Lupus or not Lupus?

I had 28 tests done. I'll list them as I see on the paperwork, many apologies - it's lengthy 😀 I will also put the results of any of them that showed up as anything other than normal in parenthesis. I was never tested for Covid when I believe I had it, but that is included in the blood work below. Side note: I don't know if I'm allowed to throw this info out there, but at this point I don't mind that people see my info, so... *shrug*

TSH, serum or plasma
CBC w/auto diff (of the 20 parts of this: platelet count was high)
T3, free, serum or plasma
T4, total, serum
vitamin B12, quant, blood
SARS CoV 2 IgG Ab, QN IA, serum or plasma (1 part: high - confirms I had Covid, if I'm not mistaken)
estradiol, serum
progesterone, serum
dhea-sulfate, serum
testosterone, total, serum
Ih + FSH, serum
lipid panel, blood (of the 16 parts: HDL cholesterol low, LDL particle number high, LDL small high, LDL medium high, LDL peak size low, hs CRP high)
HbA1c (hemoglobin, A1c), blood
insulin, serum
C-peptide, serum
CMP, serum or plasma (of the 18 parts: urea nitrogen [BUN] low)
urinalysis, dipstick
CK (creatine kinase), total, serum
magnesium, serum or plasma
vitamin D, 25-hydroxy, total, serum (1 part: low at 23 - but I knew this already)
iron + TIBC + ferritin, serum
uric acid, serum or plasma
erythrocyte sedimentation rate by westergren method
ANA (antinuclear antibodies) panel, serum (of the 3 parts: ANA screen - ifa positive/abnormal, ANA titer - 1:40 high, ANA pattern - nuclear, speckled/abnormal)
rheumatoid factor, qualitative, serum
CRP, high sensitivity, serum or plasma
anti-C1Q Ab, serum
systemic lupus erythematosus profile
lupus anticoagulant, plasma (of the 4 parts: anticoagulant not detected, drvvt screen high by 1 point)

And there you have it. Again, I'm not a professional by any means, but I like to think that I am intelligent enough to understand things, especially when I do the research that explains what it means. I've looked up the results of every one of these and the one that worries me the most is the ANA panel - it does NOT say normal, soooo... ?! According to what I've read, those results are indicative of lupus, if nothing else, further testing. I just called my doctor's office (they never answer) and left a message, telling them I want a referral to a rheumatologist, and provided the name and location of the one I chose that my insurance covers. She is 2 hours away, but I expected that.

Thank you for responding, by the way. I am finding that the support I'm receiving here is helping tremendously. I start crying every time I see someone has responded with kind words, encouragement, resources... it doesn't matter. My feelings of "I must be insane" start to go away, and that's important to me. I'm NOT crazy (not in this regard anyway lol). I'm NOT imagining these symptoms. My quality of life has tanked and I just want answers and some goals to work toward getting better, you know?

Nope... you're not crazy, just stressed!
You are experiencing the same thing that many of us have
also lived... many years before the diagnosis. You are NOT alone.
Becky has given you great advise: yes, I too tend to 'expond' when stressed, because I wanted to explain everything so they would understand! But.. the opposite is required.
If you are old (like me) you may remember an old TV show, where the exhausted, grumpy cop keeps saying.. "just the facts ma'am, just the facts"
This is sooooo true for your appointments. Remember that the job of finding the diagnosis is theirs... your job is to clearly, and calmly state your symptoms. Can you take a trusted person with you to your appointment; whose presence will keep you grounded, and help you feel calm?
I do wish for you to find a doctor whom you can work with. This road is a long one... but heavily travelled. Plz let us know how you get on.
All the best!
There are many tests for the myriad of autoimmune diseases.

Thank you so much for your kind words, seriously! I do feel crazy, but I KNOW i'm just majorly stressed out. I keep repeatedly being told that my diagnostics are fine and I'm healthy... it REALLY wears me down, and I can't afford to be more worn down than I already am.

