It's me again! positive ANA

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Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 10/2/2010 11:59 AM (GMT -6)   
Ok so in May, I was told I did not have lupus or any type of autoimmune disorder by a rheumy. Recently I was diagnosed with a pituitary disorder, only to have my doctor a few days later second guess the diagnosis she had given me.
I have been really sick for the past 3 months. Having weird seizure like episodes with vomiting, diarrhea, dizziness, fainting, tachycardia. I have a constant headache that nothing helps. I've lost 30 pounds. My sodium and potassium have been low, and my DHEA is high.
Last night I spent another night in the ER. This time my sodium was fine, but my potassium was low. Gave me pain meds, zofran, and 40 meq of potassium. The ER doctor took a lot of blood from me, and four hours later she told me I tested "weakly positive for lupus on the ANA." This totally puzzles me. I asked her if it could be lab error and she said "no, not at that level." She referred me to a neuro and an endo.
What the heck?!
Someone please explain lupus and the ANA to me; everything I read on the subject just confuses me more.

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 10/2/2010 2:00 PM (GMT -6)   
May I suggest The Lupus Book by DR Wal.lace? It is an excellent resource. Aleso the resources section at tha top of the forum is helpful. Anther place to go is
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Vicodine when things get too bad, prednisone again, various vitamin/mineral supplements, cozar, duragesic patches
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

New Member

Date Joined Aug 2010
Total Posts : 12
   Posted 10/5/2010 12:14 AM (GMT -6)   
Just out of curiosity, what pituitary disorder were you diagnosed with? I had a cortisol stimulation test done and the results indicate Secondary Adrenal Insufficiency, which I have an appointment with an endocrinologist to address. Have you had your cortisol level checked during these episodes? The reason I ask is because you say you have a pituitary problem, and I've been doing so much research on Secondary Adrenal Insufficiency, and have found a lot if info on Primary Adrenal Insufficiency (Addison's disease) which is actually an Adrenal gland problem instead of pituitary, but the two disorders are sometimes confused... and your 'episodes' sound a lot like what they call an 'Addisonian Crisis,' which is very dangerous and can be life-threatening when it happens. Apparently, it can happen in both Primary and Secondary Adrenal Insufficiency, so if your pituitary gland isn't producing enough ACTH, it can be causing your cortisol level to drop dramatically, causing the 'crisis.'

Symptoms of an Addisonian Crisis:
Extreme weakness
Mental confusion
Extreme drowsiness, in advanced cases slipping towards a coma
Pronounced dizziness
Nausea and/or vomiting
Severe headache
Abnormal heart rate – either too fast or too slow
Abnormally low blood pressure
Feeling extremely cold
Possibly a fever
Possibly abdominal tenderness

Both Primary and Secondary Adrenal Insufficiency can cause a positive ANA test result.

And, they both also cause sodium loss and resulting dehydration, which applies to me. I'm also hypoglycemic, anemic, have had hypothyroidism (although this problem seems to be fine now, even though I'm not taking anything for it), I have low blood pressure (I assume you might have this if you're being referred to a neurologist), orthostatic hypotension, weight loss (I'm skinny!), and my DHEA is high while my progesterone level is low. All of these can be caused by this disorder.

I hope this helps, although you might have already been diagnosed with Secondary Adrenal Insufficiency if you were told you had a pituitary disorder.

Post Edited (Kel84) : 10/4/2010 11:18:35 PM (GMT-6)

Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 10/7/2010 2:27 PM (GMT -6)   
My doctor diagnosed me with hypopituitarism after she drew a bunch of hormone levels. Then she gave me the stim test and told me I didn't have Addison's, and that I probably didn't have hypopit either.

She scheduled a brain MRI and an ultrasound of my thyroid, both of which I had on Monday. However, she refuses to give me my test results until I come in for an appointment on the 12th. I am so angry! Give someone a brain MRI and then make them wait til you have a free appointment over a week later to tell them anything? I will be promptly finding another doctor and one that doesn't charge 360/hr up front and bill your insurance for reimbursment.

The ER doctor was much more helpful. The Zofran and fioricet have helped me immensely! My doctor wouldn't give me anything for my symptoms even with my electrolytes being low. I have felt much better since my trip to the ER. The ER doc also gave me 40 meq of potassium, which I think really helped me a lot.

The symptoms you listed really do sound like me, and I will discuss it with the endo when I get in or the ER doctor if I end up there again.
Jessica[i/], Dx: panhypotituitarism, secondary hypoadrenalism, secondary hypothyroidism[blue/]

Regular Member

Date Joined Aug 2010
Total Posts : 124
   Posted 10/8/2010 9:32 PM (GMT -6)   
When you were tested and everything came back fine were you on steroids? At one point I was on prednisone and the dr tested my ANA and Jo-1 for the 3rd time and it all came back negative so then they told me oh well the first 2 tests must have been false positives. Then the next month I returned to the dr feeling as bad as ever and they retested my ANA and it was higher than ever. Still a low positive and since then I have been tested 4 more times and each time the numbers get higher so I think that perhaps some of the meds can effect you results. It is always good to have a couple of tests over a couple of months just to check. Also my Rhuemy told me that often the blood work won't give a good idea of how the disease is acting at that time in your system. sometimes it will be low and you can be very sick and other times it might be very high and you may feel fine. So who know.... I think all we can truly go by is how we feel that day.

New Member

Date Joined Oct 2010
Total Posts : 1
   Posted 10/12/2010 11:30 PM (GMT -6)   
Has anyone offered the possibility of a form of vasculitis. It is also an autoimmune disorder that is quite difficult to diagnose. Some of the things you describe seem to fit with what people experience who struggle with vasculitis, and many go months - years without a diagnosis until something triggers the need for a biopsy or similar. Here is the website to the Vasculitis Foundation. Maybe you could check it may have some answers for you.

Hope this helps in some way.

Regular Member

Date Joined Jan 2010
Total Posts : 82
   Posted 10/13/2010 1:34 AM (GMT -6)   
Hey im sorry to hear about your diagnosis. I have had lupus for 12 years, and have been diagnosed for a year. We found the ANA positive after a crap load of pain and a surgery. I will tell you what my Roummy first told me because it is something I like to pass on to any and every one that thinks they might have lupus. The ANA test only shows up if you are having a flare. Lupus is kinda silent when it is not active so it can only really be diagnosed with the ANA test. When you go into remission your blood work will be totally normal and dont let them try to tell you that all of a sudden you dont have lupus. This happened to my grandmother. Dont stress to much about having lupus because once they start you on the right medication your life will be of good quality...its been a year and every ana test I have had have been a 10 out of 10, so this has got to be a record flare or something, I have been on 3 rounds of tapering steroids in 3 weeks but as soon as I stop the steroids the flare starts right back up again. What can I say, my body is very sturbon lol. good luck!
SLE (lupus), Fibromyalgia, and a solitary kidney
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