Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: gwftan on September 08, 2011, 04:04:41 PM
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Hi Andy,
I have some questions that had been bothering me for months. I wanted to post this earlier but I was quite busy doing “research” and still cannot satisfy myself with the findings, some readings was so extensive that I don’t quite understand them at all especially genetics so I wanted to ask for your opinion.
Sometimes back I asked you about my alpha thal. I told you that my daughter’s DNA testing reviewed that she has a Codon 59 deletion. However, my haematologist would not take that for my alpha thal condition and instead ordered another DNA analysis last month. She even upgraded my thal status to Hbh!
Last month when my Hb dropped to 8, my haematologist ran hb electrophoresis. I managed to copy the important notes(after the junior doctor let me copy it). I only jot down important notes.
HbA 94.3
HbF 3.8
HBA2/E(I think E?, my paper is not clear) 1.9
H inclusion positive
SEAH0E α3.7
2006 DNA analysis suggested No αSEA deletion detected. Other mutation not available then.
2007 DNA analysis for α thal showed α3.7 carrier state only
2009 Took another sample. I don’t know this result. My daughter’s DNA analysis detects Codon 59 deletion.
I don’t have all the test result for all the DNA testing. It was kept in the file in the thal clinic. I only have bits and pieces that the doctor wrote to request for more testing which I copied down for own reference.
My question, if I’m having SEA deletion, - α3.7 deletion and a Codon 59 mutation, does that put it both my parents are also alpha thal as well? Then one of them must have SEA deletion and another with α-3.7 deletion. So Codon 59 comes from which deletion? That means all this while I’m HbH? The Codon 59 mutation, can it come from a non-thal, like my husband or a spontaneous mutation? My haematologist is more concerned to know what type of thal I’m but I’m more concerned to know why is the hemolysis and how to get rid of my excess iron and what future lies for me.
Tracing back my ancestry, I am actually convinced my father is a thal too because I still remember my uncle’s wife(my father’s side) has a hydrop fetalis when I was still young. My mum had few miscarriages and the last baby she had had growth restriction, ie the fetus was not growing for few weeks. She had it terminated because she’s unwilling to think of raising a retarded child as the doctor warned the child may be retarded. I have a cousin(mum’s side) is a slow learner(as my uncle called him), could he be having ATR-16 syndrome, he actually had a bit of look like down syndrome child. How do one gets a ATR-16 syndrome child? Does it pass down from one thal parent or both parents has to be thal? After reading so many articles, I’m actually considering whether I should have or should not have anymore children, there are so many risks involved, Codon 59, ATR-16.
For my children how do they inherit my thal? Do they inherit it by what my parents are having if I’m a HbH? I’m thinking of bringing them for DNA testing when they are older to get the specific gene mutation/deletions when technology are more advanced. Now its good to know they are alpha thal but they would need to know what specific type when they are setting up their family.
As for iron overload, I’m thinking of getting IP6 overseas. I’ve just asked my brother to find out whether he can make the purchases in Singapore as he is working there. He kept telling me supplements in Singapore is very expensive, I should try get it elsewhere like Australia nevertheless he will help me to look for it during his free time. Do you know whether it is easy to get it over the counter in Singapore or Australia? I may need to ask my cousin to get it in Australia when she came back for holiday for Christmas.
My haematologist is not quite willing to solve my iron problem with Ferritin 1014ng/mL and said with Hb 8, she won’t start any chelation programme. Whilst on the last visit, the junior doctor keep me in KIV said my Ferritin is still “OK”. I’m more worried about organ damage as my family especially my mum’s side has a history of diabetes, cancer, hypertension, etc etc. I asked my haematologist about green tea she told me it can remove some only which is to me not good enough since I’m probably absorbing more iron from the gut. I asked her whether there’s other natural way to remove the iron, she told me only chelators!
