Thalassemia Patients and Friends
Discussion Forums => Ferriscan® => Topic started by: WendyW on June 06, 2012, 03:00:33 AM
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Hi Everyone.
Many thanks to Andy for providing a FerriScan board.
FerriScan is a non-invasive R2-MRI service for measuring liver iron overload that many of you may already be familiar with. It is becoming more widely available and has largely taken over from liver biopsy in some parts of the world. If anyone has any questions regarding FerriScan or its availability please send them my way.
Our website www.ferriscan.com (http://www.ferriscan.com) has a lot of information you may find useful as a starting point.
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Welcome Wendy! We are very happy to have such a great resource made available.
Members do not hesitate to ask your questions about monitoring liver iron concentration.
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Hi WendyW
My T2* Score
Heart Severe= 7.1
Liver Severe= 370
Dharmesh
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At what age do they usually start this? My daughter will be 2 on August 5th and we are meeting with the doctors to discuss her chelation. We go to the Childrens Hospital of Philadelphia
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Hi JV
Two years old is fine for FerriScan, although it is very likely your daughter would need to be anaesthetised. Patients don't need to do any breath-holds for this technique , but they do need to lie very still for the 10-minute scan time. CHoP are very experienced with FerriScan so the staff will know just what to do. Hope all goes well with your meeting with the doctor.
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Thanks Wendy..will let you know what happens
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On the topic of the prospect of putting fearful little people through MRI machines, I just wanted to share with you this link about some wonderful creativity than has transformed scanners at University of Pittsbrugh Medical Center.. http://www.healthymagination.com/stories/pediatric-adventures/
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Hi Wendy,
My daugther is scheduled to have her third ferriscan in September 2012 at sickkids, Toronto. She had her previous two ferriscans in 2010 and 2011. The results were very favourable, however, my understanding is that the programs used in measuring the LIC through ferriscan machines is designed for adults. When it comes to children, the program needs to be adjusted to 'ESTIMATE' the LIC, it is not a perfect score.
Please advise.
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Hi there
Thanks for the question. I'm happy to assure you that there is no difference at all in the way that LIC is calculated from FerriScan image data between adults and children. The calculation of LIC is performed by highly trained and experienced analysts at our central facility and the high degree of accuracy in the LIC obtained is exactly the same for all patients regardless of age and size. The calibration curve used for this calculation has been validated on both adult and pediatric patients down to three years old, so you can continue to have confidence in your daughter's FerriScan results.
I hope her positive trend continues in September.
All the best
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Thanks for the info.
Appreciate it...
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Hi Wendy
I need to get my FerriScan done and I am from India. According to the site, the scan is also done in Dubai and in 2 Hospitals. I have my sister there and she says that they dont do it there - Thats what she was told when she went there.
Can you help me with this as I can just manage to go to Dubai for the scan and its not yet available in India.
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In India,
MRI for Cardiac and Liver Iron Assessement (T2*MRI) is done for Thalassemia Protocol at various centres in delhi, mumbai and ahmedabad.
Liver iron also gets measured by this MRI.
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Hi
I am looking for FerriScan and not T2* MRI. Ferriscan is a more accurate way of measuring the dry weight of iron in the liver.
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Ok.
All the best
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Thanks :)
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Thanks :)
Hi Simran,
do let us know if you find any ferriscan center in India.
-P.
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Dear Pratik,
Ferriscan is not available in India but we have a good option of T2*MRI measuring accurately Cardiac and Liver Iron at an affordable price
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Was this first started sometime in the '80's at Brookhaven National Lab in NY?
-Jean Rose
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Ferriscan was developed by Australian physicist, Tim St Pierre. I don't know if he was involved at Brookhaven, but he told me he did spend some time at the University of Rochester in upstate New York.
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Hi.. i just want to know where ferrisccan is done in India... ?? I want the centres where ferriscan can be done in india ???
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Ferriscan is no longer done in India.
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Ferriscan is no longer done in India.
Was it done earlier? If so, why it got closed? (Assuming from your reply "no longer").
Regards,
-P.
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Formerly, it was done in Delhi. I think it is no longer offered due to the cost involved.
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I have a question about my Ferriscan results. I'm not sure how to interpret them.
Off and on over the past 10 years, I have been on oral and intravenous iron to treat iron deficiency anemia.
When I was diagnosed with one gene deletion/ thal trait, my symptoms were severe enough to need several blood transfusions. I had over 40 units in about 2 years. Right now, my levels have been stable for three months.
I had an MRI of my liver a couple of months ago, and at the end of the page of results it said:
Impression:
Diffuse hepatic iron overload and hepatomegaly. No focal hepatic
abnormalities.
Addendum Begins
FerriScan liver iron concentration report based on transverse R2
relaxation rate provided by Resonance Health Analysis Service Pty Ltd:
Average liver iron concentration: 8.7 mg / g of dry tissue ( 155
mmol / kg of dry tissue).
What does this mean? Will I need chelation therapy soon? Thanks for your help!
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A level above 7 requires chelation to correct. Iron load will not correct itself on its own. Exjade may be necessary, especially if further transfusions become necessary. Talk to your doctor. According to the Standards of Care Guidelines for Thalassemia,
> 7,000 μg/g > 2,500 ng/mL Intensive chelation
http://content.resonancehealth.com/000180.pdf
1.8 Upper 95% of normal
3.2 Suggested lower limit of optimal range for LICs for chelation therapy in transfusional
iron loading
7.0 Suggested upper limit of optimal range for LICs for transfusional loading and threshold
for increased risk of iron-induced complications
15 Threshold for greatly increased risk for cardiac disease and early death in patients with
transfusional iron overload
Have you had the DNA test? Iron does not seem to have helped at all and only adds to the iron load from the transfusions. Investigating reasons other than iron would make sense, and some non-deletional forms of alpha thal can cause problems when only one gene is affected. Has folate deficiency been ruled out? Has the possibility of internal bleeding been investigated? It would seem prudent to investigate and rule in or out other possibilities besides iron. It doesn't make sense to prescribe iron when the LIC is already above the high end of safe.
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Thanks for your reply Andy!
I have had extensive testing of my stomach and intestines to rule out internal bleeding. They found scarring consistent with prior ulcer disease. Based on my last bone marrow test, one possible reason for the severity of my symptoms is chronic inflamation.
When I spoke with Dr. Giardina about testing to look for more specific alpha thal mutations or deletions, she told me that the number of variations is huge and that my treatment would probably be the same regardless: ongoing blood transfusions.
I agree that chelation makes sense at this point, along with stopping the iron altogether. The packed and irradiated (I think that's what they're called) red blood cells work for two, and sometimes three weeks. The vitamins and drinking tea/coffee seem to help. (I take folic acid also) After so many transfusions of iron and blood, I am actually suprised that the liver iron concentration isn't higher!
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Hi,
Just got my son's first ferriscan results . He is 7 years old and has been transfused since he was 6 months old and been on exjade since he was two years old.
T2* liver 15.6 ms
R2* 64.1Hz
LIC 1.34mg/g
T2* heart 36.6 ms
R2* 27.3Hz
MIC 0.56 mg/g
Zahra
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Zahra,
He's doing quite well. How is his growth?
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Thank you Andy. He is 7 years old 23.5 kg and 122 cm. Thats the 50th centile in growth charts.
Zahra