Repliva 21/7 and Thal

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Offline gms

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Repliva 21/7 and Thal
« on: August 08, 2007, 09:46:48 PM »
I am new to this online support forum and have a question. I've known i have had Thal Minor for years now and just did not take it serious.  I am very active, overall great health, never been overweight, exercise regularly, and eat very well.  I feel generally vitale and strong everyday.

Recently i have had bouts and symptoms from perimenopause. My OB/GYN wants me to take Repliva 21/7 tablets for two months for Anemia due to blood loss from Peri-menopause. Blood loss has stopped for over one week, and my blood test results came back very low in IRON, thus doc gave me Rx for Iron Therapy treatment.  I informed the doc that i am Thalassemia Minor and he stated Repliva would be fine to take even w/Thal Minor.

Immediately after leaving doc's office I called my sister, who also is Thal Minor. She informed me that her OB/GYN told her NEVER EVER to take iron supplements w/Thal Minor!  What's a woman to do??? Is this true?  Or are we going off the deep end over this thing?  Should i consult my blood doctor over this treatment? Please advise.   Impatiently waiting...   :(

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Offline Andy Battaglia

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Re: Repliva 21/7 and Thal
« Reply #1 on: August 08, 2007, 10:15:09 PM »
Hi GMS,

Whether you need iron is determined by iron studies. If your hematocrit or hemoglobin level is low, it is NOT an indication that you need iron. The only certain method for determining actual iron levels are iron studies, specifically a serum ferritin test. Find out how the doctor determined your iron level. If iron studies have not been done, request at least a serum ferritin test before taking iron supplements.

While it is true that most thal minors do not benefit from iron, sometimes minors do become iron deficient. In your situation, this may be true, but you should verify that your iron is actually low before proceeding.
Andy

All we are saying is give thals a chance.

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Offline gms

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Re: Repliva 21/7 and Thal
« Reply #2 on: August 08, 2007, 10:53:45 PM »
Andy, my doc took tests below (results).  Would these be enough to prescribe IRON THERAPY?   Should i consult w/my hemo doctor over this, Andy?  Again, w/Thal Minor not sure taking three months of Repliva will be fatal or not.  I want to be very sure before filling an Rx for iron as doc states it is very powerful Rx.  Please advise, and thank you.

TEST NAME: IRON & TOTAL IRON BINDING CAPACITY
IRON, TOTAL  = 18L
IRON BINDING CAPACITY = 390
% SATURATION = 5L

TEST NAME: CBC
WHITE BLOOD CELL COUNT= 5.3
RED BLOOD CELL COUNT= 4.07
HEMOGLOBIN = 9.0L
HEMATOCRIT = 27.7 L

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Offline Andy Battaglia

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Re: Repliva 21/7 and Thal
« Reply #3 on: August 09, 2007, 02:05:07 AM »
Hi gms,

Your test results are consistent with iron deficiency anemia. Your hematocrit and Hb are both below what a minor should normally have, and your iron level is quite low, while your TIBC is high.

How you should proceed is ultimately up to you. Repliva 21/7 is a very strong iron supplement and the intention is a quick replenishment of the body's iron reserves. The need for this is debatable and I would say has much to do with how you feel and how well you are coping with your low iron levels. Many people have digestive systems that cannot handle large doses of iron. Bloating and constipation are common. Speaking from the point of view of one who had a hematocrit of 25 after bleeding for 12 hours after a surgery, I will say my own preference is altering the diet to ensure a high intake from foods. I tried low strength iron pills and the bloating was horrible. I finally made some dietary adjustments, which led to the highest hematocrit I ever have had (48). This was done on a vegetarian diet. It can be done through diet if you are willing to take a few months for your body to absorb sufficient iron. However, if your blood loss is still an ongoing problem, you may find it necessary to supplement. Even if you do, you may decide to take a lesser dosage than what is found in Repliva 21/7. I do not think that 3 months of Repliva could possibily be fatal. Since the normal course is one month and then further testing, I would not agree to a 3 month trial, without ongoing iron studies.