I also had a 1 pack RBC transfusion last month, not that I wanted it but because I’m travelling overseas. I’m worried about my Hb dropping in overseas(which i think had dropped as I just came back) and also partly I wanted to experience the difference between pre-transfusion and post-transfusion. After the transfusion, I was actually rather disappointed with the outcome as I was feeling so sleepy all the time although I feel less tired limbs when climbing stairs. However, it took a few days for the sleepiness to go away. I took a blood test with a private doctor together with other tests and Hb was 9.8. I was doubting this actually because the lab that the doctor sent for the test is the one which tested my Hb Electropheris normal.
Two weeks post transfusional, I had an appointment with the thal clinic, my hb registers 8.9 which was a disappointment. I asked the junior doctor why the hb was so low and he said its probably because the RBC that I had may have shorter life span. I am actually worried on my unstable Hb this year, whether I have other underlying problems.
Do you know whether detoxing the liver and gallbladder works for thal? I thought the liver and gallbladder must be overworked with iron overload. I’ve gone for a liver and gallbladder talk and the speaker suggested detox method by Dr. Hulda Clark to get rid of gallstones. I was wondering whether there are any significant change by using the method as thals would have problems with liver and gallbladder stones and for general health. I pose the question to him about getting rid of iron overload, he can’t answer me, then I found out he’s not a nutritionist, a teacher by profession.
Sorry if I asked too many questions because most of the time the doctors cannot suggest to me a better answer. They either tell me I’m ok although I glimpsed my report was “not ok to me with so many highlight” and wait for my symptoms to get worse probably, by then I’m probably “confirmed” to be having the problem which I’m trying to avoid here as I remembered reading in Genetic and Clinical Features of Hemoglobin H Disease in Chinese Patients findings iron overload that the liver was moderately overload in MRI with ferritin of 304 while doctors here are still relying on blood test to make a conclusive diagnosis.
Thank you.
Regards,
Gracia
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What is IP6?
I will see if it is available at my local chemist, in Melbourne, Australia.
Regards
Catherine
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IP6 is phytic acid or Inositol Hexaphosphate. It is derived from the bran of grains like rice. It is a mild iron chelator and a good antioxidant and has been the subject of much study in regards to preventing cancer because of its iron inhibiting property. Cancer cannot spread unless it has a good iron supply, so IP6 has attracted research interest. It can be used as a supplement to chelation but is not strong enough to replace chelators. One of the best qualities about IP6 is that it can reach areas that chelators like Exjade and desferal have trouble reaching, specifically the brain.
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Hi Andy
Do you think it would be possible to buy over counter in Australia. My local chemist had not heard of it but said maybe to try health food shop. Will try another chemist using names phytic acid and inositol hexaphosphate this weekend.
regards
Catherine
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I have a product by the name of Nature's Way Mega B
Ingrediants as follows:
Thiamine nitrate (B1) 30mg
Riboflavine (B2) 15mg
Nicotinamide (B3) 100mg
Calcium Pantothenate (B5) 60mg
Pyridoxine Hydrochloride(B6) 25mg
Equiv to Pyridoxine 20.56 mg
Cyanocobalamin (B12) 60mcg
Ascorbic acid (Vit C) 25mg
Biotin (Vit H) 50mcg
Folic Acid (B9) 200mcg
Insitol 25mg
Choline Bitartrale 25mg
Magnesium (as oxide) 60mg
Zinc (as Sulphate) 8mg
No added sucrose, glucose, lactose, gluten, wheat, corn, starch or any flavours or preservatives.
Is this IP-6.
Regards
Catherine
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Hi Catherine,
IP6 can be seen at the links below. It is related to the B vitamins, but inositol alone is a different compound.
http://www.puritan.com/antioxidants-040/ip-6-inositol-hexaphosphate-005745?searchterm=ip6&rdcnt=1
http://www.vitacost.com/ip6-inositol-hexaphosphate
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Hi Gracie,
Thank you for your patience. I needed to get a bit of time to try and answer.
