Update

642 Views 13 Replies 9 Participants Last post by rhonda41, Jul 2, 2008

rhonda41

Discussion Starter · Jul 1, 2008

Hello.

I just want to update anyone who is interested in what I have learned the past few days about my health.

As you already know, my GP ordered bloodwork last week and she checked for several things. One of the things she was looking for was Lupus. I did not realize she was looking for that along with the other possible illnesses, but I'm glad she did. I was going to ask her to do that anyway if all of the other labs came back normal.

Long story short, my GP thinks I may have Lupus due to the results of the bloodwork and my symptoms. She wants me to see my rheumatologist as soon as possible. I have an appointment on August 27th. That's the soonest I could get in, which is a bit frustrating. If Lupus is confirmed I want to get treatment sooner rather than later.

I had several things come back abnormal in my labs. Some of them are related to Lupus and others are related to my thyroid and blood sugar.
I had high uric acid (10.0), a blood glucose level of 139, a low (53) eGFR Non-AFR.American (don't know what the heck this is), high calcium (10.5), low white blood cell count (3.6), high RDW (15.4), a positive Anachoice (TM) Screen (again...don't know what that is), and lastly...a positive ANA with a speckled pattern and a titer of 1:640.

I need to research some of these tests to see what purpose they have. My GP explained some of them to me, but I neglected to get an explanation for all of them. She is also checking me for cancer, but that is mostly to rule it out as a possibility. She ordered more bloodwork, a chest xray (I've had a dry cough for 3 weeks now), and a sonogram of my thyroid. She said it felt a little enlarged.

My blood sugar is a problem, which I fully intend to rectify. She (GP) told me that I needed to lose weight and that I need to come back in 3 months to have it checked again. If my levels are not normal at that time, I will have to be treated for it. I am going to make sure that I don't have to take medicine for something that can be controlled by diet.

So, right now I am waiting to see what the results of my new round of tests will be. I am so grateful that my GP is taking me seriously and is being so thorough. She is a real blessing and I thanked her for her sensitivity. By the time I see my rheumatologist I will have a lot of information for him (thanks to her).

Well, I've written a bunch so I'll stop here.

Have a nice evening everyone.

Rhonda

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Katharine

· #2 · Jul 1, 2008

Hi Rhonda,

I'm so glad that you seem to be getting somewhere with an answer to your questions and it is great to have an understading and attentive GP. Truly invaluable.

It is often difficult to get a first appointment with a rheumy very quickly. August 27th is actually not bad at all - even by Belgian standards :hehe: After that your rheumy should be able to schedule appointents at regular intervals and hopefully see you more quickly if need be in between times.

all the best of luck,
Katharine

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Sage Hen

· #3 · Jul 1, 2008

Hi Rhonda,

I am so happy to hear that everything seems to be headed in the right direction, in relation to finding out what is going on with your health.

You do indeed, seem to have a very good G.P. Hurrah!

I wish you the very best..Rhonda.
:love2: Sandy

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LBH

· #4 · Jul 1, 2008

Hi Rhonda

One thing I have learned over the years of having lupus, is finding a really good caring and compassionate doctor. When one takes time with you that means a whole lot to me. And they are the ones I stick with. Sure hope you get treated soon and get to feeling better.

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KarolH

· #5 · Jul 1, 2008

LBH;513459 said:
One thing I have learned over the years of having lupus, is finding a really good caring and compassionate doctor. When one takes time with you that means a whole lot to me. And they are the ones I stick with. Sure hope you get treated soon and get to feeling better.

Ditto, and they are not easy to fine either.

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LBH

· #6 · Jul 1, 2008

I certainly agree

I can agree on that one! Took me several different doctors just to find the right regular physician. And just switched to a new Neurologist and Rheumatologist. After seeing probably 10 different ones. :rotfl:

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rhonda41

Discussion Starter · #7 · Jul 1, 2008

Thank you ladies for your kind responses. I am finding myself getting more fearful as I begin to really take in the nature of this disease and the very real likelyhood that I have it. I have been on a year-long quest to find out if I have Lupus and, believe it or not, despite my fears I have a sense of relief to finally know that I probably do have it. That sounds strange, I know, but what I mean is that I now know that I wasn't imagining my symptoms or making more out of them than they really were. I've been vindicated to some degree. Plus I can get treatment for it and hopefully keep myself from getting really sick.

However, having said that, I don't want to have a major disease and I am very worried about my kidney function. I looked up what an eGFR test is for and I learned that it measures kidney function. My test was abnormal and that really scares me. My BUN and Creatinine tests were normal but just barely. I compared my current labs with my labs from December and back then my kidneys were functioning well. My labs at that time were very normal and the numbers on the BUN and Creatinine were much, much lower than they are now. This has me SO concerned, especially since I was retaining so much fluid a couple of weeks ago. It makes it all the more difficult for me to wait for my appointment with the rheumatologist in August. The good news is that all of the swelling in my ankles, legs, and hands has gone away and I am feeling better these days.

Question: Can kidney function values fluctuate with the onset or regression of a flare?

Thanks again for your support and advice.

