Help with understanding test results

I feel for you!! Often, through the years, it has felt like I'm on a constant "merry go round" in the medical care system.

It took years to finally get a diagnosis. Then, I was referred to an Endocrinologist. There, I was diagnosed with Hypothyroidism and autoimmune Thyroiditis.
This specialist was amazing! I was prescribed a thyroid stimulating medication, Synthroid, and slowly began feeling better. The dose was gradually increased over the next several months until the lab results were much better.
I began feeling less fatigue and my bodily pain greatly decreased.
Please understand, this is my experience. I'm not suggesting this is the solution to your health struggles.
I've been a professional patient my entire life.
It's hard.
On the positive side, it helped me to be more caring and compassionate towards my patients.
Overall, through the years, I have learned I have a very compromised immune system.
I don't know your age, which doesn't matter, I'm retired. My kids are older now. It was dang hard, to say the least, when my kids were younger.
Don't forget to give yourself some grace. ❤️

@sadea0208
I am so glad that you finally found an amazing specialist and got long overdue help! It is encouraging to hear about positive experiences in the health field; they do seem to be the exception sometimes. I feel that way about the caring and helpful ENT who made such a difference in my life. Now I am hoping to find an equally caring and competent doc to help with the other stuff.

FWIW I'm beginning to view the symptoms that plagued me from an early age as "different" from the breathing problems I acquired in late 2019. The early symptoms were strange but not life threatening, compared to the later breathing problems which were acute and a crisis. My "best guess" is that I may have been born with some sort of auto immune problem and then maybe got covid, months before it was made public. I guess I have to add "brain fog" to the mix because just thinking about this stuff is as clear as "pea soup".

Yeah, I am retired too and think I would have made it through life "blissfully ignorant" were it not for the 2019 illness, as my early strange symptoms were manageable-especially when I know no different. The possibility of a dx (for the early stuff) really "rocks my world" as I made up reasons of my own, for all the strange symptoms, when it appeared that science had no answers. And now I may have to dismantle my "false beliefs". I sure hope it's worth it!! And, if it proves the "cure is worth than the disease" I may revert back to the "ignorant bliss". LOL

Hi!!
You have an amazing attitude!! At our retirement ages, we've already been through a lot!! LoL
I've ignored symptoms for many things too!! I'm tired of going to the doctor's!! LoL I'm always a puzzle to them! I have had a lifetime of serious health issues!! I'm a professional patient!!
You mentioned long COVID and breathing issues. Our nextdoor neighbor, only 40yrs. old, has battled long Covid for the past year! Breathing issues, terrible fatigue, arythmia of the heart and pericarditis. He couldn't breathe well lying down. He tried to sleep in a recliner.He had a hard time getting sleep. He didn't work for 10 months.
He's now able to work part-time and drive short distances.
He recently went for a short walk, he got so out of breath he called his wife to come and get him. He was close to home. Whenever he tried to stand up from sitting, he would get extremely dizzy!
This is an extremely active guy who worked out every day and has two very active kids!
Initially, he was in the ER three times. They couldn't figure out what was wrong. He was at the doctor's so much.
He was referred to a cardiologist. This doctor diagnosed him with long COVID.
I thought this info might help you. ❤️

I wish my results gave a cheat sheet. I have a high titer ANA, but no other antibodies. Elevated complement proteins and cytokines, but those fluctuate. No CRP/ESR elevation yet.

A symptoms list a mile long.

But the biggest issue is my ascending aortic aneurysm, 5 cm.

I finally did a whole genome panel and found pathogenic variants for Behçet's, which absolutely fits. I had my new rheumatologist do an HLA-B51 test: Positive.
He's still not convinced. I get a skin tissue biopsy later this month. Behçet's often doesn't have elevated CRP/ESR, but does have elevated complement proteins. We'll see.

So much time and money. I sometimes wonder if it's worth it. But if I can keep whatever autoimmune/autoinflammatory condition I have under control - IOW, have someone believe and treat me. - I may be able to avoid open heart surgery. So I'm pretty motivated.

it seems like medical practices operate different in your state than here in Florida. i have found its next to impossible to get a PCP to do any kind of specialized tests that need to be interpreted by a specialist. i hope your insurance covered all the specialized tests the substitute PCP ordered

I would love to stay in touch with you!

@rebaba, I noticed that you wished to post a URL to an article with your reply to @dlydailyhope. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Allow me to post it for you:
- Sleep Apnea Surgery for the Nasal Cavities https://www.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/sleep-medicine/sleep-apnea-program/obstructive-sleep-apnea-treatment/sleep-apnea-surgery/sleep-apnea-surgery-for-the-nasal-cavities

@colleenyoung Thanks for your assistance. I do understand the need to limit spam, all too well. It was kind of you to help me.

UPDATE: My "moved-up appointment" with the rheumatologist ended up being a "dud". The office phoned and talked with my hubby this morning, while I was out of the house. They wanted to move my Tuesday appoint to earlier in the morning and offered either an 8:15am or 8:30am appoint. I then phoned the office back to inquire if this meant my new patient appoint was a 15 min slot. She said no-30 mins. (Also, I have yet to be given any new patient forms and/or medical history papers to fill out.) Not wanting to "burn my bridges"; I said I'd get back to her (about the next available in July).
Lo and behold I found a nearby Rheumatology office that specializes in specific auto immune disorders. They don't mention insurance though. And require a charge card number which will be charged $250. for a missed new patient appointment. Hm...I sent an email asking if they accept Medicare. Getting a (real) dx and (real) treatment for an auto-immune disorder is starting to feel like the "Wild West". My head is spinning.

@rebaba Don’t you just hate all the hoops you have to go through to get a diagnosis. On question that I would like to ask a doctor is, have they improved medical education with respect to AD diseases? I sure hope so.
Have you given any thought to going to a university medical center or a large, comprehensive medical center? I had to go to a university hospital when my local hospital had no idea what the problem was (even though I was non-responsive). At my husband’s insistence, they called the university and were told how to treat me. Shortly after, we went to UCH for a formal diagnosis and treatment. It might be a good step for you.
What about the rheumatology office that doesn’t take insurance? Have you talked with them?