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Emmy1234's avatar

Are Lupus and Thyroid cancer related?

Asked by Emmy1234 (878 points ) December 5th, 2013

Lots of details! First off I have an Aunt (mother’s side) that has Systemic Lupus Erythematosus and Hypothyroidism. My grandmother had hypothyroidism. My mother recently had thyroid removed d/t papillary thyroid cancer. All labs prior to removal were normal but she had large cancerous nodules. My mother continues to have chronic fatigue, joint pain, swelling, trigger fingers, and has recently started getting these circular growing red patchy areas that come and go all over her body. Her thyroglobulin levels are slightly elevated. Last TSH was 162 (doc. says keeping it high to prevent return of cancer). My son has a SEVERE skin condition since 2 months (dx. as eczema) that is only partially controlled with a steroid cream. My mother’s skin condition and my son’s look very similar. The Doctor has said my sons may be psoriasis. I have thyroid nodules and chronic fatigue also and I am to get a biopsy soon. I highly doubt we all have lupus but speculate if there is some sort of autoimmune disorder that we may have that might be causing this. Really frustrated because I want answers for my mom and want her to feel better. It’s been almost 1½ yrs since thyroid removed and she still feels bad but is still having testing (next is a CT scan). Its been so long an still no answers. Does anyone know of any autoimmune disorder that could cause this? I think it is more than a coincidence that we all are having these issues. Anybody have any insight they might want to give?

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20 Answers

gailcalled's avatar

Here’s

a recent paper from The American Thyroid Association that seems to have found some links.

Conclusion: “What are the implications of this study?

There appears to be an increased risk of papillary thyroid cancer in patients with SLE, especially those with positive TPO antibodies. These patients should have a careful clinical examination of the thyroid as part of any physical examination.”

I will send this question on to our lovely resident MD, @Rarebear.

Emmy1234's avatar

@gailcalled- Thank you so much! I couldn’t find anything definitive when I looked online. I will print this for my mom. I don’t understand why her endo doc. has checked into this : /

Emmy1234's avatar

hasn’t* typo!

gailcalled's avatar

That study was done in 2007 but still, it shows that someone was interested in the correlation. Push her endo doc on this issue.

Google “Lupus and thyroid cancer.” A number of hits came up, some more rigorous than others, and some patient-driven forums.

Emmy1234's avatar

Her endo doc. is a hateful hag and she is switching soon. The lady doesn’t like to be asked questions or be questioned. I am also worried about her switching mid care but there has got to be someone better out there! Maybe I was not looking on the right sites when I searched.

gailcalled's avatar

It is vital to have a doctor who treats you with respect and as an equal partner. “A hateful hag” sounds awful, no matter what her objective medical skills are. There must be some better choices for your mother.

Pandora's avatar

@Emmy1234 . I don’t have an answer for you but I can’t help but wonder if thyroid problems just start a cycle of other problems. It is such a vital system and I think doctors haven’t quite figured out how to make it better without making everything else worse. I know so many people who have been treated for either hypo or hyper and they all have several things in common. Their health starts to go crazy. Of course untreated the same will happen.

Tell your mother to run from the doctor. My husband had a doctor like that who had him on steroids for his condition for 2 years. It wasn’t necessary. I kept insisting he look into diet change and maybe allergy connection but the doctor was a stubburn ass who wouldn’t see that the steroids was destroying his body. Finally my husband decided to take my advice, and dump the doctor and do it my way. (oh he has Colitus, not the same thing I know). He was afraid to go against his doctor but a friend helped me to convince him that he was on his way to a coffin. Today he is 95 percent healthier than he was with that doc. He still is suffering long term affects from the steroids. He was so bad back then that people did not recognize him and the steroids were not doing anything for his condition. His condition was getting worse. Point is the doctor only knew one way to work with my husbands condition and his high and mighty attitude would’ve killed him. Take your mom to see another doctor. One that is interested in actually curing their patients.

