My haemotologist update

Last week I had 3 units of leukocyte depleted.
My Haemoglobin had dropped to 88. Not good but look at the positive that it wasn't too bad after 8 weeks. That is two months  My Dr is hoping that the Hydrea is helping me prolong.
The other positive was that my ferritin has come down to 3,800. Still high but last time it was 4,000.
The good news is that it is coming down and not staying up  I had to have a little yeah!
My Dr had given me clearance to try IP6 and I took my first tablet that night.
Dr Blacklock got me to sign the forms she is sending in to the government which is asking them to subsidized the chelation tablet exjade. She was informing me that Thalassaemia is still classed as rare in New Zealand because there is only 9 reported cases of Transfusion dependent Thalassaemics. In other words the government might not think it important enough to subsidized.
This is her fourth attempt. I have suggested that maybe we remind the government the long term cost of  extra treatment from failed organs. This is true because I now have diabetes, osteophorosis and tachycardia from iron overload in my tissues and organs.
Hopefully that might help them lean favourably.
Over all I am happy as I always are when I see Dr Blacklock. She is an important person in my life and after discussing my issues or thoughts I can walk away knowing that she has my best interests at heart.
I can never say this enough, but as a patient you need to have a relationship with your health carers.
It must be mutual to the point where both can express ideas and agree to the management of issues.

Hi Cherieann

 Congratulations on the drop of the ferritin, as you said it is important to know that it is decreasig. Hope that next time you are better and better. good luck in your trails with the goverment

keep us updated

manal

I'm glad that you are doing ok. Though I'm concerned about the low leuko count (if that's what I am thinking).

IP6 is a safe natural supplement. What dose are you taking? One tablet doesn't seem that much. You can safely take more.

You can read about that on the IP6 threads or Andy will guide you much better here.

Hi Cheriean :
Nice to hear that your Ferrtin levels coming down and you have got the green signal for IP6 and also nice to hear that hydrea is working for you ... keep it up ...
wish you that,  you will find exjade soon ...
Best of Luck .....

Take Care
umair

Cheriean,

I hope your ferritin levels keep coming down.  8 weeks is a long time between transfusions, your ferritin will definitely come down if you continue to go this long between transfusions. 

All the best!!

Sharmin

To Cheriean,
Im happy to hear the good news,  keep it up
Kathy

Thank you to all your replies.
Yes 8 weeks are a long time and sometimes I can quite last so I go in earlier.
At the moment I am just taking 1 tablet of IP6 a day as I felt quite ill when I took two tablets a day. Not use to them yet and with all the other meds mightn't like each other.
You are right sajid about the low haem. I think Americans would say 8.8.
Thanks Sharmin. This has been my thought for many years but I don't think the dose was high enough to make a difference.
Thank you Umair & Manal for your best wishes I will let you all know how I get on.
Kathy11 - A special big thank you for your aroha (love) in helping me give IP6 a try. Can never thank you enough or will ever forget your kindness.

Thank you to everybody for your thoughts.

Hi Cherieann,

Are you remembering to take IP6 on an empty stomach with water only? It should be taken at least 30 minutes before eating and not mixed with anything protein as it reacts with protein and its effect is lessened.

Yes Andy I am taking on an empty stomach with only water.
I take it first thing in the morning before breakfast.
As you say I wait about an hour before I eat.

hi cherian
sorry i have not been in contect. iam glade your ferritn is going dwn, i hope to meet you one day. i will keep contect