Newbie and simply confused!

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.

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

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

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.

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

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/

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.

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.   

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??

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