Emmy1234's avatar

@gailcalled & @Pandora- She is seeing a new endo sometime this December but not sure what date. I have no idea if this new one is any good. Her current endo is over 1½ hrs away (we live in a very rural area). This doc. has had my mom in tears at several appointments and my mom is to the point she is afraid to ask any questions. My mom also refuses to take me with her to her appts. because she knows I’ll tell that Doc. where she can stick it! She told my mom her fatigue was not r/t her thyroid but did not offer to refer her to someone else. I find it hard to believe that the fatigue is not related to that because her TSH was 162 and normal is .4?-4? that has to be making her feel bad. She had the yearly test to see if cancer had come back and it was negative but now she is sending her for another CT because of the Thyroglobulin Antibodies elevation. This doc also refuses to let my mom have any of the OP testing done at our local hospital and wants her to drive 1½ everytime labs or CT, etc. need done. This Dr. has also had a malpractice case and lost which I take with a grain of salt because I know some people are sue happy but maybe there is something to it.

gailcalled's avatar

Are there any other family members to help or humane assistance from your mother’s PCP or oncologist or, if she is old enough, a social worker or ombudsman? You mentioned elsewhere that you are a nurse. Do you have contacts who can help you work the system for your mother?

Can you simply insist she not go alone to her endo appointment? Is she near a large medical center?

JLeslie's avatar

There is no way the doctor is keeping TSH at 162, unless maybe you don’t live in America and the lab range is completely different. Normal ranges arevusually under 5.5. Even when my thyroid is still in normal range, but close to the edge of normal I can get redness on my skin, hair falling out, and more.

Rheumatic conditions seem to run in families, I don’t think science has figured out all the connections yet.

I do recommend she have her vitamin D tested (even though it will drive @gailcalled crazy) because a lot of people, including myself, relate some of their muscle pain to when they are deficient in D. I don’t think it will solve everything even if her D is low and she gets it into normal, but every little bit of relief is worth striving for. Some skin conditions actually get better when exposed to the sun, People have success with it for exzema I know, but I am not sure about psoriasis. I honestly don’t know a ton about those skin conditions, but you may want to google about sun treatment. Also, what I am not sure of is if it also responds to just raising D levels, or the light spectrum actually has to hit the skin, and the D doesn’t actually matter for those conditions. But, like I said, I think the vitamin D might help with other things if she is actually deficient. Plus, don’t forget the sun damages us in other ways, so I am not saying go out and lay in the sun all the time. You have to way the risks and benefits.

I’ll assume they checked her for Lymes disease?

They checked her Ebstein Barr numbers?

Her ESR? Also, might be called Western Gren.

I also assume her iron gets checked. Low iron will cause a lot of fatigue.

Autoimmune diseases are frustrating and it is common to burn through many doctors trying to seek answers. I assume your mom has seen a Rheumatologist?

I recommend to her always looking at your lab work yourself and not just relying onndoctor interpretation. Anything close to being outside of normal ask about and consider treating. I don’t mean do it without your doctor. For instance, my friend came back with lowish B12 levels. The doctor didn’t tell her, she only knew because she saw her labs. Her doctor does not test it regularly, she had asked for it to be tested. Since it is not done regularly, she easily might dip down to borderline or below normal levels and wouldn’t know, so why not take a supplement or change her eating habits to try to move it into a safer range. She found out later the level she was at some doctors would treat with a B12 shot to be on the safe side.

I hope your mom gets some answers. For me the psychological frustration of dealing with the doctors and insurance companies was almost worse than being sick.

Emmy1234's avatar

@gailcalled my mom is only 59 and still working. I talked to my moms PCP about switching her because the endo was mean and her primary did do that for me.
@JLeslie- Yes my mom’s TSH was 162 I saw the lab work myself. We live in WV. I’ve seen a lot of critical TSH ‘s being a nurse and thats the highest I’ve ever witnessed. I questioned mom and my spoke with my sister about it (who is also a nurse). My mom said that the Doctor wants her high to prevent cancer from returning but 162??? seems pretty darn high to me! She had a lot of problems with Vitamin D after surgery because the parathyroid was damaged but as far as I know it is okay now (according to endo). She does have Epstein Barr Virus not sure if she’s been checked for Lymes. One of her sisters has Lymes disease. No she has not saw an RA Doc. Nobody is referring or doing anything!

JLeslie's avatar

Most of the population has been exposed to Enstein Barr and come up positive, but I guess maybe they look at the levels as part of Chronic Fatigue. That may have changed since I first learned about it. I never had mon, but I would not be surprised if I my Ebstein Barr shows I did.