Some background information may help. There are 4 alpha globin genes, consisting of two pairs of two alpha globin genes. Each parents passes on one of these pairs of genes to their children. If you look at the reference pics at http://www.thalassemiapatientsandfriends.com/index.php?action=gallery;sa=view;id=280 and
http://www.thalassemiapatientsandfriends.com/index.php?action=gallery;sa=view;id=279
you can see the various possible outcomes when both parents are carriers. If you have two different alpha mutations, you got them from each parent. If only one deletion or mutation is present, you got it from only one parent. In your case, there have been results that differ from each other. I think the only solution is new testing by DNA sequencing at a lab where they understand alpha mutations. I think your current doctor can advise you on this. I think this is essential because the codon 59 deletion may be present and if so, this would explain much about your condition including the unstable red blood cells that break down so quickly. If you have both codon 59 and SEA then both parents are carriers. It also means that you have a condition that while technically is not HbH, it manifests similar to HbH due to the codon 59 deletion which is unpredictable in effect, so you find an occasional need for transfusions. I know your ferritin is not dangerously high but because HbH is similar to thal intermedia, the same circumstances can occur where true iron load cannot be determined by ferritin testing alone, and a liver MRI scan would be much more informative and tell you if chelation intervention is needed. I think this may become necessary as more transfusions are taken. Talk to your doctor to see if an MRI of the liver would be advised based on the number of transfusions you have received and any iron supplements you may have taken. Iron overload in thal intermedia is well established, even when no transfusions have been taken, so it is a real concern. I am not a big fan of these detox regimens and think that for the most part they are a waste of money. They will not remove iron. I prefer the mild herb milk thistle. See http://www.naturalnews.com/033524_milk_thistle_liver_protection.html
Milk thistle protects the organs and also helps in tissue regeneration in the liver. Nigella is another herb with excellent protective and healing properties.
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Dear Andy,
Thank you for for clearing some of my doubts. My hematologist has asked for blood sample last month for more DNA test but I don't know what type of test she's running and the test had to be sent to IMR(I think, they ran a lot of DNA testings). The only disadvantage here is I think she's more familiar in beta thal than alpha because there are not many alpha under follow up. I don't normally see her and she's not around most of the time so sometimes the questions I ask to the other doctors do not satisfy me especially on treatment on my iron overload(technically not high, don't manifest many health problems compared to other beta thal major). So the only other alternative is to combat my overload myself. I'm not sure whether there are MRI scan if I ask for it because the other day, the doctor only gave me forms for LFT. I know LFT itself don't give true answer to the overload in the liver.
I asked my dad to ask his doctor for DNA testing when he went for his asthma clinic from one of the government hospital but the doctor said they don't run these test. My mum told me she will ask her doctor to check her RBC as it has been a long time since her last check. Both of them are living in one of the town in Sarawak and DNA test are not accessible for them, so I'm merely guessing what type they are having and what precautions they should take. Both of them must have been carriers but manifest other health problems that had been discussed in this forum though they don't look anaemic.
At the moment, I take a whole concoction of vitamins including multi-vit(no iron), folic acid, B-Co, Chlorophyll(is this essential?), Vitamin E. Thanks for suggesting the Milk Thistle and Nigella. I will go to the pharmacy to look for it. I’m not a fan of detox but the talk on gallbladder stones flushing sounds good, though some people suggests its a total scam. I also read somewhere in the forum to avoid honey? I recently started drinking apple cider vinegar with a tablespoon of honey for health, and was wondering whether a tablespoon of honey is ok or I should scrap this regime??
