Cardio PET Scan for Potential Autoimmune problem(s)

Posted by buttons5104 @buttons5104, Oct 19 6:37pm


I have been diagnosed with Sjogren’s syndrome and I have most of the classic symptoms- extreme dry eye, dry nasal passages and joint pain. etc. However I also have Small Fiber P Neuropathy in both my hands and feet and sometimes limbs in general.
The immediate- newer concerns are my never ending chest pain along with breathing and swallowing difficulty. Its bad- I feel like I’m going to choke. My cardiologist ordered a PET SCAN of the heart- the first thought is an autoimmune related condition there.

Would the Cardio Pet Scan cover the lungs in detail as well as the heart?
If not, should I wait for a lung specialists appointment bef going ahead with all this such they may want to add to this order?
I just think unwise to potentially do this test twice-and I’d like to get as much out of this as possible. Thoughts?
Thank you.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

I’m sorry you’re suffering. I was diagnosed with Hashimoto’s/hypothyroidism in November of 2022. My first symptoms were weight gain, falling asleep almost right after I ate dinner, feeling as if there was something in my throat that was causing me not to be able to swallow properly and a swollen tongue. After prodding from my daughter, I had my Thyroid Panel (blood test) done and to my surprise, my Thyroid numbers were way off the charts! I’ve been on Synthroid and Cytomel to treat my Hypothyroidism and to this date, am feeling better. I’m not at 100% yet, but my symptoms have stopped. I’m no longer gaining weight, but beginning to loose and have stopped eating Gluten, Dairy and Soy. I believe more than anything, not eating those 3 foods have helped me the most. I wish you all the best.


Hi. Sorry you're going thru this turbulence. One thing I did learn is that the pet scan has a greater depth of diagnostic capability. My wife's cancer was in remission for a year when it reoccurred in the form of multiple myeloma. The pet scan revealed exactly where in the body it was returning. The right cancer treatment was initiated. I also remember patients being misdiagnosed/underdiagnosed until a pet scan revealed the complete picture. I would be ok with the scan. One thing I would do for sure is write down questions for your next visit. I'm doing that and keeping a few notes on the highs and lows of my PMR. So different being a patient encouraging another patient. I do sense the compassion we feel for each other and it speaks volumes. Learn as much as you can. You will keep the experts on their toes.


Oh. I forgot to mention that I did read where the activity of the cells within the lungs could also be assessed with the cardiac pet scan.


Hello @buttons5104, welcome to Mayo Clinic Connect. These are some great questions to be considering as you face some tests for your symptoms. Have you discussed these detailed questions and concerns with you provider who ordered the tests?


@buttons5104 Welcome to Mayo Clinic Connect. Were glad you found us!! I’m sorry that you were diagnosed with Sjögren’s syndrome. When your cardiologist ordered a cardiac PET scan, they want to look at the heart and esophagus where they were are close together. He is also looking at why you have this constant chest pain. Don’t delay the PET scan—it is just 1 piece of the whole puzzle. Your best bet is to ask your cardiologist the questions you asked us. They are the only ones who know .
This is a link to another discussion on Sjogrens.
Do you any specific questions on Sjogren’s that members can answer?

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