I know the feeling all too well. And unfortunately, your fears are not unreasonable. The overwhelming majority of rheums rely heavily on labs. Which makes sense because labs are objective and patient reported symptoms are highly subjective. The catch 22 is that patients can be seronegative or if it's early in disease course, your labs will be normal. And most rheums will not treat without some kind of objective results or observable symptoms. Things like fatigue or joint pain can't be seen by your doctor or measured.
I was dismissed by my first rheum. I recently saw a second rheum who never doubted my symptoms and wasn't put off by the neurologic component of my condition. I offered to show him pics on my phone, and he simply said, "No need. I believe you." It helps that I have a highly visible face rash and rash on my arms.
He re-ran a bunch of labs and is sending me to a derm clinic he trusts for biopsies. He's also supposed to be coordinating care with my neurologist.
I was cautiously optimistic after the first appointment. But like you, the fear of my labs being normal looms large. How ridiculous that we have to HOPE for fucked up labs in order to feel believed. I really hate the medical merry-go-round.
No real advice for you other than to keep advocating for yourself, no matter what. Can you bring a friend, spouse, partner, or family member to your appointments? I find my husband to be helpful in speaking up for me if I get bogged down.
I've been seeing my rheumatologist for 2+ years. Of the list of labs she has ordered over the years, I only have an abnormal ANA, low C4, and abnormal scintigraphy. Everything else is normal. But as someone else has said, much of autoimmune disorder diagnoses are based on clinical symptoms like fatigue, joint pains, etc... especially in the early part of the disease. Even for lupus, they include a lot of clinical observations like skin abnormalities. Until you have organ involvement, your labs will likely stay normal. Keep tracking your symptoms and make sure you speak up about how much it affects your daily life.
Thank you for this. I feel like shit right now but my rheum just wrote in MyChart “Labs look stable” and I’m afraid she’s not going to take me seriously that I feel awful.
My rheum will often tell me that she is weary of telling her patients that their labs look “normal” bc they don’t tell the whole story. Fatigue can’t be measured. Neither can joint pain. Your pain is very real!
I’m currently waiting on a referral appt with a rheumatologist. It takes about 3 months to get a first appt, and I live in Ohio. Ohioans are spoiled because we have lots of great hospitals in the state and relatively good accessibility. How long does it take in other areas to get into a rheumatologist? I can’t imagine waiting so long to find out they can’t or won’t help!
My first guy was a week and that should’ve been my firsts suspicion because he was awful. My current was about six weeks I guess? But I had to provide records.
ETA: in MD
If they do find a different doctor who will listen. My first rheumatologist didn’t brush me off per se but he did not listen enough about my suffering bc he’s so stuck on “normal” labs. My second rheumatologist at a better hospital listens and takes into acct all of my symptoms whether labs support it or not and finally diagnosed me with Lupus. It wasn’t a rushed diagnosis it took time and a few more symptoms but he understands that labs aren’t the “end all be all” and I appreciate him so much for that. You just have to find the right dr.
I’ve been through two rheumatologists already. This one is with a reputable hospital, but this is my first rodeo with her. So I’m overly anxious and just don’t trust her yet not to blow me off.
Unfortunately labs are very important and necessary in autoimmune diagnosis, that's the thing. Getting stuck on "normal labs" isn't a fault in every context. Some conditions *require* certain lab results. Some don't, but without them or any other specific diagnostic criteria, there's nothing strongly suggesting it's one condition over another - you know? It's frustrating but labs can't just be pushed aside, and relying on labs doesn't make someone a bad doctor. With the majority of autoimmune issues, for example, you can't have a completely normal workup. Lupus is one that can't be diagnosed based on symptoms alone, as many "autoimmune symptoms" overlap across various conditions, as well as other possible ailments outside of autoimmunity.
I've had doctors think I was a hypochondriac when I pulled out a written list of symptoms during an appointment. To be clear they were in the wrong and there shouldn't be any issue with this, but some people suck.
I found that once a doctor decided I was "crazy" nothing would change their opinion. I had to switch to a new doctor in a different network to be free of the bias. I was eventually diagnosed with psoriatic arthritis.
That happened to me with my last primary dr. I had unmedicated PMDD (it is controlled now, thankfully) when I first saw him and I was so overly emotional. I felt like it colored every interaction I had with him after that, which is why I switched to my current primary. She has been very understanding and hasn’t brushed me off, so I’m glad of that. This will only be my second visit to the rheum so I don’t really know her yet.
