# One great day followed by an awefull one



## katbid23

Hello everyone
Not sure if this is normal or not. Tuesday I felt so good. I mean I was singing at work and just had so much energy. I even sent my husband a text telling him how great I felt. He always knows when I don't feel well so I wanted to share how great I felt that day. So I wake up yesterday morning with a massive headache, serious neck pain, neck was swollen under chin, and my lymph nodes under my chin area were large. I felt like crap. I drove my hour to work hoping I would feel better when I got here. I got out of the car and came in the building and turned around and went home. I just couldn't stay. I went home and laid on the couch the rest of the day. My husband wanted me to go see a dr. But I didn't. I don't even know which Doctor to go too. Do I go to my endo (thinking it is thyroid or cancer related?) or do I go to my primary dr (thinking it's just a virus?) So I did't go at all. Today is a little better, lymph nodes are still a little large but the swelling has gone down. The headache is still here but at least tollerable. 
I think I'm going to give it a few days and see how I feel next week. Has anyone else experienced anything like this?
Thanks


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## Andros

katbid23 said:


> Hello everyone
> Not sure if this is normal or not. Tuesday I felt so good. I mean I was singing at work and just had so much energy. I even sent my husband a text telling him how great I felt. He always knows when I don't feel well so I wanted to share how great I felt that day. So I wake up yesterday morning with a massive headache, serious neck pain, neck was swollen under chin, and my lymph nodes under my chin area were large. I felt like crap. I drove my hour to work hoping I would feel better when I got here. I got out of the car and came in the building and turned around and went home. I just couldn't stay. I went home and laid on the couch the rest of the day. My husband wanted me to go see a dr. But I didn't. I don't even know which Doctor to go too. Do I go to my endo (thinking it is thyroid or cancer related?) or do I go to my primary dr (thinking it's just a virus?) So I did't go at all. Today is a little better, lymph nodes are still a little large but the swelling has gone down. The headache is still here but at least tollerable.
> I think I'm going to give it a few days and see how I feel next week. Has anyone else experienced anything like this?
> Thanks


Sounds like you are really ill! What is your history? You started a new thread and with so many posters, I cannot remember.

How are you right now this minute? Did you go to work?


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## katbid23

Diagnosed with Graves in Aug 2010 with Toxic multinodular goiter. Thyroidectomy 31 Dec 2010. Diagnosed with classic papillary and follicular varient of papillary in Jan 2011. RAI in Feb 2011 (150). Now on synthroid 150. I actually did come to work (and stayed) today. I really don't have much choice when it comes that. I used all my leave up when I had the TT and radiation treatment. I have to save what I can for just in case I have to have another treatment. I'm still in pain but it is better than yesterday. Yesterday I ended up taking pain pills all day. I can't do that when I'm at work. It feels like my lymph nodes are still enlarged. This is why I don't know which doctor to go see. This could just be some type of virus or something or it could be thyroid related. It's so hard to decide. I usually just don't go at all. I will wait it out and see how it goes the next week or so. I am do to go back to see the endo on the 13 of June. I'm just wondering how everyone else determines what kind of DR. to see when they are feeling bad. I don't want to bother the endo if it isn't related to thyroid and I don't want to go to Primary if all they do is send me to Endo.. It can be so confusing.


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## Andros

katbid23 said:


> Diagnosed with Graves in Aug 2010 with Toxic multinodular goiter. Thyroidectomy 31 Dec 2010. Diagnosed with classic papillary and follicular varient of papillary in Jan 2011. RAI in Feb 2011 (150). Now on synthroid 150. I actually did come to work (and stayed) today. I really don't have much choice when it comes that. I used all my leave up when I had the TT and radiation treatment. I have to save what I can for just in case I have to have another treatment. I'm still in pain but it is better than yesterday. Yesterday I ended up taking pain pills all day. I can't do that when I'm at work. It feels like my lymph nodes are still enlarged. This is why I don't know which doctor to go see. This could just be some type of virus or something or it could be thyroid related. It's so hard to decide. I usually just don't go at all. I will wait it out and see how it goes the next week or so. I am do to go back to see the endo on the 13 of June. I'm just wondering how everyone else determines what kind of DR. to see when they are feeling bad. I don't want to bother the endo if it isn't related to thyroid and I don't want to go to Primary if all they do is send me to Endo.. It can be so confusing.


