Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: Andy Battaglia on July 24, 2008, 07:46:51 AM
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Splenomegaly (enlarged spleen) is common in thalassemia major and intermedia due to the high rate of hemolysis (red blood cell destruction). This takes place because the spleen sees the defective red cells of the thalassemic as deficient and the transfused red cells as invaders (much the same as with host vs graft disease) and removes them from circulation. One should note that although natural made normal red cells live for about 120 days, transfused cells last a matter of weeks, at the most. Antibody reactions can also exacerbate this problem. This hyperactivity of the spleen results in splenomegaly due to the amount of blood cells that are filtered out and also by a physical increase in size of the spleen so it can handle what it sees as a heavy load of blood cells that need to be filtered out. What has been observed by us in thalassemia minors, apparently has not been recorded by the medical establishment which persists in the notion that thalassemia trait has no symptoms. This actually defies logic, as a great number of minors would be predicted to have health issues by the very nature of their own blood. While beta + minors may see few if any symptoms, beta - or 0 minors will have a less than adequate hemoglobin level because one of their hemoglobin genes is producing little, if any beta globin, which does result in lower hemoglobin levels and also a surplus of alpha globin, which can also add to the problems by adding "clutter" to the bloodstream. As has been noted, splenomegaly is more common in pregnant minors and in some cases can present a great danger, as it did with Courtenay. However, splenomegaly is not confined to pregnant women among thal minors. Many minors report this, even if the doctors have chosen to ignore the pattern. And of course, we know we have heard from hundreds of thal minors in this group who report other health issues, in addition to enlarged spleen. Thalassemia minor does cause problems and it is not rare, as the literature tries to portray it. This is very frustrating for patients who do have serious quality of life issues because of thal minor but can't get any doctor to admit that there is a connection.
For many years, the response to splenomegaly was splenectomy. In recent years, this has begun to change, as patients who have had their spleen removed are observed over many years, and the problems created by the splenectomy become more apparent. Chief among these is the tendency towards clotting issues which can lead to stroke. New therapies are needed to counter the hyperactive spleen but as of yet, little if anything has been suggested to patients. So, I am going to go out on a limb and make some suggestions. All thalassemics, minor through major should be on a program of supplementation and one goal of this should be to create a healthier circulatory system with healthier red blood cells. Folic acid, natural vitamin E, IP6 (phytic acid), vitamin D and magnesium are all necessary for a healthier circulatory system. Healthier red cells are less likely to be destroyed by the spleen and efforts to improve their health should be taken. I think some emphasis needs to be put on magnesium. A recent study showed that patients with higher levels of magnesium had fewer gallstones. See http://www.thalassemiapatientsandfriends.com/index.php?topic=1593.msg13119#msg13119
Researchers may not be aware why this happens but I have a theory. Magnesium improves the health of the walls of red blood cells. One of the main goals of the spleen is removing the weak red cells and the strength of the cellular wall is a factor in whether or not red cells are filtered by the spleen. The more red cells that are destroyed, the higher the amount of bilirubin which leads to gallstones. While researchers may want to focus on one organ as though it exists in a vacuum, in reality, the body is a complex organism with all aspects interconnected. A researcher may be able to separate the gallbladder for the purpose of a study, but our bodies can't and don't. It is all interconnected. I do believe that the patient can take some actions to counter the hyperactivity of the spleen and that this has to begin with providing the over stressed body with sufficient nutrients to counter these stresses and to reduce the amount of red blood cells being filtered by the spleen.
As patients, are you willing to be dismissed by your doctors as hypochondriacs and complainers or are you going to be willing to be proactive and take the steps necessary to optimize your health? Since the doctors are almost universally unwilling to address the health issues of thal minors, it leaves the minors with little choice but to take action on their own and do what they can to improve their health.
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Thanks a lot Andy,
For so much information and support,right now i am taking evion for vitamin E,but it says dl alpha which i remember you once told is not natural vitamin E,I'll try to search one which is natural.
ZAINI.
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Hi Andy,
This is very informative post, all should take notes and try to comply of what has been said.
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I have been reading about phytic acid and it was advised that it should not be taken if you are looking to absorb minerals such as magnesium, calcium and iron. Now, I understand Iron is bad for you but what about the magnesium I'm taking? Should I take the phytic acid at night? or vice versa.
