Thalassemia Patients and Friends

Discussion Forums => The Spotlight => Topic started by: gwftan on June 16, 2011, 02:43:13 PM

Title: Newbie and simply confused!
Post by: gwftan on June 16, 2011, 02:43:13 PM
Hi.

My name is Gracia from Malaysia.  I'm a Chinese diagnosed with Alpha Thal 5 years ago.  My hematologist suggested I also have other hemoglobinopathy when she first saw me.

During my teen I'm always lethargic everytime I run, even finishing 100m, I would feel as if my heart would burst with all those blood pumping.  I always dismissed it as having no stamina as I'm not a sporty person. 

In my 20s, I started working and stumble on a chance to undergo a blood test by a specific pathology lab which was paid by the company.  Only then I found out I'm anaemic and further run the HB Electrophoresis which suggests I have normal HBA and HBA2 fractions, with negative HBH inclusions.  There, I thought I am normal, just a little bit anaemic (10.1g).

When I was having my first baby in 2005, things started to change.  The first few months are fine(10g) till 2nd trimester kicks in.  I started having low blood count (HB  7.4-8) and the antenatal clinic nurses started prescribing me iron tablets and sent me to see the GP at the local polyclinic(govt).  The doctors asked me to run HB Electrophoresis but the test did not came back until this day.  The GP increased the iron tablet from 2 to 4 and 6 and the last straw saw me instructed to take inferon jab for 10 days but the HB level never went up. 

During my pregnancy I also take the initiative to see a gynae as I was a bit concerned as it was my  first pregnancy.  I told my gynae what was treatment I was undergoing at the government polyclinic and she was totally shocked that the doctor injected inferon without checking on other test.  She quickly ran more lab test and which shows the following result:

Haemoglobin A2    2.3%
Haemoglobin F   3.2%
HbH inclusion bodies    Not detected
Ferritin   432 ug/L

As a result of this she suggested me for transfusion which was done at the government hospital and I was given 2 pints and delivers by induction 2 weeks later.  I delivered a healthy baby boy who is now 6 years old.  He has Alpha Thal too. 

After the delivery, I managed to get myself referred to the haematology specialist clinic(the only one in the state with only 1 specialist and multiple doctors who come and go as some may be doing their housemen as the specialist will only see the severe and need her attention case).  Only then I found out that I am Alpha Thal after she sent for DNA test.  The haematologist suggested I may have 1 gene deletion therefore its alpha trait.  At this point my ferritin level is 1246.

On my 2nd pregnancy(2006), the pregnancy starts with low HB but I was prepared with the assistance from the specialist clinics from both haematology and the gynae. However, things run haywire with my heart rate starts palpitating to 120 p.m. which saw me admitted to the hospital twice with HB.7.4 which the doctor from my haematology clinic says I’m fine on the first admission; I can cope with HB 7.  Only on the 2nd admission the doctor decides to transfuse as the palpitation do not seems to subside.  After the transfusion, it seems to solve the palpitation problem and I managed deliver by baby girl safely by term.  My girl is also tested and she has Alpha thal too.

At this point I am totally confused whether I am a thalassemia trait or HbH because today I went to the haematology clinic bi-annual check-up and my hb is 9.3 and the doctor was writing on his case note I have HbH?  I totally forgotten to ask him this question as I was too engrossed trying to remember what I wanted to ask him. 

Can someone from Apha thal trait moved to become HbH?  As far as the years gone by my hb was on the 7-10gm average.  It gets worse with age, I presume so I am rather concerned having transfusion in the later of my life.  Throughout my life, I had never passed out even my Hb was low. 

In 2005 my haematologist run, α – DNA studies with the following result:
-No α SEA deletion detected
- other α mutation not available
MCV – 77.5, MCH – 26.2  Few ‘H’ inclusion seen
HPL C – HBA2 < 3.5
HbF – 2.8%

Neither I know how to interpret this result as I copied this result(for own reference) as it was sent to Institute of Medical Research for 2nd DNA test which I presume the HBH?

I have mild splenomegaly(14.8cm). Frequently I can feel my heart beating while occasionally feels that is beating far too slow (50-60 p.m.) which the doctor says today its normal as the thyroid test is normal??  I had a bad upper back pain for years and never actually bothered about the pain which I dismissed as too much sitting on the desk until I stopped working over a year ago and the doctor says normal too?  Another doctor who sees me only had 5 minutes seeing me and decides that I’m having a gout(frozen shoulder) at 369 umol/L which is within normal range when I complained my upper back pain.

