# RAI therapy link to Salivary complications incl cancer



## Be Informed

I am not a doctor, but a 7 year survivor of Thyroid Cancer who received RAI ablation therapy after a total thyroidectomy for papillary thyroid cancer. I have suffered from many mysterious illnesses since my surgery and subsequent treatment. My most frustrating revelation occurred when I recently had a lump removed from below my ear that turned out to be cancer of my parotid gland. I had suffered from loss of taste, intermittent halitosis, dental caries, drymouth from either very thick ropey saliva or no saliva, constant thirst and thus constant urination, candida infections, choking up gobs from my throat, pain in and around my ears, hearing alterations, ... for seven years and had been to an orthodontist, 3 ENT's, 2 dentists, and had my tonsils removed to help clear up the "problems." During this time period, not one professional including the 3 Endocrinologists I visited ever mentioned that *there is a significant documented relationship between salivary problems (including cancer) and RAI therapy. * Finally, a few weeks ago I saw a new Endocrinologist who showed me numerous medical studies that detail the causative relationship. He could not believe that no one had ever told me that *I should be on the lookout for salivary complications after RAI therapy as the RAI is known to accummulate in the salivary glands and cause temporary or permanent damage and possible cancer. *

I am still floored that no one ever pointed out the well-researched link between the two. I had no idea that this was a possibility and I nearly did not have the lump removed because the biopsy had come out benign. I only had the surgery because a friend had begged me to have it because her father had died from salivary gland cancer which was misdiagnosed and removed too late in the game. My salivary (parotid) cancer was a _mucoepidermoid carcinoma_. The surgery was very dangerous and extremely painful. My surgeon had written 2 books , one on Thyroid Cancer and one on Salivary Gland cancer and did not even point out the possible link to me. I do not understand how doctors can not be aware of this sort of research and why they do not bring this knowledge to their patients to save them suffering and going on wild goose chases wasting years of time, health, strength, sleep and money when they could have pursued a certain course of investigation and action from the outset. I informed my surgeon of my new Endocrinologist's revelations and now my surgeon is going to use my case in a presentation he is doing in September at a conference. I really hope that the ENT surgeons in attendance get the word out to their patients and spread the research to related professionals so they can help patients with similar complaints. Please, be aware of any lumps below your ear or in the submandibular area and any strange salivary symptoms. Talk to your endocrinologist and ask them to look up the research in this area. It is essential that they are up to date on these findings to make sure that their patients are given ideal circumstances to rid their bodies of excess RAI once it has done its job on the thyroid.

I was told by my new Endocrinologist that _*all persons receiving RAI therapy should be instructed in the proper techniques to help the parotid glands flush out accumulated RAI after treatment and keep the saliva flowing in the ducts that could be damaged from the RAI*_. I was also told that _*examination of the chest and other areas prone to accumulate RAI and possible mucoepidermoid tumors and pleomorphic adenomas should be an annual event and symptoms should be taken seriously*_. Look up the research online. Do not suffer in ignorance as I did and undergo unecessary surgeries such as my tonsillectomy to clear up phantom symptoms.

*Please, do not rule out RAI as a treatment.* It has a strong purpose and probably has kept me alive for the past seven years. But, do be aware of the documented links between thyroid cancer, RAI and other complications. Preserve your good health and sanity by recognizing and getting timely treatment for complications.


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## Andros

Be Informed said:


