I really don't know where I'm going with this, so please bear with me folks. I finished my RT and chemo (cisplatin) for tonsil cancer in July of last year (I couldn't have surgery as it was too far advanced). Since then, whilst I have undoubtedly made progress, in recent months I seem to have been feeling worse. My saliva is still fairly well non-existant and my taste buds are still not functioning properly. As I live by myself (no need for violins folks...I love it!) this means that there is no one to push me into eating as much as I should. I resort to Complan a lot and the most I will eat is a ready meal, normally a curry or chinese...something to try and kick start my taste buds.

As I said, over recent months, I have had less energy, need more sleep and generally have been unable to do things like gardening and the more strenuous housework. I went to my GP who ordered up a blood test which came back clear for all things apart from showing a borderline underactive thyroid. He wanted me to wait another three months for a further blood test but I insisted that I simply could not wait that length of time. He has put me 50 micrograms (daily) of Levothyroxine and I shall have another b/t in one month.

I have just looked up the symptoms of this on the interweb thingy and I most certainly fit the bill. I usually avoid looking up things as I don't want to subliminally adopt any of the symptoms but I feel so bad, I really need some answers.

I noticed that there was some mention of this topic about 20 months ago on this site, but there has been nothing since then. Does anybody in the cyber-cancer world have any experience/thoughts/input on this.

What really does annoy me (if it is true) is that I read on various sites that radiotherapy on the neck area, invariably/can leads to problems and possible failure of the thyroid gland. Has anyone of you been warned of these dangers/concerns? I most certainly wasn't!

When we are given a medicine, it comes with a piece of paper that lists the possible side effects. Why on earth are we not warned of possible side effects of the treatments that we go through? I am not looking to apportion blame, but it disturbs me when I find out that I am not being properly informed.

This post really is born out of the frustration of being a youthful 50 year old who now finds it hard to do a one mile round trip to fetch the paper. I know that I am in a better position than a lot of people but that really doesn't help me when I should be recovering from cancer and moving on...not back.

Thanks for your time gang.

Ray

yea, I gotta say for my dad it VERY BRIEFLY mentioned along at the same time about saliva, taste buds, fatigue, sore throat, yadda yadda yadda.....nothing was ever mentioned about what do about these problems or "WHAT DOES IT REALLY MEAN TO THE PATIENT!!" We had to ask for a sort of "break down" and even when I asked about cream and mouthwashes they really gave no good info - it was the great folk at this site that told me about Biotene and aquaphor and so forth. We asked about waht would be a sign if needed to go to hosp and was having complications and the only answer we got was a fever. She made the sore throat sound like it would be nothing...just a little sore....

I am sorry no one either explained or listened to the symptons of perhaps an undereactive thyroid because they should be able to control it with an easy fix and to think you have been feeling UCKY for no reason is a bummer but not a surprise.........hope they get your throid back to normal AND SOON....

BTW....I have had my own share of thyroid problems since I was 13...goiters that almost blocked my airway, surgery.....I used to ache all over....it can really mess with you.

PROPS to you for stomping your feet and NOT WAITING

Ray

I was diagnosed two years ago today and I am still suffering fron the after effects of treatment.Your experience sounds familiar.

I was diagnosed with Hashimoto's disease which is thyroid related(sounds worse than it is).This may or not be related to my treatment.Anyway you may want to search through some of my posts(or my wife Lorraine' posts).There is some info on thyroid issues there.

All the best

Robert

Hi! Ray,
I have had NO Saliva and only minimal Taste since my treatment started 31st July 07. When the treatment did start they informed me that things would return to normal after a few months( Bullsh*&), I have got used to the fact that I have lost these function and they now say that it could be 2 years time (bugger). My Thyroids are also borderline but what the effect on me is that I am feeling the temperature extremes and I am bloody freezing and it is only 14c. I used to wear shorts and T shirts all year round where now I am wearing thermals, shirt, polafleece jacket and a windbreaker along with gloves and a beanie.
Anyway thats my side of the thyroid trip take care and keep on line.
Trev

Hey Big Ray,

I'm 4 1/2 years past my RT only for tonsil cancer, and also don't remember being warned about thyroid damage, which came as no real surprise to my docs, and is now under control with Levothyroxine.

Inactive thyroid is really a bitch. In my case, I would get cold chills and flu-like symptoms on cold evenings, which would then go away. I called it the 5:00 Flu.

Try keeping up your outdoor activities as best as possible, and eating as much as possible of whatever you can swallow. It sucks but we have to make the most of it. I mean, if I had been warned of the thyroid problems (or if I paid attention when I was warned) I still would have consented to the RT, its not like I wanted to die from the cancer or that there were any better alternatives.

Per Shakespeare, what is past and what is past help is past grief.