviated with modifications to Exjade administration. We can also expect to see another oral chelator, Ferriprox approved in the US in the next couple years, so at least one more option will be available. There are also several iron chelators in various stages of trials, so it is expected that the number of chelators available will double in the next ten years. So don't necessarily feel that she will have to remain on desferal. I would also recommend that you give her the natural supplement, IP6 (easily available from mail order supplement companies). It is a natural iron chelator that will remove some iron and even more importantly, it is a powerful antioxidant that can help prevent iron damage to the organs. Quite a few people are using it and we have heard some very good results. It's natural, made from the bran of grains like rice, and is already found in every cell in the body. Many patients have noted a change in skin tone within weeks of starting it. This shows a decrease in iron level, as the skin color will noticeably darken as iron builds up.
Andy

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Offline Zaini

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Re: Questions on iron level in liver
« Reply #7 on: July 16, 2009, 04:55:54 AM »
Hi Lori,

I agree with what has been said,your daughter is too young to have this kind of iron overload,may i ask what are her ferritin levels? Are you using all the supplements suggested in our supplements section?I remember you mentioning that Wei was having head aches while she was on exjade,what dose were you giving her? Whats her weight and did you try changing the time of medicine? I am sorry these are so many questions,but these will really help determine if she can re start exjade again and avoid Desferal needle pricks.

Good luck :) .

Zaini.
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Offline LoriM

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Re: Questions on iron level in liver
« Reply #8 on: July 19, 2009, 08:28:26 PM »
Thanks, all.  I feel better! :)  I am determined to have a good talk with our doctor and most likely will be asking to be  treated by someone else.  I just don't have much confidence in him anymore.  I want to know all I can and I feel like he would rather keep me in the dark than educate me. 

Wei is having a MRI on her liver Monday morning at the DeVos Children's Hospital in Grand Rapids, Michigan.  They are very new at this, but I am thrilled to have the technology so close.

Thanks again!  You are such a blessing!

PS:  Andy, I started her on your vitamin plan and her transfusions have been stretched from three weeks to four!
Lori
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Offline LoriM

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Ferriscan Results
« Reply #9 on: August 07, 2009, 08:57:09 PM »
Wei had her ferriscan.  She had a liver biopsy about a year ago that said her level was 20,000.  (I didn't know, nobody told me)

The results say:

1) Based on Ferriscan analysis of T2 data, average liver  iron concentration is:

31.6 mg/g dry tissue (normal range 0.17-1.8 mg/g)
564 mmol/kg dry tissue (normal range 3-33 mmol/kg)

2) Overall distribution of liver iron is homogeneously dense, except in the periportal regions.
3) The spleen is not enlarged.

I know this is bad, the doctor said this is very high and could cause damage if we don't get it down.  But how bad is it really?  She's not even four yet?

Thanks, Lori
Lori
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Offline Andy Battaglia

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Re: Questions on iron level in liver
« Reply #10 on: August 12, 2009, 02:27:39 AM »
Lori,

The liver iron levels are quite high and I suspect that Wei may have excessive iron absorption from food adding to the iron load. This was probably especially true before she was getting regular transfusions. I also suspect that she may have been given iron supplements early on. The best method for reducing iron absorption from the diet is by keeping the Hb level no lower than 9-9.5. the rate of iron absorption from food is inversely related to Hb level. The lower the HB, the higher the iron absorption rate. Is she taking IP6 yet? Drinking tea with meals can also reduce this absorption. A low iron diet is also helpful. Avoid red meat as much as possible and avoid high iron veggies like spinach.

You will need to become very regular about her chelation and desferal would be the best chelator at this point. I would suggest IV desferal if at all possible, and 6-7 days per week with desferal subcutaneous. Desferal is very effective at removing liver iron and can reduce very high levels to normal within one year with an aggressive approach to chelation. Combination chelation would work even better, using desferal along with another chelator, but I don't know if this is even possible at this point. We do expect to hear more about the Exjade/desferal combo soon and we also expect to see Ferriprox approved in the US no later than late 2010 and maybe sooner. Both of these combinations with desferal are very effective at quickly lowering the iron load.

Wei is young and it is early enough to help her before any long term damage is done. Use of antioxidant supplements can help a lot to protect her organs from damage and chelation is a must. Once her levels return to normal, her chelation program can be revised. I feel she is at an age where this is very important because both the organs and glands will be affected if this iron buildup is not reversed.
Andy

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Offline LoriM

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Re: Questions on iron level in liver
« Reply #11 on: August 12, 2009, 12:31:23 PM »
Thanks, Andy.  My goodness, what a wonderful source of information you are!

Wei is on the IP-6 and the CoQ-10 and all the other vitamins that you suggested. 

Can she be given IV Desferal when getting her blood transfusions?  I looked up IV Desferal and it appears she would need to be hospitalized.  I would be willing to do that for a few days if it would jump-start getting her numbers back to a better rate.

I will talk to the doctor about using the Desferal and maybe a lower dose of the Exjade.  We played with the timing of the Exjade and we couldn't find a time when it didn't have a negative effect on her.  Maybe a lower dosage would hellp.

When she first started her transfusions the doctor said he wanted her in the mid to upper 9s before transfustion but then refused to transfuse when she was in the mid-9s and would make us wait another week.  I asked if he had new research or what had changed and never got a clear answer as to why we could let her get lower now.  I will start pushing for more frequent transfusions.  When I asked him how we find a balance between keeping her hgb at a good level and too frequent transfusions he had no answer.

While your word is as good as gold to me, I doubt my doctor will change his way of doing things if I tell him "Andy said".  :)  Can you tell me  some of our sources so I can come to her next appointment armed and ready for battle?

Thank you so much, Andy.  Your advice and help is truly invaluable!
Blessings (and many hugs)
Lori
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Offline Andy Battaglia

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Re: Questions on iron level in liver
« Reply #12 on: August 12, 2009, 01:30:24 PM »
Hi Lori,

Here is one source.  http://www.news-medical.net/news/2007/02/14/21912.aspx

Quote
The iron loading in thalassemia depends on the volume of blood transfused and the amount accumulated from gut absorption. Gut absorption is particularly important in thalassemia intermedia, where no, or irregular, transfusions are given. In thalassemia major, increased absorption is inversely proportional to the mean post-transfusional hemoglobin."

Once the Hb is close to normal, the added iron absorption from the diet decreases dramatically. It is also important for normal bone development to keep the Hb above 9. Post transfusions should be 10-10.5 minimum to enable proper growth.

IV desferal is often given during transfusions to help reduce the amount of new iron being taken in from the transfusion. This is some help but longer periods of IV desferal are often used when the iron is at dangerous levels. I am not certain what these levels shown in the Ferriscan mean at such a young age. In an older patient, they would be cause for great alarm, but I do not know how her age and size will factor into this. Would it be possible to have the Ferriscan results reviewed by Chicago Children's (Dr Thompson)?
Andy

All we are saying is give thals a chance.

 

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