Can Anyone Help me???

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Can Anyone Help me???
« on: July 06, 2007, 05:51:21 AM »
Hi Everyone,
Any feedback with be greatly appreciated as i Really need some advice................................
well i saw my haemo doctor yesterday & i told him i want to at the end of the year try for another child ( i have thal major and already have 1 child whos 3) he said i shouldnt do this as Thal patients are lucky to have one child let alone 2! my health is reasonably good he says my heart & bone density is as normal as they can be for a thal major patient.The only thing is my ferritin level is alittle high and i need to get it down which im now trying to do.can anyone shed some light for me how high was their ferritin level when they were trying to concieve? my doctor tried to tell me that basically it wasnt good to have 2 kids and then i want be around to see them grow up!
also im trying to get my ferritin down as quick as i can any suggestions that would help? im currently on exjade at the moment & generally how quick does ferritin levels drop?

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Offline Manal

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Re: Can Anyone Help me???
« Reply #1 on: July 06, 2007, 12:35:06 PM »
Hi Sydneygirl

Sorry i don't have much information for your questions, but i hope you all the luck for what you choose.
my doctor tried to tell me that basically it wasnt good to have 2 kids and then i want be around to see them grow up!
What i want to comment on, is that the issue of life and death has nothing to do with illness. It is something that is not associated with one's health and i can give you millions of examples that don't go with the human logic, i just have one relative who passed away(28 years & having two kids) and he never ever had any sort of illness. The only thing he had was common colds. At the same time, many thal majors  mothers has two kids and i think there are one or two members here who have more than one child.

So do your homework, lower the ferritin level, make sure that the heart , liver, bones and what ever needed for pregnancy are in a good condition and leave the rest for God who will take care of you. Who knows may be in few years will come the cure that we are all waiting for.

Anyway, my opinion is not to let someone who does not know his own future  jugde yours. So Sydneygirl, i wish you all the luck and please know that we all support you in any thing you find suitable for you and your family :hugfriend :hugfriend

Manal

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Offline Gabri

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Re: Can Anyone Help me???
« Reply #2 on: July 06, 2007, 09:31:58 PM »
Hi sydneygirl,

as i know there are many thal major having one ore more children.
It is very important to lower your feritin the most you can, because you can't take iron chelators during you are pregnant.

I know that dani75 has 2 children, maby she can answer your questions.

For my opinion if your health is good there is no reason why you should not to get pregnant.

What level has your ferritin and how much Exjade does you take dayly?


Re: Can Anyone Help me???
« Reply #3 on: July 07, 2007, 01:33:20 AM »
thank you manal & gabri,
for your words of encouragement they have made me feel better since talking to my doctor.
gabri to answer your question im on 1000mg a day (2 tabs) of exjade but my doctor has now put me upto 3 tabs per
day.(which i havent started yet) and my ferritin is 3600.thank you once again.

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Offline Smurfette

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Re: Can Anyone Help me???
« Reply #4 on: July 07, 2007, 03:39:06 AM »
Hello Sydneygirl!!!

I cant believe that he said that to you.... I know you!! And I know that you are a determined young lady...

Having another child is your choice and not his...I am sure that you will do what ever it takes to get your ferritin down...

Stick to your guns sweetie.

Take care

Re: Can Anyone Help me???
« Reply #5 on: July 07, 2007, 06:41:20 AM »
yeah smurfette,
ive think thats true its my choice & with the help of everyone on here also,i think if my health is good i will do it,i think life is too short anyway.thanks again everyone who responded,i really needed the help!

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Offline Miaki

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Re: Can Anyone Help me???
« Reply #6 on: July 07, 2007, 01:37:44 PM »
Hey Sydneygirl,

Good to hear you are doing well.

I think that if mentally, physically and emotionally you are ready to have another child "you go girl". I know of Thal Major patients (females) who have had  2 and 3 children. They all carried well and delivered normally. I know everybody is an individual so you do what best suits you.

Take care and let us know how you get on.

Miaki xx

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Offline Danielle

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Re: Can Anyone Help me???
« Reply #7 on: July 07, 2007, 08:04:13 PM »
I know a few Majors personally who have conceived more than one child.  It can definitely be done.  Don't let that doctor discourage you.  If you really want another child, try to get some opinions from other doctors.   :hugfriend

As for the Ferritin, have you talked to your doctor about using Desferal for a while, until it comes down?

