Guest guest Posted May 12, 2001 Report Share Posted May 12, 2001 Jane-- > Recently started to have throat problems. My already > deepish voice (vocal nerve damage in surgery!) has now become > perminently hoarse. Throat infection gone weeks ago. Also I have a > lump on the right side of my neck. side as opposed to front. In the > UK the thyroglob test take about three weeks to come back so I just > have to wait. But White cell count high and Calcium levels low 2.5 I > already take calc supps and Vit d. I am scared that I have a > reccurrence. Can it manifest in this way? Can it be affecting my > Vocal chords or nerve? Can thyca recurr anywhere in me! It _could_ be a recurrence, but it might not be that at all. The high white cell count sounds like an infection, which could cause swollen lymph glands & thus the lump in your neck. I think you just have to wait & see what that TG level is. > I have been surprised if not shocked at the rate of recurrence. Don't go by any recurrence rate you think you are seeing here. This list is full of 2 groups mostly--the newly diagnosed & people who are having a problem--because that's largely who needs a group. So, we're definitely not representative of thyca patients in general; usually, people have tt & RAI-- & no recurrence, ever. Keep us posted on that TG. Nina geiger@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2001 Report Share Posted May 12, 2001 >Throat infection gone weeks ago. Also I have a lump on the right side >of my neck. side as opposed to front. In the UK the thyroglob test take >about three weeks to come back so I just have to wait. But White cell >count high and Calcium levels low 2.5. <snip> I am scared that I have a reccurrence. Can it manifest in this way? From previous list posts & my own experience, I think it is pretty common for thyca patients to pay more attention to sore throats, neck twinges, aches, and pains that previously may have gone unrecognized. But once you get the thyca diagnosis, the sore throats, swellings and tightness in the neck make you wonder about recurrence. It really helps to review these situations with your doctor & I've found a lot of reassurance once my symptoms were professionally evaluated. Thyca can take away your confidence about your health and well-being. The first year after a thyca treatment involves a lot of learning about what is now 'normal' for us and what is not. Since my tt in 1999 I've had two rounds of severe throat/ear infections. During both times a lymph node became visible in my neck. In my case, both my general practitioner and endo felt that the lymph node swelling was a normal reaction to the infection. Once the infection cleared up - the swelling disappeared completely. My TG tests take 3 weeks for results too and the waiting is difficult. It is impossible not to worry about TG results but remember there is a possibility that your neck swelling may be related to your infection. Good luck & let us know how things work-out for you. . dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin and 2g calcium daily, TSH .005 (time for a dose decrease), TG undetectable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2001 Report Share Posted May 12, 2001 >Throat infection gone weeks ago. Also I have a lump on the right side >of my neck. side as opposed to front. In the UK the thyroglob test take >about three weeks to come back so I just have to wait. But White cell >count high and Calcium levels low 2.5. <snip> I am scared that I have a reccurrence. Can it manifest in this way? From previous list posts & my own experience, I think it is pretty common for thyca patients to pay more attention to sore throats, neck twinges, aches, and pains that previously may have gone unrecognized. But once you get the thyca diagnosis, the sore throats, swellings and tightness in the neck make you wonder about recurrence. It really helps to review these situations with your doctor & I've found a lot of reassurance once my symptoms were professionally evaluated. Thyca can take away your confidence about your health and well-being. The first year after a thyca treatment involves a lot of learning about what is now 'normal' for us and what is not. Since my tt in 1999 I've had two rounds of severe throat/ear infections. During both times a lymph node became visible in my neck. In my case, both my general practitioner and endo felt that the lymph node swelling was a normal reaction to the infection. Once the infection cleared up - the swelling disappeared completely. My TG tests take 3 weeks for results too and the waiting is difficult. It is impossible not to worry about TG results but remember there is a possibility that your neck swelling may be related to your infection. Good luck & let us know how things work-out for you. . dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin and 2g calcium daily, TSH .005 (time for a dose decrease), TG undetectable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2001 Report Share Posted May 12, 2001 >Throat infection gone weeks ago. Also I have a lump on the right side >of my neck. side as opposed to front. In the UK the thyroglob test take >about three weeks to come back so I just have to wait. But White cell >count high