Has anyone had thyroid issues after head and neck radiation?

@srm, I’m tagging you to make sure you saw the responses you received regarding your question about thyroid issues post radiation. How are you doing?

@colleenyoung
Thanks- yes I have seen them. There was a conversation within a conversation and some good info. I’m doing okay. I have found a good therapist who is working on draining my lymphedema and believe that I am realizing some success with the acupuncturist who is working on my saliva production. A bit early to tell. I will start going for the acupuncture treatments twice per week starting next week. I’m still dealing with the mucositis but it has improved significantly. I had so many items to review with my doctor earlier this week that I forgot to mention my thyroid issue. I remembered once I got into my car. I see him in another 3 weeks so it will be at the top of my agenda.

Does the lymphedema therapy feel good or is it uncomfortable in the neck region?

@colleenyoung
The therapist does a good job of making sure she’s not causing pain while draining. It always feels good afterwards when the swelling is down. Sounds like I will need to go for regular and frequent visits for a while. And once we have the lymphedema under control may only need to go every 4 to 6 weeks for maintenance. I am seeing a private therapist that specializes in lymphedema therapy. I am scheduled next week at a different location that was booked through the cancer clinic. It will be interesting to see how they manage the therapy. I chose to go private because I didn’t want to wait the 6 weeks for the one connected to my cancer clinic. The difference is that I pay for the private therapy out of pocket whereas insurance pays for the other.

I've had radiation twice on my head and scc in my lymph node. I have hypothyroid from it and now take levethyroxine daily and no problem. The scc cells were treated with interventional ablation, meaning needle direct into node and filled with ethanol that killed all cancer within. Dr. told me this treatment is typically used for thyroid, so it may be helpful to you to know that it was an easy procedure, numbed neck, and no real recovery time, just tender for a week or so. My follow up PET showed it GONE!

Hi @srm. I too experienced what you are going through...It took a good year before everything started settling down. The lymphedema was pretty bad, so I was prescribed therapy for a few months. After that, a simple Shiatsu Neck Massager worked wonders. The lymphedema still occurs, but not as often. As for the Thyroid, mine is sputtering to a halt--or so the doctors say. The radiation is the culprit, so every 3 months I undergo blood tests to test thyroid levels. The doctor keeps increasing the Synthroid dosage until the tests will supposedly come back normal. So far, the tests have been abnormal for the last two years. Please give your body time to heal. You are in my thoughts.

About 5 years after my 2011 proton radiation for parotid cancer I developed goiter on my left lobe. I had surgery, a hemithyroidectomy. Last year I was diagnosed with goiter on my right lobe and hypothyroidism. I take meds for that and will probably eventually have my right lobe removed as well.

Hi @thomason76
Could you please send a link to the Shiatsu Neck Massager that works wonders for you? I may want to purchase one.

Thanks,

Rob

Rob, the one I use is pretty old, but works well. Here is a link: https://www.ebay.com/itm/197445057617?_skw=vintage+shiatsu+neck+massager&itmmeta.
You may want to check out the newer ones...They have extra features like heat!
I hope your lymphedema gets better.

There is pneumatic device for lymphedema called Flexitouch Plea that works wonders. Your care team can prescribe it. Medicare does not cover it, but my secondary insurer covered it 100%.