Hi Vanessa,
The symptoms you describe are typically reported by thal minors here. As I mentioned, the blood tests look more like alpha than beta thal. but I can't be certain. When you go to a higher altitude there is less oxygen in the air, so there is a real difference. After a few weeks at that altitude, the body will compensate by producing more hemoglobin to carry more oxygen. This will normally raise the Hb level of beta minors, but I have never seen any info on the effect on alpha. If you are alpha, it does mean you won't get any Hb boost from HbF so that may be a factor. The zero fetal hemoglobin reported in your electrophoresis does tend to make me think alpha as do the MCV and MCH which are dead on for alpha trait (minor). As minors get older they do report more problems with tiredness and fatigue, along with numbness in the extremities, feeling cold all the time, and the irregular heart beats. If it alpha thal, there is an added danger. Certain beans like fava beans, but in some people other beans and legumes are also at fault, and chemical fumes and certain drugs can cause hemolysis which lowers the Hb level. I suggest minimum exposure to chemical fumes, like avoiding gasoline vapors at the pump, zero exposure to mothballs and even watch for things like fabric softener dryer sheets, as these have also been reported as causing hemolysis. If you suddenly feel much more tired than you had been, review what you've eaten and if you may have taken any over the counter meds or had some exposure to chemical fumes.
Folic acid is the only recommended treatment for alpha thal, and it is also recommended for beta thals. I suggest B complex, vitamin E and magnesium because these are all essential for red blood cell formation and RBC health. Many women already take calcium to help prevent bone loss as they age, but it's best to take a calcium/magnesium with vitamin D supplement. If you don't get regular exposure to the sun, vitamin D can also be low adding to the tiredness. It is probably the most common vitamin deficiency in northern climates. Calcium and magnesium control the two sides of a heart beat and are needed in balance. Sometimes taking a supplement can help reduce the irregular heart beats. Magnesium is also important for the health of the RBCs, as it keeps the cell walls stronger, enabling them to survive longer. Hemolysis is a regular feature of thal minor and the effects are completely overlooked by doctors, but in reality minimizing hemolysis will make a healthier individual, because their bodies have a better oxygen supply but also don't have to deal with the by-products of the hemolysis. Providing proper nutrients also helps create better RBCs in the first place, which means fewer of the small weak RBCs seen in your blood smear. Since you don't have insurance, tests to determine exactly what type of thal it is will prove too costly, and it won't really have much affect on how you will proceed. The best thing you can do for yourself is to eat well, get plenty of vitamins, minerals and antioxidants in your diet and take a few supplements. Exercise as much as you can even if it's mild exercise like a short walk. I do suspect the high altitude does have something to do with the lower Hb, as you are not compensating much if at all for the thinner air. The one thing that really bothers me is the no insurance. We need public health insurance in this country like they have in Europe so people can get proper medical care. Working with this group for so many years has exposed me to much about the rest of the world and as far as developed countries, the US really lags in some areas. And the health care plan passed in the US is going to do little to remedy any of this. Anyway, I do empathize and want to help if I can, so if you have more questions or concerns, please continue to post. With the cost of insurance, prescriptions and co-pays, I think we're going to see a lot more people without insurance regardless of any government mandates. If the government wants to do something, they should have Medicare cover everyone and get it over with. The current system of never ending price increases is not sustainable in the long term.
And as a group, I hope minors will share everything they learn about what helps them feel better. I don't see much help coming from the medical profession for thal minors, so minors are going to help each other out.