Actually something crop on my mind and I had been reading a while about molasses and to avoid it as its high in iron. My aunty gave me some water kefir grains to brew with mineral water last year. It uses jaggery powder, which is not sweet(alternatively molasses can be used as well, if there are no jaggery powder available) and was stored in an air-tight container for 4-7 days, producing an enzyme, supposed to be good for health. You can check it out at http://zoevblog.com/2010/03/17/what-is-water-kefir-and-how-to-make-it/ but mine is not so complicated without the dried fruits. I had been drinking this for a while end of last year(2 months) and the last hb check in December 2010 showed the highest 9.8 whereas I was normally somewhere between 8.5-9.3 for the past few years. I stopped drinking it earlier this year because I was a bit worried about consuming too much sugar as it was sweet especially if molasses is used! I was wondering whether it does help with maintaining hb as I was thinking of starting the brew again...
Thanks again for answering my questions Andy. You have been most helpful. Since joining this forum, I find a lot of information about thal. Sometimes I find it equally hard to shop around these days reading labels(at times), avoiding certain food and more difficult to cook for the family. It seems that I’m only one with iron overload, and I should not deprive others from food that I avoid so I still serve it on the table but I take less.
Have a good day.
Regards,
Gracia
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I have found the following to products at health foods shops in Melbourne.
GNC Inositol 500 100 tables AUD$28.95.
http://www.gnclivewell.com.au/product.asp?id=316&t=Inositol+500mg+GNC+100T&cid=2
Musashi Inositol oral powder 1g/1g oral AUD$14.40
http://naturalhealthdirect.com.au/health/musashi-18/musashi-amino-singles-122/musashi-inositol-75g-92.html
Regards
Catherine
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They are both inositol, not inositol hexaphosphate. Please see http://www.puritanspride.com.au/ip-6-inositol-hexaphosphate-sku-005745.html/
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Thanks Andy, I don't think would be able to buy this one in over the counter in Australia as it as not appear to have a AUST number on the packaging.
When I spoke to the Health Shop owner they advised that lot of the products were made in the USA and were not approved for sale in Australia.
Regards
Catherine
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Hi Catherine,
The website is Puritan's Australian site, so you should be able to order online there. It may be that the pics used are from the US website. I have used Puritan for decades for price and quality. I did see IP6 on another Australian site but the price was much higher.
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Hi Gracia,
I see no reason to avoid honey unless there is a diabetes problem, and even then a spoonful wouldn't cause harm. Honey from China may contain toxins so it is advised to avoid it, unless the source is known. Molasses does contain iron, so it's wise to avoid when iron is a concern. Jaggery has minimal iron so it should be OK. Chlorophyll has some value and is similar to hemoglobin in structure, but I don't think it's essential. If you find positive results, continue to take it.
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Hi Andy & Gracia
In answer to the question whether IP6 can be brought easy over the counter in Australia, I believe the answer is no.
I have tried a number of chemists and health foods shops
Regards
Catherine
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I would also like to thank Andy for all his patience with my lack of understanding of how important every little word is a supplement ingredient description.
Your patience is amazing.
Catherine
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Dear Andy,
Thank you for patiently listening and answering my questions. No, I don't have diabetes, only my mum has it. I'm in doubt of China honey myself. Although I can find Australian honey here but its a bit more pricey. Local honeys are available too at the local market, but sometimes are doubtful as some scrupulous seller might add sugar to the content. Jaggery powder is fine but not sweet, therefore in order to take the enzyme sometimes I add the enzyme cultured with molasses(to sweeten up). I will try out this enzyme again and see whether it makes significant raise to the hb and better health.
I'm not sure whether Chlorophyll makes a lot of significant health benefit myself so far but the labels says its for liver health so I'm just going to take it since the nobody in the house is taking it and I don't like to see it wasted.
Catherine,
Thanks for asking about the IP6 in the local store. Now that I know it can't be bought over the counter, I may need to ask my cousin if its ok for me to mail order it to their address. I haven't spoke to them about looking for IP6 yet because I asked my brother first to look for it in Singapore he gives me a headache trying to explain what it is, what is it for, is it safe, why I need it... all those sort of questions.
