Tired - looking for suggestions

Hey everyone,

I've known about having thalassemia beta minor since I was a kid - I am now 26.  I have mostly just ignored it, knowing that I get tired more quickly than other people, but not considering any way to improve that or other symptoms.  I've been doing a lot of reading recently, and found many other symptoms I could relate to, especially things like getting dizzy and passing out when getting up too fast, etc.  I have only actually passed out once, but I have fallen over many, many times.

Anyway, back to the tiredness.  I started a new job this summer that allowed me to commute to work via bike (12 miles roundtrip).  I have chosen to do this as long as it isn't raining or snowing.  While my legs are now in excellent shape, I still cannot get over the tiredness.  When I get home for the day after riding to work, I am pretty exhausted, to the point where I can hardly do anything but sit on the couch.

So, I have heard of some vitamins potentially increasing the energy level of people with thal, and I've never really done a vitamin analysis.  I wanted to get suggestions of what I should be taking as far as vitamins go, and what tests I should have done prior to taking some of those extra vitamins.

Another issue is my bilirubin.  It's always been high - I can see it in the whites of my eyes.  I recently had a blood test done to get on life insurance, and they denied me because of the high bilirubin (3.86 vs 1.20 max normal range).  They said if I can get a test done showing my liver is good, and showing my iron is high enough, they may accept me.  With thal, is iron typically far below normal?  Should I not even bother trying to pass these tests?

Other interesting notes from my recent blood test:
- Glucose is 61, normal range is 70-100
- SGPT (ALT) is 46, normal range is 0-45
- Cholesterol is 96, normal is 140-240
- Low Density Lipoprotien (LDL) is 39, normal is 79-160
- Everything else they tested seemed normal.

One final note - I have extremely high metabolism.  I can (and do) eat whatever I want in whatever quantity I want, and never really gain weight.  I love pasta, and eat tons of it.  For example, I had a steamed 1.5 lbs bag of broccoli and pasta in alfredo sauce today for lunch.  I currently weigh 170lbs - have lost a few pounds since I started the bike riding routine.

In conclusion, I am primarily looking for ways to help my tiredness on days that I ride my bike.  I am also looking for any information on supplements I should take based on my blood test results.  And anything else you want to throw in there, please do.  ;)

Any comments?

JustinP,

It may be valuable for you to check your vitamin D levels as low vitamin D levels will cause you to feel unwell.   B complex vitamins can be very helpful in giving you energy - although they may not increase your hemoglobin they can extend the life of your red blood cells and make them more efficient. 

Regular exercise is great and over time you will build greater tolerance for it.  Many thalassemics are are greater runners and cyclists etc. but it takes time to build the momentum.

I would also suggest having your thyroid hormone and a cortisol test done as well. 

Other things that will help you - stay well hydrated at all times, eat regular meals (do not go long periods of time without eating), eat healthy meals as unhealthy food will only drain you.

Take a good calcium/magnesium supplement from natural plant sources - algea derived.   You can also try a multivitamin by the company called "Raw" for a natural supplement.

Please keep us posted on your progress,  it is a good idea to ensure that your liver function is good.  Also, an ultrasound of your spleen may be helpful - to see if it is enlarged.


Best of luck and keep us posted,

Sharmin

Justin,

Are you on any medications?

Do you have any gall bladder issues?  Any pain or bloating in the upper right quadrant of your abdomen?  An investigation of your gall bladder and pancreas, along with your liver may be warranted.   

Sharmin

Sharmin - thanks for the response and suggestions.  Would these tests be something a "regular" doctor would be able to conduct or request, or should I see some sort of specialist?

The only medication I currently take is Claritin for allergies.

No gall bladder issues (yet).  Interestingly enough, my mother just had gall stones and her gall bladder removed 2 weeks ago.  I don't know if that's genetic, but she's not my thalassemic side of the family anyway.  I did have my appendix removed last year.

Any comments on the bilirubin?  Is it abnormally high for a thalessemic person?  Is there anything I can do about that part of things?

Thanks,
Justin

Hi Justin,

We commonly hear from thal minors whose bilirubin levels are high and this is often reflected in a yellowish tint to the skin and eyes. This is a direct result of the premature breakdown of red blood cells, hemolysis. This occurs because some of the RBCs produced in thal minors are small defective cells and the spleen removes them. A by-product of this process is bilirubin. The high bilirubin may also be a factor in the development of gallstones. What can you do? Keep a nutritious diet that provides the building blocks of RBCs. Avoid junk food and empty calories. Supplements to consider are folic acid, B complex, natural vitamin E and magnesium. All are involved in the production and health of RBCs. Antioxidants are essential to combat the damage that comes from hemolysis, so I always suggest "think antioxidant" in food and supplement choices (I actually think this is wise advice for the general population, too). As far as exercise, pace yourself and understand that thal minor does create limits. Thal minor tennis legend, Pete Sampras admitted after his competitive days that he hid his thal minor so opponents would not know to try to take advantage by stalling and extending matches. Sampras used a strategy that involved dispatching his opponents as quickly as possible, so that the thal minor fatigue would not be an issue. It is important to understand your limits and pace yourself accordingly.

Hi
I can totally relate to your comment about the fatigue. I have thal minor. I am in my early 40's and started a new job at the start of this year. i have just had to drop back to 2 days per week due to the chronic fatigue. I work as a disability support worker and the job is hard work. I take vitamin supplements too but I must admit, I do eat too much junk food which I am trying to eat less of. I have had every test known to man and the doctors here still refuse to believe that my fatigue is a result of the thal minor. they keep telling me that thal minor has no symtoms. they truly do not know what they are talking about. good luck with your exercise. you are doing well

Justin, I can totally relate to your problems. When it comes to intense aerobic exercises my endurance threshold is very low and I can't keep up with my peers. My hemoglobinopathy symptoms closely resemble these of thal minor and my billirubin levels are also quite high (yellowish eyes and skin). I also started cycling to work two or three days of the week (about 13-14 miles round) and after a few months I developed better tolerance and even increased the pace. Cycling gave me a ton more energy! However I have some bad days and even whole weeks when I feel overwhelmed by fatigue and cycling becomes a torture.