View Full Version : hello from kansas city
11-16-2008, 09:18 PM
i am 39yr old female that hasnt been diagnosed yet. I am suppose to get all of my lab results on nov 24th to see if i have Lupus. They did find that i am vitamin D defecient and that i have raynauds disease. I also have graves and hashimotos. I break out into a horrible rash all over when i am out in the sun and just have alot of fatigue and alot of pain that moves around but always stays in my knees. My Ana test has come back crazy out of whack positive. Does this sound like Lupus? It's driving me crazy not knowing what is wrong with me and why i hurt all the time and why i am tired all the time.
11-17-2008, 05:29 AM
Welcome to the site. Are you seeing a Rheumatologist? It sounds from your symptoms like you may have Lupus. Have they put you on any medications yet?
There are a lot of nice folks that come in here and they have a lot of good information.
If it turns out that you do have Lupus it can be treated with medications. It is not an automatic death sentence and a lot of us with Lupus are on medications. I hope that you will post and let us know what the doctor says on the 24th. We all care about you and want you to feel welcome here.
11-17-2008, 05:00 PM
Hi Tiffany -
The wait for a diagnosis can be agonizing and frustrating. Hopefully, you will know something more definitive very soon. Understand that sometimes, lupus is very difficult to diagnose. As Kathy said, working with a good rheumatologist is essential. There are many medications, Plaquenil being one, that help many of us who suffer with the joint pain and fatigue.
I hope you get your answer soon. We are here for you.
11-17-2008, 07:35 PM
thank you so much for your encourging words. I do have really good Dr. I am going to ku medical center which is a teaching hospital and they really have been helpful. And you actually talk to the Dr on the phone instead of a nurse. It just gets so aggrivating
11-18-2008, 11:27 AM
From your symptoms, it is quite possible that you have Lupus. However, your symptoms could be indicative of several other auto-immune disorders. That is the frustrating part about waiting for a definitive diagnosis. Lupus is very hard to diagnose and the process takes some time.
Whatever you diagnosis, we are here to help you as much as you can and to give you answers to your questions.
Welcome to our family :lol:
Peace and Blessings
11-20-2008, 05:39 PM
I went to so my endo. dr today about my thyroid, since i am going to a teaching hospital to see my dr's they are able to look at all the tests that both dr's run. He thought it sounded like lupus but said to just wait until i see my dr on monday. I asked if my hashimoto or graves would effect the ana test results and he said no. So they took more blood today to check my thyroid and i guess i will wait until monday for my next dr appt to get all my results about the lupus.
thank you Tiffany
11-20-2008, 11:31 PM
Just stopping in to say welcome...hugs...
I hope they are treating your symptoms without a diagnose...
Monday will be here soon enough, enjoy tomorrow and enjoy the up coming weekend as much as you can..
Keep looking for your wellness..hugs,
11-21-2008, 05:17 PM
Hi, Tiffany - I am so glad I found your post! I too am in my upper 30's, and have just been diagnosed with Hoshimoto's Thyroiditis. I honestly think there is more wrong with me, though.
The reason I am responding to your post is that I am really curious if it possible to have Graves and Hoshimoto's at the same time. Here is why I am curious:
When I first started going to the doctor with heart palpatations, shortness of breath, rapid heartbeat, etc. they told me I had hyperthyroidism and probably Graves Disease. Two tests in early September of this year showed that my thyroid was overactive. If I remember correctly my TSH at it's lowest was at .05. However, I knew in my heart of hearts that I did not have hyperthyroidism. I gained about 15 to 20 pounds in 4 months and didn't have any of the normal hyperthyroid symptoms. It was crazy. Anyway, I went to a very, very bad endocrinologist in Liberty who basically told me all the pain I am in was in my head and that the gaining weight didn't mean anything and that I did indeed have hyperthyroidism. I begged her (while crying) to please do one more thyroid test. This evil doctor sat right there and told me "Well, I can order it, but the insurance might not pay for it!" She was trying to bully me out of the test.
So, she prescribed some meds for hyperthyroid and heart palpatations and very grudgingly ordered another thyroid test. Guess what? My TSH count went from .05 to over 64!!! No only am I not hyperthyroid, I am hypothyroid! I am so glad I humiliated myself and begged for another test. I just recently went to another very good endocrinologist in the Northland, and he diagnosed me with Hoshimoto's. It explained all the thyroid problems perfectly. It doesn't explain everything for me, but it does explain the thyroid problems. I am still on my journey to see what else is wrong with me. Obviously, I am definitely looking into lupus because of all my symptoms.
Anyway, I am going to urge you to please persist with your doctors if you don't feel like they have the diagnosis correct. Double check all of the medications they put you on because the evil woman endo tried to put me on meds I didn't need.
I hope you are feeling better and I am looking forward to hearing from you. I will give you the name of my endo if you would like to have it.