Regards,
Gracia
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Have you tried ordering from Puritan's Australian website at http://www.puritanspride.com.au/ip-6-inositol-hexaphosphate-sku-005745.html/
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Hi Andy,
I haven't ordered anything online. I'm a bit phobia of doing mail orders with my credit card... I just got my replacement credit card recently because I forgot and left it in the ATM and the other day, I made a mistake with online transaction, so I was trying to use the conventional method :biggrin
I had a little chat with my mum yesterday. Apparently she has spoken to my aunty(staying in KK) who has just came back from Australia over the weekend. My cousin used to work at a pharmacy in Australia(last year) and my mun said she's still working there. Therefore I've left her a message on FB but she haven't replied me yet. I think its probably easier to ask my aunty/cousins to get it from Australia, since my aunty and my cousins frequently flies in and out of Australia as they have PR. I was wondering do you know how many bottles do I need. Will 3 be enough for a start?
Today I bought biolife milk thistle & dandelion. I saw the dosage was milk thistle 3000mg and dandelion 300mg per tablet. The instruction was to take one tablet 3 times daily with food. I asked the staff in the pharmacy(the pharmacist was not around), she said 1-3 tablets depending on the extend of liver damage :huh. Should I take 3 tablets or I should take less than that?
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Hi Andy,
I’m caught with a series of confusion after attending today’s review at thal clinic, together with my hb 8.7 today, it adds more to my haze.. I raised a few question to the doctor attending me about what I had been gathering over the last month, which the doctor kindly took time to answer but I only “caught” half of what he’s saying.
1) I question him about my iron overload. I asked if he has heard about IP6 and he said no and will not suggest that I try it out. There had not been much research and will never recommend me to take any supplement for chelation than the government approved chelators. His worry is if the IP6 doing more harm to my RBC than good and why would I want to chelate my iron, since my store is not alarmingly high. My last iron study in June is Iron 37.3umol, TIBC 47.3 and Ferritin 1014ng/mL. Ferritin result may not be correct if there are infections so I was like ??? Then, he told me if there are any side effect from IP6, they are not “accustomed” to treating and told me some patients who tried out supplements before had more side effects than good and suggests that I don’t try out other than the government approved chelators with known and published work. After he discussed with the haematologist he told me that if I was worried about my overload, they have no problem to prescribe me desferiprone but it has its side effect and I have to check my FBC every week in case the WBC drops. When I asked him before I left if he’s prescribing it to me, he told me not now.
2) I’ve done the LFT twice, once last month and another one this week. My AST and ALT is slightly elevated last month but this month has came down normal. My indirect bilirubin is higher than normal, which the doctor says was because of the hemolysis. I actually started the Milk thistle that you advised and I told the doc about it and he said Western Medicine do not believe in herbs ?? and told me I should not simply take any herbs. I know you’re not a fan towards detox but I actually did one round of gallbladder flush, just to try out. I’m not too sure whether it really works but at this point I’m more than willing to experiment.
3) I asked him about is there anything to improve the hb since I’ve tried Vitamin E, B-Co, vitamins for the past 2 months that probably contribute to a more stable hb from Hb8.9 to 8.7 rather than dropping further. I told him no to transfusion after trying to get rid of iron for years, I think I will rather absorb iron from the gut rather than iron from the transfusion. After discussing with the haematologist he told me that I could try S/C Eprex (Erythropoetin) twice a week but the hospital is low in stock, and its rather costly. Once the stock has finished I will need to decide whether to continue or not. At the meantime, he indicate I may want to “research” this option(I think he probably think I research too much?). What do you think, Andy? I read on the internet its not a solution for thal, rather a short-term solution for those needing to go through a major operation, etc to increase the RBC and plus he’s not sure it works for me.
So, right now, I think the doctor still can’t conclude my diagnosis, partly because the DNA analysis haven’t returned. They cannot decide what are the best treatment for me, whether they should treat my iron overload and I am getting sick of frustration here. He ordered another preripheral blood film, as he said the haematologist are having a conference with pathologist in the state next month, so they can bring this out to discuss. Heck, I really need to know what’s wrong with me!
