Radio Iodine Dosage / Saliva Glands Side Effects

Hiya...just read your post and wanted to share my experience. Now just over 5 years since the full thyroidectomy for a diagnosis much like yours with tall cel variant etc.  I had the rai 131 higher dosage (not sure of numbers) delayed for about 6 months due to the covid pandemic and suffered with stomach ache for a couple of days, then slight discomfort in the neck area and a few weeks of very dry mouth (possibly due to salivary glands being affected,) for which I used mouthsprays etc.

I use my voice a lot as I do supply teaching!  I have noticed a slight change in my voice, a little more gravelly but nothing major.  It is however, weaker in my opinion, in as much as if I do have to project my voice or suddenly shout it does seem to affect it very quickly...the truth being that I now do suffer from a croaky voice if I work 2 days in succession but it's a small price to pay to have more reassurance that they have got the cancer.

In my opinion also, since having the Rai, I have aged a lot quicker.  It's only my opinion but, prior to the diagnosis I was actually a picture of health.  I now have numerous conditions and my skin has definitely taken a battering ie...lots of sudden marks..moles, warts, skin tags, red spots, dry patches, wrinkles..  It isn't clear though is it... a cancer, the operation, the rai and then not having your own thyroid and having to take a higher dosage of levothyroxine due to the tall cell type in order to suppress any return of the cancer + age  menopause, long covid.....I think it's best to follow the lead of the top people in their field, especially the oncologists but you know your body and I am not always taken seriously when I continually say that my symptoms of other ailments have all basically started/ been diagnosed following the cancer treatment and I 100% don't feel like the person I was, prior to all of this.  

This all said,  what choice do we have really.  It's obvious there are going to be side effects from treatments but I think a positive is that other health issues now maybe found due to the monitoring that you will undergo.

Good luck and try to stay positive.  I mean this because no matter what anybody says, your life has now changed and you know this but others don't always understand it. It will always be on your mind now so just try to work around it.  My main issue is my fatigue and trying to stay healthy when you feel much more lethargic than before.. I think this is very common.

Hope this helps and doesn't sound too negative.

Best wishes

Diane

Hi 

I had a TT  and neck dissection in early 2022 at the age of  60 and had 50% tall cells.  

I am treated at Addenbrooke’s in Cambridge. 

The surgeon wrote that : 

‘Her right hemithyroid did have papillary thyroid cancer pT1a. The right level VI node had 1 positive lymph node for metastasis and the right level IV node had 3 out of 4 positive for papillary thyroid cancer.’ 

I then had 3.7  rai in May 22 (delayed as I caught Covid)  The scan later that year showed more cancer but the second surgeon said he wasn’t sure he would be able to find the small bits so I opted for more rai in January 2023 and I think it was a bigger dose - 5.something but I was not asked to choose.    
I am now on annual checks

I have no ongoing effects at all but this was the advice I received from my oncologist at Addenbrooke’s:

Thanks very much Diane. Very much appreciate your response. Has your cancer gone now? I definitely do anticipate certain side effects but would hope they are temporary or at least manageable. I'm pretty fit and have never had any symptoms (just found a lump after deliberate weight loss). Just weighing up the least risky! I'm pretty positive, just a bit confused with all the pros/cons. Glad you are doing reasonably well though. Thanks again.  

Thanks so much for replying. Ah you sound very similar. I'm 51 with 30% tumour was tall cells. 7 lymph nodes removed, 2 infected. If it wasn't for the tall cells, they would not even be discussing 3.7. I can basically choose - 1.1 or 3.7. But they have very much talked up the risks of 3.7,  more so than your place which says temporary. Did you basically get told you needed 3.7? Glad to hear you had no side effects though. Very encouraging. I'm talking to my ENT nurse on Monday anyway. 

Hiya

Well yes, so far so good but they keep saying there are some suspicious looking lymph nodes...just have to keep doing the regular checks, scans, bloods etc  

Good luck with everything. At least it's deemed to have very good prognosis over all.