Is it Lupus?

Hi everyone,

This is going to be a long story, bear with me.... I've been on these forums (at least the old ones) a few times in the past, mostly just as a reader, but occasional poster. Now something new has come up and I'm trying to decide how to handle it, how urgent it is, etc. I think maybe I just need to get it all out of my head!!

I was diagnosed with ITP in about 2004. It hadn't been very severe - I don't get CBCs very often and just watch my bruising. It got much better until I had another child a couple years ago and it started getting worse. Then I read here about Vitamin C and have been taking that over the last year and things have gotten much better. I still have occasional bruising but it's not very bad, so I don't think my blood counts are too bad.

Well, a few weeks ago I was tested for thyroid problems. It turns out I have an enlarged thyroid and a cluster of nodules, benign - they did an ultrasound and a biopsy. During the ultrasound they found I have two slightly enlarged parathyroid glands as well.

Later tests came back with normal...TSH? - the main one...but an elevated thyroid peroxidase count (I didn't get exactly what it was). The dr. has recommended I just come back in 6 months to do another scan of the thyroid and see where it is then.

Then, a couple weeks ago, my mom came to visit. She noticed that my face was a little red. She mentioned she thought I had rosacea because she'd had it in the past, but then she made an offhand comment that the red on the face is either rosacea, or lupus, from what her dr. said, but then added she was sure I didn't have lupus. :huh:

Well, not really knowing about lupus, but not being able to get her words out of my head, I went on the web and started looking into what it is. I don't have all the symptoms, but I do have soreness in my hands and sometimes my elbows (especially when I wake up) and right now one of my feet that I have been trying to ignore. I also get stomach aches on occasion - more frequently earlier in the year, a couple times a week, but then I did some fasting to try to cleanse myself and those have gotten better, I rarely get them anymore.

I used to be so tired all the time but I finally forced myself to start exercising in the mornings and that's made a huge difference, now I actually feel like I can do things in the evening. I thought I was just being lazy.... I can't really pinpoint any times where I might have had a flare-up.

The redness on my face comes and goes - I work at home so there are some days where I don't go outside at all. But now I'm watching - and Thurs I was outside for maybe 45 minutes, and that night I was fine but the next morning my nose was pink for a few hours. This all made me remember back to a month or so ago when my son asked me if I was sunburned. I knew I hadn't been outside long enough to be burnt, but I didn't think anything of it.

So, that brings me to where I'm at now. I pretty much just have two questions:

1. Could I really have lupus? Or are there enough illesses out there that it could be other systemic auto-immune problems? How urgent is this? (I don't have pain when I breathe in, so I think that means if I do it isn't affecting my heart/lungs, or could it still be?) I know whatever it is I do need to get it checked out further, but do I need to go in like Monday, or should I just wait for the next thyroid ultrasound?

2. Should I go straight to a rheumatologist, or should I try the family doctor first? Are they going to know enough to run the tests or are they just going to send me to a rheumatologist anyway? I've been to 4 different docs about the thyroid thing in the last month and I'm not so excited about being shuffled around to a couple other drs before they figure out what's going on. I don't officially have a family doc that I've been to but my husband has been to one. I usually just go to my ob. I have a hematologist that I haven't been to for a while for the ITP.

I think I really just needed to get all of this off my chest. I've talked to my husband about all of this, he of course wants me to go in yesterday and I know I should soon but I just wanted to get some thoughts about doctors and such....

Thank you all ahead of time for your help!
Janell

Based on your insight I agree you should pursue MD diagnosis but my research (no direct knowledge) indicates Lupus is a very slow disease and often has a LONGGGG Dx process (can we say ITP?). Thus it doesn't seem to suggest an Immediate appointment but why delay?

I can't suggest which MD specialty to start with but perhaps associating with a GP (I think you should have one for when needed ,ie Flu, instead of a crisis search is prudent. Seeking references from friends re a Rheumataologist would be a good start. I doubt is matters but your prep research should help find your starting point.

I pretty sure you'll get some specific experiential advise from those who have traveled the Lupus Dx path that are active on this site.

Janell:

Based on what you described, I wouldn't worry about Lupus right now. A little pink or red on the face does not indicate Lupus. Most people with Lupus tend to have some pretty severe symptoms such as symmetrical joint pain that does not go away during the day, muscle pain, fevers, hair loss, fatigue, feeling flu-like, etc.

ITP can be a first symptom of Lupus, and Lupus can take a very long time to develop. However, a Rheumatologist will not diagnose unless a person meets 4 of the 11 criteria for Lupus. I don't see anything going on that seems urgent right now (except for the thyroid, which you are dealing with).

I'd suggest asking your GP to run an ANA the next time you see him. If that comes back normal, forget about Lupus. If it comes back elevated, follow up with a Rheumatologist but keep in mind that an elevated ANA does not mean a person has Lupus (it is only one piece of the puzzle).

As far as the thyroid peroxidase, those are antibodies against thyroid.

My advice would be to write down all the symptoms you are experiencing, and all the questions you want to ask

book yourself an appointment with the family doctor and start there first. Some doctors really listen well. They would much rather you write the symptoms down rather than diagnose oneself though we all do it all the time.

There are a whole host of autoimmune or any diseases and disorders that it could be and mothers are brill at scaring us when they don't mean to be! But you sound worried and that is enough to get yourself at the family doctor who will know, hopefully, which symptoms mean what.

Write it down and make it high priority to help you feel calmer. Next thing you do is make that appointment and write the list of symptoms and take that list in with you. Some doctors make you read it and others are willing to read it. But have it there and stick to that list, adding any you have forgotten.

Please make that your next task for your own peace of mind
xxx

Thanks everyone! Reading your posts help me feel quite a bit better. I just wasn't sure what the sites meant about a "mild" form and what that was. I will do that with my symptoms. And find a GP... My husband has one but he's not overjoyed about him so I think I will look around for another....

I really appreciate your responses!
Janell

"Mild" Lupus just means that symptoms are few and less debilitating. A person would still need to meet the criteria both with physical symptoms and lab work. I know of very few people with mild Lupus. It tends to flare and remit on an on-going basis, or remain constant.