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momof5children
Regular Member


Date Joined Feb 2009
Total Posts : 21
   Posted 4/3/2009 8:16 AM (GMT -7)   
I had my appointment yesterday with the rheumy and his DX was I don't know.
He explained that he thinks my joint pain in my hips, shoulders, hands and knees may be due to low iron (9) and low Vit D (12)
He also said that he thought my ANA was elevated to 1:640 because my thyroid microsomial AB were elevated to >1300. He said there was a spill over to the ANA ABs.
He asked me to try Aleve since Ibuprofen and Tylenol have not worked and come back in three months after I see an endo MD for my thyroid.
He said he can not explain the rash I get on my feet when they are exposed to the dun. It's brownish purple and rough.
Does all of this the doc is telling my husband and I make sense to anyone? We left with as much knowledge as we had going in.
Advice anyone??

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 4/3/2009 10:00 AM (GMT -7)   
I'd see another rheumy.  Get a second opinion. Or third, forth, whatever it takes.  I went through 3 rheumies before I got taken seriously.  What was handy was that my blood tests got more and more positive every time I saw someone new.  That was a bonus.
 
It's frustrating, maddening, and plain angersome isn't it? 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


Lord_Walters_Lady_Bug<3
Regular Member


Date Joined Oct 2008
Total Posts : 257
   Posted 4/3/2009 12:02 PM (GMT -7)   
Wow sounds like me. I have all these symptoms and in the past 6 months went from nothing in blood to two positive anas. One 243 as a high and one 1/160 speckled pattern. Plus I am much more sensitive to light and now am affected by fluorescent lights. I went to see the rheumy I saw 6 months ago and he still thinks Im crazy. Told me he doesn't think I have lupus and that my heart murmur and double jointedness can bring about weird symptoms. Right! Anyhow, Ginny your post has given me hope and my bf said he wants me to go see someone else because a friend of his has lupus and basically it has to get severe enough to be detected right? Well I should know something by tuesday from my labs. (antiDNA, antiSM, antiRNP, antiSSA, antiSSB & SCL 70) Hope everyone is well and keep your fingers crossed! *hugs* -Britt Hang in there momof5 it is SO tough and Ive had moments where I want to give up and Ive cried a thousand tears but Im finally getting somewhere at least. Take care and message me anytime! -Britt
*Wifey & Mommy*


momof5children
Regular Member


Date Joined Feb 2009
Total Posts : 21
   Posted 4/3/2009 1:32 PM (GMT -7)   
Thank you Ginny and Britt for your reply! My ANA has come back positive three times now. Each time is has gotten higher. I get the rash on my face, the tiredness, the sensitivity to sun, the joint pain, rashes all over my body, nose and mouth sores. He did an eye test where he put this paper on the bottom eyelid which he said I failed miserablythe paper stuck to my eye because it was so dry...but, he said he couldn't commit to a dx of sjogrens because the ab's he tested for that were neg. My only positive Ab's were the ANAs, and thyroid microsomials. I did have some dsDNA..but he said they were in the normal range. The other Abs were negativie.
I sure do appreciate all of the advice and wisdom I get from this group! Many thanks to all.

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 4/3/2009 2:54 PM (GMT -7)   
Hey gals,
 
I think that is one of the most frustrating parts of this disease and any diagnosis is when you have some of the labs test positive, and others don't.  Have you looked to see if you have at least 4 of the 11 criteria needed for a lupus diagnosis?  Try this link.  Or google, Lupus criteria.  www.lupus.org
 
Eventually, the diagnosis will come. It will!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Co-Moderator for the Lupus and Fibromyalgia forums


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 4/3/2009 3:07 PM (GMT -7)   

Moms - Sounds like me, too.   ANA went from 1:320 to 1:1280 in 6 mos.  Other labs all remain within normal range, so I still don't have a firm diagnosis.  I've had white casts in my urine, and week long fever flares that make my CRP go sky high along with a low white cell count, and elevated liver enzymes.  After about a month - those things return to relatively normal ranges.   My primary care doc treated me during that last one and didn't test any of the AI labs during that time, so I've always wondered if he'd known to do so, would they have been positive during the flare?  Next time I'll drag myself to the rheumie (an hour away) no matter how rotton I feel. 

 I also get a bad reaction to sun/flourescents- much more so than ever before - but don't have a continuous malar rash, and I get sores in my mouth.  I've had many things over the past few years that I now think are related to Lupus (2 disc shaped raised patches that took months to go away, inflamed eyelids, and a ringworm type annular rash) but seemed random at the time and if I went to the doc, just got some cortisone cream.  The eyelid rash was attributed to chlorine in the pool I was taking water therapy in (NOT putting my face in the water).  None were seen by a rheumie, since I hadn't been to one yet.  So, as everyone here advises, be sure to take pictures and include all symptoms/oddities - even if you don't think they are related.  It's a big puzzle and there are many pieces.

Find a good rheumie (don't stick with one who isn't listening) and shoot for treatment, even if you can't get a firm diagnosis.  I'm taking Plaquenil now and do feel it's made a good bit of difference in the fatigue department.  Not so much with pain - but perhaps that will improve more over time. I've been 2 years on the (not so) merry go round.  I just try to be grateful that even as frustrating as it is - I know it could be a lot worse. 

Good luck and let us know how you make out - I'd never heard about the thyroid microsomial antibodies.

Lucy  


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 4/3/2009 3:59 PM (GMT -7)   
Hi Momof5

Sorry if this is repeats other's posts, but I didn't have time to read the other responses.

I think your doctor is correct in chasing down the thyroid issue first. Thyroid really CAN cause all the joint issues and lots of other symptoms including fatigue. Seeing an endo would be the best next thing to do.

If the endo starts you on a thyroid med, it could take some time to know how/if it is helping. So, while this is very frustrating to deal with, it is a necessary next step to sort things out. I hope the thyroid is the culprit because it would be so much easier to medicate than lupus would be.

OH . . . and trying different anti-inflams is also a great idea. We each react differently to those meds and sometime ibuprofen or aleeve can work better than rx meds for some of us.

I hope you'll keep us posted.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


momof5children
Regular Member


Date Joined Feb 2009
Total Posts : 21
   Posted 4/3/2009 5:39 PM (GMT -7)   
Thank you for your response AlwaysRosie! I have been on thyroid medication for 15 years now. I am at a very high dosage per day-224mcg per day. I do agree with the doc when he says we need to figure out why the ABs are attacking the thyroid, but I am confused on the Anti nuclear antibodies versus the thyroid microsomial antibodies. Aren't these different? What confuses me the most is my TSH, T3 and T4 are all ok...I have to get these moitored every three months. But why do I have so many thyroid antibodies. According to the reference range, normal would be <60 and I am currently at >+1300.
My hope is I;ll take my supplements, figure out the thyroid issue and hopefully all other symptoms will disappear. The very same symptoms that got my doctors attention with my thyroid 15 years ago are the same symptoms that got me sent to a rheumy. Hopefully the endo will figure it all out.
As far as the criteria goes for the 4 out of 11 for a Lupus DX...I have, the rash across my cheeks at times, sensitivity and rash from the sun, to include weird rashes all over my body, joint pain, nose and mouth sores and three positive ANA results that each time get higher.
I'll continue to post what I find out, and if anyone has suggestions or infor, I certainly welcome and appreciate it all!
I hope everyone has a wonderful weekend!
~Diana
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