I actually located one store in Singapore selling IP6 Gold, by Dr. Shamsudin but the sales person cannot tell me whether the product can be used to chelate iron, rather told me about other health benefits. I’ve also found out another IP6 by Innocell, also available in Singapore but I haven’t got the time to call them up yet. I’ve been googling and found out GNC Malaysia carries GNC Herbal Plus Standardised Green Tea Complex 500mg, which each capsule features 125mg of EGCG, a major active component of Green Tea. Is this the green tea extract you’re referring to? Since the doctor said no to IP6, should I still go ahead with buying IP6 or green tea extract and which IP6 would you recommend?
Sorry if I asked too much but I think you’re seen and diagnosed more than my haematologist and doctors has done in their life for thals therefore its hard to believe every word the doctors said. Therefore I appreciate your expert opinion here.
Thank you.
Gracia
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The problems people have with finding IP6 (phytic acid) or having a doctor agree that it is safe to use are just plain silly. Phytic acid is already found in every cell in the body. In addition, there has been quite a bit of research into its use in cancer patients because of its ability to inhibit the action of iron in cells. Cancer cells need a steady supply of iron to multiply and depriving them of iron is a proposed strategy. IP6 is quite safe. It is found in the bran of most grains and is a good reason to eat brown rice.
1. OK, your iron levels are not high. Your TIBC is quite low, which is an indication of hemolytic anemia. Only your ferritin is high. Your liver values have also been slightly high. I think it is more likely that you have had some type of infection or inflammation that has bumped up your liver values and your serum ferritin.
2. The bilirubin is, as the doctor noted, a result of hemolysis. Keep taking the B complex and E. Don't expect to notice changes. The natural approach is natural and takes time, and you won't always notice the differences until you stop taking them after taking for long periods. B and E will help to build red blood cells and magnesium is also essential to slow hemolysis. Since you are a woman, no doctor will object if you take a calcium/magnesium supplement in a 2:1 ratio. The liver levels may be related to the bilirubin or to a recent infection. Slightly high is no big deal and quite common. Milk thistle is good for the liver and can help regenerate tissue if iron or disease has caused damage.
3. I don't think EPO is a good idea. http://www.kidney.org/professionals/kdoqi/guidelines_updates/doqiupan_v.html
5. Hemoglobinopathies: Patients with sickle cell disease respond poorly to Epoetin therapy, even when high doses of Epoetin are used over long treatment periods. In hemoglobin SS and SC diseases, Epoetin results in release of reticulocytes containing predominantly hemoglobin S, with little if any increment in the more stable hemoglobin F.280-282 Both alpha and beta thalassemia may respond poorly to Epoetin. Alpha thalassemia is more common among Asians and those of Asian ancestry. Treatment of alpha thalassemia with Epoetin may increase Hgb slowly, with effective therapy usually requiring very high doses over a long period.
Your ferritin is high but serum iron is not. Since IP6 is proving difficult, yes please do try green tea complex. It is also a mild iron chelator, inhibits iron absorption and is a strong proven antioxidant, which has great value to bodies under the stress of hemolysis. I would not suggest a chelation drug for your ferritin level. A slow approach will work fine without the side effects of the drugs.
I hope the testing gets it right. Some alpha mutations are quite difficult to discover and a specific method is required.
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Hi Andy,
Thanks for the prompt reply.
Yes, sometimes it proves difficult to try to make a standpoint to the doctors as they regard us being "do not" know it all and probably "annoyed" seeing us showing them stuff they don't know... hehe.. Anyway, I may try IP6 but getting it from Singapore is just plain expensive and troublesome(where local authorities are involved). Since I just started the green tea, lets see if it makes much significant change to my life. By the way, should I take 2 caps per day or increase the dosage? The label states one or 2 capsules daily, for general wellbeing. Each capsule contains green tea leaves extract 250mg(14% polyphenols) and green tea leaves extract 250mg (75% polyphenols)(50% EGCG). Is there any specific way to take it because I take it after food at breakfast and lunch.
