I guess this is just me being curious! I was diagnosed N2 last year. I’m tired pretty much all the time and take armodafinil as well as a good amount of naps. I noticed a lot of people talk about a symptom of sleep paralysis and hallucinations. I’ve always had vivid nightmares, but no paralysis or day time hallucinations. Do any other N2-havers not experience paralysis?
I (25F) was excited to finally see a rheumatologist this morning because I was so hopeful about getting more direction on treatment after a different provider diagnosed me with Hashimotos, Sjogrens, and anemia. I am exhausted ALL THE TIME and got diagnosed with narcolepsy type 2 last year.
Unfortunately, it was an awful experience.
From the moment the doctor walked in, he was very cold and uncaring. He told me I might not have or flat out don’t have what I was diagnosed with. For the lab numbers he flagged, he said they were all pretty borderline and not super abnormal.
He said I don’t have anemia because my hemoglobin is fine (12.2) and said my iron was low but didn’t seem concerned even though my ferritin is 6 L and total iron is 36 L. Even my OBGYN was very concerned about my iron stores.
He told me I had some slightly abnormal thyroid numbers but the only thing he could prescribe/do about it? Have me check the levels every so often. My thyroglobulin antibodies are 13 H, thyroid peroxidase antibodies are 89 H, my TSH is 1.3, and T4 free is 1.0, and my T3 free is 2.8.
He also wasn’t very concerned about my anti-strep of 221 H or my positive ANA screen.
My Sjogrens antibody is marked as 1.2 POS but he said I only *might* have it and could get a biopsy to make sure. That was the one thing he could do for me.
I asked if all my fatigue is really just my narcolepsy type 2 with no autoimmune stuff underlying, but he didn’t have a good answer for that.
I’m just so confused and upset.
I (25F) am exhausted all the time and I’m sick of living like this. I was recently diagnosed with Hashimotos as well as anemia and Sjogrens. I got a narcolepsy type 2 diagnosis last year, and I wonder how much of that is actually Hashimotos fatigue. I take armodafinil to keep me awake. I’m taking iron supplements, vitamin D3, and some other things I was prescribed. It’s so hard for me as a type A person to want to get a bunch of things done and be fighting my eyelids as they ache and droop on me. I want to get so many things done at home after work, but I’m so wiped at the end of the day. I just hate it so much and want to feel better. I just want to feel somewhat normal and have some energy and not be fighting exhaustion every day.