Not sure what to do, overwhelmed.

My husband was diagnosed with Thal minor 15-18 years ago.  His Brother, Uncle and Cousin all have it, his cousin is deceased due to complications from it after an accidental injury.  In the beginning we went to several doctors that said Thal minor is symptom free, he was diagnosed with depression at on point which wasn't the issue.  After several moths of test he swore off doctors and has been miserable.  We are almost 18 years into this and he has not gotten any relief.  He gets sick 6/8 times per year, when he does he gets dark rings around his eyes and the insides turn yellow, he has overwhelming body pain and will sleep for days.  It is much worse at higher elevation, he has had to be transported via ambulance from a ski mountain.
 I have been on a very helpful facebook group about Thalaseemia, they have kindly reviewed his labs and it looks as if there is no reason for the extreme symptoms he is having. 
Is there anyone that has similar symptoms, if so, what are you doing to help.  It has been so long since he felt good or had energy, yesterday he said he felt as if he has wasted half of his life being sick. He has also broken 33 bones many should not have broken if the force of impact was taken into consideration.   I am frustrated, heart broken and overwhelmed.  I just want to see him better, it affects our life and our children and his job when he is unable to get out of bed and it happens often.  I appreciate any help you can offer. 
He currently takes Folic Acid, B12, D, Magnesium and fish oil daily.  He also eats according to the auto immune protocol to reduce inflammation. 
Thank you for your ideas, help and feed back. 
I have found the facebook group to be so helpful that I thought I would gather the courage to post in this forum.  I'm not sure I can take anymore hopelessness, I'm ready to have my husband back.
Thank you.

Krista,

I'm glad you've joined us here. I find it much easier to have in depth discussions here. I would like to see the results of a hemoglobin electrophoresis test, preferably from a different lab than the previous tests. The other labs show thal minor, but an electrophoresis is needed to verify that no other types of hemoglobin are found. As I mentioned on Facebook, the problems at altitude are not found in thal minor, but are found in some other hemoglobin disorders. I feel that this needs to be ruled in or out before you can be certain the answer is not related to a blood disorder.

Have the doctors ever given any explanation for the broken bones?

Andy???  I am thankful you are on here, wow.  Doctors have not every given explanation for broken bones, all of the happened as a result of motorcycle racing which they have said was to be expected.  I watched some of the crashes and he should not have compound fractured his arms with a fall like that, he breaks easily.  His parents were told that as a child he drank too much soda pop.  I have scheduled his appointment and sent a request for specific labs to the hematologist, we live in rural Montana and found the only one that is familiar with Thal, fingers crossed.  I will post results when we have them.  Thanks again for all that you do!!
Krista

Yes Krista, this site has been around in one form or another since 1999. I've been managing it since 2003. I extended it to Facebook as an extension of this group and also administer two other Facebook thal groups. I do feel that for in depth discussions, this website is still the best place to go. You will also find that the problems confronting many thal minors will be given more credence here than they may receive on Facebook.