I frequently feel dizzy especially if I had a low HB at times if its too low(around 8+) I used to pass by my office days doing nothing productive as I told my colleagues, I can’t “think”.  Luckily my colleagues understand yet I would plough through the days trying to be “normal” although I had to lead the marketing office with busy marketing schedule.

I saw HBH writing on the forum and I agree with what he is feeling as I felt the same too.  Being categorised as “not too sick”, sometimes I was half wishing the doctor would be more caring when I see them than telling me oh... that’s normal.  Then what is abnormal then?  I told them I had palpitation, they sent me to echo test, and that’s normal result.  Then the thyroid function test, normal result again.  Uric acid, normal range. 

Bilirubin 50 umol/ L (<21) which gives the yellow urine which seems to be darker than tea at times is said to be normal. 

ESR 14 mm/h (<21) is still normal.

Then, what is all this pain coming from?  I half thinking I must have arthritis then, but all results doesn’t tell anything at all.  I am indeed worried, what is the future lies for people like us.  How does one cope with a life undergoing uncertainties as we age.  I am worried with the future whether with the excess bilirubin whether I’m going to get liver and kidney problems, excess ferritin for heart problems, hypertension and diabetes as it’s in my family’s root.

At this point of time Alpha trait --> Alpha HBH, well I’m just simply confused!
Title: Re: Newbie and simply confused!
Post by: Andy Battaglia on June 17, 2011, 03:03:28 AM
Hi Gracie,

First, do NOT EVER take iron again in your life. Your doctors have done you a great disservice by prescribing iron and your ferritin level is far higher than normal. This may even be contributing the the pain problems you have mentioned. Iron is basically a poison when there is too much in the body, as your body has no natural method of removing excess iron. Low hemoglobin levels can lead to the body absorbing more iron than is needed, so thals have to be very careful about adding to that iron load in the body.

I am a bit confused as to how the diagnosis of alpha minor was made. Your reports say there is no sea deletion and no other alpha mutation available. Your HbF is higher than the <1% expected with alpha minor. Your MCV and MCH are also slightly higher than what would be expected. Your results actually look more like beta minor. Was hemoglobin Barts detected in your babies when they were first born, or did another DNA analysis find an alpha deletion in you? I need to be certain before further commenting, as the HbF level makes little sense in the context of alpha thalassemia.
Title: Re: Newbie and simply confused!
Post by: gwftan on June 17, 2011, 08:12:26 AM
Hi Andy,

Thanks for your advice.  I basically had not taken any iron supplements by reading the labels but food wise, its rather hard to ignore the food chain  as I need to cook for the family.

The DNA analysis is performed by Institute of Medical Research whilst the Haemoglobin HPLC studies are performed by a local lab.  I do not know the significance of this with the DNA analysis but my haematologist has looked at both result and confirmed I am alpha thal, except I don’t know which type(which I am confused). I am thinking of asking my parents to do the test just to confirm so that they would know what to eat and what not to eat as my dad has asthma now and my mum has diabetic and hypertension.  My mum’s parents died with heart attack and another with cancer so I was a bit concerned about their health too and mine too as I feel getting older is really getting a toll of my cheery mood at times.

I would agree with the haematologist as I have 3 cousins who are alpha thal too from my mum’s side.  One of them are more severe, I was thinking he was having HbH as he was as pale as me and both his parents are alpha thal.  The last time I saw him this month, he looks a bit fat, but I can’t shrug it off as his spleen are probably enlarged a lot as I saw a lot of the beta thals whenever I went to the thal clinic.  I didn’t ask him as it was down rude to ask!  Having thal is a hush hush here as parents tend to protect their young by disclosing this information.  I only knew that my cousins are thal from my mum when I was hunting for answers for my anaemia(after going for rounds and rounds of merry go round) to finally get to the conclusion.

The haematologist actually performed 2 DNA analysis, one in 2006 and another in 2008(I  think) cos she said she was curious and there are much better technologies in 2008 to do the testing.  She has a lot of beta thals and not many alpha thals, I suppose judging from the clinic I went to are all waiting to been transfused. 