Rhonda

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LolaLola

· #8 · Jul 1, 2008

Dear Rhonda, I do not know enough about kidney function to answer you.
Just wanted to thank you for updating us. Try not to worry, you are now closer to being helped.
x Lola

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Maia

· #9 · Jul 1, 2008

They can vary considerably, especially if when you are flaring you are taking high doses of NSAIDs. That is the reason why I've been taken off NSAIDs now because my creatinine rises substantially (& correspondingly the GFR falls since they are related to each other by a simple equation). So if you were taking a lot of NSAIDs to try to control the pain, that alone could have caused the GFR to fall.

Usually, in people with lupus related kidney issues, they are leaking protein in their urine and sometimes red blood cells too. I would have your GP run a urinalysis on you (preferably when you are not on NSAIDs) to check on your kidney functioning. Lupus related kidney issues tend to not just come and go without treatment if they are serious. Many of us here do have some minor kidney issues which never escalate and will not require heavy duty treatment.

Good luck to you - I'm glad to hear you are on your way to getting some answers and some treatment. You could attempt to have your GP contact the rheumy office and see if she can order any blood tests in advance of your appointment so that he/she has everything needed to make a diagnosis and start treatment. You can also call and inquire about any cancellations every now and then. Sometimes it works!

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rhonda41

Discussion Starter · #10 · Jul 2, 2008

Thanks Maia and Lola. I'm trying not to think about it too much although it's hard not to. I've had a lower back ache all day today and in the back of my mind I'm wondering if it is related to my kidneys. :worried:

These are probably stupid questions, but can or will a GP prescribe medications to treat Lupus or does it have to come from a rheumatologist? Likewise, can a GP make a diagnosis of Lupus or does it have to come from a rheumatologist? I'm just wondering because I really want to get on medication as soon as possible and maybe my GP would be willing to do that for me. At the very least I am going to take your advice Maia and ask her to do a urinalysis as soon as possible.

Is my eGFR result (53) a seriously low number? Can someone explain this test to me further? As I said before, I did look it up on the Net but I didn't get very specific information on what the numbers mean.

Thanks!

Rhonda

P.S. I was not on large doses of NSAIDs when I my blood drawn. I took one 200 mg Advil and that's it.

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Lily

· #11 · Jul 2, 2008

Hi Rhonda,

It sounds like you have a gem of a GP there

that's always very important that they are thorough and attentive when we are trying to work out what the heck is going on.

Here's some information that explains the eGFR test more:

Compared to serum creatinine, the eGFR more reliably detects kidney disease in its early stages. Because the calculation works best for estimating reduced renal function, the NKF suggests only reporting actual results once values are < 60 ml/min (normal values are 90-120 ml/min, according to the NKF). An eGFR below 60 ml/min suggests that some kidney damage has occurred. The NKF recommends that your eGFR result be interpreted in relation to your clinical history and presenting conditions.

http://www.labtestsonline.org/understanding/analytes/gfr/glance.html

That's just an extract but you can read more about it on the link.

Having said that I would not worry too much about it at this stage (easier said than done I know). It's one of those tests that need to be read in conjunction with your clinical symptoms and also a urinalysis (preferably a 24hr urine collection) but a dipstick test will be ok as an initial investigation.

So many of us have mild kidney problems but they come and go and don't tend to get serious. Certainly that was the case for me and many others here, even though at times the results were alarming it came and went. Being aware of it is what matters so they can compare results and take action if need be.

Your GP could treat you but in reality that's probably not ideal. August is not too far away and in the grand scheme of things a couple of months won't make that much difference. It's also important to have expert eyes on this and make sure Lupus is what you have. Your GP wouldnt start you on any of the Immunosuppressants anyway, maybe only Plaquenil. That would take a while to kick in and if you did have kidney problems it's not going to help them. You would need stronger meds for that which the Rheumy would prescribe if this is not just a one off result.

Perhaps the GP will try and get the appt moved up if she feels its warranted and things deteriorate even further. They may not though and it's important to get the right diagnosis or it may skew the picture even more being treated now. Best to leave it to the experts.

I hope the next couple of months go fast and that you can try and find some comfort in the fact that finally you are on the right track at least.

sending hugs,

love
Lily

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rhonda41

Discussion Starter · #12 · Jul 2, 2008

Thanks so much Lily. Your advice and the information has made me feel much better. I don't feel so anxious anymore.

I do have a wonderful GP and I am so happy to have found her.

I still have a lower backache today, but I'm just going to try and put it out of my mind as much as possible. I will ask for the urinalysis today and hopefully the results from that will make me feel even better. I'm trying to be positive about all of this as I know that a positive attitude plays an important role in improving my health and staying that way. It's not always easy though as I tend to be a worrier.

Thanks again for the advice and support. I do appreciate it very much. Everyone here is an angel!

Take care.

Rhonda

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beci

· #13 · Jul 2, 2008

Hello Rhonda,

I have not yet been diagnosed with Lupus although my specialist is certain this is what I have, when you have been suffering for many years like you say it is such a relief to have a name for the disease that is causing you all these problems and hopefully with the right treatment you can begin to feel much better, I wish you all the best with your appointment, and hope you are feeling better soon.

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rhonda41

Discussion Starter · #14 · Jul 2, 2008

Thanks so much Beci. I hope you can find relief too. The unknown is always so much scarier than knowing what the problem is and being able to deal with it appropriately.

We are blessed to have this message board and all of the sweet people here to help and comfort those who need it.

I appreciate your well wishes.

Take care.

Rhonda

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