Newly diagnosed with MCTD and just had thyroid removed with no thyroid anitbodies

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Mel
New Member


Date Joined May 2015
Total Posts : 2
   Posted 5/25/2015 3:03 PM (GMT -6)   
So this is my story. I am a 36 year old female and mother of two. As a child I had severe seasonal allergies and had to get injections of allergy medicine every other day. I was also susceptible to strep throat, sinusitis and bronchitis as a child and still as an adult. I was diagnosed at the age of 22 with endometriosis after the birth of my daughter. about a year ago I started noticing a variety of symptoms that I really just did not put no worry to until it really got bad around this past Thanksgiving. I was getting cold fingers and toes with the rest of my body being warm, but no change in color. I started noticing the swelling in my fingers on and off, a strange rash on and off on the bottom of my legs. Then the joint pain hit me in the hip and fingers. The hip pain became so unbearable that I could not bend to tie my shoes or put socks on, my husband had to do it for me. I was getting a fever on and off and then noticed I was getting a goiter. about a week before Thanksgiving I started feeling worst. The swelling on my hands forced me to remove my wedding ring set. I could barely bend my fingers, the pain in my hips, knees and ankles made it hard to get around. I started to swell all over my body and almost every muscle in my body hurt. My husband begged me for days to go to the doctor, but I was being stubborn and said I would be fine. I finally could not take it no more and went to the ER on Thanksgiving weekend. I thought I was going into kidney failure because I was not urinating much and the little I did urinate was dark. It looked like I was peeing soda. The ER doctor went over my symptoms and asked about diseases in our family. I advised that my mother has Discoid Lupus and Sjogrens Syndrome. To my surprise the doctor looked at me and said he thought I may have SLE. I was in complete shock! Yes, my mother had autoimmune disease but she was in her late 40's when she was diagnosed and did not have the same symptoms. They did a sedimentation rate which they said was borderline and I had a postive ANA with dual patterns. Homogeneous 1:320 and Speckled at 1:160. I made an appointment right away with my internal medicine doctor that I had not seen since 2009. Right away he said the same thing as ER doctor that he thought I had SLE. He noticed the goiter I mentioned earlier and ordered blood test to check my T4 and TSH levels. Both were in the normal ranges and he referred me to an ENT. During this time we made an appointment for me to see a Rheumatologist, but I have not seen him yet since my appointment is not until August. I live in South Florida and we do not have enough of them down here for our population, which has a lot of retiree's. The ENT order an ultrasound of my thyroid, did a FNA and ordered blood work to check for thyroid antibodies. FNA came back benign and ultrasound showed a mulit-nodule goiter, and thyroid antibodies all came back negative. At first the ENT said he wanted to try to shrink the nodules. We did that for about three weeks and decided that it was not going to be the right treatment since it was now becoming hard to swallow and I was choking at night when I slept and it would wake me up. At the same time my internal medicine doctor decided to run an SLE diagnosed panel since it wouldn't be until August, until I got to the Rheumatologist. The only antibody that came back high was anti-RNP. My internal medicine doctor said that it was actually MCTD. He put me on Methotrexate and Meloxicam. Last Monday, I had surgery to have my right thyroid and isthmus removed. My ENT surgeon was surprised what he found when he cut me open. He told my husband that he had to remove all my right thyroid, isthmus and 75% of my left thyroid lobe because of disease. He did not specify at the time to my husband what he meant by saying "disease". He had me admitted into the ICU as a precaution. The next day he came to my room and said that the ultrasound did not give an accurate picture of what was going on in there. He said even though I did not have Hashimoto's, that I had real bad inflammation and it destroyed my thyroid. He told me he felt it was the MCTD that destroyed my thyroid. I am so scared right now as to what else this may attack next. I go back to my ENT to have my stitches removed tomorrow. I also have an appointment with my internal medicine doctor to discuss this tomorrow with him. I am hoping this may be able to get me moved ahead with a sooner appointment with the Rheumtologist. Has anyone else ever heard of some one having no thyroid antibodies, but having another autoimmune disease and it attacking and destroying their thyroid?

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/25/2015 9:29 PM (GMT -6)   
I've never heard of it, but SLE can mess with anything in our body.

I hope you can see the rheumatologist quickly.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Becky20
Regular Member


Date Joined May 2014
Total Posts : 68
   Posted 5/26/2015 9:22 PM (GMT -6)   
I've heard of a connection between celiac disease and thyroid issues. Something about the gluten protein is very similar to a thyroid protein and the same antibodies involved with celiac disease can target the thyroid? I could be wrong on the exact details but there does exist a connection between the two. Celiac disease can also cause a high ana, just an fyi.
Diagnosed with SLE lupus October 2014.

Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1344
   Posted 5/27/2015 1:46 PM (GMT -6)   
MCTD was originally defined as symptoms of lupus, polymyositis, and scleroderma in 1972. The anti rnp antibody must be present to diagnose mctd. In recent years, mctd can include dermatomyositis, RA and even other autoimmune symptoms. Every case is different in presentation, response to treatment, and severity. Few have symptoms of all the possible diseases.

I presented with lupus and then pm but nothing else. Lupus can attack any part of our body so it is possible that it is what attacked your thyroid or it might be an entirely separate problem not related to mctd. The good news is that most cases are controllable and many are very mild. Mine was not but I have made a remarkable recovery and lead a normal, active life.

No point in worrying because no one, not even any doctor, can tell you how things are or are not going to progress.

Bill
MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

Mel
New Member


Date Joined May 2015
Total Posts : 2
   Posted 5/27/2015 2:23 PM (GMT -6)   
Thank you all for the input! I went to the ENT and primary doctor yesterday. They both agreed that my MCTD is what caused this. The Rheumatologist has me on the "If we get a cancallation, you will be the first we call list". Until then I will continue to see my primary for treatment until then.

Heather1229
New Member


Date Joined Feb 2016
Total Posts : 12
   Posted 2/18/2016 5:14 PM (GMT -6)   
I am a new member as well diagnosed this past Tuesday with MCTD. I have swelling in my feet and legs as to what took me took me to the dr. In the first place. My RNP came back higher so that's what made the diag. Of MCTD. I'm scared but also am
Keeping positive. I have a cough so that is of concern of mine. Dr just wants to monitor me never put on meds and to come back every 3 months. Going to get second opinion making an appointment at the Mayo clinic. I want to be well informed. Mel I'm 38 with kids and live on fl as well

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 2/18/2016 5:20 PM (GMT -6)   
Heather,

The original poster, Mel, has not been back since 5/27/2015. I suggest you create a new thread with your info & questions so currently active members can see your post & reply to you.

Best wishes,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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