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Old 06-09-2011, 08:00 AM   #1
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Talking New to boards. Possible Thyroid Lymphoma??

Hi all!
I have been on a rollercoaster ride these last few months with an Endocrinologist at a major Cancer Center, telling me I have Hashimotos thyroiditis. According to him, this is very common, no big deal, blah, blah... Thyroid Antibodies were negative, but he says that doesn't mean anything. My TSH is elevated, but that is the only thing out of whack. Any symptoms I have are more like hyperthyroid, but he claims these symptoms are due to anxiety, not Hashimotos. Over the last month, I have noticed a slight choking sensation at the base of my throat and times when my voice gets gravelly. Again, he says it's anxiety, as the node is not really big enough to cause these symptoms. I also mentioned that I have lymph nodes cropping out in various places at various times, groin, armpit, head, neck... this is the reason why I went to see my PCM in the first place. Endo Doc says I am just fighting off infections and this would be unrelated to the Hashimotos. THEN he goes over the biopsy results with me.
I had two ultrasounds of the Thyroid, both showing a dominant node in the thyroid. It has it's own blood supply on doppler, which is not a good sign. They biopsy it and it comes back as Hashimotos, but the specimen they sent for gene rearrangement staining comes back stating "analysing both the IgH and Ig light chains identifies a clonal B cell population. Clinical correlation is recommended to exclude focal involvement by Lymphoma." CD20+ and HLA-DR strong +, several other positives in this report, too many to list really, but you get the idea.
He says he will take the case to the Tumour Board. He thinks they should do surgery to remove the node, but because I am moving overseas at the end of the month (hubby is military) he is reluctant to start something he can't follow up on. The surgeon is fully booked, so they cannot do it before we move anyway.
Sure enough, the board says watch it and wait. Follow up with the military docs overseas and recheck the ultrasound and re-biospy in 4-6 months. I asked, what if it is Lymphoma, then we just lost 4-6 months. He said "well, it will grow bigger if it is lymphoma, so you'll seek follow up sooner." NICE. I am worried that I am going to get all the way over there, and find out it is Lymphoma and then they are going to send me back to the US for treatment and all sorts of time will be lost. I realize Lymphoma of the thyroid is rare, but I just have a bad feeling about this whole thing. I am feeling pretty much helpless to do anything about this situation.
Thank you all for hearing me out and letting me vent. I needed to get this off my chest.

Last edited by BSG; 06-14-2011 at 02:41 PM.

 
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Old 06-14-2011, 02:47 PM   #2
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Re: New to boards. Possible Thyroid Lymphoma??

Just a follow up with a couple of questions for anyone who might be reading this: 1.) Has anyone else ever had "clonal B cells" come back in their FNA/ thyroid biopsy results? If so, what did your MD say about this?
My second question is in regards to symptoms... has anyone ever felt like their heart was beating in their throat, almost like little palpatations/ vibrations in the thyroid area? Sounds weird, I realize, but I am not sure how else to explain it. Thanks!

 
Old 07-01-2011, 03:35 PM   #3
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Re: New to boards. Possible Thyroid Lymphoma??

I get the vibrations over the veins in my neck on the same side as my nodule. I notice them the most when I feel hyperthyroid symptoms. The only thing I can find relating to this is a "venous hum with thrill." However, I can't find anything relating it to the thyroid.

I also have the choking pain sensation you were talking about. I think they are related to the size and location of my nodule. Do you have any specifics on your nodule (e.g. size, location, echo pattern, etc.)? Or are there any differences in size between the left lobe and right lobe of your thyroid?

As for the lymph node enlargement, if it were lymphoma of the thyroid the lymph nodes closest to the thyroid would be enlarged. So I don't know why there would be wide spread lymph node enlargement unless it represented some type of metastasis.

I know that drenching night sweats are a red flag for lymphoma so if you have these then I would be suspicious. Unfortunately, they can also occur when you are hyperthyroid.

I wonder why then didn't needle biopsy one of the lymph nodes that were enlarged? That could have been easily done and may have gotten you closer to an answer.

I agree that a 4-6 month wait is kind of a long time. I would get in to see one of the military doctors sooner that.

 
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Old 07-05-2011, 12:59 AM   #4
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Talking Re: New to boards. Possible Thyroid Lymphoma??

Thank you for your response Rx37! Seems like a lot of people read these boards, but not too many actually respond.

I am glad to hear that I am not alone with the weird vibrations going on in my throat, lol! I hadn't thought about it being related to hyperthyroid symptoms, though. Although my Endo said that the Hashimoto's would not really cause hyper thyroid symptoms, I've since learned lots of folks with Hashi's do, in fact, experience periods with hyper thyroid symptoms.