Does she have high blood pressure, low heart rate, are her other thyroid numbers normal? I unfortunately know nothing about the parameters they look for post thyroid surgery, I don’t know if they are different, except to say that TSH at 162 is ridiculously high under normal circumstances as you know. I also have never seen on labwork a note for a normal range if someone has had their thyroid removed. if the ranges are the same for post surgery she must feel like total shit with a TSH like that. I would be dead probably, but I didn’t have thyroid cancer nor my thyroid removed. I have been as high as 94.6. Skin problems, hair loss, high blood pressure, feeling crazy, sleeping forever, heart rate down to 46 at night and in the 50’s at rest during the day, feeling spacey. Thing is I start to have some of those symptoms when my TSH is at 4.5.

I’m glad they checked her D, make sure she stays on top of it. For a few months I lowered my D dose hoping I could just maintain the levels I had reached and my numbers took a nose dive. I didn’t expect it. I went in crying to my endocrinologist I was in so much pain and the test that came back messed up was the D that’s when I really learned how much it affects me. Previous to that I didn’t know what had helped me feel better because I was correcting my iron, D, and thyroid and some other things all at once. I also do not know much about the parathyroid, although I understand that D is very intertwined with that somehow. I know someone who has parathyroid problems and I am not sure how she treats it.

I think she should get another opinion. Another endocrinologist and a rheumatologist. Or, is it the oncologist saying it should be that high? I might have missed what you wrote. Does she need a referral? Or, can she just make the appointment and go? Also, I’ll ask rarebear to comment on the Q, he may know how the tests are read after thyroid surgery he is a GP or internist, I don’t remember which. Also DrHat is Emergency Medicine and they get thyroid cases like this where the person is having extreme symptoms, sometimes heart concerns, and it winds up being their thyroid. Even if they don’t know they can probably look it up in a relaible source. No matter what I say get a second opinion with an endocrinologist. If indeed her TSH should be in the sake normal limits that might correct everything. Once she is in the right place with her thyroid meds (if it is indeed wrong) then you can start dealing with addressing the lingering symptoms and maybe see a rheumotologist also.

She takes Synthroid or Armour or something similar right? To give her back thyroid hormone.

Disclaimer: I am not a doctor.

Emmy1234's avatar

She takes brand name synthroid. I don’t know what ranges should be after thyroid removal either. There is so much that I don’t know about this so it is hard to tell if she is getting the correct care. I just know something is not right and its been 1+ years. A person should not have to feel this way and not have a clue whats going on and her doctors seem to not be making any effort to determine causes. The second opinion is going to come from the new endo doc this month. We’ve been waiting a long time for her to switch. It takes months to get in to endocrine doctors here. Ive been waiting…2–3 months to get in for my first appt. @JLeslie

JLeslie's avatar

It’s awful to wait so long for an appointment. I just laugh when people talk about how long it takes in Canada as some excuse for why we should not do a socialized system here. I have waited months to get into some doctors also.

I found this which is an association for people who have survived thyroid cancer. Maybe give them a quick call to ask about the thyroid labs? Phone number at the bottom of the link. You don’t need to necessarily discuss your mom’s numbers, but they can maybe give you information on the parameters they like to see after surgery and look back at her labs if you have a copy to see where everything falls. They also might recommend doctors in your area if you wind up unhappy with the appointment you have coming up. Hopefully, it goes well.

JLeslie's avatar

Is her blood pressure high?

Emmy1234's avatar

Oh no sorry forgot to answer B/P, Pulse normal but Cholesterol slightly elevated

Emmy1234's avatar

Maybe I can get in a support group and they would know

JLeslie's avatar

Usually BP is high when someone is very hypo, so that is a little confusing. Maybe the TSH was 1.6? Do you think that is possible? That you read it wrong. Or, that you were looking at the T4 number or something?

Emmy1234's avatar

It said 162 no decimals to separate the range did have decimals though. If she said she was running her high 1.6 wouldn’t make sense either. I just don’t know. I think I am going to demand she take me to her next endo appt. so I can get some answers. If that dr. thinks she is going to yell at me she picked the wrong gal. I might have to get bailed out of jail! lol

JLeslie's avatar

True. 1.6 wouldn’t be high.

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