Thal minor: questions for consultant, and alternative methods of healing

First, I would like to thank Andy for hosting this forum. It holds the first and only authoritative discussion of thalassemia minor that I have found anywhere on the web or in any other form. I have learned so much already.

After years of going around in circles with symptoms (which I'll outline below, but thal minors will have heard them all before) I have an exciting opportunity to meet a haematologist in Italy. I am British and there is no sympathy for or understanding of the challenges thal minors face in the medical profession here. I'm always packed off with some iron tablets and my symptoms never improve.

There seems to be a greater understanding of thal minor in Italy because so many Italians have it. I'm formulating my questions to the haematologist as I want to make the most of his time. I would appreciate some feedback on my questions and perhaps what else I should ask.

1) What is going on in my body? Is it hemolysis that causes my haemoglobin level always to be low rather than iron deficiency?
2) Why don't I seem to absorb iron from my food? I eat a very healthy mainly vegetarian diet with lots of lentils, green leafy veg, soy, beans, etc. I have resorted to eating beef occasionally to try to improve iron absorption, but the body never seems to take it in!
3) What can I do to help myself? My chronic fatigue is debilitating - making it virtually impossible for me to hold down a job. I'm 42 and afraid the symptoms will get worse as I age as they already seem to be.
4) Is oxidation the issue and will taking supplements such as L-arginine help with this?

Since childhood I have suffered from chronic fatigue and a heavy menstrual cycle. I have had the problems with sports and athletics that are outlined elsewhere on this site. I am still struggling with this as I attempt to take up running and swimming in my 40s.

What has helped me is yoga and martial arts. I am particularly interested to know whether Andy thinks the Bone Marrow Washing Technique could be of particular help to us thal minors. I've recently taken up L-arginine after reading his suggestions and am waiting to see if it is effective.

Thank you and looking forward to your response.

I'll try to answer the questions.
1) The low Hb of thal minor is due to the lower production of beta globin. One of the two beta globin genes either under produces or does not produce at all, so there is a deficit of beta globin to combine with alpha globin to make hemoglobin. The red blood cells that have a deficit of hemoglobin become victims of hemolysis, but the lack of beta globin is the cause. These are the red blood cells that are seen as small and pale in blood tests. Lack of iron has nothing to do with this. It is possible for thal minors to also be iron deficient, and this percentage is probably similar to what is found in the general population, but iron will have no effect on the anemia of thal minor. Iron should only be taken by minors after a full iron panel of tests determines deficiency.
2) How do you know you don't absorb iron from food? Have you had an iron panel that shows deficiency? The anemia of thal minor cannot be helped by iron. L-methylfolate is a far better choice for trying to raise your Hb. It is not unusual for thal minors to take 5 mg or more daily. Folate is needed to build red blood cells, and unless you have a coinciding iron deficiency, you already have enough iron and more iron will only cause health problems in the long term.
3) In addition tryng to raise your Hb through folate and wheatgrass, get your vitamin D tested. Deficiency is common and low D really exacerbates the problems of thal minor. Find out your level, and do not accept a minimal level as good enough. It must be over 30 to even feel human, and a goal of at least 50 is good for thals. I am not thal, but vitamin D has done amazing things for my health and energy level, and most importantly, has freed me from winter depression and vastly improved my immune system. I take at least 5000 IU daily.
4) Oxidation is a big and under appreciated issue of thal minors. The higher turnover of red blood cells along with the tetramers caused by the excess alpha globin, cause a high amount of oxidation in the body and antioxidants are highly recommended. Natural vitamin E is my favorite, but a diet high in antioxidants, along with antioxidant supplements can be of great help to counter the oxidative damage present in thals. 

The one thing that could easily cause low iron is mentioned after your questions. A heavy cycle can drain your iron stores. If iron studies do show low iron, one form that works very well is called iron water and you can find it under the name, Spatone. It is water that naturally has a high iron content. It gets very good reviews for both tolerance and absorption.

For more about nutrition, see http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774

Dear Andy,

Thanks for your response to my questions. I should have mentioned that I have had my bloodwork done and it did show iron deficiency.

Ferro level 61 and S-Ferritin 17

I do eat a very iron-rich diet and so it looks as though my body does not effectively absorb iron from the food.

The consultant has prescribed me Sideral Forte, an iron supplement which has a unique formulation that is meant to make it easy to assimilate. I am also now taking Folate. I'm on day 5 of the Sideral and don't yet feel any better but I will stick it out for the 20-day period and then have another blood test to see if my iron level has gone up.

The consultant has asked me to come back for a stomach examination - mainly to check that the iron is not being deposited in my spleen.

I will definitely look into vitamins D & E and start juicing wheatgrass.

It was nice just to see a sympathetic consultant who acknowledged that thal minors are often affected by symptoms.

A couple things that can aid in absorbing iron from food are to take foods containing vitamin C along with high iron foods. This will increase absorption. Also, be aware that taking tea with meals decreases iron absorption, as do dairy products, so plan meals accordingly.

Thanks for those reminders, Andy. I am aware of those factors in iron absorption and plan my meals accordingly - never drinking black tea and hardly having any dairy. So why my body doesn't absorb iron from all the beans, legumes and green leafy veg I eat is a mystery to me. I am 12 days into my Sideral Forte regime and don't feel any real improvement from it, although I started on wheatgrass today and I think that may make a difference.