When did you last have labs? Because of cancer, your TSH is supposed to be suppressed and has anyone run a FREE T3 test on you? That is your active hormone which provides energy but the most important job is that you need it to heal.

Where is your pain located?

I feel something is wrong. By now, you should be feeling pretty darn good and you should not be having swollen lymph glands. There are other reasons besides cancer but given your history, I would at least call whomever did your surgery. Was it an ENT??

Quite frankly, I would not mess around with this at all. I am very worried about you and thank you for refreshing my memory.

It would be good if we can keep it to one thread.


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## katbid23

Sorry about the new thread. I thought you were suppose to new threads if you have new questions or concerns. But I will try to keep it to one. 
I actually had my surgery performed by a general surgeon. My pain is on the left side of my neck and also have a headache. The headache comes and goes but the neck pain doesn't. It's is always here and I think it is really over staying it's welcome!!!!! I have had a lot of neck pain due to having cervical stenosis.. I actully need a a double fushion of the cervical spine. They won't do the fushion because of the cancer and the possibility of having to have more RAI treatment. My nureosurgeon said that the fushion may not be successfull if I have to have more RAI treatment. So I went in and had my Steroid Epidural of the cervical spine... well that help the back on my neck and shoulders...... but the pain on the left side of my neck has never went away... this causes me to think that the pain I am feeling in that area, is not due to the cervical stenosis. It is all so complicated and I hate it. The neck pain I was feeling yesterday was very close to the unbearable mark. Thank God for Loratabs. But I usually only take one before I go to bed. I guess you could call it "gut feeling" or you could call it "paranoa" but I feel like something is going on. Just haven't figured out enough so I can decide who to go see. I also don't want to be classified as a hypercondriac.


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## Andros

katbid23 said:


> Sorry about the new thread. I thought you were suppose to new threads if you have new questions or concerns. But I will try to keep it to one.
> I actually had my surgery performed by a general surgeon. My pain is on the left side of my neck and also have a headache. The headache comes and goes but the neck pain doesn't. It's is always here and I think it is really over staying it's welcome!!!!! I have had a lot of neck pain due to having cervical stenosis.. I actully need a a double fushion of the cervical spine. They won't do the fushion because of the cancer and the possibility of having to have more RAI treatment. My nureosurgeon said that the fushion may not be successfull if I have to have more RAI treatment. So I went in and had my Steroid Epidural of the cervical spine... well that help the back on my neck and shoulders...... but the pain on the left side of my neck has never went away... this causes me to think that the pain I am feeling in that area, is not due to the cervical stenosis. It is all so complicated and I hate it. The neck pain I was feeling yesterday was very close to the unbearable mark. Thank God for Loratabs. But I usually only take one before I go to bed. I guess you could call it "gut feeling" or you could call it "paranoa" but I feel like something is going on. Just haven't figured out enough so I can decide who to go see. I also don't want to be classified as a hypercondriac.


There are no rules but I try really hard to help everyone and it is so much easier to have the history in the same thread so I can find it quickly.

Bless your little heart. Oh, my goodness! Honey..............I do think you need someone to FNA those lymphs. I truly really do. I hate this for you but I do want you to live and have a happy life so really, this cannot be ignored.

You certainly have had your health challenges; there is no question of that.

I will say prayers for you. Let us know who you decide to talk to about this. You have to start somewhere; you know the drill by now, I am sure.

God bless.........................;everything is going to be alright. Another blip on the screen. I know you are discouraged but I sense you are a fighter so get out there and fight!

If I were you, I would not give a flying flip what anybody thinks or doesn't think.


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## katbid23

Wow!! that last sentenced really means a lot. You are so right. I guess that has been a hang up of mine for a long time. Not wanting anyone to think negative of me. Thanks for the encouragement and I will get this checked out.