What kind of result do you want to see, I need to dig my file(which i own) and half that I don’t own belongs to the thal clinic so I can’t provide the more details that you need.  The problem with doctors here are they tend to change everytime I go to the clinic so no one are actually looking into my problem.  The “best” answer I had yesterday was totally put me off with... everything being “normal” so I really wanted to question, the doctors when is the right time I feel “not normal” I should be seeing them.  Do they want me to actually passed out before they find out “more information”.  Even these days, I carry my phenotype with my purse, just in case....

Thanks and appreciate your thoughts.
Title: Re: Newbie and simply confused!
Post by: Andy Battaglia on June 17, 2011, 02:56:56 PM
I would like any results you've been given for the DNA analysis and also do you know if the beta globin gene was also checked in the DNA analysis? Your HbF level does not seem possible if only alpha is involved. I am wondering if you might carry a deletion of both alpha and beta genes. That would help to explain the HbF level and would also be of some help in suggesting advice.

I do want to answer one of your questions now. Your MCV and MCH are much too high for HbH disease. MCV is expected in the low 60's and MCH below 20 in HbH.
Title: Re: Newbie and simply confused!
Post by: gwftan on June 17, 2011, 03:30:13 PM
Hi Andy,

I think I made 1 typo error with the DNA anaysis performed in 2006. 

It should read :
No SEA deletion detected
Other alpha mutation not available then

Missed out the then... sorry, that's why my story doesn't make sense and you can't make any comment.

I managed to dig out some photocopy of DNA request screening for my son as they state the result of the screening from my daughter.  My daughter has Codon 59 deletion.  I am not sure about my son, I supposed he should be the same too?  since they both inherited my bad gene.  Euu.... I was still thinking about another baby... hm... should I, should I not?

I don't know the whether my husband is a thal carrier as his Hb Electrophorosis is not done and he refuse to do it as he said he's healthy(Man's ego).  He has successfully donated blood everytime for the past 10 years leaving me feeling more "down".  How I wished I was in his position there...
Hb 17.1  MCV 85.1   MCH 28.2
My hematologist said he probably is normal based on these readings.

I know the above may not be related but does Codon 59 deletion mean anything to you?
Title: Re: Newbie and simply confused!
Post by: Andy Battaglia on June 17, 2011, 04:02:49 PM
That is very helpful. I will comment more this weekend after researching that particular deletion, which is considered an unstable deletion.
Title: Re: Newbie and simply confused!
Post by: gwftan on June 18, 2011, 12:14:25 AM
Dear Andy,

Thanks for the info.  I don't know why the doc put HbH diagnosis.. that's been helpful, afterall, the doctor who wrote it down is far too young to be a doctor ..hehe  All this while I saw the previous docs see me as trait/intermedia + hematologist won't confirm to me what type... with a probably 1 gene deletion + other hemoglobipathy?

Would appreciate your help a lot, it was good to rule out HbH... :)

Thanks!
Title: Re: Newbie and simply confused!
Post by: Andy Battaglia on June 18, 2011, 03:01:13 AM
Codon 59 refers to a gene mutation that creates an unstable hemoglobin. The hemoglobin causes both ineffective erythropoiesis (bad red blood cells) (thalassemias) and peripheral hemolysis (breakdown of red blood cells) when found with another alpha mutation or deletion. An unidentified alpha mutation was also apparently detected in you. Even though two genes involved in alpha usually means few if any symptoms, this is not the case when codon 59 is involved. It can manifest similar to HbH as it has with you, even though technically, it wouldn't be considered as HbH. Testing will also show only a small quantity of hemoglobin H. Alpha thalassemia is normally milder when the gene is deleted, but when there is a mutation rather than a deletion, a more serious thalassemia will manifest, as it has with you. This is why your doctor referred to it as HbH, because the severity is worse than most two gene alpha thalassemias. 

