A Pint of Sweat, Saves a Gallon of Blood

By the way, my iron levels are fine

I assume that you have been tested for various autoimmune diseases that have anemia as a symptom? It would be good to test your TSH, T3, and T4 levels to exclude hypothyroidism (low energy). I have celiac disease, and anemia is a common symptom of untreated. I also have MGUS, so far asymptomatic. Consider an elimination diet to see if you are sensitive to any foods. Hopefully you can eat enough to keep your weight up. If you don't have the energy for aerobic exercise the you might try resistance (weights...) training. Escaping from stress is important.

in reply to @kayabbott Thank you for this information. I have been tested for a variety of autoimmune disorders, and while many of the tests are "normal" the doctor has advised "you do not have xyz disorder." I am well aware that blood tests alone do not "tell all" but the specialist is unwilling to explore other avenues. I will soon see an immunologist, and I suspect that further testing will be completed, and I will discuss with him the tests that you have outlined. Yes on the diet, as I am keeping a food diary to present to the allergist. I am physically active and lift weights each day so I do not lose muscle mass. I have also met with a nutritionist, and will see her again soon. She understands that I may not be able to reach 2000 calories per day, and I am trying my best to increase my protein intake. Yes about the stress, and I have been unloading a lot of it, which has made a huge difference. I am fairly certain my thyroid is okay, per the tests, but my doctor is also checking on cortisol levels, as the first test was abnormal. It is a matter of getting to the lab early enough so another test can be completed, and if that one is also abnormal there will be another specialist to visit. Admittedly, I have so many different issues going on, and none of my clinicians can come up with a definitive diagnosis other than the fact that I am immune deficient. I have come to abhor doctor visits because the doctors keep running the same tests over and over, always getting the same results. Navigating the healthcare system feels like a full time job at times, and I often just forgo the doctor visits because I never get any useful information unless it is from the neurologist or pain management doctor. I am sure you understand. I am grateful for your response. I figure if I can maintain a steady weight, then I am doing fairly well. Force feeding myself is dreadful.

That is great that you are so proactive on your health. Doctors are good for diagnosing the usual illnesses, but less so if someone has a complex mix of issues. A poor (or overworked) doctor goes for the easy answers rather than plunging in. My celiac diagnosis is based on symptoms because the GI screwed up (left side of Dunning Kruger chart); he was sure that I had diverticulitis (still don't have it) so only took one illeoscopy biopsy. I'm a retired research scientist so like to investigate. If you don't mind the medical terminology, ResearchGate has a lot of peer-reviewed publications.

in reply to @kayabbott As a former insurance investigator, I love researching! I stay away from Dr. Google, and have found so much information on NIH, Global Healthy Living Foundation and other non profit organizations.

For what it is worth, today is National Rare Disease Day, and they are encouraging those with a rare disease to wear stripes. Kind of like that lesson doctors are taught: look for horses not zebras. Find the quickest most likely diagnosis, which has been my experience. If you are interested, her is the link: https://rarediseases.org/

Thanks for the information on ResearchGate. I will check it out. I have found that there are so many resources available, and if I see something or some test I think I might benefit from I tell my doctor, thus the cortisol test, which my former rheumatologist described abnormal cortisol levels as "rarer than hen's teeth." LOL.

It is a terrific organization. I am sorry for your celiac disease, as I have a few friends with the same problem, and their diets seem difficult to manage. I feel fortunate not to have this affliction, however the ulcerative colitis can be problematic at times. One really does have to be more proactive nowadays, in terms of managing their own diseases, and I am glad you are as proactive as you are in this regard.

Thanks for the rare diseases link. I hope that you find the cause(s) of your elevated cortisol. Gluten free is easy. Eating out takes more work because one can't eat everywhere, and you have to read ingredients for nasty gluten bits. I cook a lot and can replicate almost anything. It was worse years ago, when most GF stuff was made with rice flour and tapioca. The social aspects of celiac are irksome, but I have friends that are picky eaters that are higher maintenance than just GF.