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## katbid23

Well it's that time again. I went to my oncology apt Thursday. Guess what? Still no shots available. Last time I had to do the scan they gave me the shots so I wouldn't have to go hypo. Not going to be so lucky this time. I go off my synthroid on the 12th and start taking cytomel (sp?). I will stop taking meds all together on the 3rd of Oct and start the Low Iodine diet (I can hardly wait). The scan is scheduled for the 21st of Oct. Pray that it is clean!!!!


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## Andros

katbid23 said:


> Well it's that time again. I went to my oncology apt Thursday. Guess what? Still no shots available. Last time I had to do the scan they gave me the shots so I wouldn't have to go hypo. Not going to be so lucky this time. I go off my synthroid on the 12th and start taking cytomel (sp?). I will stop taking meds all together on the 3rd of Oct and start the Low Iodine diet (I can hardly wait). The scan is scheduled for the 21st of Oct. Pray that it is clean!!!!


Good to hear from you; it's been a while!! I will pray that all is well and keep you in my thoughts.

How have you been feeling?


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## katbid23

Hi Andros. I've been feeling okay. I can tell I'm going to have issues when winter comes. It dropped to 60 degrees yesterday and I thought I was going to freeze to death. No complaints here, just going day by day until I get the "all clear" from the oncologist. That's when I feel like I will start living again.
How have you been?


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## Andros

katbid23 said:


> Hi Andros. I've been feeling okay. I can tell I'm going to have issues when winter comes. It dropped to 60 degrees yesterday and I thought I was going to freeze to death. No complaints here, just going day by day until I get the "all clear" from the oncologist. That's when I feel like I will start living again.
> How have you been?


Doing well on my end also. Same here; don't tolerate cold too well! Aaaaaaaaaaaargh!

And you will get the "all clear"; keep the faith. The worst is behind you now. The healing pathway is before you!


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## katbid23

Just dropping in to give an update. I went to the Oncologist around the 20th of Sep and he gave me the great news that there were no Thyrogen shots available. So I was put on cytomel (sp) for two weeks and then had to stop all meds and go on LID. Well within 4 days of no thyroid hormones, I was going crazy. I have never been hypo and did not really know what to expect. It is/was aweful. I called my endo yesterday morning and told him I just couldn't keep going on like this. I was totally non-functional. Couldn't go to work couldn't/wouldn't do anything around the house. And oh by the way, just moved to a new house 2 weeks ago and have lots to do. So my endo called my oncologist and guess what? My oncologist called me last night and told me they have thyrogen now and I could go back on my meds. I took the pill right away. I am already feeling better today. I could at least get up and go to work. Don't know if I can stay all day but it's a lot better than the last two days. 
I have developed a totally new respect for anyone that has to go through hypothyroidism. WOW!!! I couldn't handle it for a week, don't know how anyone can go weeks like that.


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## Andros

katbid23 said:


> Just dropping in to give an update. I went to the Oncologist around the 20th of Sep and he gave me the great news that there were no Thyrogen shots available. So I was put on cytomel (sp) for two weeks and then had to stop all meds and go on LID. Well within 4 days of no thyroid hormones, I was going crazy. I have never been hypo and did not really know what to expect. It is/was aweful. I called my endo yesterday morning and told him I just couldn't keep going on like this. I was totally non-functional. Couldn't go to work couldn't/wouldn't do anything around the house. And oh by the way, just moved to a new house 2 weeks ago and have lots to do. So my endo called my oncologist and guess what? My oncologist called me last night and told me they have thyrogen now and I could go back on my meds. I took the pill right away. I am already feeling better today. I could at least get up and go to work. Don't know if I can stay all day but it's a lot better than the last two days.
> I have developed a totally new respect for anyone that has to go through hypothyroidism. WOW!!! I couldn't handle it for a week, don't know how anyone can go weeks like that.


Thank goodness; I am so glad they got the Thyrogen. Yeah, baby! It's the pits. Either way is no fun. Hypo or hyper; both are bad.


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## katbid23

Can anyone tell me what this stage means? T2BNXMX? I can't find out what "B" stands for.

Thanks


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## Andros

katbid23 said:


> Can anyone tell me what this stage means? T2BNXMX? I can't find out what "B" stands for.
> 
> Thanks


Is this in reference to cancer? If so, it means Stage 2 and with the B added, it is close to stage 3. If it were 2A, that would be in the middle sort of or less.