> I am not a doctor, but a 7 year survivor of Thyroid Cancer who received RAI ablation therapy after a total thyroidectomy for papillary thyroid cancer. I have suffered from many mysterious illnesses since my surgery and subsequent treatment. My most frustrating revelation occurred when I recently had a lump removed from below my ear that turned out to be cancer of my parotid gland. I had suffered from loss of taste, intermittent halitosis, dental caries, drymouth from either very thick ropey saliva or no saliva, constant thirst and thus constant urination, candida infections, choking up gobs from my throat, pain in and around my ears, hearing alterations, ... for seven years and had been to an orthodontist, 3 ENT's, 2 dentists, and had my tonsils removed to help clear up the "problems." During this time period, not one professional including the 3 Endocrinologists I visited ever mentioned that *there is a significant documented relationship between salivary problems (including cancer) and RAI therapy. * Finally, a few weeks ago I saw a new Endocrinologist who showed me numerous medical studies that detail the causative relationship. He could not believe that no one had ever told me that *I should be on the lookout for salivary complications after RAI therapy as the RAI is known to accummulate in the salivary glands and cause temporary or permanent damage and possible cancer. *
> 
> I am still floored that no one ever pointed out the well-researched link between the two. I had no idea that this was a possibility and I nearly did not have the lump removed because the biopsy had come out benign. I only had the surgery because a friend had begged me to have it because her father had died from salivary gland cancer which was misdiagnosed and removed too late in the game. My salivary (parotid) cancer was a _mucoepidermoid carcinoma_. The surgery was very dangerous and extremely painful. My surgeon had written 2 books , one on Thyroid Cancer and one on Salivary Gland cancer and did not even point out the possible link to me. I do not understand how doctors can not be aware of this sort of research and why they do not bring this knowledge to their patients to save them suffering and going on wild goose chases wasting years of time, health, strength, sleep and money when they could have pursued a certain course of investigation and action from the outset. I informed my surgeon of my new Endocrinologist's revelations and now my surgeon is going to use my case in a presentation he is doing in September at a conference. I really hope that the ENT surgeons in attendance get the word out to their patients and spread the research to related professionals so they can help patients with similar complaints. Please, be aware of any lumps below your ear or in the submandibular area and any strange salivary symptoms. Talk to your endocrinologist and ask them to look up the research in this area. It is essential that they are up to date on these findings to make sure that their patients are given ideal circumstances to rid their bodies of excess RAI once it has done its job on the thyroid.
> 
> I was told by my new Endocrinologist that _*all persons receiving RAI therapy should be instructed in the proper techniques to help the parotid glands flush out accumulated RAI after treatment and keep the saliva flowing in the ducts that could be damaged from the RAI*_. I was also told that _*examination of the chest and other areas prone to accumulate RAI and possible mucoepidermoid tumors and pleomorphic adenomas should be an annual event and symptoms should be taken seriously*_. Look up the research online. Do not suffer in ignorance as I did and undergo unecessary surgeries such as my tonsillectomy to clear up phantom symptoms.
> 
> *Please, do not rule out RAI as a treatment.* It has a strong purpose and probably has kept me alive for the past seven years. But, do be aware of the documented links between thyroid cancer, RAI and other complications. Preserve your good health and sanity by recognizing and getting timely treatment for complications.


Thank you for this very enlightning post and welcome aboard!! I am so sorry you had all these unforseen problems. Thank God you are coming through it.

How do you feel now? Are you on a healing pathway?


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## Be Informed

I hope I am on a healing pathway but my hormones are totally out of whack. I have many health issues and do not want to attribute them all to the RAI. I had a total hysterectomy 6 1/2 years ago which put me into menopause which further complicates my hormonal imbalances. 
I have serious adrenal problems that have surfaced after my thyroid cancer occurence 7 years ago. It seems that my thy labs have been pretty crazy for the past 7 years and my dosing and type of thy medicines are constantly being changed. I feel like I swing from hypo to hyper from day to day. I am either in a brain fog or am feeling shaky or both. I can't regulate my body temperature at all. This all has led to a total inability to sleep and burnt out adrenals. I have a new holistic doctor in another state who took 41 blood tests and a urine test to confirm the hormonal nightmare I have been living. He is giving me adrenal hormones to help rebalance my system and many nutritional supplements to correct defifiencies that showed up despite the very well-balanced diet I eat. My blood pressure is a disaster and swings from dangerously high to low from day to day. It is more high than low and I get severe headaches,dizziness, visual field defects, bluring and eye pain. I have been tested for MS, lupus, lyme, Srojen's (sp), fibromyalgia,brain tumors....

