Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Zaini on August 06, 2007, 09:25:10 AM
-
Hi All,
I hope you all are doing well, Zainab's hemo suggested some tests for her and i want to share the results with you people ,to know your views,her hemo is on vacation so we are waiting for her comments.
TEST RESULT NORMAL RANGES
Magnesium 2.2mg/dl 1.9 - 2.5
S.Total Bilirubin 1.5mg/dl 0.0 - 1.0
SGPT(ALT) 52IU/L 3 - 33
S.Calcium 8.8mg/dl 8.6 - 10.5
S.Phosphorus 6.1mg/dl 4.0 - 6.3
S.TSH 3.32ulU/ml 0.6 - 6.3(4 mths to 15 years)
So a cousin of mine who is a general physician told me that all tests are normal,Though bilirubin and SGPT are bound to be a bit higher in thals (due to hemolysis according to her ),i think she is a bit low on calcium,i'll ask her hemo to start some proper calcium supplement,and one more thing,we also did an ECHOCARDIOGRAM,to check iron depositing in heart,though i don't know how much effective it is in locating iron or if it's done just to check that heart is functioning properly,but since Ferriscan or SQUID isn't available here,this was our only choice,anyways here are the interpretations of ECHO.
STRUCTURAL INTERPRETATION
Normal LV size and function
Normal mitral and aortic valves
Normal sized RV
Normal pulmonic and tricuspid valves
No ASD and VSD seen.
COLOR FLOW
No flow abnormality seen.
P/W DOPPLER
Flow velocity across mitral valve(Diastolic)E=1.14m/s.
A=0.77m/s.
Estimated RV/MPA pressure 20 mm/Hg.
CONCLUSION
No significant cardiac structural or flow abnormality seen.
So i am not sure about the scientific terms ,but conclusion says everything is normal,anyways,what do you people say? Andy?any comments will be appreciated.
TAKE CARE,
ZAINI.
-
HI Zaini,
The echocardiogram results are very good. Zainab's heart is working fine right now. Chelation compliance will help keep it that way. You are correct that this will not show iron deposits, but it does show heart function and it is why the echo test is recommended annually for thals. Diminished heart function and blood flow will be early signs that chelation intervention is needed, so it is very important to have this test done yearly, if at all possible.
I agree that you need to watch her calcium levels, although she is currently within range. Calcium and magnesium work together to create proper heart function so it is always important to make sure that neither drops into the low range. A supplement will help but also make sure she is following a nutritious diet and eating her veggies. Dairy products are also a good source of calcium.
-
Hi Zaini,
These are pretty good results compared to the average Thal. in Pakistan. This shows that you are a good parent and keeping up with the recommended treatment. I've seen small children that have developed heart disease due to lack of compliance with the chelation therapy.
Don't worry about the ALT much as it tends to be a bit higher in Thals.
Keep up the good work and stay faithful to the iron chelation and timely transfusions.
-
Thanx Andy and Sajid,
Your kind words encouraged me a lot,i am happy that her heart is functioning normal ALHUMDULILLAH,though i am a bit worried about her liver iron,and i don't wanna go through liver biopsy,but hopefully we'll be planning a visit to Saudi Arabia next year,i think i'll get her ferriscan done there, i believe it's available there.
One thing more, zainab's hemo suggested an yearly eye check up also,we did it and according to the eye specialist her eyes are fine.
I am really happy and grateful to GOD.
Wish you all good health and happiness.
ZAINI.
-
Zaini,
You are a good parent and doing everything possible for Zainab. As far as the annual check up is concerned we think there is a comprehensive guide available at TIF website below. You can also order free publication from them.
http://www.thalassaemia.org.cy/
Your idea to get a ferriscan from Saudi Arabia, just check if it is available there and a non-residents can actually do a test there. I am not sure if a visitor can go there and do a test in Saudi Arabia, there are some medical boundaries there. I would go for liver biopsy first and there is no harm in doing ferriscan afterwards.
Regards
-
Thanx Canadian Family,
For your really kind words,it's always good hear the words of appreciation,it encourages you and urges you to do more and more.
Yes you are right about Saudi Arabia,any guys from Saudi Arabia can help me out here? Is it really impossible for a non-resident? no chance?
Anyways,is it possible that one can avoid liver biopsy if ferriscan is available?Is it also impossible in Canada for visitors to get ferriscan,we can also come to Canada if it is available there and if there are no visa problems.
TAKE CARE,
ZAINI.
