Ringing in the ear -

[caraiti]

 Just to let you know what I have been communicating about on Thalpal....

I have had the ringing for over 6 months and have approached my GP as I was worried. His reply was turn the radio up. Talk about dumb.  I have even approached a few haematologist as I hadn't seen mine for awhile and they sort of dismissed it when I  asked if the desferal could be doing it.  Now I'm really upset. There are times when the ringing is loud and high pitched and times when it is there but not as annoying.
Caraiti

REPLY
It is too bad that your hema has ignored your concerns about the ringing in your ears.  This is the first sign of desferal toxicity.  It does not mean that you cannot use desferal anymore, it just means that under doctor supervision you may need a small break from it.  Are you on combination therapy?  Sometimes, in these cases it is a good idea to use another chelator for a short period of time until the toxicity clears up.
Best of luck,
Sharmin

Thanks Sharmin,
My Haematologist  has noticed that I seem to exhibit signs of being allergic to it and we have discussed the possibility that maybe long usage over the years may have caused this. At this stage there is no other chelator I can use. We have tried to get the oral tablets but to no avail.
I will be emailing a copy of this issue to her as she seemed to think that desferal does not affect the ears. This however confuses me as when I was accidently overdosed, I was admitted for obs because I could become blind or deaf. Lucky for me, my ferritin was high so I was very lucky.
Caraiti

REPLY
Caraiti
Would there be any interest from your health agency in importing Osveral (equivalent to Exjade) from Iran? The price is much lower than for Exjade and probably even lower than the price of desferal. It would be possible to arrange if the New Zealand health authorities are willing.

REPLY
It's called Tiniitus. I have them since 2 years, and yes I HATE them too!
It's a side effect of the anemia (If this good English). There is nothing you can do about it. There is no cure; they even dont know what it is exaclty. That's why i dont want a cure for my rare anemia, but a cure for tinnitus.
I know a lady who has much more worse tinnitus than me. She turns a fan or a sound machine on when it is time to sleep. She still suffers from insomnia. Mine tinnitus is getting worse so I probably will use those things when it is getting autumn.
I know this information won't help you a lot, but it is a common problem! 
Best wishes, Dore
p.s. They test my hearing in December. First I had excellent hearing, now it is good. But that's more the age than tinnitus - they say.

After emailing my specialist this is her reply.
Dear Caraiti, You are in trouble all around….I shall get you an urgent ear consult….perhaps you should stop the desferral but where does that leave you!!!
The government have turned down my application for Exjade again!!!!!!!!! I am going to get very angry with them…and will involve the Leukaemia and Blood Foundation to help you;
We need to have  a meeting about your case…you will need to tell me how you feel about any publicity, or we can keep it private….
I am so sorry Caraiti
Clinical Assoc Prof Hilary Blacklock

And now we are up to date.
I will wait for specialist reply regarding medication from india whether this is an option.
Publicity may be a good idea as it will not only assist me with the medication (cross fingers) but also highlight Thalassaemia.
I will let you know how we get on.

[thalatrait]

Thank you for this great post! I would like to share it with others! But how can desferal cause tinitus?

[caraiti]

Hi Thalatrait
it is great to hear from you as I have been wondering how you are.
You can share this with who ever you like. I have no problems with that. hehehe
As for your question.... They say that desferal used over a long period of time can cause toxicity which can cause all sorts of problems. As ears are a part of your body, it can affect your hearing just as it can affect your eyes and can cause blindness.
Considering I have been using desferal for 25 years...... Toxicity can become a reality.
As we dive deeper into this issue I shall let you know what I found out and correct any misinformation I made have given.
Take care of yourself
Cherie

[caraiti]

I still have the ringing in my ears and at times it is quite annoying, especially when I am trying to sleep.
And are waiting for my next appointment on Wednesday when we will look at other ideas.
I have not forgotten you guys but I have been pretty sick trying to keep my chin up, energy and work has me so exhausted that when I get home all I want to do is sleep.
One of my transfusion saw my haem drop to 86 so I had 3 bags each about 300ml and a week later I was still not my usual self so I had another transfusion 4 weeks later which saw my haem on 100.
That had me concerned as my haem in not normally at that level after 4 weeks. With the hydroxurera my haem normally is at 100 about 5 weeks. I was also concerned by my blood pressure was 60 over 40 a week after a transfusion. It is normally low but not that low after a transfusion.
At the moment I know I am concerned about alot of things that are happening and although I keep my spirits up as best I can, I still can't switch off my worries and concerns.
Having my family and friends around help alot and help me to stay focus on what I want and need to acheve. Chelation is top most of my agendas and everything after.
Below is a post regarding the upcoming appointment with my specialist that I posted 3 weeks ago on thal pal.
Now you are up to date until Wednesday's appointment.
 
Hi everyone. I have just had an appointment with my specialist today and we discussed the exjade funding.
There has been no success and we are still at the beginning.
I have continued with chelation in my legs but both are getting so sore that I have started limping.
At times the heat and pain from the needle sites are extreme that I just sit with legs out stretched.
The port is not an option at the moment as I'm not handling the irritation of my port very well. Three hours into the chelation and I'm ready to rip the needle out.:cry: We will be meeting next month to have a sit down and discuss our options.
Apparently I need to have my port taken out and a new one inserted and have that used before it is noted that we have exhausted all avenues. My thing is that this is port number three which is working well for my bloods and that I wouldn't want to go through the process of having a new one inserted that may not even work or that gets infected. Since stopping chelation through the port, I have noticed that I don't have any port infections and that I don't have any problems with it.
This is just more issues that my specialist, haematology nurse and myself will be looking at next month.
Wish me luck.

Take care

[amanda]

Good Luck with your chelation. Hope that you could overcome everything. Thank you for keeping us in touch with your condition. We all pray for you. You can do it. With our prayers and your courage you really can make it. God bless.

[caraiti]

Thank you, I'm doing my best