As I said earlier, iron must be avoided. Do not take iron in any supplement. Your body will already absorb more iron than you need because of the low Hb level. This is a common problem with HbH and iron is always prohibited. Take folic acid daily. I would suggest 5 mg daily. I would also suggest a B complex and magnesium supplements, to help the red blood cells develop and last longer. Drink tea with your meals, as it can help inhibit absorption of more iron. I would also suggest having your ferritin retested. If it is not dropping, there are a couple natural methods to try before using more extreme measures like chelating drugs. There are certain foods to avoid and a list of drugs and chemicals that must be avoided as they can cause a sudden hemolysis, where red blood cells are destroyed and the Hb suffers a sudden drop. This list can be seen at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830

If your Hb suddenly drops at any time, review your diet to see if any beans or legumes may be involved or if you might have had exposure to any chemical fumes. Even breathing in gasoline fumes at a gas station should be avoided. Meats cooked over charcoal can give off benzene fumes, so avoid exposure to that smoke also.
Title: Re: Newbie and simply confused!
Post by: gwftan on June 18, 2011, 05:51:37 AM
Dear Andy,

Thanks for your lengty explaination.  So I'm alpha trait with codon 59 deletion afterall?

I hope my Children will not suffer the same consequences that I suffer.  They do seem to have normal HB (12-13) and are rather active children.  I hope I can maintain my HB without too much drop as it seems these days are more tougher to get through as I age carrying excess iron for years.  I will do the ferritin test again.  I'll check with the local polyclinic whether they will do it, if not I will have to get the local labs to do it(through doc's referral, at least I keep a copy). Its cheaper to do the test in the government clinics as its subsidised, as currently I'm not working. 

As for supplements, will multi vitamins do?  I recently bought one, natural factors multivitamin & mineral complex (iron free) which is manufactured from Canada.  Are you familiar with it?  Its very hard to find multivatamins here(iron free).  I don't like supplements, it feel like taking drugs everyday, so i don't need to take so many different tablets with multivitamin.

Is there any specific teas that I should drink?  I normally drink Chinese tea, Japanese tea or black tea although I don't drink it so frequently.  I like coffee more. 
Title: Re: Newbie and simply confused!
Post by: Andy Battaglia on June 18, 2011, 07:44:37 PM
Any tea will do. The purpose is to inhibit iron absorption from your food. This is especially important in meals that contain high iron non-meat foods like dark green veggies. Minimizing red meat will also help as it is the highest in iron. A multivitamin is good, but it will not get you enough folic acid. This should be taken daily when alpha thal is present. These are nutrients and not drugs and there is a definite increased demand for certain nutrients when red blood cells do not last a normal lifespan. The red blood cell turnover is faster, creating a need for the B vitamins, folic acid and magnesium needed to build red blood cells. The breakdown of these RBC's also leads to oxidative stress. A diet high in antioxidant foods is recommended. I must also stress that vitamin E is a good antioxidant that is normally found to be deficient in thals. I have take vitamin E daily for over 35 years and absolutely swear by it.

Codon 59 mutations of the alpha gene can more or less place a patient in the next category. There are recorded cases where true HbH that included the codon 59 mutation resulted in fetal hydrops, which result in death of the fetus. This normally only happens when all 4 alpha genes are affected. Your test results implied that another unspecified alpha mutation or deletion is present, along with codon 59. This would explain your experiences. Because the unstable hemoglobin breaks down more quickly, you will see the effect in the spleen. Unlike what is normally happening in thalassemia, this cannot really be blamed on the spleen, as it is the nature of the hemoglobin itself that causes the breakdown of red blood cells.

There is little known that will help alpha thal. Folic acid is the one thing universally recommended. Your case is interesting because there is the presence of HbF which is not normally observed with alpha thal because there are not excess alpha chains to combine with gamma globin to form fetal hemoglobin. I did see mention in a case of siblings with a similar alpha make-up as yours, who had another gene factor that resulted in measurable HbF levels. Even though your HbF is only around 3%, this is significant and actually raises your total Hb slightly.

Please review the link from the previous post about foods, drugs and chemicals to avoid. This can help you avoid sudden hemolytic crises. Physical stresses in general can add to hemolysis, as you've seen during pregnancy. Pay particular attention to beans and legumes. Fava beans must be avoided completely, but some people report problems with other various legumes. If you see no sudden change in how you feel after eating beans, you are most likely OK, but do avoid fava beans completely.

DNA testing for alpha thal has advanced much in recent years, but there are specific guidelines to follow and it takes an experienced tech to give a complete and accurate diagnosis. Your results indicate a codon 59 mutation is present. The results also indicate another unspecified alpha mutation or deletion is present, but the testing was not sophisticated enough to identify it. I would say the only thing you really need to know is if these two defects in the alpha genes were noted in a single pair of alpha genes or whether they were on the two separate pairs. If the latter is true, your children could only inherit one half of what you have. This may be the case if their Hb stays normal and they show no problems such as an enlarged spleen.

