LUPUS UK
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Dr Referring me to Rhematologist. Keeps mentioning Lupus but I have no symptoms

I am freakin out here. I’m 28 years old and I went in for a physical. I had horrible pregnancies and just wanted to see how my body was doing a year after my baby. I did an ANA test a year ago which was negative and never thought about it again. We live in Upstate NY and it’s winter. We have a 2 and 1 year old so I rarely go outside. Usually when my vitamins are low my hands ache. So I told him and he said that he would check them mainly Vitamin D and check to see if I also had RA. Everything for that panel came back negative besides the ANA and low Vitamin D of course. He then requested the titers which was 1:40 speckled. Since I’ve been taking the Vitamin D and Magnesium my hands have stopped aching. Today, I called to see what they thought and he said he wants to refer me to a Rheumatologist for Lupus. I’m like WHAT?! I haven’t been tested for lupus! Test me for a lupus panel first and then decide. Idk what to do at this point. The waiting game is scary. My family has no members with an AI diseases so I’m so confused at this point.

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It sounds as if your doctor is doing the right thing by sending you to the rheumy for further evaluation. The ANA test is not specific for lupus (can be positive in other AI diseases). Also, some healthy people get a positive ANA test as well, so a low, positive ANA test alone does not mean you have an autoimmune disease. Your rheumy will run the lupus panel test. I know waiting is scary, but it is better to know either way.

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I told him to run the Lupus panel, the cost of going to a rhematologist to run the same panel is out of this world compared to if he just sends me to do it himself.

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Keep in mind that positive ANA with a speckled pattern isn't specific for lupus, so even if it turns out you don't have lupus, you may or may not have another autoimmune disease -if your doctor is still concerned he/she may still refer you to a rheumy, as autoimmune disease can be difficult to diagnose.

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I know. The earliest I can see a rhematologist is in April. It’s just scary because I don’t have any symptoms so I’m kind of going into this blind and unexpected. No one in my family has any AI diseases and I know because they live into their 90s mostly. My grandma is 96 currently. He ruled out RA as he did the ra panel so far. He thought it was a false positive since I have no symptoms really but that just sit well with me. We’re stumped until other tests are done.

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He told me that he thinks it’s stress which I can admit I was and still am. My eating habits were poor coupled with having 2 under two and not being to go outside in the winter. I got a bad sinus infection, coupled with low vitamins he believed triggered a response in my body. He is saying we should wait a bit and see but still see a Rheumy just in case.

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It sounds like your doctor is great! There are a lot of us on this forum with many symptoms and doctors who either never considered autoimmune disease or misdiagnosed us or told us it was all in our head.

Autoimmune disease can occur in families, but it is not always the case. I am the only on in my family with AI problems as far as I know.

Hopefully yours was just a false positive! Good luck and try not to worry too much.

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The hardest part is not worring even though he told me not to. Haha thank you!

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Hi Jeniedo, I’m going to have to disagree with folks here. Any doctor that mentions Lupus to someone who is asymptomatic sounds irresponsible to me. Perhaps it’s where I live - California - but from what I’ve experienced doctors are EXTREMELY careful with this diagnosis or even suggesting the possibility. It’s not unreasonable for him to suggest you see a Rheumy, but I’d be upset at him for causing this kind of stress when it sounds like you already have your hands full.

Like mentioned above a positive ANA isn’t remotely enough for even a tentative diagnosis. They could do a draw tomorrow and it could be negative. Those counts fluctuate.

Also, regarding your hands and vitamins - same thing happened to me when I lived in Boston. Lack of sunlight and staying inside all the time left me with a number of vitamin deficiencies. Sounds like you’ve figured out that part.

Some friendly advice if I may: if you see a Rheumy (which I know is $$$), just be honest. Let them do the diagnosing, not your PCP. I appreciate PCPs, but their knowledge is not in this area and they can often over and under diagnose.

Best of luck and hopefully you get a clean bill of health!

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That’s why I was upset. When he talked about RA, I told him that I had already have two ANAs that were negatives due to me having horrible pregnancies back to back from severe HG. My then doctors tested for everything even Antibodies because they were sure (and I’m talking Drs from a range of departments because they couldn’t figure out what was wrong with me) that if I did have an AI disease it would show up now. I am originallyfrom the Caribbean and this happens to me every winter , low Vitamin D so I told him. He insisted on testing for RA which therefore includes another ANA test. It came back low positive on Friday and his nurse called while I was in Walmart and said oh he thinks you have lupus. Imagine my shock because for four days I had no answers besides perfect tests otherwise beside my low vitamin D and low positive ANA. He’s been kind of back tracking now since I expressed displeasure. Now I’m in a wtf limbo. And yes going to see a Rheumy is going to cost me a ton of money. Now I feel as if I have to even though I feel fine.

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Personally, I wouldn’t get yourself caught up in the (very) expensive cycle of the AI machine. If he’s backing up, your bloods are good and you have no Lupus symptoms I would suggest maybe a new PCP? Maybe one who doesn’t have a nurse call about something so serious... I can’t believe that. Sorry that happened to you. So unprofessional.

Again, maybe it’s CA, but a referral here could help. Specialists in LA often won’t see patients before seeing your records. How about he fax over all your info and have the Rheumy decide if you need to be seen? Takes the pressure off you - personally and financially - and puts your care in the hands of someone who can make better decisions.

Hope this helps :)

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Yea I live in Upstate NY and I was told that they won’t see me if I have no symptoms and a borderline positive ANA. When I actually got to talk to him he took back his advice of giving me a referral after I asked if they would even accept me as a patient , given my values, history, current and health problems . He then we will follow up in a months time to check on your sinus infection and vitamin values and if anything changes let him know. He is actually my new pcp because my old pcp retired. :/

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Sounds like things are moving in the right direction. Glad to hear it and hope some of your worry has disappeared. Happy new year!

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Should mention for all our U.K. friends - just want to say that unfortunate autoimmune diseases are a huge money maker here in the US. Pharma takes in an average of $10,000 a month per patient for medication alone. My doctors visits cost $400 a pop. It’s big business and our health departments have caught on to a major over diagnosis problem b/c lots of docs are incentivized by pharma. Our regulations here are much less than in the U.K. ... or rest of the world. It’s sad and scary that companies and medical professionals would choose to capitalize on us.

Medical bills are one of the leading causes of bankruptcy and financial ruin in the US, so we all have to be soooo cautious with our care. Like my doc (who is amazing) says: “don’t pay to be sick when you’re not.”

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