As for "old" - my legs have been deemed to have the nerve flow of a 90 year old, does that count?! I FEEL old, but... I'm only 41 😛 But I think I may know what show you're talking about, that's from my parents' era hehe

As for a trusted person to take with me... that is much more difficult. I don't have many of those now. A best friend (she would not be the one to keep me calm tho) and a cousin (that works constantly) - both of whom live 30-hour away from me, respectively. Due to recent and major life changes, my mom left her husband (yes, he is technically my father, but ugh) and moved to Colorado to be with her sister, so... yeah, I'm on my own. My son is almost 18, but he is autistic (needs care) and I wouldn't subject him to any of this. He IS the sole reason I haven't given up.

Hopefully the doctor's office will do as I have firmly requested and get me that referral to the rheumatologist, and we can go from there. 🙂

Thank you so much for your kind words, seriously! I do feel crazy, but I KNOW i'm just majorly stressed out. I keep repeatedly being told that my diagnostics are fine and I'm healthy... it REALLY wears me down, and I can't afford to be more worn down than I already am.

As for "old" - my legs have been deemed to have the nerve flow of a 90 year old, does that count?! I FEEL old, but... I'm only 41 😛 But I think I may know what show you're talking about, that's from my parents' era hehe

As for a trusted person to take with me... that is much more difficult. I don't have many of those now. A best friend (she would not be the one to keep me calm tho) and a cousin (that works constantly) - both of whom live 30-hour away from me, respectively. Due to recent and major life changes, my mom left her husband (yes, he is technically my father, but ugh) and moved to Colorado to be with her sister, so... yeah, I'm on my own. My son is almost 18, but he is autistic (needs care) and I wouldn't subject him to any of this. He IS the sole reason I haven't given up.

Hopefully the doctor's office will do as I have firmly requested and get me that referral to the rheumatologist, and we can go from there. 🙂

WOW! You have much to be stressed about. These social burdens, isolation and your dear son combine to drain our stamina! I can't be there for you, but we can read your notes, listen and send encouragement.
Do you have in your town any groups that meet: such as an arthritis group... you don't have a diagnosis yet, but you would find lots of folks who have gone through similar journeys. I do hope you can find a pair of compassionate ears! We all need them.
Perhaps there is a group at a mental health place that would have some meetings or 'something' for 'Stress', or for parents with kids with special needs? .. I'm just thinking of how / where you could find some support.
Personally, I have found groups have been a great place for support and learning. There was an Arthritis Clinic in my previous town, that offered several groups and therapy, etc.
In the meantime, you have 'Connect'!
Let us know how you get on with your appointment
All the best to you.

@thecyborgenchi We have all learned to advocate for ourselves. It is proactive, helpful, fulfilling, frustrating, and rewarding - all at the same time!

While you plough through getting the correct diagnosis, a couple of things I would like to point out to you. Number one, we are all here to listen to you, and support you. Venting and getting feedback helps us get through the day. Number two, autoimmune conditions like lupus, can be real difficult to diagnose. I have heard it referred to as a "constellation disease", as there can be many facets to it. When I was diagnosed in 1988, there weren't the sophisticated tests available now, and they had to limp along.

Wishing you success in getting in to a rheumatologist soon, who can look at the whole picture and come up with a diagnosis/game plan!
Ginger

I refer to the area I live as a "black hole" for services/support/quality anything. It's a "small" town (12k+-), and I'll leave it at that. I've had to fight my son's whole life to make sure he gets what he needs, and now I'm fighting for myself. It's exhausting - and I'm ALREADY exhausted all the time anyway lol. I have been outsourcing support from here and Facebook support groups, that's the best I can do. It's enough to know that I'm not alone.

As for appointment... I got a call Monday from PCP office. They sent referral to someone that doesn't take my insurance, so I got that straightened out. Would've been great having to drive 45 minutes instead of 2 hours, buuuuut... black hole 😛

I'll be overextending myself and taking my son to visit family for the holiday and his birthday, so I probly won't get that appointment or be back on here until next year. So, I'll update when and as I can. I hope you have a great holiday!