Can I feel better after Thyroid cancer?

[Rie369]

I was diagnosed with papillary thyroid cancer in April 2008, had TT in May and RAI that July. As for the cancer, all is good.  My last body scan this January was all clean!  Yahoo!  But I still do not feel great after nearly 2 years.  Nothing major, but I am cold all the time, no energy, dry skin, and frequent headaches.  Then starting last June, some weird nerve problem in my ear/jaw area that zings shooting pains down my jaw when eating and otherwise feels like my ear is plugged up (ENT could find no reason at all for this, eardrums all good, hearing fine, nothing on CT scan).  I have tried to bring this up to my endo, but he always dismisses my concerns as "not related to the thyroid", since as he says, "you don't have one."  I will be trying to have one more heart-to-heart with him soon, but I am looking for any ideas at this point.  
My daughter wants me to be able to act like the 40 year-old that I am supposed to be instead of the 80 year old I feel like sometimes.  Any help would be appreciated!!
If it helps, my last labs showed my Thyroglobulin at 11 h IU/mL, TSH at 0.040 uIU/mL and Free T4 at 1.3 ng/dL (He has never checked the T3 levels so far).   Thanks again!!

[kipland]

I sent you a message....let me know if you need the name of a good endo if you can't get through to yours.  It may be a little drive for you, but it's well worth it!
Keep us posted.

[Rie369]

Thanks for all the input. I am keeping my fingers crossed.  I see my endo tomorrow and hope to get through to him.  Otherwise I may be shopping for a new endo!  I promised my daughter that I would work this out and I really need to do that!

Thanks again and hoping all of you feel great and stay healthy!

[kipland]

I feel for you, as I'm in the same boat.  TT in August of '07, RAI in Sept., then another scan the following year.  Cancer free, which I'm thankful for.  However, I've been on the same dose of levoxyl since I started it.  I felt really good the first year.  Then I started having all kinds of symptoms of being hypo....the weight gain, achy joints, puffy face, feel like my feet, calves and fingers are swollen to the point that they feel they are going to burst at times.  Quite honestly, I've felt like absolute c r a p this last year!!  I had my follow up appt. with an endo at the university hospital where I had they thyroid removed.  Left there with basically a "I've seen it time and again, when they remove the thyroid, people gain weight for whatever reason".  AND was sent with a lab slip for a glucose tolerance test.  Nice.  Thanks so much.  What I failed to share with her is that I kept 150 pounds off for 21 years BEFORE this happened to me, so seriously.....I know how to control my weight.  Or, I should say, I used to know!!

I have now found a new endo who actually listened to me, and promised to help me feel better.  I told her that I felt the university docs go by lab results alone, and not the way a person feels.  She agreed and said she doesn't practice that way.  THANK GOODNESS!!!  She's changing my meds (from levoxyl to Armour), so hopefully this will be the answer for me.  

I agree with Liz94....I believe that this is something that we'll have to fight with for the rest of our lives - but it's finding a doctor that's willing to work with you and go by how you FEEL and not just by labs.  We know our bodies, and know when something isn't quite right.  It angers me to read that comment "It's not related to the thyroid, because you don't have one".  Seriously?  If you don't get anywhere after your heart to heart with him, I'd suggest finding a new one that will actually listen.  Good luck to you!!!

Lori

[Liz94]

My story is very similar to yours. I had my TT in Dec. 2007 with RAI in Feb. of 2008 for papillary cancer. All of mine is gone and I've scanned clean twice now.  It took me almost a year and a half before I started feeling well.  Before my TT I was hypothyroid and being treated by my regular doc.  After being diagnosed for cancer I asked to see all of my old labs and saw that my TSH was always right around 4.0.  I felt absolutely fantastic. I'm a runner and I never suffered from any fatigue or anything. Then I get the TT with the cancer and all that junk and doc says my TSH needs to be below 1 for cancer suppression. That's all great and good but when you feel great when it's at a 4.0, you pretty much feel like poo when it's below a 1.  After about 1 1/2 years I finally started feeling better and more like ME.  Only to go in a month ago for labs and he says I need to add Cytomel to my Synthroid. Now I feel like absolute poo again. He's never tested my free T3 so I'm going for labs in a week and I've personally requested it myself. He doesn't think it's necessary but he doesn't know squat!  It's all just a guessing game and I'm beginning to think that I will have ups and downs for the rest of my life with this.  I guess it's finding a doctor that is willing to keep working with you till you get a balance you can live with.

[ChitChatNine]

I battle symptoms when I'm that hyper -- but depending on your cancer and whether it was encapsulated, how many, how big, pathology reports, etc. makes a difference where you TSH should be from what I understand.  I cannot tolerate <1.5 even though I should be < 1.0 or similar to yours.

C~
Partial (other side not working)
papillary micros
1/07
Synthroid 75mcgs

[blsdnsvd]

Your symptoms may be due to the levels of your TSH....being at  the low end of normal for Hyperthyroid. Symptoms for hyper and hypo are somewhat similiar and they both can cause "exhaustion/fatigue"

Lots of us on this site are struggling with trying feel normal and i am basically new...having a TT in 12/09 with hypo symptoms.

I pray that you get some sort of help or guidance that will help your situation.