Vitamin and Mineral Supplementation in Thalassemia

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #210 on: May 10, 2016, 10:54:54 PM »
Dori,

Why such a high dose of calcium? 3 grams is quite a bit. For someone your size, a dose of calcium of 750-1000 mg daily would be plenty.
Andy

All we are saying is give thals a chance.

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Offline Dori

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #211 on: May 13, 2016, 08:27:36 AM »
Dori,

Why such a high dose of calcium? 3 grams is quite a bit. For someone your size, a dose of calcium of 750-1000 mg daily would be plenty.

Thank you Andy!! It was my frist thought that the dose is set too high. I am prescribe two times three grams a day. = 6 gr.  I will try to take 1 mg every other day. My cooking weight scale can only measure grams. Does someone know a thing to measure mg with?
I  have a box with 500 grams powder. There are pills but these are not covered by health insurance. it is too expensive to pay for it myself.



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Offline Waleed

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #212 on: May 13, 2016, 02:29:34 PM »
Dori,

It is advised that magnesium be also taken with calcium. The dosage should be roughly half of the calcium dosage.
Waleed

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #213 on: May 14, 2016, 05:38:31 PM »
Dore,

Calcium citrate is a fairly common supplement. Can you find a less expensive alternative? The powder I saw on Amazon directed to take one teaspoon daily. It was also very inexpensive.
http://www.amazon.com/NOW-Foods-Calcium-Citrate-Powder/dp/B0006ZF9NC
Andy

All we are saying is give thals a chance.

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Offline Dori

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #214 on: May 16, 2016, 02:33:31 PM »
Dore,

Calcium citrate is a fairly common supplement. Can you find a less expensive alternative? The powder I saw on Amazon directed to take one teaspoon daily. It was also very inexpensive.
http://www.amazon.com/NOW-Foods-Calcium-Citrate-Powder/dp/B0006ZF9NC

Hi Andy, thank you for your help. I made a mistake in my last post. I forgot one must take it with water. So the powder I receive from my hematologist will be fine (it is covered by my insurance (the pills will not be covered). I talked about the pills because these all contain the same amount of calcium. But I found a good working scale for mg's.
So I should take 1 calcium citras, 1/2 magnesium and 800IU vitamin D. {I will take calcium citras and magnesium only every other day as I do not want to experience these side effects again).

I will also start another therapy against osteoporosis. It is called Zolendronaat (Aclasta and Zometa are other names) it is zoledronic acid. Is there anything I should know about that? Is there some pre treatment before it is started?

Please let me share something else. I had a hypertransfusion (from 7.8 gl/dl) to get me high and steady again: I feel so very great and energized! (I had been for months in the 7.8 zone as pre tx level - keep in mind I have PK Deficiency thus there exist not any protocol and I was stubborn) So please keep your hb high and steady. It is probably better for your bones as well.  :wink

I had actually declared 2016 the year of osteoporosis therapy.

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #215 on: May 19, 2016, 11:07:27 PM »
Dore,

The one thing I would suggest is raising the vitamin D dose. 800 is quite low. 2000 IU daily might be more effective for you. Take the calcium in magnesium in a 2:1 ratio if possible. Add zinc, too if you don't already take it. It is very important for the bones and the one thing recommended proven to help build bones.

The bone drugs seem to work well for some people. Some can't handle the side effects, while some do fine.
Andy

All we are saying is give thals a chance.

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Offline Dharmesh

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #216 on: May 20, 2016, 10:08:13 AM »
I felt very unwell and I could only lay down flat.
The same happens with me and it's since so many years :( because of damn weakness, low hb and breathless.
I too do the same.

Same pinch
Start listening your body, it always gives signs

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Offline Dharmesh

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #217 on: May 20, 2016, 10:12:46 AM »
Dori,

For taking precise dosage of powder, u can use spoon used by sheaf as it comes in so many size as sheaf also need to use cooking iteams in precise quantity. You can find some cooking spoon at Amazon.
Hope you will find right one 
Start listening your body, it always gives signs

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Offline Dori

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #218 on: May 21, 2016, 11:07:08 AM »
Thank you all for your help. Now I really must restart this therapy.
I really hope I will not experience side effects. Which side effects are there? I wrongly thought jaw problems were not listed as side effects but apparently they are. I will start somewhere during summer and I will receive it with big breaks in between.

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Offline Nomad

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #219 on: June 13, 2016, 09:53:02 PM »
Dori, be sure you have checked and managed all you teeth problems before starting Aclasta or Zometa. One should not have kind of big dentist "actions" like teeth extraction for 3 months bevore and after the infusion. This  to avoid necrosis in the jaw bone...

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Offline Emby

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #220 on: June 14, 2016, 07:05:36 PM »
Is there any other way of improving bone health other than taking Zoledronic Acid...before starting it.

Perhaps it was Canadian Family who managed to get their daughters T2/Z scores higher with alternative med/supplements. :heartpink
Can't quite remember.

But is there a way.

 :heartred 

Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #221 on: June 14, 2016, 08:04:08 PM »
Hi Emby,

Calcium supplements with vitamin D are helpful. The best way to improve the bone health is to exercise that put pressure on the bones, e.g. light weight training, jumping rope. For more details, please follow the link

https://consumer.healthday.com/encyclopedia/exercise-and-fitness-18/misc-health-news-265/exercise-and-osteoporosis-how-to-strengthen-weak-bones-647325.html

Hope this helps.
Regards.

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #222 on: June 18, 2016, 07:43:42 PM »
In addition to calcium, magnesium and high doses of D, make sure they are also getting zinc daily. Recent research has also shown that B-12 is essential for bone growth and strength. Thals need to be near the high end of normal for B-12. Do not settle for within range. Get the level up close to 900. The exercise route mentioned by CF has real value.
Andy

All we are saying is give thals a chance.

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Offline BabyRiya

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #223 on: July 31, 2016, 01:50:47 AM »
Will 1 ml of a good multivitamin be good for a 16 month old baby?

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Offline Andy Battaglia

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Re: Vitamin and Mineral Supplementation in Thalassemia
« Reply #224 on: July 31, 2016, 11:17:01 PM »
Can you post a link to the multi?
Andy

All we are saying is give thals a chance.

 

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