I am scheduled to see a nephrologist and a hematologist as my recent lab results were quite strange. I have developed severe pain in my hands and feet and severe osteoarthritis in both places which has been confirmed by xrays. My rheumatologist says this is extremely uncommon for someone my age. I also have big time vision problems and have had cataracts removed from both eyes. I am 52 years old, 5 ft. 5 and 135 lbs and have always been very active and intelligent. I feel like I am slipping away mentally and physically. It has been a difficult run for me.

I am hoping that this new healing pathway will have more flowers, fewer thorns, no extreme temperature shifts and less foggy weather. I really have had enough distress. I have 4 older teenagers in HS and college and a supportive husband. They are caring people but they really can't understand what it is like to be in such a confusing state of health and how much help I really need. It is challenging to find the energy and patience to deal with them when I am suffering. I have a hard time hearing them complain about minor inconveniences when I never know how I am going to feel from one hour to the next. I am lucky to be a person of great faith and appreciation for all of the small pleasures of life. Before this thyroid mess started, I was never sick a day in my life. For the first time in seven years, I finally feel that I have a doctor who will help me get to the bottom of this mess so I can uproot the weeds that have been choking the life out of me.


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## Andros

Be Informed said:


> I hope I am on a healing pathway but my hormones are totally out of whack. I have many health issues and do not want to attribute them all to the RAI. I had a total hysterectomy 6 1/2 years ago which put me into menopause which further complicates my hormonal imbalances.
> I have serious adrenal problems that have surfaced after my thyroid cancer occurence 7 years ago. It seems that my thy labs have been pretty crazy for the past 7 years and my dosing and type of thy medicines are constantly being changed. I feel like I swing from hypo to hyper from day to day. I am either in a brain fog or am feeling shaky or both. I can't regulate my body temperature at all. This all has led to a total inability to sleep and burnt out adrenals. I have a new holistic doctor in another state who took 41 blood tests and a urine test to confirm the hormonal nightmare I have been living. He is giving me adrenal hormones to help rebalance my system and many nutritional supplements to correct defifiencies that showed up despite the very well-balanced diet I eat. My blood pressure is a disaster and swings from dangerously high to low from day to day. It is more high than low and I get severe headaches,dizziness, visual field defects, bluring and eye pain. I have been tested for MS, lupus, lyme, Srojen's (sp), fibromyalgia,brain tumors....
> 
> I am scheduled to see a nephrologist and a hematologist as my recent lab results were quite strange. I have developed severe pain in my hands and feet and severe osteoarthritis in both places which has been confirmed by xrays. My rheumatologist says this is extremely uncommon for someone my age. I also have big time vision problems and have had cataracts removed from both eyes. I am 52 years old, 5 ft. 5 and 135 lbs and have always been very active and intelligent. I feel like I am slipping away mentally and physically. It has been a difficult run for me.
> 
> I am hoping that this new healing pathway will have more flowers, fewer thorns, no extreme temperature shifts and less foggy weather. I really have had enough distress. I have 4 older teenagers in HS and college and a supportive husband. They are caring people but they really can't understand what it is like to be in such a confusing state of health and how much help I really need. It is challenging to find the energy and patience to deal with them when I am suffering. I have a hard time hearing them complain about minor inconveniences when I never know how I am going to feel from one hour to the next. I am lucky to be a person of great faith and appreciation for all of the small pleasures of life. Before this thyroid mess started, I was never sick a day in my life. For the first time in seven years, I finally feel that I have a doctor who will help me get to the bottom of this mess so I can uproot the weeds that have been choking the life out of me.


Goodness! I must say that there is nothing wrong w/ your mental acuity. I love the way your write and express yourself knowledgeably.

That said, "What thyroxine replacement are you on and how much per day?" Do you have recent thyroid labs and ranges you could share w/ us?

What tests did you have for Lupus? Have you seen a Board Certified Ophthalmologist for your eye troubles? Do you think you have Thyroid Eye Disease? Have you been checked for glaucoma? Has diabetes been ruled out?

You are young; don't give up!! We are here to help if we can and we most certainly can be supportive.

Glad you have a spiritual life-line; this is a very very good thing!

{{{{Be informed}}}}


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