LadyRogue

I did have symptoms of thyca: hoarse voice, sore throat, enlarged lymph nodes, pain in neck that radiated to the ear. I had all of the pain before my TT, so it wasn't scar tissue. My symptoms now are: low grade fevers, night sweats, generalized itchiness (to the point of drawing blood as I scratch in my sleep), feeling like I have the flu without being sick. Plus, lymph nodes on and under my collarbones, and 2 new ones just popped up near my sternum, below my right collarbone. My doctors don't think it's thyca recurrence. These nodes are rubbery and mobile, nontender. Still, we've done massive bloodwork, head/neck cts and mri. I had a PET that was neg. So, I see the pulmonologist on Monday to discuss the chest CT scan and chest x ray that was done today. And to set up the excisional biopsy of these weird supraclavicular lymph nodes. One of them is between 1.5-2.5cm in size. :( Sorry for any confusion!

Yes, my thyroglobulin is good too. But my endo said that doesn't completely rule it out, though it is unlikely that it is a recurrence. Are you having any other symptoms? See the ENT and tell them you want a biopsy. If you are fine with waiting a year, then do that. For me, I'm having a lot of other symptoms and 2 doctors want an excisional biopsy. I feel I'd rather be safe, than sorry. I'll definitely post updates. And I'll look for yours.

Ok, here's the thing. My Endo told me that with nodes like these, they need to be followed up with either an I-131 scan or a PET scan. Or both. If it shows negative on the 131, but positive on the PET, then it is resistant. If it shows negative on the PET, but positive on the 131, then it's recurrent disease. Either way, you need an excisional biopsy to rule out what it could be and know for sure. I'm currently waiting to see who will be doing an excisional on me...the ENT surgeon, or the pulmonologist surgeon. That's the only sure way to know. Keep us updated on what they say and I'll return the favor! Blessings to you!

I'm with you, Ladies! My weight gain started before we found the thyca, and just hasn't left. I was 175lbs before this started in Oct. 2010, now I'm at 223lbs (was 233lbs last spring). I had TT June 2011, am on Synthroid 112mcg with Cytomel 5mcg at 8am and again at 3pm. I'm tired by the afternoons, even with the Cytomel. I wake up in the middle of the night most nights and can't get back to sleep right away. Yet, if I can manage 8 hours of sleep at night, I'm still exhausted the next morning! I don't eat junk food, candy, etc. I bake most things and make meals from scratch most of the time. Love veggies, etc. I too, wish I could find an Endo who knew what the heck they were doing! Cause I'm so tired of being "sick and tired" all the time. It was like pulling teeth just to get my Endo to give me the Cytomel. :(

I am in the same boat you are. I went all through the meds circus over the past year myself. I had my TT with pap thyca in June 2011, started on 100 mcg of Levothyroxine. Then, upped to 125 mcg, then upped to 137mcg. Still felt really hypo, no weight loss, tired all the time and felt just "ugh"! So, endo had me switch to Synthroid, dropped me to 112mcg and then added 5mcg of Cytomel at 8am and again at 3pm each day. I started to drop weight...then I started getting really tired by 4pm a few months ago, even with the Cytomel, get low grade fevers, night sweats and flu like pain all over. I have some enlarged nodes, but PET came back clean and Thyrogen is <.02. I don't sleep through the night, 3-5 nights a week. And I'm at 223lbs, when I was at 175lbs when all of the thyroid issues started (had hashimoto's too). I'm not sure what to tell you, as I'm in the same boat as you...but I am hyper due to the suppression. I'd love to hear if you get any answers/suggestions.

Please let us know what they say. I have enlarged lymph nodes on my right collar bone and one on my upper right chest just below the collar bone. My PET scan came back clear except for some enlarged nodes...so I'm in the wait and see period, too. I have an MRI tomorrow and will talk with the ENT again next week for the results to see if they are going to biopsy or still "wait and see". I had pap thyca that was 2.5cm when I had my TT in June 2011. They found another nodule in the thyroid bed when I had my I131 in October 2011. But then the RAI must've took care of it cause my PET in Nov. 2011 was clear.

Have you gotten your ultra sound results back? Any news?

Yep! I'm the same way. I was taking an herbal sleep aid to help, but the doc was afraid it was interfering with the Synthroid. However, I do have a lot of pain and enlarged nodes that they are looking into; so, I'm on vicodin and a muscle relaxer for pain. That usually helps me get to sleep. But, I wake up during the night usually at least 3-5 times a week and am up for about 1-2 hours before I can sleep again. I may ask my doctors for something like ambien or see if I can take my herbal stuff again. So, I feel your pain!! Hopefully the doctor will help you out. Let us know what happens, since there are a few of us in the same predicament.

Go to a different doctor...and keep going to different ones until you finally get someone to listen to you. There are a lot of things that can cause these symptoms, so I can't believe you haven't at least had some blood tests, scans....something! I too am having a lot of those symptoms, but the doctors still haven't figured out what is wrong. Having an MRI done tomorrow. PET scan was clear, other than showing enlarged nodes. Just keep trying, Hon. I know it's frustrating...I'm with you on that. Don't give up!

So, I saw the ENT yesterday and he ordered an MRI scan with particular attention to my supraclavicular lymph nodes. He said I have a node about 1.5cm in size and that he wants the MRI to see exactly how big they are. Is this a normal size for a node in this area? He said one of them is actually on the upper portion of my chest (right)...but it feels like it's just at the bottom of my collar bone. I'm just really confused at this point. Still having the low grade (99-100F) fevers in the evenings and night sweats. Though I've started noticing that I'm sweating here and there through the day now, too. The joint pain, particularly in my shoulders, elbows and wrists is getting bad. It used to only start hurting when the fever would start...now it's off and on all day. :( Is there anyone out there who has these types of symptoms? I would really appreciate some comments...feel so danged lost and scared.

That is such wonderful news!! Thank you for responding. Well, I have an appt on Monday to see a local ENT surgeon to set up a biopsy of these nodes. The EBV panel came back negative for current virus. I've had all kinds of bloodwork to check for other possibilities that all came back negative for lupus, RA, etc. I've also had rounds of antibiotics and steroids that did nothing. I'm hoping and praying that we can finally get some answers and that its not lymphoma. Guess its still wait and see still. But at least the doctors are doing something! I just hate this waiting. After 2 years of this off and on, I'm hoping we can rule out cancer and get to the bottom of this. I want my life back, dangit!!