Discussion Forums > Iron Chelation Corner
Thalassemia and iron overload
Bigg:
Hi there from Poland.
I am new member here, so I have many questions about thal.
Actually I got the test results today.
Here they are:
A2 hemoglobin: 5.15 % (normal range: 1.9-3.5)
Fetal hemoglobin = 1.3 % (normal range: below 1%)
Hemoglobin electrophoresis is due in one week.
Based on these results I assume I have Beta Thal. Based on morphology and other symptoms I guess it is the minor, not the intermediate.
I went to the hematologist today. It was professor in paid healthcare (you have to wait three months to get to hematologist in public healthcare). And he proved he was good for nothing...
As most doctors I met so far...
Now the explanation, why I post in this particular forum and why I was so angry with this doctor...
I was diagnosed about year ago that I have so called fat oxidation disorder. You just can't burn fats in muscles. This is genetic disorder - one of the enzymes that burn fat is missing. This causes accumulation of harmful by-products (they are free radicals) from incomplete fat oxidation cycle. The cell has to get rid of these free radicals.
One of the official reccomendations in this disorder is: "Do not eat red meat. It contains iron and iron is a free radical, which has to be taken care of in the same way as with the harmful by-products.".
That rang a bell. I always had elevated serum iron level. This was frequently disregarded by many doctors, while I was still seeking diagnosis for this fatty oxidation disorder.
Now one thing led to another and I ended up with thal diagnosis too.
Other tests results:
Iron: 177 ug/dl (normal: 50-120) (this used to be three times higher than mean normal value, ie. 250)
TIBC: 484 ug/dl (normal: 250-450)
Ferritin: 128 ng/ml (normal: 30-400).
I explained to the doctor that iron that high may have detrimental effects on me, but he said it is not possible anyway (as if he knew about my disorder...).
He argued that the only thing that counts in iron overload is elevated ferritin (which is normal in my case), so if I do not have ferritin elevated, then I do not have iron overload. Explaining that in my case iron level is that what counts did not help...
When I came back home, I found this (http://www.emedicine.com/PED/topic2229.htm):
For example, patients with β thalassemia intermedia who are not receiving blood transfusions have lower ferritin levels than those with β thalassemia major who are receiving regular transfusion regimens, despite a similar iron overload. In the latter group, hepcidin allows recycling of the iron from the macrophages, releasing high amounts of ferritin. In patients with β thalassemia intermedia, in whom the macrophages are depleted despite iron overload, lower amounts of ferritin are released, resulting in a lower ferritin level.
So it looks like you can have iron overload and still not have ferritin level elevated.
Also, if I am heterozygous for one of the hemochromatosis genes, I may be accumulating iron even more quickly, because it is already elevated.
Summing up: oversensitivity to iron, elevated iron level due to thalassemia and it looks like I have to be my own doctor.
What do I do now?
What test should I do in order to confirm that this higher iron level is harmful for me?
Maybe TAS (Total Antioxidant Status)?
What other tests can I do to confirm thal? I guess I could do genetic testing.
What drugs can I use to lower iron level? (I know home remedies - green tea and resveratrol)
I will have to pay for these tests, but I can afford most of them (well with difficulty, but what can you do), so this is not a factor here.
I am sure that some of the answers to these questions were already given in this and the other forums. I will try to browse through these answers.
Last, but not least, the symptoms.
Symptoms of fatty oxidation disorder: muscle pain.
Symptoms that I associate with iron overload:
- joint pain
- severe musous membrane dryness
- cold intolerance
- paresthesias
So this has to be it, because I could not find any other condition that could cause all these symptoms for many years now.
Thanks for all the answers.
Andy Battaglia:
Hi Bigg,
Your HbA2 and HbF levels both do indicate thalassemia minor. Your iron levels are all around the high end of normal, but as you said, these readings may not accurately reflect your iron load. This can be determined through liver scan or biopsy. Even in transfusing patients, iron is not adequately measured by ferritin tests alone. These tests are used more for comparison from test to test, rather than as a final word on iron load. I will give an example. A dear friend of mine in Germany has had excellent care for thalassemia and has faithfully used chelating drugs for many years. Her ferritin tests have always been very good. Yet, recently she was diagnosed with iron overload in her heart. There was never any indication in her ferritin tests that she had any iron problem. She is currently undergoing aggressive combination iron chelation to reverse this problem. Too many factors affect serum ferritin results and they do not tell how much iron is bound in tissue and organs. A liver MRI or biopsy can confirm whether or not you have developed any iron overloading. Do you have any symptoms of iron overloading? Have you noticed any change in skin tone? Any reduction in heart function? Anything that indicates iron may be a problem?
Even without any serious iron overload, the damage iron radicals can cause should not be taken lightly, as they have been implicated as contributors to cancer. You mentioned green tea but I would also suggest the supplement IP6, also known as phytic acid or inositol hexaphosphate. It is a member of the B complex family and is found in the bran of grains and also every cell in your body. It is a natural iron chelator and also a powerful antioxidant. I would also suggest you investigate the use of the supplement, L-carnitine, which helps to break down fats. In addition, a low fat diet can be of help (in my opinion, far more help than lazy doctors can be). You probably should also consider finding a new doctor who actually will make an attempt to understand your condition.