If upon further ferritin testing, chelation or bloodletting is suggested, please let us know. In cases of high ferritin that is not dangerously high, as is sometimes found in non-transfusing thals, I suggest using natural chelators first before resorting to chelating drugs.
Title: Re: Newbie and simply confused!
Post by: gwftan on June 19, 2011, 08:50:54 AM
Dear Andy,

Thanks for the inforation.  I will go through the forum and get more details.  I don't think I ate any fava beans, its  probably not a popular bean here.  Never heard of it before. 

I will test the ferritin level again, I guess it may still be overload but may not as high as 1000 if I do my calculation right cos I haven't had any transfusion for 4 years.  My hematologist said its not "high", acceptable  but it bring years to bring it down.  Goodness know what its doing to my body to have it for years!

I think my case is different, that's why its very hard to find information over the net, needless to say, to understand it.  I only hope my children may be different, and not suffer from what I have now.

Will keep you posted once I had my ferritin level checked.

Thanks!
Title: Re: Newbie and simply confused!
Post by: gwftan on June 20, 2011, 02:22:12 AM
Hi Andy,

After searching google... now I know what's fava bean... no wonder I've never heard of it.  It's more locally called broad bean here usually made roasted for consumption.  Don't worry, I don't crave for these stuff.  My mum used to tell me these beans caused jaundice in babies if you take it during pregnancy don't know whether that's myth or truth.  Now I know... hehe..

Thanks for the info.

Title: Re: Newbie and simply confused!
Post by: monima2 on June 23, 2011, 06:40:32 AM
Hi nebiee,Try and drink a tea at least 2 a day when I drink tea i feel much more ok,then when im not.I try it on myself for few days and I come back to drinking my normal black tea with a bit of milk every breakfast morning i wake up early around 6 am,and then i take tea afternoon.
Title: Re: Newbie and simply confused!
Post by: gwftan on June 23, 2011, 09:44:10 AM
Thanks monima2 for the advice.

I was trying to do that now.  Been really lousy these days.  Slept for 8 hours, kept waking up yet, still felt as if I haven't slept at all. 

Title: Re: Newbie and simply confused!
Post by: Dori on June 23, 2011, 06:29:20 PM
I have not read the posts from others, but your pain can from high iron. For the rest I am uneducated.

Dori
Netherlands
another hemolytic anemia pyruvate kinase deficiency
Title: Re: Newbie and simply confused!
Post by: gwftan on June 24, 2011, 04:03:58 AM
Hi Dori,

I'm suspecting the ferritin store is making all the pains and other stuff too.  I had a bad ankle pain last 3 years and the diagnosis? a sports injury called medial meniscus tear(,my x-ray looks normal), which baffles me, cos I don't play sports at all!  The doctor from orthopaedic before discharging me from the clinic, indicates, the pains come and go so I think he is hinting me on something.

I went to the local polyclinic today feeling quite lethargic and the usual complaints(pains, palpition, heart pain?, abdominal bloating).  When I told the doctor I'm alpha thal..++  he had a blank stare(codon 59 deletion sounds ??)  Well, I don't think I finish talking about my problems, he brush me aside, saying... there's nothing he can do!  He won't give me any chelating drugs... i said i don't want that stuff... in the end I think I ended ordered the doctor what I want,  RBC  + ferritin  test which he did.  I wanted to ask him about my abdominal bloating but in the end, I forgot.  My HB is 9.1, which I think why it contributes to all these problems.  It has dropped from last week's 9.3.

I won't get the ferritin's result till a month's time... well, that's kinda long wait, isn't it?  It will be sent to the local hospital for the test.  I was actually aiming to keep a copy for myself, for reference to decide what natural supplements/ food that can get rid of the iron deposits since the doctors are ...ehm.. I think they think thals are always "complaining" and they can't do anything!  So much for medical care here.

Title: Re: Newbie and simply confused!
Post by: Dori on June 24, 2011, 07:22:01 AM
I am sorry your doctor was so uninformed. You are from Malysia? (spelling? :$) Hopefully your doctor will be able to attend that 2nd Singapore Thalassemia Congres. Would you be able to go or maybe you can ask someone to attend a alpha thal (trait) presentation?