I am not sure if the night sweats that I have been having qualify as anything significant. I am post menopausal, so I figured the hot flashes I have at night are of the residual menopause variety. I get pretty sweaty, but not to the point where I get up to change the sheets. I will mention to the doc though. And like you pointed out, it could also be the hyperthyroid causing the hot flashes.

Now that I am overseas, I am just waiting on the referral to get into the Endo doc over here. I am not going to wait the 4 months, as recommended by the tumour board. The choking sensation is now worse, sometimes I even feel like food is getting stuck in my throat. The nodule area even hurts a bit, kind of like a pulling/tearing sensation and sometimes feels like it is bruised. I can now see a small lump that moves up and down when I swallow. I couldn't see it or feel it before, so I think it is safe to say it is growing a bit. Best to see the Doc and let him figure it out, I guess.

What about you, did you get your nodule biopsied? Do you have Hashi's as well?

 
Old 08-13-2011, 11:09 AM   #5
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Re: New to boards. Possible Thyroid Lymphoma??

Quote:
Originally Posted by BSG View Post
Hi all!
I have been on a rollercoaster ride these last few months with an Endocrinologist at a major Cancer Center, telling me I have Hashimotos thyroiditis. According to him, this is very common, no big deal, blah, blah... Thyroid Antibodies were negative, but he says that doesn't mean anything. My TSH is elevated, but that is the only thing out of whack. Any symptoms I have are more like hyperthyroid, but he claims these symptoms are due to anxiety, not Hashimotos. Over the last month, I have noticed a slight choking sensation at the base of my throat and times when my voice gets gravelly. Again, he says it's anxiety, as the node is not really big enough to cause these symptoms. I also mentioned that I have lymph nodes cropping out in various places at various times, groin, armpit, head, neck... this is the reason why I went to see my PCM in the first place. Endo Doc says I am just fighting off infections and this would be unrelated to the Hashimotos. THEN he goes over the biopsy results with me.
I had two ultrasounds of the Thyroid, both showing a dominant node in the thyroid. It has it's own blood supply on doppler, which is not a good sign. They biopsy it and it comes back as Hashimotos, but the specimen they sent for gene rearrangement staining comes back stating "analysing both the IgH and Ig light chains identifies a clonal B cell population. Clinical correlation is recommended to exclude focal involvement by Lymphoma." CD20+ and HLA-DR strong +, several other positives in this report, too many to list really, but you get the idea.
He says he will take the case to the Tumour Board. He thinks they should do surgery to remove the node, but because I am moving overseas at the end of the month (hubby is military) he is reluctant to start something he can't follow up on. The surgeon is fully booked, so they cannot do it before we move anyway.
Sure enough, the board says watch it and wait. Follow up with the military docs overseas and recheck the ultrasound and re-biospy in 4-6 months. I asked, what if it is Lymphoma, then we just lost 4-6 months. He said "well, it will grow bigger if it is lymphoma, so you'll seek follow up sooner." NICE. I am worried that I am going to get all the way over there, and find out it is Lymphoma and then they are going to send me back to the US for treatment and all sorts of time will be lost. I realize Lymphoma of the thyroid is rare, but I just have a bad feeling about this whole thing. I am feeling pretty much helpless to do anything about this situation.
Thank you all for hearing me out and letting me vent. I needed to get this off my chest.
Don't you wait! You follow what your gut tells you! Time lost is time lost...as well as stress. Don't rely on stats. They don't matter in my mind.

Take your results to another Doc ASAP

Just a suggestion..
Let me know how it turns out...I hope all well.

 
Old 06-23-2012, 07:16 AM   #6
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Unhappy Re: New to boards. Possible Thyroid Lymphoma??

I notice that this thread was posted roughly a year ago, but I was wondering what was ever determined with the thyroid... I am questioning too if I might have thyroid lymphoma. Like you I know that it's quite rare and usually occurs in older women, but I can't shake the feeling that there's something going on. I had a thyroid biopsy done a few weeks ago that was inconclusive. Basically there were only lymph cells present from what I understand and the MD did question lymphoma, but did not think that was it d/t lack of symptoms on my part. She recommended a repeat US in a month, further blood testing and a repeat biopsy in 3-6 months. I told her I just want it OUT!! I am scheduled to have surgery July 26th to have a total thyroidectomy. I also have hashimoto's thyroiditis diagnosed in 2004. I like you get heart palpitations that feel like they are in my throat and I have to catch my breath. They have been worsening within the last 4-5 months which is why I went back to the doctor in the first place. No night sweats or anything like that. July 26th can't come fast enough!!! Just want some answers!!! I also asked the surgeon about the biopsy report and he wasn't sure, but did mention lymphoma too. Now I've heard the word twice and anxiety is high.

 
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