I have thyroid cancer-treated with RAI. Now I have lung scarring. Sent to National Jewish Hospital in Denver and they are putting me through tests for Sjogren syndrome. They think I have an autoimmune disease. Anyone been through this?? Just want to know what I have. I am 31 years old.
Bless your heart. Hang in there and know you're not alone. Passing for you. Keep us posted and I hear that's a great hospital. Trust the process and keep breathing!
Big hugs to you.
There are lots of us our here with Sjogren's syndrome. Once you have your diagnosis let us know and we will be there for you. It is a great place to get a lot of support. You are not alone.
Thank you. I was searching for someone that has been through the same journey. I am wondering if I am at the wrong place. I will just trust my doctor…amen.
I have SS and take medicine for my thyroid. I have never had cancer. I will be praying you get the answers you need so you can cope with all of these problems you have on your plate right now. If you need someone to talk to, I am here for you. Hang in there. You are stronger than you think...
Teresa the best thing for you to do, is what your Drs are telling you. It can be challenging at best to uncover autoimmune diseases. Some of us here have been thru years and years of testing, then out of the clear blue, tests for different thing start coming back positive. My own case took some 28 years to finally come to a head. So please follow what your Drs are saying. And by all means continue to update us on what’s going on. This is a site where you will find, while we don’t always have answers, we care. Hang in there sweetie
Wendy,
Did you suspect that you had an AI disease, but that blood tests came back negative? I have some symptoms of SS, but my recent blood tests all came back fine. Is it possible that these might come back positive later on?
Teresa,
Good luck with your journey, it sounds as if you've been through so much already, and you're still young. Praying for you,
God Bless.
Teresa,
I am so sorry that you’re having to deal with other health issues in addition to having thyroid cancer. I’m sorry that I don’t have any medical advice; just advice on trying to manage the emotions & frustration. I do find comfort in prayer and I hope that you can too. Hugs & prayers that you receive answers and healing.
All my blood tests--30 small vials--came back normal. I am going this week for 3 more tests, plus some sort of stress test. Yoga and prayer do help. I feel fine ,except for my watery tear ducts!!
My blood tests came back normal too but he ordered another which he said would show early signs of SS. I get the results back Wed. We’ll let you know. Don’t know what’s going on, meds & supplements helping, but i feel much better and the restasis has really helped my eyes. He’s had me on prednisone for 2 weeks but he said if that worked he’d put me on something else with less side effects. Going to Texas Thursday to see my grands! Maybe that’s why I feel better! Energy level still pretty low. Blessings to you all and hang in there one day at a time.
Have a great time. Try to put the tests, etc on the back burner for a little. I take some time to worry about my health and then try to forget it to enjoy other things in my life.
Great idea. What we fear the most is what we bring about. Reading a great book, THE FOUR AGREEMENTS. Life changer for sure. I carry you all work me everyday and everyday we’ll get better together. Sisters.
I think my family dr suspected it for many years, but the blood work was always negative, and I have yet to find a dr who would treat on symptoms alone. but with that said, my cpk was elevated for many years and they did nothing about it. so who knows
Jules said:
Wendy,
Did you suspect that you had an AI disease, but that blood tests came back negative? I have some symptoms of SS, but my recent blood tests all came back fine. Is it possible that these might come back positive later on?
it is possible to have false negatives and false positives. mine for yrs other than cpk were always very negative, other than cpk. theres also other tests they can do for SS. eye/tear test, a lower lip biopsy are 2 off hand I can think of. don't depend on blood work alone. different labs have different values for positive/negative results as well, and while there not vastly different they could be just enough different that is causing you to be negative/positive. if you haven't had the tear test go to an eye dr for one, it shows a lot. that is if your eyes are dry.
Jules said:
Wendy,
Did you suspect that you had an AI disease, but that blood tests came back negative? I have some symptoms of SS, but my recent blood tests all came back fine. Is it possible that these might come back positive later on?
Teresa I'm sorry to hear you are having such a battle now. I don't have thyroid issues but I hear they are common with AI. I do however, have some scarring on the lungs. Mine is minor, thankfully. They are watching it to be sure though because among other things, SS can cause a fibrosis-like issue for some .
My family doctor and I had this discussion. He said he was taught in medical school and it is common for people with SS to have negative test results and then positive at other times. My suggestion would find a doctor who will treat you as a patient with symptoms instead of treating the lab results.
EnjoyLife said:
Teresa I'm sorry to hear you are having such a battle now. I don't have thyroid issues but I hear they are common with AI. I do however, have some scarring on the lungs. Mine is minor, thankfully. They are watching it to be sure though because among other things, SS can cause a fibrosis-like issue for some .
Hi teresa
I have heard wonderful things about National Jewish Hospital. We have a newbie guide that would be good for you to read. Please keep us posted and if you have any questions please ask.
I am sorry to hear that you are going through so much. I had my thyroid removed about 10 years ago due to a large goiter. I have been taking synthroid and my hormone levels have been normal. I also have Sjogren’s syndrome and have been taking Plaquenil for several years. I hope you get the answers you need. You are in my prayers.
Wendy, I was wondering, what is cpk? Thanks!
Wendy8091 said:
it is possible to have false negatives and false positives. mine for yrs other than cpk were always very negative, other than cpk. theres also other tests they can do for SS. eye/tear test, a lower lip biopsy are 2 off hand I can think of. don't depend on blood work alone. different labs have different values for positive/negative results as well, and while there not vastly different they could be just enough different that is causing you to be negative/positive. if you haven't had the tear test go to an eye dr for one, it shows a lot. that is if your eyes are dry.
Jules said:Wendy,
Did you suspect that you had an AI disease, but that blood tests came back negative? I have some symptoms of SS, but my recent blood tests all came back fine. Is it possible that these might come back positive later on?