Just to let you know ... I'm happy!

Hi all,

Today I visited after four weeks my (new) internist. After the first exploratory exchanges of politeness he congratulated me with my blood reports of Monday May 11. 'The Exjade did its work, your serum ferritin came down from 920 µg/L on April 4 to 637 µg/L.'

He looked a bit surprised when I told him that I didn't start taking Exjade which was prescribed by my former internist on April 17. Just keeping to my diet and starting to use IP 6 ('huh?') But he was quite straight forward when I told him that I decided to not take Exjade until there were any results of an iron study with at least an MRI of my liver. (Ferriscan and T2* aren't possible yet in The Netherlands.) He said that this was a right decision with such a rather low level of serum ferritin. On August 20 I'm going to have my intake at the expertise center for Sickle Cell Anaemia and Thalassemia in Rotterdam. Then we're going to learn if there's any iron deposition on my organs.

Because of my very good blood pressure and great blood reports regarding diabetes and cholesteremia I could also persuade him to do an experiment completely stopping medication (i.e. metformin & atorvastatin). We'll see the results of that action  halfway September.

Thanks again Andy and others for your advice regarding not taking Exjade in the blind and the IP6.

Just to let you that I'm happy!

Regards,

Jos.-

I am also quite happy that you have continued to avoid taking drugs for what looks like a marginal problem. 

I hope further testing confirms that you are not carrying any serious iron load.

I am happy to know these results. Please keep on taking IP6 until the ferritn is normal and even onward, it is a good antioxidant

happy for you

manal

Good decision Jos, i m happy for you ..        Best of  luck for future

Best Regarrds
Umair

Thanks for the kind words.

Manal, of course I'll keep on taking IP6 and I'll stick to my diet, walking the dog, cycling twice a day for 20 minutes and using my nordic walking sticks as much as possible in the weekends!

Jos.-

Jos,

I am happy too  after hearing that ,keep up the good work 

Zaini.

Since Jos has started this topic, and because I am happy too - though for another reason - I'll announce here my MRI results I got yesterday:
T2* liver : 32,5 (normal is >19- no iron at all)
       heart : 29 (normal is>22 -no iron at all)

Though these ranges show a free from iron heart and liver, I am not going to decrease the dosage of desferal and ferriprox I take.You see, I am almost sure that if I decrease it, iron will be increased on heart and liver(I would like your comment on that).This is the correct dosage for me, that which maintains iron within normal range, in other words a non-thal's range.

Lena.

Congratulations Lena, i am really soooooo happy for you 

Lena, you are a real inspiration and a model to follow, keep up the good work
manal

 

Hi Lena,

I can't give any expert comments on your question about keeping your dosage at the same level as it was before these results, and I don't know where your MRI results come from, but these must be great results! And I can say congratulations! Great!

Jos.-

Hi Lena ,

its nice to hear this , ... you r an inspiration for other thals to controle Fe levels , i m still trying hard to get to the mark you're standing on ....  i hope to reach that mark soon i m happy to say that you're one of the inpirational thal here on this forum ... Best of Luck for the Future ..


Lots of Best Wishes
Best Regards
Umair

Lena,
That is such wonderful news!!  I am so happy for you!!
 

Thank you for sharing this wonderful news!

Sharmin 

 Thank you guys, thank you all.

I wish the same for all of you. It's nice to have this kind of encouragement from you.
The reason I proceeded to announce my MRI results was to just show you that there are no limits to what one can do if one complies. Wasn't Andy who said that we all must benefit from one another's experience?

Lena.

Lena,

Your T2* results are fantastic! I am so happy for you! 

I do have a question. Have you ever had high iron or have you always been completely compliant with your treatment?

Thanks Andy.

To answer your question both of what you said is true.
That is when I started chelation with desferal 25 years ago my ferritin had risen to 8.800 and that was normal for that time because desferal had not been circulated back then.
Imagine, I started desferal injections first and then the pump got into use. I started using the pump when my ferritin had reached 8800 and started ferriprox in 2003. Ever since, I am on combined chelation.So yes, I started with high iron because desferal was not discovered and I remember my first MRI showed medium iron heart and liver absorption.And then, I made it my point and the MRI results got better year in year out.I have always been in compliance. From the start.
And I still am, I do not relax, because the enemy is round the corner...if I may say so.

Lena.

Lena,

That's just great  i am so happy for you,i hope one day we'll have T2* in our country too,or a ferriscan.

Zaini.