No, haven't been diagnosed just trying to fit the puzzle together. The gene is in my family and data isn't really forthcoming on the adult onset just the infantile. However all of my mothers fathers brothers (7 uncles) included her father died of heart attacks between the age of 35-45) My medical history is spotty as I've moved around my entire life due to the military and then my husband. Feeling poorly is normal I just keep moving forward, untill this diagnosis which the endo feels was worsened by a drug so I"m spinnin in circles a little trying to gather data before I make important steps like new medicines, surgery etc. I took a 6 hr glucose tolerance test 15 years ago and was diagnosed reactive hypoglycemic. Told to eat small meals every 2 hours. Learned on my own about glycemic and thought basically it was under control except for periods of unusual stress. Like having a tumor and chronic inflamation..sigh thanks for responding, any data however remote is appreciated.
I have hashimoto's disease and was actually just tested for 2 types of adult onset glycogen storage diseases....they both came back negative so I do not have it but the symptoms that I have (despite 2 years of normalized thyroid values) sound a lot like metabolic muscle disease. My legs get weak and painful within minutes of standing or walking....I have been tested for everything out there over the past 3 years and at this point everything has been ruled out, however, at 25 years old I can't walk or stand for more than a few minutes at a time. SO I guess that means that every endo out there who says that a "normal" TSH means no symptoms needs to take a step back and realize that there is obviously a lot we don't know about medicine! In doing some of my own research, I do remember finding a study linking one of the adult onset GSD's to Hashimoto's (It may have been Pompe Disease, but I can't remember for sure)...Have you been diagnosed with GSD??
I think it's a coincidence (bad luck), because as I read it's a methabolic diasease (genetic)