Unexplained Sensations

I was hoping to be able to list off a few of the unexplained and weird sensations I have been having since this whole thing began with me.  It is my hope that if someone else has felt these things they might possibly be able to ease my mind that I am not crazy!

By the way:  Long story short I had a TT in March 2008 and I am scheduled for RAI in June 2008.  I was diagnosed with Papillary Carcinoma with an Oxyphyllic Variant.  I had a large goiter (it was about 5 cm) and a nodule on the right side that were cancerous and several nodules on the left that were believed to be cancerous as well.  The cancer cells were also present in the lymph nodes around the thyroid.

I was having a hard time swallowing.  It got to the point that I quit eating--just drank ensure if I could--because food felt as if it were getting stuck in my throat.  It was even hard to get liquid down because I just couldn't seem to be able to MAKE myself swallow.

Now I can eat but it's difficult and still very hard to make sure I swallow the "right way". 

Sometimes I feel like I can't breath, almost as if I had to suddenly gasp for breath and concentrate on breathing.

My ears hurt.

My chest hurts sometimes--almost a pressure.

I have been having an on and off burning sensation in my upper left arm and across my chest.

Sometimes my fingers feel numb.

My muscles twitch sometimes and warmth travels upward from the spot it started at. 

My head aches and I have sharp pains on either side.

My hair is falling out since I started taking Cytomel.

And of course I am so tired all the time.  Any activity makes my heart feel like it is going to beat out of my chest.

I feel totally awful but have no idea what I should take seriously and what is just my body wanting to be back to "normal".

Thank you so much for anything anyone can tell me or add to this post. 

I am sure I forgot some things but will continue to add to this post.

I am just so tired of feeling this way as I am sure everyone here is!  I am tired of being scared everytime I feel something else I don't think is normal.  Please, anything at all you can compare to or explain I thank you.

 

 

 

On 5/10/2008 lrquake wrote:

I was hoping to be able to list off a few of the unexplained and weird sensations I have been having since this whole thing began with me.  It is my hope that if someone else has felt these things they might possibly be able to ease my mind that I am not crazy!

By the way:  Long story short I had a TT in March 2008 and I am scheduled for RAI in June 2008.  I was diagnosed with Papillary Carcinoma with an Oxyphyllic Variant.  I had a large goiter (it was about 5 cm) and a nodule on the right side that were cancerous and several nodules on the left that were believed to be cancerous as well.  The cancer cells were also present in the lymph nodes around the thyroid.

I was having a hard time swallowing.  It got to the point that I quit eating--just drank ensure if I could--because food felt as if it were getting stuck in my throat.  It was even hard to get liquid down because I just couldn't seem to be able to MAKE myself swallow.

Now I can eat but it's difficult and still very hard to make sure I swallow the "right way". 

Sometimes I feel like I can't breath, almost as if I had to suddenly gasp for breath and concentrate on breathing.

My ears hurt.

My chest hurts sometimes--almost a pressure.

I have been having an on and off burning sensation in my upper left arm and across my chest.

Sometimes my fingers feel numb.

My muscles twitch sometimes and warmth travels upward from the spot it started at. 

My head aches and I have sharp pains on either side.

My hair is falling out since I started taking Cytomel.

And of course I am so tired all the time.  Any activity makes my heart feel like it is going to beat out of my chest.

I feel totally awful but have no idea what I should take seriously and what is just my body wanting to be back to "normal".

Thank you so much for anything anyone can tell me or add to this post. 

I am sure I forgot some things but will continue to add to this post.

I am just so tired of feeling this way as I am sure everyone here is!  I am tired of being scared everytime I feel something else I don't think is normal.  Please, anything at all you can compare to or explain I thank you.

 

 

 

I had the same with the swallowing and breathing.  My surgeon put me on steroids.  He found my throat swoll up after surgery.  It really helped.  My TT was also in March.  It took two weeks until I could eat anything other than soup, apple sauce, and drinks.  It took me seven weeks to get my voice back.  It's still not perfect and is strained by the end of the day but at least I can be heard.

