Has anyone had thyroid issues after head and neck radiation?

Posted by srm @srm, Oct 13, 2021

I started therapy today for my lymphedema which is just another side effect from my treatment. The therapist pointed out that my thyroid gland was larger and harder than normal. Has anyone had thyroid issues after head and neck radiation? It is not painful and because of the lymphedema swelling under my chin, you can’t see it.
I already have an appointment with my family doctor next week so plan to get him to check it. The therapist suggested that this could be contributing to my very painful throat that is causing me most of my issues right now. Almost 4 months post radiation and still on liquids and have to freeze throat with lidocaine before I can drink my protein shakes.

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Hi @srm, I know that @msherfinski has talked about having lymphedema of the neck after H&N cancer treatment. You can read his story here:
- Lymphedema in the neck after laryngectomy https://connect.mayoclinic.org/discussion/lymphedema-in-the-neck/

But you're asking about thyroid issues. Radiation therapy to the head, neck, or upper spine is one of the most common causes of thyroid problems after cancer treatment. You can read more from Cancer.net here:
- Thyroid Problems https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/thyroid-problems

I'm glad to hear that you've already got an appointment to discuss this with your doctor as thyroid issues are treatable. Hopefully treating the thyroid will ease the throat pain. Will you update once you've spoken with your family doctor? Have you reported this to your oncologist or symptom management nurse?

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Yes. My husband has thyroid issues since his radiation treatment for oral cancer in 2001-2002. They discovered his thyroid is overactive with one "hot" node causing it. That one node they suspect was damaged from the radiation. He takes a small amount of medication to treat it. They suggested ablating the whole thyroid and replace completely the hormones it produces which is easier to maintain I guess. He chose to not do that and takes a small amount of medication to treat his overactive thyroid. About two months after his radiation was completed he was sent to the ER with a racing heart and they thought he was having cardiac issues. He was not. His undiagnosed overactive thyroid condition caused by the radiation was causing it.

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@colleenyoung

Hi @srm, I know that @msherfinski has talked about having lymphedema of the neck after H&N cancer treatment. You can read his story here:
- Lymphedema in the neck after laryngectomy https://connect.mayoclinic.org/discussion/lymphedema-in-the-neck/

But you're asking about thyroid issues. Radiation therapy to the head, neck, or upper spine is one of the most common causes of thyroid problems after cancer treatment. You can read more from Cancer.net here:
- Thyroid Problems https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/thyroid-problems

I'm glad to hear that you've already got an appointment to discuss this with your doctor as thyroid issues are treatable. Hopefully treating the thyroid will ease the throat pain. Will you update once you've spoken with your family doctor? Have you reported this to your oncologist or symptom management nurse?

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I am 1 1/2 years from my last treatments and I have the same happening - my Dr wouldn’t do the labs to test my thyroid so for a year I had symptoms and thought I was dying again - finally at another dr recheck I asked if this dr would request the labs and I had really high thyroid numbers diagnosed with hypothyroidism. I in total had 1 Dr refuse sayin this would not happen and another Dr saying it was not his job to request the labs for me - finally 1 Dr that cared enough to say sure we can do that, thank God

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@mindyt, can you tell me what your diagnosis was (Tx/Ny, etc) and what treatment you endured (surgery, chemo, etc)? I have been diagnosed with inoperable squamous cell carcinoma P16. Its been graded T1/N0 and I’m to begin 6 weeks of full on radiation (69 Rad) and 3 rounds of Carboplatin/5-FU.

TIA

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I meant 69 Gy for my radiation. This seems excessive considering no lymph nodes are involved.

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@fwpoole

@mindyt, can you tell me what your diagnosis was (Tx/Ny, etc) and what treatment you endured (surgery, chemo, etc)? I have been diagnosed with inoperable squamous cell carcinoma P16. Its been graded T1/N0 and I’m to begin 6 weeks of full on radiation (69 Rad) and 3 rounds of Carboplatin/5-FU.

TIA

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My diagnosis was T3 - N0 - M0 one dr believed I was more a T4 he found some damage from the cancer dripping to my spine but we all stuck with T3. Mine also squamous cell Laryngeal Cancer inoperable. I had 35 Radiation treatments targeting my tumor and took out 2 lymph nodes, also 3 treatments of Cisplatin all in 7 weeks.
I think I had to wait 6 or 9 weeks for the PET scan to look for the cancer and I am in remission no cancer end of Feb will be 2 years. I also had to have a feeding tube before my Dr would start radiation.

About 4 months ago I was diagnosed with lymphoma and now I use a lymph pump and it’s great not painful and helps - this can happen after treatment if your lymph nodes are messed with in any little way from radiation along with the thyroid problems.

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@fwpoole

I meant 69 Gy for my radiation. This seems excessive considering no lymph nodes are involved.

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They are being aggressive but It’s probably because this cancer can come back and can be so damaging.

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@fwpoole

@mindyt, can you tell me what your diagnosis was (Tx/Ny, etc) and what treatment you endured (surgery, chemo, etc)? I have been diagnosed with inoperable squamous cell carcinoma P16. Its been graded T1/N0 and I’m to begin 6 weeks of full on radiation (69 Rad) and 3 rounds of Carboplatin/5-FU.

TIA

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I wish you the best - you are going to be ok, I would suggest always to get a second opinion especially with radiation because it will cause long term side effects- ask lots of questions about the radiation and choices. I was in a different place than you are so my choices where not so much…. But see what is affective and least damaging.

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@mindyt

My diagnosis was T3 - N0 - M0 one dr believed I was more a T4 he found some damage from the cancer dripping to my spine but we all stuck with T3. Mine also squamous cell Laryngeal Cancer inoperable. I had 35 Radiation treatments targeting my tumor and took out 2 lymph nodes, also 3 treatments of Cisplatin all in 7 weeks.
I think I had to wait 6 or 9 weeks for the PET scan to look for the cancer and I am in remission no cancer end of Feb will be 2 years. I also had to have a feeding tube before my Dr would start radiation.

About 4 months ago I was diagnosed with lymphoma and now I use a lymph pump and it’s great not painful and helps - this can happen after treatment if your lymph nodes are messed with in any little way from radiation along with the thyroid problems.

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Oops not lymphoma I have problems with my lymph nodes draining…

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@fwpoole

I meant 69 Gy for my radiation. This seems excessive considering no lymph nodes are involved.

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I was diagnosed with SCC T3,N0 9 years ago but originating in my ear. One of the more valuable pieces of information I received from my doctors at Mayo MN postop was that not all radiation therapy is created equal. It does depend on the radiation oncologist and their equipment capabilities. A referral oncology center may be the best choice. I ended up receiving 70Gy along with weekly Cetuximab at University of Michigan which is an hour drive from home, vs the 10 hours to Mayo. Mayo radiologist recommended the head and neck radiation oncologist there as world class, as opposed to radiation therapy at a local hospital. I have not had a local recurrence in this time, but have metastatic SCC which has required surgery and my current Cemiplimab Immunotherapy. It pays to look for the best and ask for second opinions. Radiation with targeted therapy was difficult as sore mouth and throat progressed along with changes in taste and nausea from the infusions. With a feeding tube, it may be easier to keep up on nutrition, but I never had one.

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