ANA positive result/rare patterns

I have had a medical mystery, it feels, for about 7 years. I am diagnosed with hypothyroidism and hypogammaglobulinemia (immunologist said possibly combined immune deficiency- but not yet officially diagnosed- and not so bad I'd need to do the immunoglobulin infusions.)

7 years ago a rheumatologist said it was likely I would be diagnosed with a connective tissue disease disease based on autoimmune panel test, which didn't surprise me because my mom has very advanced RA at 85 years old. From everything I know about what my mom goes through daily, I can say I definitely have the symptoms of early RA, possibly Lupus. At that time when I was tested the titers weren’t very high (1:80 and speckled pattern).

In 2022 I saw a rheumatologist again who ran tests and said my anti-CCP antibodies were flagged high (positive, not super high, but he said it was a sign of something). The rheumatoid factor result was negative. The dr said this is common if I am in the early stages of developing RA and started me on hydroxychloroquine, which I was on for about a year. There was no official diagnosis and I was still in pain and fatigued and getting sick for the next year. After retesting me for the anti-ccp antibodies, the doctor said the level went down and he doesn't believe I have an autoimmune disease. I stopped the hydroxychlorequin because it didn't seem to help.

Now almost a year later, I’m in worse pain, worsening fatigue, low IgG, and just feeling miserable all the time. My pain, stiffness, fatigue and overall health seems to have gotten worse. I noticed it really getting worse when I started working part time cleaning a few vacation condos I manage. It's not that I just get tired or fatigued, I literally feel as if I ran a marathon after just going to the store.

I went back to the rheumatologist a month ago and asked if I should go back on the hydroxychloroquine. He said all my labs were normal and so I didn't need it, then asked what I wanted him to do. I asked him to please recheck the anti-ccp antibody to see if the level went back up since stopping the hydroxychlorequin (which by now was almost a year ago). I thought that would maybe be why everything feels so much worse. He ordered an autoimmune panel again and a couple weeks ago my results came back with a few flags. My CRP was Flagged high and my IgG flagged low. My ESR was normal and pretty much everything else normal.

My ANA results showed two antibodies were flagged with the following patterns:

#1. Mitotic Spindle pattern 1:80 - notes through the lab said the pattern is rare, but most often seen in RA and Lupus, but that it does not specifically point to anything specific as far as helping with any certain diagnosis and one should consider clinical signs and symptoms as well.

#2. Mitotic intercellular bridge (AC 27) 1:80. In the lab notes it says: the residual part of dividing daughter cells just before separation and has been associated with systemic Sclerosis and malignancies.

Of course I looked up systemic sclerosis and have many, many of the signs symptoms (the pain, skin issues, lumps similar to collagen or calcium under various parts of my skin. I have also had two different radiologists in the past mention I had calcifications on my ribs and intercoastal area. I have brought this up more than once with my PCP and rheumatologist and they aren't concerned.

I called the rheumatologist office and the office lady read the results saying nothing was clinically significant other than my CRP was high and one of the ANA's was flagged but not clinically significant and I can take pregabalin, which I was already taking for restless legs.

Here's my problem, I feel crazy and don't trust what my body could be or may not be telling me. I believe I have a high pain tolerance and so it can take years for me to even mention certain systmoms to drs. I can’t work more than a few half days in a row cleaning properties without getting a cold/flu symptoms for days, or without my fingers going numb, wrists hurting, hip pain, coughing... migraine..it literally takes me two days to three days to feel normal again, then a week or two later I'm sick again.

I don't want to continue chasing down a diagnosis, but I guess I'd like to know what other's suggestions are for what they would do next... lay low and wait...ignore it...or seek answers elsewhere. I really don't want to deal with it, but I am thinking of contacting the mayo clinic if I continue feeling horrible. I do need to check in with the immunologist and will.

Thanks for reading through all this!