Please, by a good note blocknotebook (word?) and write all your symptons, dates and appts in it. You can also do it digital but this one you can take with you. I wished I had documented my problems better. You talk about abdominal bloating. I experience this too. I do know that as soon as my fe reach above 2500 my abdominal pain will annoying me 24/7 x 7 a week.

Keep us informed,
Dori
Title: Re: Newbie and simply confused!
Post by: gwftan on June 24, 2011, 07:43:12 AM
Yes Dori, I'm from Malaysia.  I think a lot of doctors are uninformed, they think very lightly on our problems.  The quality of the doctors especially from the government polyclinic are the ones who are least helpful, they had too many patients to attend to and are always rushing; to me it feels like I'm taking a lot of their time.. since to them I'm alpha thal, is only asymptomatic and need no treatment?  They are also the ones who cause me with iron overload!

I have no choice as if I want instant RBC result, then government clinic can give you instant result in the matter of less than 2 hours.  If I go to the private GP, they will have to sent the blood result out to the local lab for analysis.  I won't get to know until its ready, sent back to the GP's office.  If that's an emergency, I may already be "dead".

I didn't know iron overload would cause so many problems, now thinking I found this website and this forum has been most helpful.  Many times I went to seek help from the doctors(from the thal clinic), they sent me to do different test, x-ray, echo test but all are not the issue of the problem such as arthritis, thyroid although the symptoms are similar.  Till the last appoitment with the clinic, the doctor told me its "normal" to have this problem!!  I wished I could see the hematologist but for many years, I don't have the opportunity to come across her as she is a very busy person.  I am only worried on the long term overload to the body, it tax the body down, create other problems in the future.  My parents had asthma, diabetic and high blood, I am worried I'll follow them too. My grandad died of heart attack and diabetes and my grandmas had cancer.  If this runs in the family then I have to care about myself.

I don't think I can attend the Singapore Conference Andy has posted.  My two children is still small and my mother-in-law isn't going to take care of them cos she's elderly.  My husband is always working outstation.  I hope the coming conference will come out with a lot of good news for us.

Gracia
Title: Re: Newbie and simply confused!
Post by: gwftan on July 25, 2011, 01:56:21 PM
Hi Andy,

I've finally got my Iron study results back from the policlinic today, unfortunate when the result is still showing very high amount of ferritin.
Iron    37.3 umol/L
Total Iron Binding Capacity  47.3 umol/L
Ferritin   1014 ng/mL

I asked the doc what's the course of action, he dare not answer me.  He said best if I go back to the haematology clinic and ask the doctors there what's the course of action they plan for me!  After 6 years, with 2 transfusions + inferon, I still fail to bring down the ferritin level.  I was thinking maybe I should not take transamin for my period, then I will have the extra heavy period to bring down the ferritin but with Hb 9, I may be too lethargic after each episode.

I complained too today to the doctor about the persistent abdominal bloating which doesn't go away 24/7 for months.  I've tried antacids, aloevera juice but nothing seems to work.  He prescibed Ranitidine Hydrochloride tablets 150mg which I'm supposed to finished the whole course(1 month) + metoclopramide HCI 10mg?? (which I don't know what's it for except its supposed for giddiness or vomiting maybe from side effect of ranitidine hydrochloride).  I was a bit precautious of taking something that needs to be taken for 1 month without fail and if its not going to be helpful at all, I better don't start taking it.  Do you think I should take this drug or are there other alternatives?

Do you have any suggestions on how to get rid of the extra iron stores the natural way too?  I was a bit doubtful on whether the doctors will prescribe me any chelators as their "wait and see approach" had been 6 years!!  and I can't get any of the drugs over the counter as the pharmacist refuse to sell without doctor's prescription.  I will check with the haematology clinic whether I can get my December appointment to be brought forward.  At the meantime, I can't just sit there and wait.