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Phytic acid (IP6) is an iron chelator. However, it mostly removes excess in order to protect cells. It in no way endangers your normal mineral content. My wife has taken it for over 8 years, after having cancer, has never taken iron supplements during this period, and her Hb is 15. It does not remove needed minerals. I highly recommend this supplement that is already present everywhere in your body.
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I am wondering if the spleen can temporarily increase in size during increased hemolysis in thal minors?
My hb is usually 9, but this time it dropped to 8, and i used to feel a sort of discomfort on the left side lower abdomen. Now hb is improving above 9, and that discomfort seems to have stopped.
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Yes, spleen size varies with the rate of hemolysis. The discomfort is caused by the pressure created by the increased size.
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Hi Andy,
I have Alpha Thalassemia Hb H Desease. My spleen size is about 15cm x5.3cm.
1. The size can be decrease or it will be bigger and bigger as time goes on?
2. I only take folic acid and calcium daily. is it enough? i have never been transfuse as my Hb is about 9.
3. during abdomen ultrasound check-up last month, it was found that i have mild fatty liver. does this occurs because of the spleen? or there something else?
thanks.
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This was very interesting material to read! I suspected thal minors could face this problem somewhere down the line.
I read that certain plant pigments such as indicaxanthin found in beets, prickly pear cactus and red dragonfruit could "fortify" RBCs and their membranes making them more stable. (http://en.wikipedia.org/wiki/Indicaxanthin)
I don't see many discussions in the forum on this antioxidant pigment but I read about an experiment where they mixed it with RBCs and later exposed the RBCs to oxidative stress. They found the pigment in sufficient concentrations inside the cells and they were much more stable against oxidative stress and other destructive factors (they survived much longer than non-treated controls).
I started eating alot of red beet, although I never liked it before. The problem is that red beet is rich in oxalic acid which produces kidney stones. I'm not sure what happens with the antioxidants when you make salad using salt, vinegar and olive oil but I hope they don't deactivate.
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I'm an alpha thal trait and I was a vegetarian for all my life turning in a vegan couple years ago.
Couple years ago I started to detox from any animal products I have eaten as a vegetarian.also started a form of Gerson Thereapy mix with completely veganism. My first year was wonderful I lost my baby fat from previous pregnancies and was doing wonderfully until my doc keep me in iron tablets for one year . Well I don't know if the events I had at least once a month of extranuous abdominal pain and also bloating was just the iron I think it was. But I wonder if my hemolysis events were happening at this time also.What I think is that my efforts with detox using enemas and gallbladder flushes save me from something worst.
With all these effort I still have sludge on my gallbladder confirmed by a MRI. Also something that I wonder is my hematologist never did an electrophoresis but as soon I did a MRI she ask for a DNA test for alpha .Once she never keep good communication with me maybe I'll never know why she ask this test or even the DNA. I really wonder if they saw something on my spleen.
Danny.H
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Iron can contribute to the death of red blood cells when it is present in excess. I was prescribed iron after two surgeries and my Hb down to 8. I could not tolerate it at all and stopped quickly, relying on vegetarian diet alone to raise my level. It took some time to get back above 14, but I found iron supplements are not necessarily necessary. The more I learn about the causes of disease and the implication of iron in cancer and diabetes, the more I think iron supplements should be avoided by most people. iron also does not easily leave the body, so if a continuing excess is suspected, natural chelators like IP6, wheatgrass and green tea extract should be employed.
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:smiley Hello, I want to ask a question? My spleen is enlarged. So how can i reduce spleen size. Spleen size is near 20 cm. Please reply to this post. :thankyou
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I have been told that drinking the juice from muskmelon can reduce spleen size. Transfusing to a higher Hb can also help.
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hello,
Im Thal Major..
I hav read in an article that by eating papaya daily 200-250 grams with an empty stomach reduces the spleen,
and secondly one should avoid taking dairy products when the spleen is enlarged,
Andy sir can you guide me how much this is affected and helpful to thal major patients.