and Calcium levels low 2.5. <snip> I am scared that I have a reccurrence. Can it manifest in this way? From previous list posts & my own experience, I think it is pretty common for thyca patients to pay more attention to sore throats, neck twinges, aches, and pains that previously may have gone unrecognized. But once you get the thyca diagnosis, the sore throats, swellings and tightness in the neck make you wonder about recurrence. It really helps to review these situations with your doctor & I've found a lot of reassurance once my symptoms were professionally evaluated. Thyca can take away your confidence about your health and well-being. The first year after a thyca treatment involves a lot of learning about what is now 'normal' for us and what is not. Since my tt in 1999 I've had two rounds of severe throat/ear infections. During both times a lymph node became visible in my neck. In my case, both my general practitioner and endo felt that the lymph node swelling was a normal reaction to the infection. Once the infection cleared up - the swelling disappeared completely. My TG tests take 3 weeks for results too and the waiting is difficult. It is impossible not to worry about TG results but remember there is a possibility that your neck swelling may be related to your infection. Good luck & let us know how things work-out for you. . dx pap-Hurthle cell variant, tt 9/99, RAI 100 mCi 12/99, .2 Eltroxin and 2g calcium daily, TSH .005 (time for a dose decrease), TG undetectable. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2001 Report Share Posted May 12, 2001 Sharkey wrote: > ...(snip)..... > Thyca can take away your confidence about your health and well-being. This statement is so true! Each time we have some weird symptom, many of us immediately think the worst. Everytime we catch a simple cold, or the flu or have some ailment creep up on us we think it is probably related to our thyca and that we have a recurrence or that some new cancer staring us in the face. The overwhelming thought is that " if my body betrayed me before, it can do it again. " I think we all slip into that pattern of expecting 'body betrayal' at one time or another. I know I do. Marilyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 That is SO true... I find that this is one of the most difficult issues to deal with...learning to trust my health/body once again. I just don't feel comfortable in my skin yet. I hate that. I've given it much thought. I think the reason it's a struggle for me is because I didn't really understand the thyca experience. The surgery was the easy part...simple surgery, *easy* treatment, scar heals.... I underestimated the total body adjustment to the medication. This has been more life altering than the cancer dx/surgery. It's very understandable to confuse what might be thyca/med related when symptoms are new and unexpected - much of what you finally accept to be " normal " comes from experience, not prior knowledge. It's stressful to " learn as you go " with this (for me). It's so much more involved than surgically removing the " bad " body part and moving on. The medical " replacement part " just hasn't proven to be quite the equivalent of a good working thyroid yet. Of course, lingering complications from surgery don't help! I didn't anticipate the mental/emotional effects. Re: Im scared! > Sharkey wrote: > > > ...(snip)..... > > Thyca can take away your confidence about your health and well-being. > > This statement is so true! Each time we have some weird symptom, many > of us immediately think the worst. Everytime we catch a simple cold, or > the flu or have some ailment creep up on us we think it is probably > related to our thyca and that we have a recurrence or that some new > cancer staring us in the face. The overwhelming thought is that " if my > body betrayed me before, it can do it again. " > > I think we all slip into that pattern of expecting 'body betrayal' at > one time or another. I know I do. > > Marilyn > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2001 Report Share Posted May 13, 2001 Oh Sandy.... I can't agree with you more. My PT was 5/01, TT 6/01, RAI (147 micu.) 8/01..... haven't felt good since. Can't seem to get suppression dosage right! So frustrated and angry with my body ! Like you said, the surgery was the easy part. Even my anesthesiologist said thyca was the best cancer to get if you had to have one because the treatment was so easy !! Right ! I'm still not sure what I'm going to do. The oncologist who treated my mom's breast cancer is where I started. He was running TSH every one to two weeks and then adjusting Levoxyl ! It was a roller coaster and I didn't want to offend his judgment so I said nothing. Primary care doc said he wanted me to see endo. Went to endo and he adjusted meds and had me come back in 6 weeks. Adjusted the meds again (TSH was less than 0.01! Now on 0.2 Levoxyl and told me to schedule my body scan for August. I asked him why I was still so fatigued and felt so rotten and his response was " I don't know " .... and that was the end of the visit. !! I haven't been able to work since the end of January and now boss tells me he's not sure how much longer he can hold my job! So, scan is