Hello
Now that I have a little more information and no twitter, I thought I would put a little snippet here. My old twitter account helped a couple of people, and as my google searches brought me here, I thought this may help someone else.
Ok!
I'm a fit and surface healthy 54-year-old post-menopausal woman, who's had one weird health trip after another since 2017. A bit of past history has me with IBS - diagnosed in my teens, a nodular thyroid - diagnosed in my early 30's, no B12 absorption - diagnosed in my mid 30's, periodontal disease despite adequate dental care, also in my mid 30's. From there, I just didn't go to the doctors for over ten years, until some lady symptoms had me popping in for a check-up in 2017. My issue was a large polyp that was dealt with swiftly, and there was a swirl of fuss over my lumpy breasts (which everyone is bored with now, even though they are still ridiculously dense and lumpy). I was also diagnosed with subclinical hyperthyroidism and was severely anaemic with no iron stores. That was thanks to being a woman and a vegetarian who was not paying enough attention to her nutrition - whoops. I literally walked out of that doctor's office with a list, which is funny on reflection because I thought that was intense. Anyway, one by one, we ticked off the list and I was also able to add low vitamin D stores, which brought another supplement into my routine. Eventually, by April/May 2019, everything was back to normal, even my TSH levels; and I won't lie, the following six weeks after that checkup was amazing because I felt so fit, healthy and normal.
In early July of 2019, our coldest day of the time (winter here, I'm Australian), my right hand just blew up and I had little red rash spots over both hands. For a few weeks preceding this swelling, I had extremely dry skin on both hands, but just figured it was the gloves I was wearing, or the wool I was crocheting with and thought nothing of it. After ten days, with no improvement, I toddled off to the doctor; who took one look at it and said that this is going to take time to figure out. He took a swab, sent me off for a blood test, and prescribed some eczema cream. After a week or so with no improvement, I went back to my usual doctor, who prescribed me steroid cream and diagnosed chilblains with a touch of Raynaud's Phenomenon. This cream was insanely expensive and after a few days of use, upset my skin so much, it started to ulcerate. Back I went to the other doctor who took the swab, who then alerted me to the fact that something had come up in my previous blood results - an elevated MCV. I knew that this related back to B12, so thought it was just that - as did he, so he ordered more tests to check for autoimmune conditions for my hand. Once these results came back normal, except for the elevated MCV, he sent me off to a rheumatologist and a haematologist because he had/has no clue what's up.
Long story short - rheumo tested me for all and sundry with no result.
My haematology so far has been pretty good - especially when I read some of the results here. It wasn't until my bone marrow biopsy last year showed that I had moderately hypocellular bone marrow, that my haematologist even bothered to pretend to be interested in me. Earlier this year when I had my haem check-up, and my MCV was actually high normal, I thought I was off the hook, but she said that my reticulocyte count was still low, and to come back in 6 months. During that time, other tests with my doctor have shown that my subclinical hyperthyroidism has returned, as my TSH is very suppressed at .02, and I have polyps in my gallbladder and a cyst on my liver (so much for vegetarian lifestyle right!!!! still a veggo however) and my Raynaud's is next level. My heart rate is insanely low (I looked at my smartwatch when I wake up and it was 44 the other morning, and my blood pressure sits around the 90/50-60 mark) Anyway, my last check-in with haem had my reticulocytes at their lowest level yet, despite my mcv and everything else but my whites being normal, so she's plonked me into the autoimmune category, as has my doc, and I am to see her every 6 months until it either corrects itself or evolves.
As for my hand - I have lost usage of my right index finger, which sucks as in my previous life I was a photographer and still counted photography as a hobby. I have peripheral neuropathy pretty bad in my hands and elbows, so lose power at times, or have felt like my elbows are stuck in a bucket of water. I am slowly losing autonomy on my hands, especially in the cold where this year I am finding it a challenge to do up my shoelaces. My right foot is going numb at the heel and big toe, and I want to disown my feet and legs in Summer because they just ache and hurt, feel like they are stuck in warm goo, or have a hot towel wrapped around them! I also feel like I am walking in and out of air conditioning on a hot day most of the time.
Overall symptoms include - extreme fatigue, raynaud's phenomenon, peripheral neuropathy, cold and heat intolerance, nausea, headaches to the point of being chronic, joint pain, super hot red cheeks when I get hot in cold weather, alopecia of the eyebrows, - well half of them anyway, pale skin, general malaise and did I mention fatigue? Other than that, I exercise an hour every day religiously, eat like an autoimmune boss and keep as positive in this limbo as possible.
That's it!