Thryoid question, not what you would expect!

DJG1
DJG1 Member Posts: 121
edited March 2014 in Head and Neck Cancer #1
Does anyone have some experience after treatment with my situtation. I was diagnosed with stage 3 right tonsil, with lymp node involvment SCC. Had tonsils and 4 lymp nodes removed august 26, 2010. 2 of 4 nodes confirmed scc. FInished 33 rad treatments on November 10. Saw ENT 2 weeks after completion, and basically he said I will see you in 2 months and we will scope at that time. Said there was to much swelling to scope at that visit. As well as things seem to go during surgery and treatment, they seem to gradually go down hill and when treatment was complete, I never felt like I regained control again. Basically it kicked my a**. Many here have said this is normal, but 8 weeks after treatment it seems like there should be some improvment. I did not have a feeding tube, as I was able to sallow throughout treatment with minimal pain. The sore throat and ear pain I was experience prior to the diagnose has now returned, and I seem to fight the hoarseness often (new sympton). In addition, I have been on thryoid medication for over 10 years for underactive. Since all this, my GP can not get my medication regulated. HOld tight, as many of you will say normal. The problem is that the problem is the opposite of the normal. The GP is having to reduce my medicine, I have went from 125 to 112 now 88. She did a blood test and said there as some abnormalaity and want me to see a thryoid specialist. She left me this message on the phone with no other details. Of course I am thinging Thryoid Cancer now? Anyone on this board knows how your mind goes crazy. We all do it. She made an appoaintment for Mid Feb with Thyroid Specialist, and I see my ENT next monday for my 2 month post exam. I will discuss with him.
Looking for anyone with similiar experience and shed any light on the situtation. Thanks for all your help. Deb

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    If It Isn't One Thing
    Sorry, Deb - no useful info here. Very sorry you've gotta wait til the middle of next month to see a specialist. Magic Google did tell me that sometimes radiation to the neck can bring on Graves Disease (overactive thyroid and some mild sounding symptoms) - treatment is usually pills, since it can go away. Hopefully it's some weird, wonky thing, and the specialist can set you right quickly (well as quickly as possible, considering you're already waiting over a month).
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    Pam M said:

    If It Isn't One Thing
    Sorry, Deb - no useful info here. Very sorry you've gotta wait til the middle of next month to see a specialist. Magic Google did tell me that sometimes radiation to the neck can bring on Graves Disease (overactive thyroid and some mild sounding symptoms) - treatment is usually pills, since it can go away. Hopefully it's some weird, wonky thing, and the specialist can set you right quickly (well as quickly as possible, considering you're already waiting over a month).

    some observations
    you might not be seeing. First, you don't mention if you had chemo although it would seem likely from your diagnosis. If so, chemo changes all your bloodwork for months after treatment and I can see why your GP is having a diffcult time adjusting. Also how much weight have you lost and might that translate to a lower dose? I am also on thyroid medicine and this occured 9 months after treatment. It would be unusual for your GP to leave a phone message in which she suspected you still had cancer and to schedule the Thyroid doctor so far out? You are being way too optomistic on recovery with the throat pain. 8 weeks is minimal. My voice remained horase for at least six months post treatment and this was one of my pre-cancer symptoms, so again give yourself more time. I know it's scary but you need a different set of eyes on this one and I'm just not seeing it. Call your GP and talk to him/her. Call the thyroid doctor, tell them you are a cancer patient and you need a closer appointment and will sit in the lobby or whatever fits their schedule as they can notify you when they have a cancelation.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Time
    I agree with Ratface as for your time out....especially concerning bloodwork.

    It took me nearly a year before all of my blood work came back into the normal ranges. Have they montiored your TSH during treatemnt? I have all of my CBC bloodwork lab results for each test they did on me while in treatment, somewhere in the range of 12 - 15 individual test dates. I know exactly what levels were low, or high..and the majority were either.

    While more than likely if you did have radiation, your thyroid will take a hit. Not sure how that will be played out with you since you went in apparently with thyroid problems.

    Again the things that Ratface mentioned all play into that equation, weight loss, etc....

    I'm 18+ months out and starting to have signs that my thyroid isn't working...my TSH levels have gone from 1.2 to 5.7. Tried the minimal dose of 25micrograms, but it was too much for me at this time. My pulse increased, blood pressure went up, etc...but it did improve my fatigue levels...but I'm back off of it for now.

    I wouldn't read too much into it at this time...I know that is much easier said than done.... If nothing else and to satisfy some anxiety, why not call or visit your ENT or the MD that referred you and communicate one on one...it's much easier to read more into a phone call or email sometimes than in reality wasn't the intent.

