Just diagnosed with Lupus- scared, so many questions.
I will try to keep this short but here’s the back story before I ask questions. I’m a 32 year old female.
May of last year- I started having symptoms identical to menopause, periods stopped, essentially had no estrogen. But super low estrogen and symptoms were the only thing wrong. BESIDES my ITP flaring up, mildly, just some blood pools under the skin. I suffered a bad attack 3 years ago with a brain bleed and almost didn’t make it. Recovered with steroids and never saw it again- until the wild symptoms came up. Hot flashes, weight gain, you name it! So I got on hormones and my periods came back, felt way better. Until about March, noticed I still didn’t feel right (hair loss, edema got worse, severe bone pain and swelling, tender breasts, cramping and feeling sore even off my cycle, lost of ITP flares, heat palpitations every week once or twice) so I made an appointment with my ONGYN but had to wait almost 2 months to see her. Giving her ALL my blood work from a year, my mom’s history, all the symptoms and ITP flare ups, she told me perimenopause wasn’t possibly bc I had normal FSH hormones. She then asked if I have ever had an ANA test for autoimmune diseases. I told her they might have done it in the ICU when I had ITP but she said something else could have developed later on and to get the test done right away and seemed concerned if it were to come back positive. Well, it came back positive and specifically for Lupus. After much research, it all makes sense now. I’m waiting for her response and to see the specialist.
I got bloodwork done from my hormone dr and I noticed my protein level was high. And I see that it’s related to kidney damage and that is super dangerous. I’m so scared. I have to wait to get insurance and try and see someone but I have a grave feeling that going untreated for over a year plus my symptoms- it has attacked a lot of things inside me that I’m unaware of. Anyone else have similar experience with the kidney and heart stuff?
Okay! First let’s take a big deep breath together. I know I need one. And I can tell by your post that you are feeling pretty stressed. Which I would be too!!! So breathe in for 3 2 1 and out for 3 2 1. Idk if it helped you but it did me a bit. I know all of this can be very scary. My biggest tip is to try and stay off Google. Bc Google will tell you the most awful and terrifying things that could be wrong. Then when it comes to it, that’s probably not right. Dr. Google failed medical school but doesn’t seem to know that. I know how that’s the first place we want to go when we get news regarding a new possible diagnosis. But it can be very very bad for mental health. Talking about myself here. I’ve had to just skip Google period with the exceptions of a few sites that I know are legit.
Now let’s talk labs and kidneys. What exactly was done besides protien levels to look at your kidneys?? That isn’t great to see. But the numbers we look at most when looking at kidney, their function, and involvement with lupus. Are part of a basic or complete metabolic panel (bmp or cmp). In that panel
It will show things like your BUN, Creatinine, and GFR. Those are the numbers that give us a much better look at how the kidneys are working. I saw you mentioned that you had high protein levels in your blood? Is that the level you were talking about? That protein level doesn’t always relate JUST to the kidney. They best way to assess protein in the kidneys in through a urine test. That’s what’s going to give the drs an idea of how your kidneys are doing. In combination with the things I mentioned earlier (BUN, creatinine, and GFR done from blood draw).
As far as waiting to be seen, do you have a primary care that you can see to at least help you go thru labs until you are able to get in with a rheumatologist? How long do you think the wait will be for Insurance? You can call and talk to that office and see if they take self pay patients!? Sometimes if you are self pay they will give you a discount. Or my hospital
Did. That’s just a thought. But at least a pcp would be able to talk to you about some of the lab results and order any more that they feel might be necessary. I will say in many cases lupus is not super fast moving. Most of us wait I want to say like 6-10 years (that stat may not be perfect but it’s ridiculous the Amt of time it takes) to get an actual lupus diagnosis. I started having symptoms around 12-13. And it wasn’t til 25-26 that I was finally diagnosed with 4-5 different conditions. It just takes forever. I hope I was somewhat helpful and you don’t want to throw your phone at me LOL. If we can help in any way, please continue to comment and reach out! That’s what we are here for. Sending you lots of love and hugs.
Amber RN, BSN, Team Member
Thank you for your response!!
So i only have bloodwork from my hormone dr where i get HRT. BUN, creatine and GFR were all normal. Just the "protein, total" was high and "chloride" was low. CBC was normal. I got the ANA test done thru quest diagnostics, i dont have health insurance so thats where i go for all my bloodwork and pay out of pocket. The test cam back Positive with a titer of 1:80 H, pattern Nuclear, homogeneous and described being assicoated with SLE and idopathic arthritis. After all the testing i have done in the last year to figure out what was happening to me, My OBGYN said either you have POV, but with all the increasing symptoms she suspected something else causinging these problems, and she sure was right. im waiting for her referral in order to get into see a rheumatologist. until then ive def. been googling way to much, mainly to understand the desease and watching videos to be informed. but after watching them everything makes SO MUCH SENSE when i think back to when it all started and whats been happening to me and symptoms. everything is starting to make sense. and we really cant afford insurance, but i also cant afford to self pay lol. so im not sure what to do. Im happy to fially have some answers though. do you have any suggestions on what other testing to do until i can see the specialist?it sounds like you have an amazing OB who was willing to stick with you and get you some answers. So many don’t have any provider like that. gave you links to all the important articles. I would encourage you to search through this website and go through the forums. I always suggest that people stay off “Dr” Google! Because it can be really scary and provide a lot of incorrect Information. So just keep that in mind when you are googling. There are lots of inaccurate information. Sites like WebMD, healthline are not the best. And you absolutely want to stay away from Wikipedia. I’m sure you know this, but anyone can change the information on wiki pages. So just make sure you are staying on reputable sites like the NIH, the Cleveland clinic, Mayo etc.
Getting answers is the best part. It’s never great to get news like a chronic illness. But the fact that you finally have answers and you know that all the things you’ve been feeling aren’t in your head. I don’t know your financial situation obviously or the exact requirements for Medicaid. But you might look into it and see if you could qualify. Insurance is insurance! Sending big hugs and love.
Amber RN, BSN, Team Member
Gentle hugs. I know it has been super scary to have to deal with it all. I'm so glad your OBGYN was proactive in getting tests that could help confirm what is exactly going on. There are many tests and conditions that are used to get a firm diagnosis. Here is a listing that may help you to speak with your doctor.
https://lupus.net/blood-testsAs far as protein. It is linked to some kidney issues. Here is another article to give you more information about that. https://lupus.net/clinical/high-protein-lupus-nephritis
I know it's a lot of information to digest but it gives you a small starting point to learn a little more.
I am not sure what area you are in, but you can look at clinics in your area to find a rheumatologist. The American College of Rheumatologist also provides a list of doctors. Maybe try reaching out to one in your area and find out if they will help you get in to see a specialist at a low cost.
https://my.rheumatology.org/rheumatology-provider-directory
I know it is is frustrating and scary. Sometimes reaching out to different organizations to seek help to see a doctor may help as well.I hope you get to see a doctor soon to start figuring it all out and get the help needed. ~Racquel~ team member
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This community understands how overwhelming and frustrating it can be.
I do hope the linksincluded will provide some helpful information.
Unfortunately, we are unable to give medical advice over the internet (for your own safety). I hope you will be able to reach out to your healthcare provider to address your concerns/test results.
Please keep us updated, Doreen (Team Member)
Look after yourself
, great advice for !
Best, Erin, Team Member.