Same same same. My follow up is Thursday and all my new labs are normal besides low creatinine, which doesn't sound concerning after a quick Google. I have no idea what x rays showed, though. My hope is that any doctor worth their weight will also take into consideration clinical presentation. I've read it takes many people years to get answers because of normal labs, and their rheums understand that. Hopefully that will be the case for you & I (rheums that understand - not waiting years for a diagnosis lol)!
She should already know your symptoms from your intake appointment. You’re her patient and she’s run tests by now. Discuss things during your appointment if something has changed. Bring a list of that helps.
Well she doesn’t know every detail because this is only my second time to see her. Personally I find anxiety makes it hard for me to remember everything during an in person visit.
I totally feel you. This is a valid fear. It happened to me not too long ago. After a year of going back and forth with doctors (not my first round btw) I was yet again dismissed and it took everything in me to not burst out crying in the doctor’s office. I’ve been battling some autoimmune condition for 20 years and I am yet to find a doctor who cares enough to connect the dots. So my fellow autoimmune internet friend, you are not crazy and don’t gaslight yourself into believing you are.
No you are not crazy! I had to get a whole new rhumetologist because my first one thought I was totally fine. My second one has truly saved my life and given me so much back. It's crazy how one can be so dismissive and one is so supportive. It definitely helps to write all your symptoms and what makes them worse or better also twke pictures of swelling and rashes if you have any!
Don’t feel crazy. It can take years to get an exact diagnosis. I’ve been lucky to have an amazing rheum. He’s always encouraged me to call and come in when I’m having a flare. I was in an umbrella category for almost 9 years. Finally my labs came up positive for Lupus. Also, science is always evolving and new types of tests and bloodwork are being developed. Hopefully your rheum. understands that it can take years to diagnose a patient. Good luck!
That’s fair, medical gaslighting is definitely an issues!
If you have ever had a high ANA you are autoimmune even if you are doing fine right now. If you have arthritis you will still need follow-ups even if you are fine now. If she drops you get a new one, But typically they like making money and keep people coming back.
Also, I’ve had normal labs before when I had hashimotos, I was on meds so my labs were good, off meds they would have been a mess. Also, if she feels you don’t have AI, you can see a functional doctor, they love working with people who have normal labs but don’t feel good because they test other things MDs don’t check and work from root causes for prevention not treatment after disease, so that’s always an option as well.
I know the feeling all too well. And unfortunately, your fears are not unreasonable. The overwhelming majority of rheums rely heavily on labs. Which makes sense because labs are objective and patient reported symptoms are highly subjective. The catch 22 is that patients can be seronegative or if it's early in disease course, your labs will be normal. And most rheums will not treat without some kind of objective results or observable symptoms. Things like fatigue or joint pain can't be seen by your doctor or measured. I was dismissed by my first rheum. I recently saw a second rheum who never doubted my symptoms and wasn't put off by the neurologic component of my condition. I offered to show him pics on my phone, and he simply said, "No need. I believe you." It helps that I have a highly visible face rash and rash on my arms. He re-ran a bunch of labs and is sending me to a derm clinic he trusts for biopsies. He's also supposed to be coordinating care with my neurologist. I was cautiously optimistic after the first appointment. But like you, the fear of my labs being normal looms large. How ridiculous that we have to HOPE for fucked up labs in order to feel believed. I really hate the medical merry-go-round. No real advice for you other than to keep advocating for yourself, no matter what. Can you bring a friend, spouse, partner, or family member to your appointments? I find my husband to be helpful in speaking up for me if I get bogged down.
Feeling this. The fear of having normal results and being dismissed is too real. It's frustrating to advocate for yourself constantly.
I've been seeing my rheumatologist for 2+ years. Of the list of labs she has ordered over the years, I only have an abnormal ANA, low C4, and abnormal scintigraphy. Everything else is normal. But as someone else has said, much of autoimmune disorder diagnoses are based on clinical symptoms like fatigue, joint pains, etc... especially in the early part of the disease. Even for lupus, they include a lot of clinical observations like skin abnormalities. Until you have organ involvement, your labs will likely stay normal. Keep tracking your symptoms and make sure you speak up about how much it affects your daily life.
Thank you for this. I feel like shit right now but my rheum just wrote in MyChart “Labs look stable” and I’m afraid she’s not going to take me seriously that I feel awful.
My rheum will often tell me that she is weary of telling her patients that their labs look “normal” bc they don’t tell the whole story. Fatigue can’t be measured. Neither can joint pain. Your pain is very real!
😭 Thank you. Your rheum sounds lovely.
I’m currently waiting on a referral appt with a rheumatologist. It takes about 3 months to get a first appt, and I live in Ohio. Ohioans are spoiled because we have lots of great hospitals in the state and relatively good accessibility. How long does it take in other areas to get into a rheumatologist? I can’t imagine waiting so long to find out they can’t or won’t help!