I almost think I might have liver and gallbladder issues here because of the symptoms especially this few months with constant slight fever(afternoons only), bloating, nausea, pain among others. Only I'm confused why the values do not increase the LFT values. Do you know if low hb is associated with fever? I think when my hb is high 9 and above, I don't have this fever problem. My WBC and neutrophils is slightly elevated this week, though I don't know where the infection comes from, unless from the inflammation from the muscle and joint pains. Not to mention its so frustrating living with the tinge and pain all the time.
I do hope they get this testing right this time. At least I would know what specific type of mutation I'm having here and the doctors would have a better prospect of treating me, rather than the wait and see approach. I'm not afraid of needles but its the constant pricking and no answer which is frustrating.
Thanks again and enjoy your weekend. God Bless!
Gracia
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Hi Gracia,
Take at least 2 of the tea capsules daily. Doubling this is safe, but I would suggest taking the 2 cap dose for a couple weeks before raising it. The tea extract is a good antioxidant, so this is also helpful in combating hemolysis. I really think it's the hemolysis/bilirubin combination that affects your gallbladder and liver. B complex, magnesium and vitamin E are advised, as is avoiding all chemical fumes and watching to see if there is any connection between eating beans and legumes and your symptoms. The goal is to slow down and minimize the hemolysis of alpha thal.
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Dear Andy,
Thanks for the suggestions. I will try that and see the difference it will make to this month's review, it may well take few weeks/months too to see apparent difference, I think.
Have a nice day.
Gracia
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Dear Andy,
It has been a while I wanted to post this but last week two weeks had been a hell suffering from very bad pain needing bed rest every few hours for relief of my shoulder/back pain and other pains(inflammation, I think from different part of my joints). This week I felt much better, more energy and the pain was lesser.
Since I joined this forum, I find it very informative to get a whole lot of support, especially from you. I recently had an iron studies done and my ferritin level has dropped from 1014ng/ml to 796ug/l despite having one transfusion in August. Your advice on the green tea capsule really helps. I am still taking 2 capsule daily from GNC and drinking green tea daily. Although the numbers are small but I think this is a safer way to get rid of the excess iron since I don’t get the support from doctors thinking I need a chelator to get rid of it for the last 6 years! My Hb has also increased to 9.3 last week, probably due to the vitamins you've recommended.
I wished all doctors are more like you Andy. After seeing so many doctors in a short span of time, haematologists included, I find myself more and more disappointed with the so-called clinical management of patients. I think TIF should be more proactive in this role. I was wondering if I had known thalpal much earlier, I would had already got rid of this excess iron and probably won’t have to suffer this pains.
I have a doctor who’s main concern is to know whether I still wanted to get pregnant or not. Another told me thal intermedia is asymptomatic. While another, told me I’m downright mildly depressed! Ya, who would not be depressed if I’m beating around the bush, with no answers leaving me with no choice but to find out and do the guessing job. I was referred to the rheumatology clinic but the appointment will not come early, I still have to bear with the pains without an answer till next year!
I think clinical management of thal patients needs to be change. There must be more understanding towards our needs. Being a symptomatic who’s not a HbH but maybe I am, hell, I don’t know what I am, the doctors should actually give us the alternatives. Towards keeping us iron free, if they are not willing to use chelators, please tell us we have alternatives rather than keeping us mildly overload. Surely the free iron are too willing to find somewhere to park. When they accumulates and gives us the trouble, its no longer the “blood” problem, its other disorders. That is the most fearful for all of us.
Sorry for venting this much. There is just too much steam with not outlet. Questions after questions with no answer and no solution. That is how desparate I think I am. Keeping myself well, means taking more supplements, reading more food label, avoiding more food, changing my menu, changing my lifestyle. Now I had a whole lot of supplements to take, it just burns the a hole in the pocket. Add with more pain, it add a whole new range of new things to adjust. Its just downright too much at the moment to take.