Re: Can Anyone Help me???
« Reply #8 on: July 08, 2007, 03:15:17 AM »
As for the Ferritin, have you talked to your doctor about using Desferal for a while, until it comes down?



hi danielle, in regards to your question which you asked me above,you mean desferal with the exjade? i asked my doc that.He was hostile when i asked him & he just said i cant prescribe you that & he more or less said i would have to take the blame if i wanted to do desferal & exjade togther as if i had a reaction it would be blamed on him! he said if i wanted to take both togther he doesnt want to know! that was the advice given.

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Offline Danielle

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Re: Can Anyone Help me???
« Reply #9 on: July 08, 2007, 03:29:41 AM »
Geez, he sounds sweet.  :rotfl  I understand him not wanting to prescribe something without understanding the side effects, but he didn't have to be hostile about it.  :rolleyes

I know it's a pain in the butt, but have you thought about switching back to Desferal and holding off on the Exjade for a while?  In my experience, with myself and hearing from others (Thals and doctors), Desferal seems to get the ferritin down quicker when on a strict regimen.  You can always go back to Exjade if you cannot handle the Desferal.  ???  Maybe you can try that and see what happens, considering that you'd like to have another baby, sometime in the near future. :)

Re: Can Anyone Help me???
« Reply #10 on: July 08, 2007, 06:32:29 AM »
lol you can say that again danielle! he is no use the doc.
I too thought about  what you said to switch back to desferal.
my only problem was that i used to be only able to handle having
my desferal 4 nights a week max,as im allergic to desferal & have always
come out in lumps,bruises & hives.i might stay on exjade for a few months
then swap back to desferal.thanks danielle & everyone else!
 :hugfriend                 :hugfriend                             :hugfriend

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Offline Andy Battaglia

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Re: Can Anyone Help me???
« Reply #11 on: July 08, 2007, 07:01:08 AM »
HI Sydneygirl,

Since you're just starting the higher dose of exjade, you should give it some time to see if your ferritin drops. As more case studies are becoming known, we are seeing that exjade works quite well in patients at reducing iron once the 30 mg per kg body weight is reached. Recent reports concerning exjade have been very encouraging and more doctors are now realizing that it is advisable to start on lower doses and slowly work up to the maximum dose in order to minimize side effects and reactions. Of course, this advice has been given here since exjade was first approved.  :wink

I see no reason that a woman who can get her iron down and get pregnant should not also be able to carry that baby to term and have a healthy birth. There are quite a few thal majors who have more than one child and as long as you are healthy and lower your ferritin (under 1000 would be ideal) you should be able to have another.

Drinking tea with meals does help. You might also consider trying IP6, the natural supplement from the B vitamin family, that has some iron chelation properties and also protects the cells against iron damage.

Did you ever try an antihistamine like benadryl along with desferal to try and reduce the allergic reaction?
Andy

All we are saying is give thals a chance.

Re: Can Anyone Help me???
« Reply #12 on: July 08, 2007, 10:21:19 AM »
thanks Andy,
for your suggestions no i have never tried an antihistimine.....does this work? ive never heard or known anyone to do this.But im open to all my options.Today is the 1st day ive started on the 3 exjade tabs per day,i will stick with this then see how it goes.One other question andy....when trying to fall pregnant how long before should you stop exjade and go back onto desferal? thanks again.
sydneygirl :)

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Offline Zaini

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Re: Can Anyone Help me???
« Reply #13 on: July 09, 2007, 08:47:07 AM »
Hi Sydneygirl,

Wishing you all the luck for your next pragnancy,i don't know why your doctor said that,we havr members here on site with two kids,i wish doctors can be a bit more supportive.

LOVE ALWAYS,

ZAINI.
^*^Xaini^*^

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Offline jzd24

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Re: Can Anyone Help me???
« Reply #14 on: July 09, 2007, 02:42:23 PM »
Sydneygirl,
     So sorry you have to be the victim of a rude doctor. That is so upsetting. Follow your intuition and heart, and do what you can to make this happen. One small bit of info., I was drinking tea with every meal for a long time, then for some silly reason, I just didn't for awhile, and my ferritin level went up 200 points, degrees, milligrams, I don't know what you call them. I know it wasn't just from the tea, but I think tea does really help. I was also eating artichoke salad then found out artichokes are very high in iron.
     Anyway, good luck in having another child. Jean

 

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