Sero Negative Lupus

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WillieDallas
New Member


Date Joined Oct 2017
Total Posts : 2
   Posted 10/19/2017 4:47 AM (GMT -7)   
Hello,
I have been fighting the BATTLE for 3 years and have gotten every test and repeated every test at different institutions. Very frustrated like everyone here! Have been booted by 3 Rheumatologist telling me its all in my head. My husband is a Anesthesiologist and says that he believes in sero negative Lupus. I have severe GERD ,allergies, swelling of joints, severe muscle weakness and spasms. I have had some positive test and when related negative. The only constant is the Thyroid Anti Globulin is elevated each time but still T3;T-SHIRT, T4 all normal. I also have tested negative for allergies and have a severe reaction IV contrast and shellfish. I carry a epi pen everywhere. Is anyone out there experiencing the same or similar situation? thanks

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7514
   Posted 10/19/2017 7:23 AM (GMT -7)   
I don't think we have any members experiencing anything like this, but maybe someone is lurking who can relate.

What do your immune markers show? Lupus can most definitely be diagnosed without a positive ANA, but chances are *something* will show up in the blood work.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

WillieDallas
New Member


Date Joined Oct 2017
Total Posts : 2
   Posted 10/19/2017 9:06 AM (GMT -7)   
Hello,
Thank you for the reply. I have had a positive Ana and double stranded DNA. However the next time I was tested by a different Rheumatologist at a different lab all came back negative except for the thyroid globulin which doubled by half. I have been very sick and have lost a lot of hair, difficulty moving with muscle weakness and joint pain. I do exercise almost everyday to try and manage the pain. I cannot take most medicine due to a massive head trauma as a teenager. I do go to Neurologist who thinks I do have something auto immune going on that’s is also causing excess fluid in my head. I was checked for MS. Frustrated with Rheumatologist but my Primary Care Doctor is trying to help me and so is my husband who reads massive amounts of information on auto immune diseases. Hopefully I can get an answer and get this under control!

There's Always Hope
Regular Member


Date Joined Sep 2015
Total Posts : 29
   Posted 11/15/2017 9:28 PM (GMT -7)   
WillieDallas,
Your neurologist is correct about the autoimmune disease. You stated that you have positive thyrogloblin antibodies. Positive thyroid antbodies means that you have a thyroid autoimmune disease. Have you also tested another thyroid antibody called thyroid peroxidase, or TPO? Positive TgAb, TpoAb, or both means Hashimoto's, Graves, or both. You might be told that FT3, FT4, and TSH are all normal. The fact is, normal is a very huge range where people at the bottom of the FT3 or FT4 range feel horribly sick, as do people who are at the top range of FT3 and FT4. Some doctors tell their patients that their TSH is normal if it's 4.0. A 4.0 TSH is too high and tells you your thyroid is slow and working hard to try to produce the right amount of hormones.

Your symptoms of hair loss, muscle weakness, joint pain, feeling overall very sick and GERD can all be thyroid disease symptoms. TBI's, traumatic brain injuries, can damage the pituitary gland and effect the body's ability to convert T4 into T3. With a TBI, it's important to test for T4 to T3 conversion by testing RT3, or reverse T3, along with all the other standard tests done together. So, TSH, FT3, FT4 and RT3, then calculate the RT3 Ratio to determine if you are converting, or not.
'15 - Hashi, low C3, H63 hetero
'14 - MTHFR 1298 hetero
'12 - IC Hyrdo dist
'10 - Thanks to ignoramus PA, my Urinary Tract was PO'd, & my IC came back to visit. Hasn't left since.
'10 - 1st UTI in life lead to kidney infection. Denied meds, specimen sent to lab. Almost died 4dys later!
'06&14-cervical polyp removal
'00-dx Interstitial Cystitis. Hydrodist=remission 10yrs
Blood urine since 90's.Why?

There's Always Hope
Regular Member


Date Joined Sep 2015
Total Posts : 29
   Posted 11/15/2017 9:43 PM (GMT -7)   
Edema is also a symptom of thyroid disease, specifically hypothyroidism. If your antibodies combined with your thyroid hormone results+TSH tells you that you have Hashimoto's, then you can have hypothyroid symptoms with that Hashimoto's. If you have Graves, you can have hyperthroid symptoms. Can you explain what you mean by fluid in your head? Do you mean on your face, or has fluid been detected inside your head? Do you have any swelling on the front and lower part your neck, puffiness, or a fat neck?
'15 - Hashi, low C3, H63 hetero
'14 - MTHFR 1298 hetero
'12 - IC Hyrdo dist
'10 - Thanks to ignoramus PA, my Urinary Tract was PO'd, & my IC came back to visit. Hasn't left since.
'10 - 1st UTI in life lead to kidney infection. Denied meds, specimen sent to lab. Almost died 4dys later!
'06&14-cervical polyp removal
'00-dx Interstitial Cystitis. Hydrodist=remission 10yrs
Blood urine since 90's.Why?
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