Thal minor does seem to exacerbate other problems, so it may be adding to your symptoms. Finding a doctor who understands both health issues may be difficult, but it is not impossible to find doctors who are willing to listen and learn. Yours appears to not be interested in learning anything.
Bigg:
Thank you for the reply, Andy.
It confirmed, what I have read here and there in scientific papers, but it is hard though to put it all together and draw conclusions.
About ferritin levels not reflecting iron load in body - can ferritin be *that* low as mine and I'd still have iron overload? How low was your friend's ferritin?
This is kind of stupid question of course because everybody is different, but I just need to know a number, so I could tell my doctors, that this is really possible.
An example of such a case (low ferritin level, but still iron overload) with numbers would be helpful (anyone out there... ?).
>Do you have any symptoms of iron overloading?
That is a good question. Usually I don't feel well, but it is hard to distinguish between symptoms from iron overload and fatty oxidation disorder :grin. However it is established that with a proper treatment (diet and drugs) you can have normal life, without any symptoms and pain.
My doctors for metabolic diseases and I implemented such a treatment, and it did not bring expected effects on me.
So I started looking for the cause (of course my doctors disaproved and told me that I have to cope)... and it looks like I found it.
This has to be it, because I can't see any other irregularities in my tests (and I did almost any possible test, well, at least half of the tests from the hospital's list). 7 MRIs, but none of them of liver...
Perhaps the symptoms are not caused directly by iron overload, only thallassemia itself. I see 4 possible mechanisms:
- hypoxia (which causes another disturbances in fat&glucose metabolism, lactic acid buildup -> pain)
- inability to produce hem in cells other than erythrocytes (don't know if this is possible, but hem takes part in many matabolic reactions)
- excess erytropoetin (have to investigate on that)
- overall stress on the body
These still need a lot of investigation...
About possible overload symptoms, these are as I mentioned above:
- joint pain
- severe musous membrane dryness
- cold intolerance
- paresthesias
And I just rememberd
- glucose intolerance (3 results around 105 when normal range is 60-100, I guess that is a pattern)
>Have you noticed any change in skin tone?
Now that I think of it, many people tell me that my skin under eyes is brown, my face is yellow. Hmm...
My mother has brown rings in her eyes. Can it be a symptom for her (she has similar blood morphology as I have, so...)?
>Any reduction in heart function?
About 2 years ago palpitations started... Quite frequently (1 a day?), they last for 10 seconds.
About IP6.
Does it chelate iron only from the GI (gastro... something) tract (not allowing iron to be absorbed into body) , or it chelates from the whole body (so it actively removes iron from the body) ?
I read yesterday about IP-6, and the link
http://www.webvitamins.com/Nutrient.aspx?id=963
in this thread:
http://www.thalassemiapatientsandfriends.com/index.php?topic=653.0
says that it only works in the GI tract.
IP-6 would be beneficial for me in another way - it provides phophor(ylate) groups to the muscles, so they can work more efficiently.
Also this short chain fatty acid butyrate which is used to increase fetal hemoglobin would be beneficial for me in two ways - fetal hemoglobin increase and I can probably burn it without any problem.
I am already on carnitine and a low fat diet.
So, now I have a few ideas of tests, that I could do:
- TAS (don't know if it has any diagnostic value...)
- spleen ultrasound
- genetic testing for thallassemia (is the gene HBB right for the testing, or is there another gene?)
- other tests for thallassemia, if I find any. Fortunately I made friends with one of the lab technicians in hematology center, and she has already told me more than this hematologist doctor. Unfortunately I can't find any guide about the diagnostic path, i.e. which tests should be made based on previous results.
- Liver biopsy (seems unavoidable, at least to keep peace of mind, though it will be hard to make it happen without doctors' approval)
After that I will be trying to start treatment:
- Wheat grass (unfortunately looks like I will have to grow it myself :dunno)
- IP6
- Resveratrol
- folic acid (can deficiency of other B vitamins be also a "cause" (well, it is not a real cause) for thallassemia?)
- low dose butyrate (if I can get any...)
And we'll see what happens.
I was and am a little overwhelmed by all this, but this site gives some hope...
Thanks for that.
Manal:
Hi Bigg and welcome to the site
--- Quote ---About ferritin levels not reflecting iron load in body - can ferritin be *that* low as mine and I'd still have iron overload? How low was your friend's ferritin
--- End quote ---
Please check what Professor Ali Taher said about your question in this link
http://www.thalassemiapatientsandfriends.com/index.php?topic=1702.msg14154#new
hope this answers your question, good luck
manal
Bigg:
Thanks, Manal.
That is exactly what I needed to confirm my suspicions.
It means that you may have your ferritin level lowered twice or even more (1200/500 = 2.4) than it would show if it was a real indicator of iron overload...
I read some posts and I see that liver biopsy is "no good". Looks like I have to take a leave of absense and find me FerriScan abroad. They do not do that in Poland. They do not even do genetic testing on a regular basis for thal (only for scientific research). How pathetic is this? So, despite my efforts, I am helpless (and frustrated of course).
Does anybody know the price of FerriScan in Great Britain, Germany, Italy or any other country? (they will not refund it in Poland, I'm sure).
Where would be the best place to go in these countries, if I decide to go?
I was also looking for SQUIDs in Poland, but I can't find any.
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