-
Hi Zaini
In order to visit Saudi Arabia, either your father, brother or husband will have to have a permanent visa. Although in the first two cases acquiring visit visa`s is complicated but not impossible. Once you are here you will be eligible for treatment as long as you pay for it. I don`t know if ferriscan is available but Saad Speciallist Hospital in Dammam is supposed to be the best in the Kingdom. However they scared the living daylights out of me when they suggested bone marrow aspiration for Hassan. I thank my lucky stars that their hemo paed was on vaccation and they couldn`t register Hassan. All he needed was a CBC to be repeated. The bigger the hospital the more complicated the treatment. I hope you got my point.
bye
maha
-
Thanx Maha,
This information is valueable,we were thinking of visting K.S.A for umrah, so i though we will get the visa for riyadh or dammam,but now i think it's not possible if they don't allow visitors to have medical facilities .
Thanx again,
ZAINI.
-
Yes Zaini
If you are planning on a umrah your parameters are limited to Jeddah. You cannot travel beyond Jeddah.
regards
Maha
-
Travelling in K.S.A wasn't easy in my days too. We couldn't leave the city without the letter of the sponsor. We were advised to go for a better treatment center but couldn't because of this reason. :-\
-
Zaini,
Can you do a ferriscan in Canada, the answer is yes you can. Visa may be a problem but can be resolved. However, remember that the cost of seeing a doctor, getting a ferriscan done and follow up visit could cost more than your return air ticket. You can contact Hospital for Sick Children, Toronto for further details.
www.sickkids.ca
I say if you really want to do a ferriscan than a site closer to you can be a much better option; like somewhere in the Far East.
Regards.
-
Cost is a big problem ofcourse,I think ferriscan is available in India,and India is nearest to us,let's see what can i do,how further i can push my hubby to spend,Let's pray,and thanx for all your replies.
LOVE ALWAYS,
ZAINI.
-
hi!
Great to hear that zainiab is doing good keep up the good work.... one question though for newbies like me :idunno- what is ferriscan? has it been discussed before - can you give me a link....
-
Ferriscan is a method of determining liver iron concentrations through the use of an MRI. The Ferriscan software works with most current MRI machines and delivers a very accurate measurement of liver iron concentrations throughout the liver.
You can read about the process at http://www.resonancehealth.com/rh_resonance--FAQ
Locations where Ferriscan is available can be found at
http://www.resonancehealth.com/rh_findcentre--FindCentres
You can also request that your local hospital contact Resonance Health.
Your center can contact them using the information below.
http://www.resonancehealth.com/rh_ferriscan--MRICentreInfo
If you are interested in offering FerriScan at your centre simply complete an MRI Centre Expression of Interest Form.
Alternatively, if you would more information please contact us by email; info@ferriscan.com or call +61 (0) 8 9286 5300. Australian residents can call 1300 554 784.
-
oh - thanks Andy.....
-
Hi Friends,
I wanted to ask something,what would happen if a person has high platelets?though an online search told me that it can cause thrombosis,form clots when not needed.Actually i am a bit worried about Zainab's platelets count,i was observing her CBC reports since last three months,and it seems like her PLT conts is increasing.
In August her PLT count was 322x10E9/L
In September her PLT count was 366x10E9/L
In October her PLT count is 399x10E9/L
Since the normal ranges are between 150-400, 399 is the borderline i think,should i be alarmed? Is there anything wrong? Other then Platelets all her blood counts are fine,but i am a bit scared regarding Platelets,does this indicate anything about spleen?
Anxiously waiting for youe replies.
ZAINI.
-
Hi Zaini,
Ask your doctor about the use of Warfarin or Asprin to treat keep the blood thin so that the clots don't form. Heparin is used as an injection in emergency to rapidly treat blood colts.
Tell me what you have been doing to increase the PLT counts :biggrin I DESPERATELY need to get them up within the normal range. :wah
-
The high end of normal for platelet counts is in the 400-450,000 range so Zainab is within this. Please understand that this is the NORMAL range. It is not until platelets get significantly higher, that problems may occur. I know of cases where the platelet levels were double this with no real problems developing. However, to help keep them in check, make sure Zainab is taking vitamin E daily. Use the natural type of vitamin E. If it says d-alpha, it is natural. If it says dl-alpha, it is synthetic E and not as effective. It is best that E be taken as mixed tocopherols so that the full benefit is realized. Aspirin is also a blood thinner and taking one tablet per day can help keep the blood thinner. Your doctor will not prescribe a blood thinning drug as long as the platelet count is anywhere near the normal range, as these drugs, as most drugs , do have side effects. It is much better to use vitamin E and aspirin to keep the levels within a normal range.
-
Sajid,
I stumbled across some information while researching about low high platelet counts. I don't know if this could be a contributing factor but it may be worth asking your doctor to check.
