Questions for Andy

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

Have you tried ordering from Puritan's Australian website at http://www.puritanspride.com.au/ip-6-inositol-hexaphosphate-sku-005745.html/

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 

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 .  Should I take 3 tablets or I should take less than that?

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

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.

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

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.

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

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.

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.

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.

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.

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.