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Hi! I'm new here, looking for word-of-mouth information and wanting advice.

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Posted 5/14/2007 2:00 PM (GMT 0)
I was researching and happened upon this site.  I was very impressed with both the topics and advice being given, and that it sounds like most people know what the doctors don't or just won't tell you. 

I was diagnosed with Hashimoto's at age 19 (am now 35).  Seems sometime between September 2006 and March 2007, my TSH elevated to 9.0 and I developed hypertention, which I have never had.  For the first time in my life, my doctor ordered thyroid antibodies, which came back high (value of 347).  This lead to a thyroid ultrasound which came back abnormal, and in turn lead to a thyroid uptake and scan which came back 0% uptake and "normal" scan (thankfully).  I haven't been back to the doctor yet for the official reading but 'm guessing this means my thyroid is just dead now and nothing else wrong withit.  I also had a referral to Endocrinology that lead to more labwork; thyroid antibodies of 304, and came back with an ENA-RNP of 2.61 (abnormal = >1.00).  I understand the RNP is a marker for MCTD but I am not exactly sure if this value is a "low-high", or what a high figure would be?  I can't find anything other than a titer reading on the Internet and wanted to know if anyone else had information on this 2.61 value (i.e., how exactly was this measured, etc.).  Once again, I haven't been back to the doctor for the official reading, but wanted any information from you that you could provide. 

I've been chalking up all my years of symptoms to my thyroid and maybe the Synthroid not working properly (even though my TSHs have been normal), but now I wonder if I haven't had the MCTD starting up and it was the cause for my extreme fatigue, headaches, acne, hearing loss, joint nodules/stiffness, malaise, etc. 

Thanks for listening!  Hope to get to know you all...

~Peanut

Posted 5/14/2007 4:08 PM (GMT 0)
Hi Peanut,

I can't help you with the lab results. However, 20 years ago I had thyroid cancer that took forever (and several doctors) to diagnose. I knew there was something wrong and kept going from doctor to doctor until I find someone who diagnosed me. What I was hearing over and over from docctors was, of course you're tired, you have a job and three children. I was tired because my thyroid had stopped functioning. (forgive the rant)

My symptoms were extreme fatigue, memory problems, malaise, weight gain, constipation. I would get lost on my way to work, fall asleep at stop signs, make stupid mistakes at work, etc.

With lupus and RA, I have similar extreme fatigue, joint pain and stiffness, headaches, muscle aches, gastric problems, and low grade fevers.

You mention joint nodules/stiffness. I didn't have those when my thyroid stopped working and I can't imagine how those could be connected to one's thyroid, but I'm not an expert. It sounds very much like you might have both. Have you seen a rheumatologist?

There is a huge range for "normal" TSH results and I do better when I'm on the high end. After 20 years I'm pretty attuned to my thyroid levels and you probably will be too. Ask your doctor what the normal ranges are and what your reading is. Once you get your thyroid adjusted (and it my be now) and still have the extreme fatigue, I'd be sure to see a rheumatologist, especially since you have joint pain and stiffness.

Mind you, I'm not a medical professional and this is just my opinion, but I do hope you get some answers. It's a tough road to get the proper diagnoses and that takes doctors who care enough to listen and try to help. In my experience the best doctors have been women.

I'd also suggest looking at a thread in this website that should be read by all news members. It's under "Resources" and is about the fifth subject down, written by AlwaysRosie and is entitled "Tips for New Members" You'll find it at the top of the main Lupus Page. Let us know if you need help finding it.

Good Luck and I'm glad you came here for help.

Pat
Posted 5/14/2007 7:18 PM (GMT 0)
Hi Peanut and welcome. I'm sorry to hear about all you have been through with your health. Pat had some great things to tell you and I don't have much to add. I agree that it is very possible that you have both thyroid problems and MCTD. There are a lot of people here with thyroid problems and connective tissue disease. Like Pat said, a rheumatologist would be the kind of doctor who would help you verify if you have any connective tissue disease. This is a great forum for both information and support. There are several members here with MCTD who will hopefully see your post and help you understand your lab values better than I can. Take care and I'm glad you joined us.
Posted 5/15/2007 6:43 PM (GMT 0)

Patty,

I just got back on my thyroid medicine (had to stop it for 6 weeks prior to my nuclear thryoid scan), so treating the fatigue in that aspect remains to be seen.  I also switched from Synthroid, which I have always been on, to Armour, in hopes that the T3 and inactive T1 and T2 may work better.  My problem now, is during this workup of thyroid, they discovered the abnormal RNP, which is a specific indicator to MCTD.  So, now, I am wondering if the majority of the fatigue was the MCTD in progress and not the thryoid.  My thyroid level didn't go bonkers until sometime between September 2006 and March 2007, but the fatigue has gotten horrible over the last 7 years (right after I had my last child).  Can I ask you what thyroid medicine you are on, and the treatment you had for your thryoid cancer (surgical removal, I suppose)?  I am in the process of checking with my health insurance to go to Barnes-Jewish Hospital in St. Louis, to speak with better endocrinologists and a rheumatologist.  Like I said before, I haven't officially got the word on my labs from my primary doctor--I'm just lucky enough to be a transcriptionist and have access to my records!  Shhh--don't tell anyone!! tongue

Hippimom,

Thanks for the welcome!  Since you have UCTD, can you answer a question for me?  Or two?  Last week, I had a strange red, raised disc-shaped area arise on the top fatpad of my pinky.  It was not warm and did not itch, and lasted for 2 days--then it was gone.  Also, for the past 3 days, the inner aspects of both my top eyelids have been swollen.  Do you think this could be related to the rest of the wacked-out things going on in this body of mine?  Also, last fall (about the time my TSH went wild), I developed two different fever blisters at different times, which I have never had in my life.  Is this considered a mouth ulcer since basically they were on my outer lips? 

I am very glad I joined.  I'd much rather talk with real people who understand each other than most of the doctors who roll their eyes at you!

Posted 5/15/2007 7:20 PM (GMT 0)
Peanut, the kind of thyroid cancer I had is very treatable and was removed surgically. Ever since them I have been taking synthroid. Obviously, since it has been 20 years, I've had a full recovery, and since I have no thyroid, don't have any more thyroid problems.

I read your answer to Hippi and wanted to mention that I have lots of problems with my eyes, including the swelling of the inner lids that you describe. I take steroid drops when my eyes act up. I get frequent eye infections and for that I use antibiotic drops. I use lubricating eye drops on a daily basis. I have sjogren's which causes the eyes and mouth to be very dry, posterior blepharitis, and superior limbic kerato conjunctivitis. With your symptoms, I'd be tempted to make an appointment with an opthalmologist. Sjogren's is an autoimmune disease, and many of us who have lupus or rheumatoid arthritis are eventually diagnosed with sjogren's.

Take good care of your eyes! I'm happy that you are benefiting from the forum. It's a great place and has helped me so much.

Pat
Posted 5/15/2007 10:01 PM (GMT 0)
Hi Peanut:

I just wanted to say welcome to the forum. I'll not be much help on the thyroid issues. My doctor's sometimes float around that I may have UCTD/MCTD, but the still stick with the SLE DX. I've been sick since I was 23 yrs old and am currently 42. The others have offered you lots of great advice and I really can't add much.

It's tough being sick all the time. Please hang in there and don't give up on your quest to get answers. Looking forward to getting to know you better. Please keep us updated.

Take care,
Barbara
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