set for 8/14 & 17, off meds on 7/3 and I haven't been stable in a year !!!! I know my oncologist will read info I take to him so I'm hoping to compile treatment protocol for suppression dosage from either Dr. Rolla or Dr. Ain and take it to my oncologist. At least he listens to me !!! I don't think I've ever really dealt with the diagnosis of thyca. I guess I really didn't look at it like cancer because all of the specialists where telling me that it's so easy to treat. No chemo, no hair loss ... so I guess I just didn't accept the fact that it is still cancer ! YIKES>..... and they all just keep saying.... " Things will get better " ...... whew... and now I'm approaching time to go hypo for the scan ! Yippeee yahoo..... thpppppppt !! Sue Ramsdell , age 51, papillary with folicular variant --- Sandy Glenn wrote: > That is SO true... > > I find that this is one of the most difficult issues > to deal with...learning > to trust my health/body once again. I just don't > feel comfortable in my > skin yet. I hate that. > > I've given it much thought. I think the reason it's > a struggle for me is > because I didn't really understand the thyca > experience. The surgery was > the easy part...simple surgery, *easy* treatment, > scar heals.... I > underestimated the total body adjustment to the > medication. This has been > more life altering than the cancer dx/surgery. It's > very understandable to > confuse what might be thyca/med related when > symptoms are new and > unexpected - much of what you finally accept to be > " normal " comes from > experience, not prior knowledge. It's stressful to > " learn as you go " with > this (for me). > > It's so much more involved than surgically removing > the " bad " body part and > moving on. The medical " replacement part " just > hasn't proven to be quite > the equivalent of a good working thyroid yet. > > Of course, lingering complications from surgery > don't help! > > I didn't anticipate the mental/emotional effects. > > > Re: Im scared! > > > > Sharkey wrote: > > > > > ...(snip)..... > > > Thyca can take away your confidence about your > health and well-being. > > > > This statement is so true! Each time we have some > weird symptom, many > > of us immediately think the worst. Everytime we > catch a simple cold, or > > the flu or have some ailment creep up on us we > think it is probably > > related to our thyca and that we have a recurrence > or that some new > > cancer staring us in the face. The overwhelming > thought is that " if my > > body betrayed me before, it can do it again. " > > > > I think we all slip into that pattern of expecting > 'body betrayal' at > > one time or another. I know I do. > > > > Marilyn > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > For more information regarding thyroid cancer > visit www.thyca.org. If you > do not wish to belong to this group, you may > UNSUBSCRIBE by sending a blank > email to thyca-unsubscribe > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2001 Report Share Posted May 14, 2001 Sue, It seems many of us who are having a tough time getting over this have also had a tough time getting our medication right. I also had somewhat of a rollercoaster experience with my medication. I had never taken any thyroid meds before TT. Started out at .075, TSH more than doubled 6 weeks after RAI. Dose was increased to .150, then to .175 - felt like too much, so decreased to .163 in the form of 2 pills. My TSH was .88 at the .150 dose, but more than doubled to 1.96 when INCREASED to .163. So....now, I'm on ..175 and seemed to have handled the " slower " increase much better. My last TSH was .31 - took 6 months to get there. The whole medication ride has been a mystery to me. Don't know how my TSH could have doubled on an increase of meds with no thyroid in the equation to alter things. I still think my .175 dose seems high for my 124 lbs., though I know weight isn't the only factor in dosage. I wonder if this struggle with TSH/medication is a common scenario for those who don't bounce back as quickly as others. I hear ya! Sandy Re: Im scared! > > > > > > > Sharkey wrote: > > > > > > > ...(snip)..... > > > > Thyca can take away your confidence about your > > health and well-being. > > > > > > This statement is so true! Each time we have some > > weird symptom, many > > > of us immediately think the worst. Everytime we > > catch a simple cold, or > > > the flu or have some ailment creep up on us we > > think it is probably > > > related to our thyca and that we have a recurrence > > or that some new > > > cancer staring us in the face. The overwhelming > > thought is that " if my > > > body betrayed me before, it can do it again. " > > > > > > I think we all slip into that pattern of expecting > > 'body betrayal' at > > > one time or another. I know I do. > > > > > > Marilyn > > > > > > > > > > > > > > > [Non-text portions of this message have been > > removed] > > > > > > > > > For more information regarding thyroid cancer > > visit www.thyca.org. If you > > do not wish to belong to this group, you may > > UNSUBSCRIBE by sending a blank > > email to thyca-unsubscribe > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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