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Thalassemia Patients and Friends and thalpal © A. Battaglia 2018





54942 Posts in 5836 Topics by 6084 Members
Latest Member: ritaferreira

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: New member. Frustrated  (Read 880 times)
rosefaithnoel
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« on: July 11, 2018, 12:40:28 PM »

Hello.  I'm fairly new to this site.  I have been reading the posts over the last few months and this site has been very helpful to me.  A little background about me: I am a 42 year old female with beta thalassemia minor.  My father had the trait and my brother also has the trait.  When I was younger, I was always tired, however, did not have any of the symptoms I am experiencing now.  I am pretty fatigued on most days and since I turned 40, have noticed that I get flu'ish type symptoms quite frequently.  I used to have a pretty good tolerance to exercise.  I used to run and lift weights 5 days a week.  I still exercise, but my workouts mainly only consist of weight lifting these days.  I am unable to tolerate too much cardio.  I wonder if my symptoms could be due to the thalassemia or something else.  It's frustrating not knowing what is wrong with me.  My holistic doctor doesn't think that thalassemia could cause my symptoms.  I disagree. Here are my latest labs:

Hemoglobin: 10.2
Ferritin: 57 NG/ML
Iron: 101
Over the past few years, my periods have gotten heavier, so I have been supplementing with iron.  I still wonder if my ferritin levels are too low.  I've read that ideal ferritin levels should be between 70 and 80.  I started supplementing with all of the vitamins that Andy has suggested.  I feel that they have helped, but I still don't feel all that great.  I'm desperate for any advice, ideas, or suggestions.  I've been very depressed lately. Thank you!!!
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Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #1 on: July 14, 2018, 03:36:33 PM »

Your iron looks okay, so I would not recommend raising the dose. Thal minor women are about 17% more likely to also have iron deficiency than non-thal minors, so needing iron is not uncommon.

My long term observation of thals has me concluding that one of the most important supplements to take is acetyl L-carnitine or L-arginine. L-carnitine is extremely important for optimal organ function and is also key in keeping blood vessels flexible so they can pump blood without taxing the heart. Long term depletion leads to pulmonary hypertension, PHT and I have found that many thal minors report symptoms that are consistent with less severe PHT, and this worsens with age. I recommend at least one gram daily. Higher doses are safe. This is not a supplement that gives you immediate results. In fact, the results may never be noticed by many thals because it is more what it prevents from happening, so it isn't easily noticed. It may help with tiredness over the long term and is very important with age. A sublingual B-12 tablet can also help quite a bit as a temporary energy boost, while also helping you maintain your Hb level.
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Andy

All we are saying is give thals a chance.
Nanook
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« Reply #2 on: November 29, 2018, 08:51:26 PM »

Rosefaithnoel,
I know exactly how you must be feeling!  I am 59 1/2 , but feel like 70 some days, always SO tired.  I used to be very active, too, but chronic spinal pain put an end to that.  I would suggest that you ask your MD to check your B12 level by blood test.  I became deficient during my 50’s, and oral supplements did not help.  I give myself an injection every 4 weeks and it keeps my B12 within the lower range of normal. Not sure that there is a connection to thal minor, but my father had the trait and he too, was B12 deficient as he aged.
Good luck!

My HGBs stays steady at 10.0-10.6
« Last Edit: November 29, 2018, 08:56:34 PM by Nanook » Logged
Andy Battaglia
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« Reply #3 on: December 15, 2018, 01:30:26 PM »

B-12 is often low in thal minors. The goal should be the high end of normal.
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Andy

All we are saying is give thals a chance.
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