Wish us luck !!

Zaini,

In reference to little Z's parathyroid level, what is her vitamin D level? This has much to do with the function of the parathyroid.

Andy,

We didn't do Vitamin D test at the same time,but when checked last time i think a couple of months back it was 18,and her calcium was also normal low,so i think it effects PTH?

Zaini.

If the vitamin D level is not at least 30, the parathyroid hormone level may be affected.

http://www.clinlabnavigator.com/Tests/VitaminD.html

A 25-OHD concentration of 20 ng/mL is adequate to prevent rickets and osteomalacia. However, a recent editorial in JAMA (292:1416-18, Sep 22/29, 2004) stated that some individuals with a 25-OHD level of 20 ng/mL already exhibit compensatory increases in PTH and suggested that a 25-OHD level of 30 ng/mL is necessary to maintain normal levels of PTH.

I think getting her D level is the real key to controlling the PTH.

Thanks Andy,

We are working on it,she is taking One Alpha .25 mcg daily,which is activated vitamin D3.

Zaini.

Zaini Sis,
i hope everything is fine now at ur and Lil-z is doing fine  ...  wishu and lil-z all the best

best regards
umair

Thanks Umair,hope you are doing well and enjoying Ramadan .

Zaini.

Hi Zaini,

I hope that everything will work out well for lil Z.  I think that vitamin D will be very helpful.

Sharmin

Thanks Sharmin 

In last month Lil Z's SGPT raised to 231,Asunra was stopped for a week,SGPT recheckd,came back 66,her hemo asked us to resume 600 mg of Asunra,now after 15-16 days,means yesterday,she had a transfusion and we rechecked SGPT and its again 127,:( i really don't know why it keeps raising again and again and what can i do to stop that.

I don't know what her hemo would say,would she let us continue Asunra or not .

Zaini.

Hi Zaini,

I am not sure what the right answer is to that.  When lil A's SGPT rose the docs in Oakland said that it was not significant and over time (even though we did not change his exjade dose) it returned to normal.  It is hard to know what will happen over time because now lil A is on 1000mg of exjade a day (5 days a week) and 625mg a day for 2 days.  We will know after Tuesday what his latest value is.

I hope that lil Zs levels will return to normal on their own, please let us know what the doctor says,

Sharmin

Sharmin,

The reason the doctors were not concerned is because these small increases don't imply any danger. At levels of 5 times normal for SGPT, doctors will stop Exjade, or sometimes just lower the dose for awhile. With serum creatinine, Exjade will be stopped when there is a 33% increase in adults in creatinine two readings in a row. In children, two creatinine increases in a row will result in a lowering of the Exjade dose until it resolves. I look at 300 as the borderline for SGPT. At this point, the Exjade dose should be reduced until the SGPT drops back to normal.

Zaini,

127 is not high enough to force Exjade dose reduction. Please make sure little Z is getting plenty of water daily.

Thanks Sharmin and Andy 

Lets see what her doctor has to say about that,i have to inform her and she'll be available on tuesday.

Thanks again,

Zaini.

AOA Zaini sis,
Wishing all the best of luck to Lil-z ...

lots of god wishes
and best regards
umair

Thanks Umair

Best of luck to lil Z, Zaini.  I hope that all of her levels are good and that her ferritin levels start coming down very soon. 

Sharmin

Thanks Sharmin,

I really hope that her ferritin will come down,so that we'll be able to go with a lower dose of Asunra,which will be less side effects and more economical .

Zaini.