From http://www.medscape.com/viewarticle/490173
Successful eradication of Helicobacter pylori infection results in significant platelet recovery in 56% of patients with chronic idiopathic thrombocytopenic purpura (ITP)
It has also been found that H. pylori is found more often in thal majors than in the general population, so it may be worth having checked out.
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&list_uids=16292091&cmd=Retrieve&indexed=google
CONCLUSION: The high prevalence of H. pylori infection suggests that H. pylori should be remembered as a probable cause of RAP (Recurrent abdominal pain) in beta-thalassaemia major patients.
H. pylori is a bacteria that has also been implicated in ulcers and is treated by a combination of two antibiotics.
Prednisone is also sometimes used as a temporary measure to increase platelet counts as it will reduce the destruction of the platelets in the spleen. Prednisone helps counter the overreaction of the immune system, which is responsible for the hyper destruction of platelets in the spleen.
I will continue to research this topic and will report if I find anything that may help boost your platelets. If the spleen would only behave, the lives of thals would be greatly improved.
-
Thanx Sajid and Andy,
For your prompt replies,Sajid dear i am using absolutely nothing to increase her plt counts,it seems like it decided to increase on it's own accord,i am sorry that your plt count is low,they don't have any med to increase it? between i just checked Zainab's vitamin syrup,there is no vitamin E in it,i'll search for it,between i remember when i had that foot-swelling-high-uric-acid episode,i asked doctor should i be taking a blood thinner like Vitamin E,and he was like :o "who told you Vitamin E is a blood thinner,it's not a blood thinner"i mumbled something about reading it on internet (didn't wanna argue with him ), and i am happy that zainab is still in normal range,though i'll keep a close watch on her next CBC.
One thing more,what would a cause a raise in platelets counts?such in zainab's case?
ZAINI.
-
Not only is vitamin E a blood thinner, as is aspirin, but surgeons will require a patient to stop E and aspirin at least one week prior to surgery, as they may inhibit the clotting necessary after surgery.
Neither are strong blood thinners, but both can help if there is any danger of clotting, so they are often recommended for thals who have high platelets.
-
Most western medical sources say there are no foods to benefit platelet production, but I did find this article that give a list of foods that supposedly will help.
http://www.bawarchi.com/health/queries53.html#10
Question: What are the natural food items that can help me increase the platelet count in my blood.
Ans: Foods such as drumstick leaves, fenugreek leaves, amaranth, Bengal gram whole, green gram whole, liver, egg yolk, spirulina, citrus fruits, amla will help to increase the platelet count.
I don't know if they can help but it might be worth a try, as the ultimate remedy is a splenectomy and I know you're trying to avoid that.
-
Hey Sajid,
Go get started with the list :wink I wish you the best :hugfriend.
ZAINI.
-
Sajid,
Beware of the drumstickleaves though I have heard they are rich in IRON and you certainly don`t want anymore. :biggrin
take care
MAHA
-
Hello everyone,
Thanks a lot for all your valuable replies. Andy, I will definitely ask my doctor about Prednisone and the list mostly consists of green leafy vegies which someone already told me about and the reason for them was that they contain Vitamin K. I know these are rich in Vit-K but their quantity is measured in micro grams (even thousands of mcg) which is far less to the 10mg pill that I take everyday. Thanks for your valuable research and I will definitely have a talk about it with my doctor.
By the way, I was called for Transfusion today on SUNDAY!!! as the Thal. Center will be off due to EID holidays approaching. Anyway, my Platelets have increased to 119/(whatever) :biggrin even though I had couple of episodes of nose bleeds between the last Tx and this. My doctor was pretty happy to see this and so am I! :grin
-
Sajid, best of luck keep them up
Zaini, don't worry Ahmad had some fluctuation in his PLT count that ranged from 350,000 to 550,000 last winter and the doctor told me as Andy said to give him Vitamin E and that was to make me comfortable and told me that she will start to worry if the count exceeded one million
Manal
-
Thanx Manal,
for comforting,
ZAINI.
-
Hi,
I think i mentioned it somewhere on this forum a few days ago that zainab was complaining of pain in her heels,not ankles or joints but heels,and it got stopped for a couple of days but then she started complaining again and now she complains as often as twice a day, since doctors here say that pain in heels is an indication of low calcium,i got her calcium levels checked,it was 8.8,same as last checked in june 2007,no increase no decrease,the normal levels start from 8.6,so,could that be the cause of her pain?or anything else?did somebody else ever experienced that kind of pain?
Waiting for your opinions.
ZAINI.
-
Hi Zaini,
Are you giving Zainab vitamin D with the calcium? Vitamin D is necessary for the calcium to be well absorbed.
-
Yes Andy,
She is taking her 400 units of Vitamin D daily,anything else you can think about? which might be the reason.
ZAINI.