Thanks.
Title: Re: Newbie and simply confused!
Post by: Andy Battaglia on July 26, 2011, 02:37:07 PM
Gracia,

The two meds are both used to treat or prevent ulcers. Ranitidine is called Zantac here and is  commonly used to limit stomach acid. It should be safe to try. Metoclopramide comes with a serious warning about possible side effects. The drug has a real risk involved.
http://www.drugs.com/cons/metoclopramide.html

Quote
met-oh-KLOE-pra-mide

Oral route(Tablet;Tablet, Disintegrating)
Metoclopramide treatment can cause tardive dyskinesia, a serious movement disorder that is often irreversible. Risk is increased with duration of treatment and total cumulative dose. Discontinue metoclopramide therapy in patients who develop signs or symptoms of tardive dyskinesia. There is no known treatment for tardive dyskinesia, although symptoms may lessen or resolve after metoclopramide discontinuation. Prolonged treatment with metoclopramide (greater than 12 weeks) should be avoided in all but rare cases where therapeutic benefit outweighs the risks .
http://www.tardivedyskinesia.com/
Quote
Tardive dyskinesia is a condition that may develop in patients who use metoclopramide, a drug sold under brand names such as Reglan in the United States. When a patient has been taking certain prescription drugs over a long period of time, often in high dosages, involuntary, repetitive tic-like movements can result, primarily in the facial muscles or (less commonly) the limbs, fingers and toes. The hips and torso may also be affected.
I would be very hesitant to use this drug.

Green tea extract and IP6 (phytic acid) supplements are both natural chelators, that will slowly remove iron. I don't think your iron load is high enough to justify using chelating drugs.


Title: Re: Newbie and simply confused!
Post by: gwftan on July 27, 2011, 05:28:18 AM
Dear Andy,

I've tried 1 dose of ratidine this morning and it feels great.  Here we have the drug called Histac supplied by Ranbaxy by the govt hospitals.  It may be a generic drug. 

I went out this morning and try to search of IP6.  I went to one of the pharmacy which I'm very familiar with and the pharmacist told me IP6 is not available in the pharmacy.  She doubt I can get it in other pharmacies too as this is not a familiar supplement/drug.  She asked me to try mail order, but I may have run into problems with customs.  In Malaysia, the government plays strict control over drugs so sometimes, its not easy to obtain these over the counter. 

By the way, the green tea extract, where can I obtain this?  I've gone to a organic store, what I got is the tea not the extract.  I occassionally take green tea with meals, sometimes I take black tea with milk.  I don't think green tea without the extract is helping that much to remove the iron.

I spoke to one of the direct sales person from Nutrilite(Amway) coincidently to ask about IP6 he recommended me Nutrilite Concentrated Fruits and Vegetables but he's not too sure contents of phytic acid/inositol hexaphosphate is in the concentrate.  It has high anti-oxidant.  I managed to search the internet and I'm copying the extracts of what its made of for you to have a look.

NUTRILITE Concentrated Fruits and Vegetables Tablets is made from food extracts of green tea, pomegranate, orange,
elderberry, blueberry, acerola, broccoli, carrot, spinach & tomato.

This exclusive NUTRILITE formula provides the same quantity of lycopene, hesperidin and ellagic acid as is found naturally in 5 servings of various fruits and vegetables.

Provides the phytonutrient equivalent of more than the five to nine daily servings of fruits and vegetables recommended by health authorities.
Delivers antioxidants to help fight free radicals generated by smoke, pollution, and exercise.
Standardized antioxidant and phytonutrient levels are documented on every label
No added artificial colors, flavors, or preservatives
NSF Certified for Sport®
60 tablets
Contains selected phytonutrients equivalent to the amounts found in 5 servings of fruits and vegetables
Helps to expand the variety of plant-sourced nutrients in the diet
Contains plant antioxidants that help to protect against free radical damage
Contains the phytonutrient lycopene from tomato, a carotenoid compound
Contains the phytonutrient hesperidin from orange, a citrus bioflavonoid
Contains the phytonutrient ellagic acid from pomegranate, a polyphenol compound
Contains the phytonutrient EGCG (epigallocatechin gallate) from green tea, a potent antioxidant polyphenol
No artificial sweeteners, colours, flavours or preservatives added

My question is, do you know whether this product helps to remove the excess iron since its very hard for me to find IP6.   :(
Title: Re: Newbie and simply confused!
Post by: Dori on October 16, 2011, 12:06:45 PM
I still have a bottle of inositol but I remember I need another supplement to be able to take it.

I have also asked at a shop about milkthistle and they say it is in the same as B3 Niacine 100mg. Is that true??
Title: Re: Newbie and simply confused!
Post by: Andy Battaglia on October 16, 2011, 05:08:11 PM
No, milk thistle is an herb harvested from the plants. It is actually a very common field plant. See our gallery pic at http://www.thalassemiapatientsandfriends.com/index.php?action=gallery;sa=view;id=274