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Hi Gracia,
I'm happy to hear that your iron is finally dropping. Iron may be adding to your joint pain, so hopefully it will help as you continue to lower your iron load.
It would be good to get a clear picture of what alpha mutations you have. If one does prove to be the codon 59 mutation, it would explain much, as when one codon 59 gene is mixed with any other alpha deletion, HbH can occur even though only two genes are affected.
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Dear Andy,
I wished I knew "officially" what type of mutations I have. It just seems to take the government so long and even Singapore hospitals conveyed they do not know whether they can help me to determine my mutations.
The "best" is to have hematologists, telling me that iron has no role to play in the joint pain. I only hope the best for the coming years that I do not get health worsening. I can only try my best, and hope for the best. I will continue taking the green tea, hopeful for the long term effect will be better.
Thank you.
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These mutations can be very difficult to assess in alpha thal and not all labs are capable of running all the techniques used, so the uncertainty about what it is is somewhat understandable. I will say that your phenotype (how the thalassemia actually manifests physically) would support that the codon 59 mutation and one other mutation or deletion are present and even though it may appear to be minor, HbH disease is often the result when codon 59 is involved with other alpha deletions or mutations. Unfortunately, there are very little recommendations for those with HbH disease. Usually the Hb is too high to transfuse, but low enough to present problems of anemia and possibly excess iron absorption from diet. As one who tries to help, I find it very frustrating that alpha thal has been given so little attention and folic acid is the only traditional recommendation, along with avoid all broad beans and chemical fumes. Iron will not drop quickly with natural chelators but it does drop. I do suggest natural vitamin E both for alpha thal and your joints. Mild exercise like walking or swimming is also very good for the joints. Iron actually plays a negative role anywhere there are deposits and join pain is a common symptom of iron overload. Any text on hemochromatosis will show joint pain as a symptom. Cleaning out the iron will affect your entire body and lower your susceptibility to all bacterial and viral illnesses and even lower the risk of cancer.
As the years go by we learn more and other people share more of their experiences. I hope this will include more information on how to cope with alpha thal.
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Dear Andy,
Its so nice to get your reply. I haven't been able to log into any internet for more than 2 weeks as I went back to my hometown with no internet access at my parents' home!
Yes, I think what I feel now as alpha thal is what most of other alpha thals must have feel if they have the same problem like me. I don't think diagnosis would be easier too, as I have been flipping my parent's medical records, it seems their hb are in the normal range, even the MCH, MCV are quite normal. If I don't know I have alpha thal, I would too wonder why I would have such a low hb and where does the gene comes from!
It is always frustrating to have very little medical attention and recommendations too as being a frequent visitor to the thal clinics, the doctors can't seem to be able to recommend anything much or do anything. My only hope that they would pay a little bit more attentions to the problems and complications that alpha thals would be facing, for example, treat iron overload as it would leads to future complications.
I feel sad, after coming back for a family gathering, to know that many of my uncles and aunties are facing many medical complications, one which nearly died of heart attack recently because the doctors from my hometown do not have surgeon to perform emergency surgery. One may simply call it a disease of aging such as arthritis but after reading so many articles about thals, I frankly quite believe, it must have something to do with inheriting the thal gene.
Taking regular consumption of green tea, vitamin E and other vitamins has a great effect by making my body tire less as well as cleaning out the excess iron. However for the joint pains I also take other supplements such as the evening primerose oil and GNC herb for the joint which contains tumeric. I think it lowers down the inflammation. Less joint in pain, makes life more cheerful :) . I like the feeling of going to swimming pool but only I don't know how to swim. I feel so tired making the plunge all the time and sticking at the side of the pool all the time because I feel safer to know that my hands can reach out when I need it.
As for hope, I share the same hope as you. I can only hope more people would reach out and share because having thal is something we cannot change but being able to lead a much better life is something we ought to look into.