Persistent Generalized Lymphadenopathy.
2 years ago I noticed puffy swelling over my left collarbone. Woke up with it one day. Not painful for the first 1-2months I started to develop some discomfort in the soft tissue triangle that would radiate to upper chest on left side. Pain would come and go. But right before all this started I was diagnosed with hyperthyroidism do to thyroiditis. Put me on meds to get levels under control. My weight always fluctuates. But around this time I felt heavier than normal any off symptoms I had doctors would just blame thyroid. Tachycardia was the dead giveaway something was wrong. Thyroid diagnosis resulted in a US of thyroid. They found 2 larger nodes along the side of thyroid along with the largest solitary node in supraclavicular area (where I saw visual swelling over collarbone)
Long story short... fast forward 2 years later. Tachycardia still ongoing problem. (Take propranolol as needed) But no longer have thyroid complications. I was on meds only 6 months before I took myself off. With occasionally blood panels to make sure I’m in normal range. And since I have been normal. When I would ask why nodes were STILL enlarged once again they would just say ohh it probably reacting to thyroid.
I noticed hard knot like bumps on right inside as well told GP so they ordered another US. They saw enlarged nodes but said had normal morphology. So now know of additional 2 more large nodes in the submandibular area.
And noticed the original larger one on left Supra area had gone down a tiny tiny bit it originally measured 16x7x4mm here was the last result with the other 2 found in submandibular area
_
US notes: In the lateral aspect of the neck the
largest lymph node measures 1.3 x 0.5 x 0.5 cm. This may represent the
previously visualized noted. The second largest node measures 9 x 5 x
5 mm. In the submandibular region there are 2 lymph nodes one of which
measures approximately 1.1 x 0.5 x 0.8 cm. The other measures 1.0 x
0.5 x 0.9 cm.
This last test was done March 21, 2019.
Do I continue to worry about the nodes? The one node I worry most about is the one that shows swelling. The solitaire lymph node above left collarbone. The puffy fullness is still there. When I stand with good posture at attention u can see the left side of neck that sternocleidomastoid muscle is more prominent with over collarbone fullness compared to right side. Discomfort comes and goes occasionally but does not hurt when palpating swollen area.
I had chest X-rays to rule out a nothing lung related.
I feel that some days the swelling is worse but then goes down a tiny bit although still visually swollen. My neck spine is sore most days and always cracks sometimes radiated sharp pains.
A CT was done as well to make sure no obstruction happened. Wouldn’t that rule out any slipped cervical discs too? Docs never mentioned that. I am tired all the time. I feel just blahhh. But that could be anything.
I’m just wanting answers. I’ve lost weight as well which thought would help the fat pad above collarbone area but it didn’t. I take lots of herbals. I was 154 when this all started and now down to 134. I am pretty petite as it is and my collarbone divets have always been a fav about my neck area. But now one is always full. I just really feel something is causing it and I want answers. Anyone with the same problem?
I do have abdominal pains on left side time to time and left lower back. They took a US of abdominal around the time of last neck US but came back fine along with blood work. I feel my pain is more female related or possibly Gi Tract. But does radiate to back? So idk🤦🏻♀️
I’m just tired of going to the doctors so I gave up. If coming in with more issues...I feel like they don’t take me serious. Or always blame an old diagnosis on it. As soon as they said the large nodes look ok inside they no longer care to figure out why the swelling?? And yes I know sometimes nodes won’t go back to normal after an illness but everything I read on Supraclavicular nodes good or bad is worrisome??
I’ve always hated going to docs and always push it off and that’s what I did before I had the thyroid problems (they said well if u came in sooner it wouldn’t have gotten so bad)
I am a mother of a 6 year old and just want to be healthy and not left in the dark.
Cancer has a large death count in my family. I am 31 years old and want to feel my best as most do.
What would u do??