Hi all,
Not sure how to start this because it has been such a long process to get where I am now to finally have a diagnosis. The amount of specialists who treated me like I was some kind of scammer gives me very little faith in most doctors. Many of the specialists I paid very well to see me treated me like I was somehow trying to sell them into a pyramid scheme.
So quick summary, I got covid 19, recovered but soon after started to develop a extreme fatigue and breathlessness. Thought I had long covid. Unable to continue with my profession due to constant illness. Constantly seeing specialists who suggested all manner of illnesses mostly saying it was psychological. Went to a psychologist who said he doubted I was depressed. By year 2 my Rheumatologist sends me for an MRI and finds I have crushed 2 vertebrae in my back and I have bulging discs in my neck and lower back. At least this explained the back pain and headaches. He thought this was odd because the way I broke my back was just getting up off the floor and I thought I had just pinched a nerve. They send me for a dexa scan of my bones and I have osteopenia and the bone density of a 91 year old. I am in my early 40's for reference. Further blood tests reveal I am low in many vitamins and I have the gene for celiac disease. I get an endoscopy. Gastroenterologist confirms celiac disease but I also have an enlarged liver and spleen. 6 months of gluten free and I am still feeling rubbish with maybe only a slight improvement in my brain fog. Endocrinologist does some testings and turns out I have Hashimotos also, which I always suspected. For 6 months I have been on a daily dose of 2000iu of vitamin D since I was diagnosed with celiac disease and my bloods have improved but my vitamin D levels are still low. My TSH T3 and T4 when tested have shown my thyroid was slightly low at times but the most recent showed my TSH T3 and T4 were all in the normal range. However my Thyroglobluin antibodies were at 130 and should be below 4. The endo confirms Hashimotos but says because my thyroid hormones are normal they won't medicate me. I have an ultrasound of my thyroid and it is undersized but they also find one of my cervical lymph nodes lacks a fatty helum which seems to concern them. Sorry for the long winded layout of everything. What my main concern here is that now that I have finally been diagnosed I am not getting any treatment other than calcium, vitamin D and a gluten free diet. None of these things seem to be making my fatigue and other symptoms any better and my Endocrinologist said there are cases of Hashimotos that people have normal thyroid hormone levels but they still get all the symptoms and there is little they can do to treat them. It sounds like I am in that boat and was wondering if others have experienced that and if they have found anything that makes their symptoms any better.
Right now I feel really disheartened because I always thought once I finally get a diagnosis then I will see improvement and maybe be able to get my life and health back on track. Unfortunately the back injury means it is permanent pain for the rest of my life. The celiac disease means gluten free forever and whether I recover any of my bone density is unknown and on top of that I may have Hashimotos that gives me all the symptoms yet cannot be treated.