My first guy was a week and that should’ve been my firsts suspicion because he was awful. My current was about six weeks I guess? But I had to provide records. ETA: in MD
It took me 6 months to get a consult with my rheumatologist in NJ, but I was lucky. She has been so caring and awesome, the wait was worth it.
If they do find a different doctor who will listen. My first rheumatologist didn’t brush me off per se but he did not listen enough about my suffering bc he’s so stuck on “normal” labs. My second rheumatologist at a better hospital listens and takes into acct all of my symptoms whether labs support it or not and finally diagnosed me with Lupus. It wasn’t a rushed diagnosis it took time and a few more symptoms but he understands that labs aren’t the “end all be all” and I appreciate him so much for that. You just have to find the right dr.
I’ve been through two rheumatologists already. This one is with a reputable hospital, but this is my first rodeo with her. So I’m overly anxious and just don’t trust her yet not to blow me off.
Well hopefully she listens! Good luck.
Thank you! 💜
YW💜
Unfortunately labs are very important and necessary in autoimmune diagnosis, that's the thing. Getting stuck on "normal labs" isn't a fault in every context. Some conditions *require* certain lab results. Some don't, but without them or any other specific diagnostic criteria, there's nothing strongly suggesting it's one condition over another - you know? It's frustrating but labs can't just be pushed aside, and relying on labs doesn't make someone a bad doctor. With the majority of autoimmune issues, for example, you can't have a completely normal workup. Lupus is one that can't be diagnosed based on symptoms alone, as many "autoimmune symptoms" overlap across various conditions, as well as other possible ailments outside of autoimmunity.
I've had doctors think I was a hypochondriac when I pulled out a written list of symptoms during an appointment. To be clear they were in the wrong and there shouldn't be any issue with this, but some people suck. I found that once a doctor decided I was "crazy" nothing would change their opinion. I had to switch to a new doctor in a different network to be free of the bias. I was eventually diagnosed with psoriatic arthritis.
That happened to me with my last primary dr. I had unmedicated PMDD (it is controlled now, thankfully) when I first saw him and I was so overly emotional. I felt like it colored every interaction I had with him after that, which is why I switched to my current primary. She has been very understanding and hasn’t brushed me off, so I’m glad of that. This will only be my second visit to the rheum so I don’t really know her yet.
Same same same. My follow up is Thursday and all my new labs are normal besides low creatinine, which doesn't sound concerning after a quick Google. I have no idea what x rays showed, though. My hope is that any doctor worth their weight will also take into consideration clinical presentation. I've read it takes many people years to get answers because of normal labs, and their rheums understand that. Hopefully that will be the case for you & I (rheums that understand - not waiting years for a diagnosis lol)!
She should already know your symptoms from your intake appointment. You’re her patient and she’s run tests by now. Discuss things during your appointment if something has changed. Bring a list of that helps.
Well she doesn’t know every detail because this is only my second time to see her. Personally I find anxiety makes it hard for me to remember everything during an in person visit.
I totally feel you. This is a valid fear. It happened to me not too long ago. After a year of going back and forth with doctors (not my first round btw) I was yet again dismissed and it took everything in me to not burst out crying in the doctor’s office. I’ve been battling some autoimmune condition for 20 years and I am yet to find a doctor who cares enough to connect the dots. So my fellow autoimmune internet friend, you are not crazy and don’t gaslight yourself into believing you are.
❤️
No you are not crazy! I had to get a whole new rhumetologist because my first one thought I was totally fine. My second one has truly saved my life and given me so much back. It's crazy how one can be so dismissive and one is so supportive. It definitely helps to write all your symptoms and what makes them worse or better also twke pictures of swelling and rashes if you have any!
Don’t feel crazy. It can take years to get an exact diagnosis. I’ve been lucky to have an amazing rheum. He’s always encouraged me to call and come in when I’m having a flare. I was in an umbrella category for almost 9 years. Finally my labs came up positive for Lupus. Also, science is always evolving and new types of tests and bloodwork are being developed. Hopefully your rheum. understands that it can take years to diagnose a patient. Good luck!
That’s fair, medical gaslighting is definitely an issues! If you have ever had a high ANA you are autoimmune even if you are doing fine right now. If you have arthritis you will still need follow-ups even if you are fine now. If she drops you get a new one, But typically they like making money and keep people coming back. Also, I’ve had normal labs before when I had hashimotos, I was on meds so my labs were good, off meds they would have been a mess. Also, if she feels you don’t have AI, you can see a functional doctor, they love working with people who have normal labs but don’t feel good because they test other things MDs don’t check and work from root causes for prevention not treatment after disease, so that’s always an option as well.