I've posted on here before regarding my lupus diagnosis in September 2008. Recently, with some of my blood work, my rheumie noticed that I have hypercalcemia. On 3 different occasions my blood calcium has been high so I was sent to an endocrinologist.
I went to that specialist and he confirmed that I probably have tumors on my parathyroid. However, during my exam, he also said that my thyroid is enlarged and lumpy. I also have a big nodule on the right side of my thyroid. I go for an ultrasound in a week and will schedule a biopsy soon after. Has anybody else had this happen to them after a lupus diagnosis? Veej, maybe you can help me - could all this be related? At this point, I'm sick of tests and am scared.
Triciah, my sister is hypothyroid (no lupus). When she was Dx'ed, her dr. found nodules but assured her they're common with thyroid inflammation. They're almost always benign, he told her, but of course he made her get them checked out (which only makes sense).
Her dr. left her nodules alone (no surgery) since they weren't affecting her breathing unduly. She has to have checkups & now takes Synthroid.
Did you dr. say anything about thyroid problems causing calcium to not be absorbed into bone? Sis told me something about an calcium/osteoporosis concern related to thyroid malfunction, but I can't remember what. (Sorry!)
FYI, my sis, who's notoriously bad with tests, sailed thru hers, so I'm honestly thinking the tests can't be that awful! So I hope you find them easy & get good results back soon. I'm very sorry you have this worry on your plate & hope it can be put to bed PDQ. Sending all my best, with a great big hug, Vee
Thanks Veej. The tumors on my parathyroid is what causes your body to rob calcium from your bones.
I know nodules are common when you have thyroid problems, but I don't have any thyroid problems. I'm neither hyper nor hypo. My thyroid functions perfectly normal. I'm glad to hear that your sister's were all benign and nothing to worry about. I'm hoping the same for mine. However, I am looking at a surgery to remove my parathyroids. It just seems so crazy that the tumors and my hypercalcemia were found because of blood work from the lupus. Then, at my appointment for my parathyroid, they find the nodules on my thyroid. (I know this all gets confusing--parathyroid vs. thyroid). I guess I feel a little lucky that one illness lead to the discovery of others that could be potentially serious.
Thanks for your encouragement and support. I knew I could count on you to respond if you could. This puts my mind at ease.
Triciah, yes, I spoke only of thyroid & not parathyroid---SO SORRY! I read more & now see just what you're saying about the direct correlation between parathyroid malfunction, and too much calcium in blood but too little in bones. I really hope your tests pave the way to quickly addressing your parathyroid/calcium problems AND ALSO show that your thyroid nodules are NOT critical. We'll watch for updates & will be thinking of you. More hugs, from Vee
Thanks Angel and Vee. I went for my bone density scan yesterday and have my ultrasound of my neck to check both my parathyroid and my thyroid. From what the endocrinologist said, the biopsy will be scheduled after that.
I was just curious if this and my lupus are connected. I know with lupus, our bodies attack itself and wasn't sure if this was common in lupus patients or not.
Thanks for the good thoughts and positive words. My philosophy right now is that until there's something to worry about, I won't worry..... All the tests are getting to be a pain though. Not a week goes by without at least two tests. I haven't even gone for my pap or mammo yet and I'm thinking I don't want to go... j/k I'll be sure to update as soon as I find anything out.
I was diagnosed with the same thing about 15 years ago. My thryroid functioned normally but had many nodules. Dr's put me on Synthroid - not because my thyroid was not producing enough - but to keep it from producing the hormone on it's own and thus making more nodules, or making the nodules larger. I've taken it ever since. They said this disorder was in the same family as Lupus (autoimmune).
Wow! Thanks so much for telling me that. I'm glad to hear that it can be managed without a surgery. As for the tumors on my parathyroid, I think the only way for the hypercalcemia to be resolved is to remove the parathyroid(s) involved.
So, do they biopsy your thyroid every year to make sure they haven't become malignant? From what I understand, the benign nodules can become malignant over time and that's why some doctors remove them. At least that's what I thought my sister, a nurse told me. I'm still learning about all this so maybe I'm wrong. Good luck with your illness and keep me posted on what they do for you.
I went to the endocrinologist and my bone scan was normal. My calcium in my blood was back to normal, but it was low in my urine (extremely low). Apparently, there's a genetic disorder that causes low calcium in the urine but I didn't want the $2000 test. I have two nodules and he said he has to keep an eye on one of them. There are two more nodules developing by the one he wants to keep an eye on. He said not to worry about anything right now--and to let him worry about them. I'll re-do all the tests again in 6 months and we'll let those tests decide whether to operate or not.
I do have to have my gallbladder out though. I had a Hida Scan and my gallbladder isn't functioning. I asked my doctors if this could be related to my lupus and they both said "yes." Because lupus is so unpredictable and different in every person--this could likely be a result of lupus.
Thanks for your support and responses. Hopefully there will only be good news to report in 6 more months.
hi T ... good'ish news then! ***sigh***
altho it is hard 'not to worry' just try not worry yourself sick and if you follow doctors orders you are doing the best thing by you!
not saying negate your fears but doctor has hopefully given you a clearer picture and will do worrying if necessary! just keep your eye on things and go back for the tests etc ... in the meant time why not GO HAVE SOME FUN!!!
very glad things are okay! A
oops: meant to also say sorry about the gall bladder issue but if you dont 'need' it and it's making you sick then out i say! Good luck!
Good morning, Triciah. WHEW!!! I'm VERY glad you got the endocrinologist's assessments that you did re: parathyroid & thyroid. Your endocrinologist has a great verbal style: you must have felt so relieved with his take on the nodules, also that he'll do your worrying for you.
I'm sorry you require gallbladder surgery. But having seen people with gallbladder malfunction & inflammation (my mom) and painful attacks (my sister), sounds as if you'll be better off without it? BTW, I've definitely read (prob. Dr. Wallace's hardcover) that gallbladder problems are more prevalent in lupus patients than in the general population.
I'm so glad you got this far along & these results. Please let us know how you're doing. Shall be thinking of you & wishing you the very best, hugs, Vee
Ive have multi complex nodules throughout my thyroid. I go in and out of hyperthyroid and my tsh pretty much is barely above boarderline of hyper. Theyv'e watched mine for years. Sometimes I get ones that develop that are fluid filled and when they burst, you'll know it. Lots of pain from the jaw line to the ear.
Pearless, WOW!! I didn't know they could burst!! I just re-read my post again and it sounds like only the gallbladder is related to my lupus. However, I was told that the parathyroid, thyroid, AND gallbladder problems could all be a result of my lupus.
Another thing about my doctor (I really like him). I asked if there was anything I could do to help myself in the meantime (for the next 6 months). He told me to go home, say my prayers and be good and maybe I would be rewarded. I always love when doctors recognize that they are not God. Medicine can only go so far and then comes God. I found such great comfort in hearing that.
Thanks for all your well wishes. I find it comforting to know that there's somewhere I can turn to talk to people who are going through similar things as me. You are all a blessing to me