If you have muscle spasms and/or tingling, that is low calcium.  Has your endo checked your calcium levels?  My were low right out of the hospital.  I had the same sensations and my endo uped my calcium intake,  I take viactiv and tums; 1250 mg/day.  The muscle problems have gone away.

Alot of people suffer from headaches and hair loss during the hypo stage.  It sounds to me, and I am not a dr, , that your Cytomel isn't high enough.  Your doctor is giving you Cytomel because it's the easiest to take you off of to make you hypo in prep for the RAI.  If they believe you have metastisized, then they won't be using Thyrogen in prep; just let you go hypo.  But you shouldn't be hypo yet.  From the symptoms you're describing, your calcium and hormones are way too low.  You need to speak with your endo.

I hope that helps.  But you should not be having those symptoms at this stage.

Good luck.

Thanks--that does help!

My calcium levels were low right out surgery too.  They put me on OsCal 500+D--3 pills, 4 times a day!  That was for about 3 weeks or so.  Then I was lowered down to 3 pills a day for about a week.  Then after seeing my endo she said I could quit taking it if I wanted to.  My levels checked out normal at that time.  I was told that my blood potassium levels were low as well and advised to eat a banana a day to combat any physical symptoms. 

I was taking a Cytomel pill in the morning and one at night.  Then I started getting the chest pressure and pain really bad.  I felt like my heart was beating super fast even when I was just sitting there.  My endo told me to cut down and take only half in morning and half at night.  That stopped the really bad pressure after a few days but it hasn't gone away for good. 

I just hate feeling all these weird feelings.  If I were just tired maybe it would be easier--?? 

I had a daughter in November--my first--and it was after giving birth that my thyroid seemed to really go haywire--hormones?  I am so nervous about the RAI and having to be away from her and my husband and family for so long.

I go off meds and start the low iodine diet next week--heard that was fun--can't wait--Yea right!  Wonder what crazy things I'll feel then? 

Thanks so much for your input.  Thanks for sharing your story with me. 

Take care.

 

Hi there, I just wanted to share a little bit of my experience with you, I hope it helps a little.  I had a TT back in Dec. I was put on Cytomel after my surgery while I waited for RAI.  While I was on Cytomel I had many of the same problems as you.  When I was younger I used to get panic attacks, so I knew exactly what was going on.  I called my endo and he said it was from the Cytomel.  For some reason some people react that way to that drug.  As soon as I stopped taking it, I felt better within a couple days.  It was aweful while it lasted, I really thought I was going to die.  I don't know if this is what is going on with you, but if it is it can be very scarey.  If you look up the symtoms of panic disorders you will see many of the symtoms you are taking about.   I refuse to ever use Cytomel again it made me feel so bad.  I hope this helps you a little.  Good luck!!  Skylog

Thank you so much for sharing that!

 I too have had a little bit of a history with anxiety or panic.

It is so hard to stay calm and try to convince myself that I am not going to keel over right then and there.  It is a battle I fight everytime I feel something that I don't think is normal.  I deal with it everyday.

I cannot wait until I can get back on synthroid and try to get back to normal.

Thanks again.

Take care.

No problem,  I hope I helped.  It is very hard to stay calm through all of this.  When I went for my preop with my surgeon he could tell how bad I was doing with the news of having cancer.  After telling me about the operation he brought me a prescription for an anxiety drug and told me to go home, take two, and take a long nap.  He even told me to take one the morning of my thyriodectomy.  It was a life saver!!  I still take one now and then, but it has gotten alot better since I am on my regular thyroid meds. 

It just makes me be able to take a deeper--longer breath to realize that I am not crazy.

I knew that something was wrong even before I found out for sure but no one seemed to take what I was saying seriously.

I am now going through so much--as I am sure many of us are--and I realize in the bigger sense that I am lucky--but that doesn't somehow make it any better!

I know what I feel and I have to take it one step at a time throughout every day. 

Thank you all so much for your support and stories.  It helps so much.