newbie

greetings thal pals,

just joined forum yesterday!!!! finally i'm going to do take care of my slight anemia problem i've suffered from since childhood. turns out 1 of my aunts has thal minor. i recently finished my 2nd battle fighting hepc & am 5 months undetected. !!!!!! LIFE IS GOOD!!!! prior to treatment was tested for hemochrotosis due to ferretin levels of 2000. the results came back negative but suggested i may have thal minor. of course hepc dr. insisted i get rid of virus & ferretin would level off. well of course it didn't & although i was only stage 1 my alt is still slightly elevated. finally dr. agreed to blood let for my ferretin was 720 at end of treatment. after blood letting 1/2 pint i went down to 620!!!!!! am seeing dr this thursday & need some advice as how to proceed w/ this. i must also add i feel so blessed that i never became cirrhotic w/ both hep & thal!!!!

to begin with here's some of my latest blood results; hgb=10.5, ast=36,alt=51, iron saturation=42, iron serum=148,,ggt-31,wbc=5.1,rbc=4.6,hematocrit=32.7,mcv=71,mch=22.7 and rdw=16.3.

while on hepc meds my hgb dropped to 6 in a month. i had 2 blood transfusions & was on procrit until 1 month ago. my whole life i've had vertigo, hgb at 10 or 10.5, popped iron pills until 5 years ago and passed out unconscious twice in my life. my hep c dr. blamed it on the hepatitis.....well now i'm proving it's thal!!!!!!!

when i go to dr, i plan on asking for the hemoelectrophesis test, iron/liver mri/ferriscan, lic test and plans to raise my hgb, rbc and mcv. should i ask for another rx for procrit to combat my mild anemia? also he won't blood let unless my hgb=11!!!!! it won't get there w/out procrit or tons of iron rich foods!!!!!! does anyone have any clue how i can raise my hgb & mch? what are the best foods for me right now? should i be seeing a hematologist instead of my hepc dr? how do i determine the iron concentration in my heart? also since i stopped popping iron pills 5 years ago & stopped eating iron rich foods 1 year ago, is it possible that eventually after 3 more rounds of blood letting i 'll be cured?? i know it's wishful thinking...... also any/all suggestions/tips/pointers would be greatly appreciated.

onto the brighter side of life, i am a very strong woman w/ immense inner strength. i eat healthy nutritious foods, no red meat, no alcohol, work out, practice cyclical breathing and am exploring my artistic abilities. my belief in myself, inner strength and positivity throughout all situations has gotten me quite far in life. i take every lemon thrown my way & make lemonade.

thank you all for this forum and everyone enjoy their mother's day.

ucbgal

Hi ucbgal,

First, never ever take iron. Ever. You're only going to cause yourself harm if you do. There is absolutely nothing iron can do to help thal minor. I also would not recommend procrit for a thal minor. It doesn't even work well in thal intermedia patients. You also cannot raise your MCV and NCH. Those are low because your body produces small red blood cells in addition to the good ones, so the average size will always be low. It's really of no concern.

Diet is very important and antioxidant foods should be your focus, as there is constant oxidation due to the higher than normal turnover of red blood cells that thals experience. Please see the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.0.html for more info about nutrition in thal minors.

I don't know if you can get insurance to pay for MRI scans, but since iron was used long term, it would be good if you could get a liver ferriscan done. The bloodletting helped, but isn't normally advised for thal minors because their Hb level is already low. Instead, look to reduce your iron with natural chelators like IP6 and green tea extract (both are also powerful antioxidants). Both are easily found from online vitamin companies. Wheatgrass tablets can also help boost your energy and in some, it raises the Hb, and wheatgrass is another natural iron chelator.

andy,

many thanks for taking the time to explain everything!!!!!

fortunately i have the nutrition w/ antioxidant foods, cyclical breathing and work out regimen in place already!!!!!!

the vitamin supplements & natural chelators are 2 things i will be doing asap!!!!! interestingly i'd been taking ip6
prior to my 6 month hepc drug treatment & by golly it worked!!!!!! unfortunately i was told to stop all natural
supplements 2 weeks prior to my tx. was wondering if anyone w/ thal is taking milk thistle or liv-52? also if drs.
recommend blood letting for thal minors are there rx drugs for iron chelation i should request?

be well & enjoy the spring weekend.

ucbgal

Milk thistle does work for Hep C. The herb nigella, is also very effective. I don't think you need chelation drugs and I don't think they would be prescribed at your current iron level. Your iron levels have dropped quite a bit from blood letting and the natural chelators should be able to normalize your iron level.

Hello ucbgal
How are you doing ? Any changes in your health ? I hope everything is going well.
My journey after the one year iron pills had been a roller coast .i have stopped to take iron this last May 1 first.So is 4 months that I gave stooped. That same month around the 15 I started the IP6 and took for two months.once around July 10 I was feeling so well I decided to exercise again ( a thing that I have not done for quite while) . I was able to exercise for 3  weeks but I noticed the sudden swell of my legs and the pain on my knees came  back .At first I though it was the exercise so I stopped my program completely . I had that swollen legs for 3 weeks also .Once the aches came back they are with me until today. What is really bad also is a cronic pain on my abdomen on the right side that I though it was gallblader stones problem. Once I started to exercise I have stopped the IP6 ( cause my levels of ferretin were never altered or upper), and I started to take folic acid,magnesium,calcium, complex B or B12,vit C,D3,and natural vitE. I was surprized that with all my efforts I still feeling the joins and started to feel fatigue and my pain in my abdomen just worsens. I went back to my MD that refered me back to the same hematologist that loaded me with iron,also send me to a phisioterapist,and refered me to do an Eco cardiogram, and a pelvic ultrasound ( since in May/June I had a period that has last a month). I did the pelvic ultrasound that was fine . But I was still getting worse pains on abdomem. Sabbath the 23 I was really bad my color changed .i worked the following week praying for the weekend come fast and the 30th a chriropractor naturopathic physician that I know( as a church friend) at lest for 9 years addressed my problem. Thanks to God!!! The doctor knows and understand thallassemia and disbelieve in the asymptomatic minor. Also the doc noticed my color change and said be worry about my liver.this last week the doc read all the blood work done previously and asked for more specific blood work and saliva tests.this tests will take couple weeks to come back ,unfortunately my pain flared up again after working Sunday my abdominal pain is somewhat under my rib cage front and back .i couldn't work Monday and today .
It just occured to me that I actually could be facing  a  hepatitis  because the iron and also the supplements . The doc said to ne that the vitamins b and folic acid were not being absorb by my body and it just made me feel worse. Right now I'm laying down cause it hurts when I move. Do you think that this is hep ?