For your own case it would be very good if you had a prior CBC that shows what your normal hematocrit or Hb level was before the onset of perimenopause. It would be very good to know as a reference point so that you don't continue an iron supplement past the point where it can do any good because of the limits of your thal minor. For example, if your normal Hb level was no more than 11, it will do no good to try to push it beyond this point. Iron will not help and can cause harm if taken when not needed. I would suggest to talk to your hematologist before beginning iron supplementation. Most doctors outside the field of hematology do not have an expansive knowledge of thal so it would be very advisable to talk to one who is, before embarking on an iron supplementation program.
Andy

All we are saying is give thals a chance.

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Offline Courtenay1826

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Re: Repliva 21/7 and Thal
« Reply #4 on: August 09, 2007, 02:28:57 AM »
Hello!

I am Thal Minor, also with Iron Deficiency - and I've been on Repliva for a year! Without it, I become very lethargic and sallow skinned. However, iron supplements are very overprescribed in Thals, and may do  a lot of damage in heavy doses  over a long period of time, and is especially detrimental in Thal Intermedia/Major.

I have to add - Repliva is a chelated iron supplement. My hematologist explained to me that the process removes a lot of the heavy irons, which are the most damaging.That having been said, I still recieve  monthly kidney  and liver function testing via blood draw, and they watch my serum ferritin VERY closely.

I would try it for a month, and see if it helps. I have not had any very bad stomach side effects from the Repliva, and I have  LOTS of problems digesting red meat (heavy hem, heavy iron)

Please make sure they monitor your kidney and liver function and serum ferritin during this trial if you choose to go ahead. Good  luck!



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Offline gms

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Re: Repliva 21/7 and Thal
« Reply #5 on: August 10, 2007, 10:06:00 PM »
Thank you for the prompt replies.  Andy, do you have a reference book or website I can use for the veg diet you mention in your reply?  I would like to see what foods are best to increase iron in my diet.  I have already printed gobbs of other iron rich diets, but most of these reference liver, red meat, greens, fortified cooked cereal and such.  It would be nice to know what you did to get such high counts.  I feel pretty good today, however, that comes and goes in waves but am up and about & back to work.

Also, i am going to visit my docs next week to gain confirmation on all of this and also to continue routine blood draws if indeed i go ahead w/iron therapy via Repliva.  I will keep you posted.

Thanks again for all the information, this site is INVALUABLE to me and I will continue to report back.  God bless, --gina

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Offline Andy Battaglia

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Re: Repliva 21/7 and Thal
« Reply #6 on: August 10, 2007, 10:25:55 PM »
Hi Gina,

We have a previous thread about reversing iron deficiency with a vegetarian diet at http://www.thalassemiapatientsandfriends.com/index.php?topic=230.0

One very important thing is to avoid foods that are low in nutrition. They basically will add to fatigue. I will also like to reinforce that I do believe the use of the wheatgrass extract has made a big difference in my energy level. Also, if you are not already taking it, start taking folic acid, which helps build red blood cells. It is essential for anyone dealing with thal at any level.

Andy

All we are saying is give thals a chance.

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Offline gms

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Re: Repliva 21/7 and Thal
« Reply #7 on: August 11, 2007, 03:54:51 PM »
Andy, is there any way we [you/i] can converse offline via email?  I have a confidential question i'd like to ask you but would prefer to do so in the privacy of personal email coorespondence.  Please advise.....  and thank you so so much; this is an unbelieable forum!   I have learned so so much and appreciate all the insightfulness and knowledge you bring to all of us.  :)

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Offline Andy Battaglia

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Re: Repliva 21/7 and Thal
« Reply #8 on: August 11, 2007, 04:19:49 PM »
Hi Gina,

If you click on a member's name you will see their profile and from the menu on the left you can send personal messages. If you need any help with it, let me know.
Andy

All we are saying is give thals a chance.

 

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