Thankx
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I have heard the same thing about papaya leaves before. I believe the leaves are boiled and the liquid is used. Here's another one I just found. I would highly recommend that anyone dealing with a greatly enalrged spleen give these age old methods a try before resorting to surgery. There are lasting affects to not having a spleen.
http://www.speedyremedies.com/papaya-benefits.html
Peel a ripe papaya and cut it into pieces. Soak these pieces in vinegar for about a week. Consume two tablespoons of this home medicine two times in a day as a natural treatment for spleen enlargement.
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Hi Andy:
I have a quick question: I'm a Beta Thal Minor from India and seeing a clinical nutritionist. The nutritionist has suggested I do a coffee enema to get my liver working and getting the toxins out. I have a 8 cm large uterine fibroid and ovarian cysts and also have small intestinal bacterial and fungal overgrowth which causes lots of bloating and gas and tenderness in the abdominal areas.The nutritionist thinks that the coffee enemas used in Gerson cancer therapy stimulate the liver to increase bile flow and toxin dumping accumulated over many many years, jump starting the immune system getting rid of fungi, bacteria, constipation and heavy metals. I also have a sluggish thyroid and extreme dry skin due to it. What is your advice on doing once a week coffee enemas. Apparently I also have a few parasites which can be rid off with the enema as well.
Awaiting your reply. Thanks.
Poornima
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There is no research to back up the value of coffee enemas, but that may be a result of almost no research having been done about the effects. I can't tell you if it might help, but once a week won't hurt you. I wouldn't suggest more often than that.
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Hi all, my name is mark, I have thal minor. I have had an enlarged spleen since I was young. I am 30 years old. About 3 years ago I had my gallbladder removed. It was a very scary thing to go through. I eat mostly vegetarian diet and takefolic acid as well as milk thistle to help cleanse my system. I have read many stories of others having to remove their spleen. This is something very scary for me to imagine being I have heard of complications after removing spleen.
I am 30 and have not had much assistance from doctors. They are very unaware of my disorder. It creates a very uneasy situation to be in. I have mild jaundice since I was a young lad as well. I have lived a normal healthy life except for the gallbladder situation.i have not had any abdominal pain throughout my life besides the gallbladder issue.. other than that all I’m has been well. As of late my spleen has been on my mind since I’m getting older.
I have no abdominal pain, however I would like to know if any suggestions as far as supplements or additional remedies to help keep these things under wrap.
I am happy I found this place, I started to feel very scared and alone facing with this disorder.
Mark Z.
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Mark, both the spleen and gallbladder can be affected in thal minor by the high turnover of red blood cells. Next time you do see a doctor, ask for a physical examination of the spleen to see if it is palpable. Most minors will not have a palpable spleen, although the enlargement can be see by ultrasound scans. It may ease your mind to have it checked.
Being on a veg diet makes it even more important for you to take B12 daily. A sublingual B12 will help your red blood cell production, as will magnesium and natural vitamin E, and will help the RBC's live longer, which will in turn, lessen the stress on the spleen. Melon juice is also supposed to be very good for the spleen. If you like beets, they should be considered a superfood for thals.
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Thank you for the reply!
I do take a beet juice a couple times a week. Since I was younger my spleen has always been somewhat palpable. When laying flat it is palpable but like I mentioned it’s not where I feel pain or any discomfort.
Doctors ask if pain is present then feel around and I’m on my way. I will definitely take some melon juice to see if this helps. I have also began taking papaya after meals, I have heard papaya is good for the spleen as well.
As of now I’m trying to save th money to see a doctor but for now I’m trying to live the healithiest life possible.
Really like my food to act as my medicine for I do not want to have my spleen removed.
Thanks for the suggestions and I look forward to reading more on here!
Thank you,
Mark Z.
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I agree completely that you should use a natural approach to this. Continue to research foods that may be beneficial to the spleen, and yes papaya and papaya leaves are often mentioned. Muskmelon juice is often recommended by patients who have used it to reduce spleen size.
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Thank you! I will definitely look into muskmelon juice. I have also read and seen some supplement suggestions to help slow down break doe of red blood cells to help relieve the spleen and build healthier cells,.I appreciate all your responses. Any other suggestions are always greatly appreciated bring I mainly want to help keep my spleen down.
Thank you,
Mark Z.