If not, I have no idea.

Let us know.


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## katbid23

Thanks Andros. I really haven't been that concerned for awhile but now that I have started my appts again and getting ready for my scan on Friday, I have some doubt about my oncologist. When I went to see him on the 1st of Sep I asked him what stage I was in and he told me stage 1. However, I requested a copy of all my medical records because I have to turn them into the military and I saw where the Doctor actually wrote my stage down as T2B.... that is why I became curious. Why would he tell me stage one and then write something else. I mean I don't want to be over concerned or worried, but I also don't want to be underconcerned or worried.

Thanks for the info.


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## Andros

katbid23 said:


> Thanks Andros. I really haven't been that concerned for awhile but now that I have started my appts again and getting ready for my scan on Friday, I have some doubt about my oncologist. When I went to see him on the 1st of Sep I asked him what stage I was in and he told me stage 1. However, I requested a copy of all my medical records because I have to turn them into the military and I saw where the Doctor actually wrote my stage down as T2B.... that is why I became curious. Why would he tell me stage one and then write something else. I mean I don't want to be over concerned or worried, but I also don't want to be underconcerned or worried.
> 
> Thanks for the info.


Well; you best double-check on that because I am not 100% on that. I have a friend who has stage 2B squamous cell cancer of the uterus and this is how it was explained to me.

So, please do ask someone in the know and correct me if I am wrong. I like to learn things and surely will not be offended.


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## katbid23

I would tend to agree with you but I will try to find out for sure. The research I did indicated that I wouldn't be stage 1 becuase of the size of the tumor, the fact that it had protruded outside the capsule, multi foci, and my age at time of dx. The staging at this point is as bothersome as possibly having a DR that isn't being straightforward or honest with me. I'm not the type of person that has to have things sugarcoated.

Thanks


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## Andros

katbid23 said:


> I would tend to agree with you but I will try to find out for sure. The research I did indicated that I wouldn't be stage 1 becuase of the size of the tumor, the fact that it had protruded outside the capsule, multi foci, and my age at time of dx. The staging at this point is as bothersome as possibly having a DR that isn't being straightforward or honest with me. I'm not the type of person that has to have things sugarcoated.
> 
> Thanks


Nor am I!! I want to know straight on. That way I can get my head wrapped around it. Knowledge is power!


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## katbid23

Happy Dance going on here!!! Had my scan Friday and they told me that there is no trace of the cancer. I go back in 6 months for a check up.


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## joplin1975

Fantastic news!


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## Andros

katbid23 said:


> Happy Dance going on here!!! Had my scan Friday and they told me that there is no trace of the cancer. I go back in 6 months for a check up.


What a relief to know this. Thank God!


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## katbid23

Hello,
I have a question in regards to decreasing synthroid prior to any surgical procedure. I am getting ready to have a multi-level anterior cervical disection and fushion and my endo told me that I would have to have my TSH raised prior to having this surgery. Has anyone been told this before? I'm just wondering how high will my TSH have to be and for how long. I really don't want to have to go hypo prior to having this surgery. I had to put this operation off for a year while I dealth with the thyroidectomy and cancer. I can't wait any longer. Any info or guidance would be appreciated.

Thanks and hope everyone has a great Thanksgiving!


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## Andros

katbid23 said:


> Hello,
> I have a question in regards to decreasing synthroid prior to any surgical procedure. I am getting ready to have a multi-level anterior cervical disection and fushion and my endo told me that I would have to have my TSH raised prior to having this surgery. Has anyone been told this before? I'm just wondering how high will my TSH have to be and for how long. I really don't want to have to go hypo prior to having this surgery. I had to put this operation off for a year while I dealth with the thyroidectomy and cancer. I can't wait any longer. Any info or guidance would be appreciated.
> 
> Thanks and hope everyone has a great Thanksgiving!


Are they going to be using a contrast dye or some medication that would adrenergic?

You might want to talk to your surgeon about this and Synthroid most certainly has a toll-free number. I would inquire there also.

And, do let us know. I would like to learn something I don't already know.


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