Lookking for some information-Thalassaemia Minor

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Lookking for some information-Thalassaemia Minor
« on: March 16, 2018, 02:07:18 AM »
Hi  there,

Just looking for some advice on my current blood work.
I am 35 years old - female...thalassemia minor. I also tend to have low blood pressure...sometimes dipping into the 90/40 range...and I have small kidney stones. However, despite tiredness and light headedness  and feeling cold (often) I am quite active (workout  intensely 4-5 days/per week). 

The following were flagged in my recent blood work:
Hemoglobin 99 g/L (Low)
Hematocrit 0.320 L/L (Low)
MCV 65 FL (Low)
MCH 20.2 pg (Low)
MCHC 309 g/L
Platelets 261
RDW 15.9 (HI)
Ferritin 139 ug/L

My doctor seems to be concerned that my hemoglobin is  low however would like to wait 3 more months to retest and then take further action if he sees another drop. We have noted my hemoglobin dropping slowly within the last 5years. Any thoughts or advice would be greatly appreciated. Thank u.

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Offline Andy Battaglia

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Re: Lookking for some information-Thalassaemia Minor
« Reply #1 on: March 22, 2018, 11:13:48 PM »
I'd be curious as to what action your doctor might take, as your ferritin looks fine, so unless the other iron numbers are low, I don't think iron would help. The RDW will also usually be above 18 if iron is low. It's impressive that you are able to work out so much with an Hb hovering around 10.

What is more likely to help the Hb of thal minors than iron are the other vitamins and minerals required for red blood cell, RBC production. Iron is recycled in the body, so unless one is iron deficient, added iron isn't needed for RBC production. Everything else involved is. What I have heard from patient experience is that the most noticeable effects come from taking L-methylfolate and vitamin B-12 together. 2-5 mg L-methylfolate and 1000-2500 mcg of sublingual B-12. L-carnitine is also important for building RBC's and is also needed to fix nitric oxide, NO in the body. The oxidizing forces at work in thalassemia deplete NO and the effects of this become more apparent with age. I feel that thals could avoid some problems that are common as they get older by taking a daily L-carnitine supplement to increase NO production. I would suggest that you have your vitamin D level checked and also mention that D levels in thal minors should be in the 50-80 range. A minimally acceptable level around 30 is too low for thals. If your level is below 50, high doses will probably be needed to budge it. I got above 30 taking 5000 IU daily, but until I switched to a once weekly dose of 50,000 IU, I never felt right. I was told by one of the top thal doctors on earth that the weekly 50,000 IU doses were the only way they had good success raising the D level to where it should be.

Review the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.0.html for more ideas about nutrition in thal minor. Nutrition and exercise are really the only way to have any affect.
Andy

All we are saying is give thals a chance.

Re: Lookking for some information-Thalassaemia Minor
« Reply #2 on: March 23, 2018, 12:03:46 PM »
Thanks so much Andy (the information provided is helpful) ...I will have my Vitamin D checked...I do take vitamin D (1- 1000UI) a day but I don’t think it has ever been officially checked. My doctor mentioned something about a possible internal bleed...causing lower than normal Hb levels? any thoughts?

Do you think the frequent high intensity workouts are beneficial or harmful?
« Last Edit: March 23, 2018, 01:53:32 PM by Roses277 »

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Offline Andy Battaglia

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Re: Lookking for some information-Thalassaemia Minor
« Reply #3 on: March 28, 2018, 09:16:38 PM »
An internal bleed can be the cause of low Hb and can also be difficult to determine, although often there will be some blood in the feces, but not always. You should talk to your doctor more about this to see if it should be investigated. It seems like I hear a lot about endometriosis causing bleeds in thal minors. That might be a possibility.

I don't think the workouts will hurt, as long as you stay within your limits. There is no point in trying to push past that, as the physical limits of low Hb are real.
Andy

All we are saying is give thals a chance.

 

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