    Best,
    John
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #5
    ratface said:

    some observations
    you might not be seeing. First, you don't mention if you had chemo although it would seem likely from your diagnosis. If so, chemo changes all your bloodwork for months after treatment and I can see why your GP is having a diffcult time adjusting. Also how much weight have you lost and might that translate to a lower dose? I am also on thyroid medicine and this occured 9 months after treatment. It would be unusual for your GP to leave a phone message in which she suspected you still had cancer and to schedule the Thyroid doctor so far out? You are being way too optomistic on recovery with the throat pain. 8 weeks is minimal. My voice remained horase for at least six months post treatment and this was one of my pre-cancer symptoms, so again give yourself more time. I know it's scary but you need a different set of eyes on this one and I'm just not seeing it. Call your GP and talk to him/her. Call the thyroid doctor, tell them you are a cancer patient and you need a closer appointment and will sit in the lobby or whatever fits their schedule as they can notify you when they have a cancelation.

    Thyroid can be tricky to
    Thyroid can be tricky to diagnose. My best girl friend had graves, over active thyroid, meanwhile she had all the symptoms for UNDERactive thyroid. Craziest thing is that she gained like 60 lbs in three months. WTH? Took them years to get her straight, unfortunately. She has tons of medical problems tho.

    Hoping that they get you regulated and fixed up quickly. Unfortunately Chemo, and especially rads last in your body a long time.


    Blessings,

    Sweet
  • DJG1
    DJG1 Member Posts: 121
    #6
    Skiffin16 said:

    Time
    I agree with Ratface as for your time out....especially concerning bloodwork.

    It took me nearly a year before all of my blood work came back into the normal ranges. Have they montiored your TSH during treatemnt? I have all of my CBC bloodwork lab results for each test they did on me while in treatment, somewhere in the range of 12 - 15 individual test dates. I know exactly what levels were low, or high..and the majority were either.

    While more than likely if you did have radiation, your thyroid will take a hit. Not sure how that will be played out with you since you went in apparently with thyroid problems.

    Again the things that Ratface mentioned all play into that equation, weight loss, etc....

    I'm 18+ months out and starting to have signs that my thyroid isn't working...my TSH levels have gone from 1.2 to 5.7. Tried the minimal dose of 25micrograms, but it was too much for me at this time. My pulse increased, blood pressure went up, etc...but it did improve my fatigue levels...but I'm back off of it for now.

    I wouldn't read too much into it at this time...I know that is much easier said than done.... If nothing else and to satisfy some anxiety, why not call or visit your ENT or the MD that referred you and communicate one on one...it's much easier to read more into a phone call or email sometimes than in reality wasn't the intent.

    Best,
    John

    Thanks for all your info.
    To clear up some of the questions. No Chemo, I have lost 40 lbs since July, but most due to change in lifestyle (diet). Exercise daily eating fruit & veggies and little sugar and meat. Just the 33 rad treatments and tonsls removed with lymp nodes removed.But I can see where that might have an effect on the dosage. The GP has been testing the thryoid about every 2-3 months to get it regulated. She was not surprised that there was a change, just suprised that it was being over medicated now, and change in dossage was not correting problem. That promped another blood test that confimed a problem. Her phone message said antibodies were not correct. Thats what the test results are reading. Typically (1 in 4) have thryoid problems after radation (maybe not 8 week out), but the problem is underactive. I do not have specific numbers, but I am going to pick up those copies before seeing my ent on Monday. I am sure rat face is correct, another set of eyes may see something different. I was also surprised to learn that the ENT does not treat the thryoid. I thought it would be part of the head and neck. I would think that he would have some opinion on the subject and if deems necessary to see specialits sooner, he may have the means to make it happen sooner. But who knows. THanks for listening and calming me down a bit. I am sure some of this is also the anxiety that goes with the first trip back to the ENT and the scope, as so many here on this board talk about before any of the tests or scans. I'll keep you posted as things progress.
    Debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    sweetblood22 said:

    Thyroid can be tricky to
    Thyroid can be tricky to diagnose. My best girl friend had graves, over active thyroid, meanwhile she had all the symptoms for UNDERactive thyroid. Craziest thing is that she gained like 60 lbs in three months. WTH? Took them years to get her straight, unfortunately. She has tons of medical problems tho.

    Hoping that they get you regulated and fixed up quickly. Unfortunately Chemo, and especially rads last in your body a long time.


    Blessings,

    Sweet

    Hi Deb
    Same here it took a little over a year for my thyroid to level out and stop working so they could get the meds right, I am not on .112 a day.

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