Hi, I'm Nicole - recently diagnosed with AIs
Hi. My name is Nicole. I'm 38 years old and have recently been diagnosed AI's. I has had various things wrong with me for years but I stopped asking doctors about them over a decade ago because they could never tell me what was wrong and never offered any explanation... A story that's starting to sound depressingly common.
This summer, after looking into health issues of my kids, I found that celiac disease described me and the issues I've had since I was a baby. I took a home test which ended up positive and brought it to my doctor so he'd test me. I'm celiac.
I then requested blood work, vitamin levels and TSH because celiacs often have problems with nutrient absorption and fatigue. TSH was off so we ran it again with thyroid peroxidase antibodies and low and behold, I have Hashimoto's too.
I am a couple of months into eating gluten free and my gut is improving. My hypothyroidism is in the infancy of being treated so no improvements in my fatigue or hair loss yet. What led me here is that I've had my joints go down hill again.
I had my doctor test me for RA 15 years ago because my finger, hand, shoulder and hip joints gave me such pain. My joints didn't work well for a couple of months. They swelled a bit and my fingers even felt warm (which for me was unusual, I'm usually icy cold). I remember my doctor (at the time) telling me my RF was negative but another test indicated that I could get RA in the future. I bought my records from my doctor when she quite her practice so I had a look at them. I guess she was referring to a speckled ANA of 1:160 which she didn't tell me about. I had a low hemocrit and hemoglobin too; sed rate was normal.
I googled ANA and found a few things that fit me. First was Hashimotos. Got it. That could be it or it could be nothing. I read further and found ITP and it's link to Lupus... or not. I developed ITP 20 years ago. It almost beat me. My platelets were down to 2K and I eventually had a splenectomy. I found those old records too and found a narrative that mentioned a positive Coombs test of 1+, a pending ENA (which was not included), and an ANA test of 1:160... this one was five years earlier. No one said a thing to me about that test back then, at least not that I recall.
I looked at the Lupus diagnostic criteria and I fit at least 3-4 of the 11 (possibly as many as 7 if you say migraines are neurologicall symptoms, etc.) but I'm hoping it's a coincidence. I already have three Ai's; I'm hoping some of my symptoms come from under treated Hashi's and not yet healed celiac.
What scares me is that I have:
- Arthritic pain and stiffness (minimal swelling)
- Oral ulcers - I think I have some now. It often happens when I get flu-like, as I have been for the past few weeks since my joint pain started up again. They don't hurt much. Small bumps to larger raw feeling areas.. never thought anything of them before.
- Hematologic disorder = thrombocytopenia
- ANA 1:160 in 1997 and 1992
And then there are other things that could also be Hashi's or celiac caused like migraines, fatigue, hair loss, more fatigue, dry skin, GI issues, bad joints, bad back with burst disc that caused drop foot/paralysis, cold body, low libido, and I hate to admit it, but I'm not as sharp as I used to be.
I chalked it all up to aging, sports injuries and genetics until a few months back, but I now know I've had celiac 38 years and I found old TSH tests that were elevated so I've had Hashi's for about 20 years (for sure after a case of mono and pneumonia as a teen). My doctors dismissed my ITP so I sort of did too, I never think of it, but if it's Lupus I better find out since there are so many issues to be aware of.
I haven't yet been examined for Lupus. I am collecting info, and compiling symptoms and dates for my doctor to look at (he tends to need prodding, but he's good if you need antibiotics LOL).
I do wonder if it's possible that I've had undiagnosed Lupus for a few years (almost decades)... that seems unlikely. I get joint pains for a few months of the year; and it does affect my everyday life but still...
If anyone has advice or anecdotal stories similar (or not) to mine, I'd love to hear it. I knew almost nothing about Lupus, or UCTD or MCTD a few days ago, and now I feel like my head is swimming with info as I try to sort it out for myself (I don't trust doctors much anymore). Any help or encouragement would be appreciated.