Pap Thyroid Cancer - Post Thyroidectomy Suddenly high TSH

[sylance9]

Hey all,

I was diagnosed with Papillary thyroid cancer back in 2015, which had local spread to some lymph nodes.  I had two doses if Rad Iodine, and have been taking my levo.  I was laid off a few months ago, and haven't had insurance.  I felt off, face and body ballooning, SUPER coma like tired, cold to the bone (need three pairs of socks and two sweaters) Dazed...just feel super bad.  Our local hospital allows you to go in and pay 25 to have your TSH checked, so I did.  I got my test results back and it was 48.7.  

I know I need to keep it suppressed to keep the cancer from coming back.   Is my TSH this high something I should be worried about?  Can I cut another pill in half and take it with my regular meds to get it back down?  They didnt offer the Thyroglobulin along with the TSH and its not one they offer for the discounted price and now Im super worried that it being so high for so long with allow the cx to grow back.  I have an entire bottle of old dosage meds (not expired) which i could take as my new endo i got last year decreased my dose by half..

Like I said I am without insurance right now and my endo wont make any changes to meds without seeing me....

[Barb135]

You need to get Free 4 and Free T3 tested also because TSH alone should never be used to determine dosages for thyroid hormones.

There are online sites from which you can order Ft4, FT3 and TSH for less than $100... This will help determine what really going on.  Let me know if you're interested in any of the available sites.

I'm getting ready to go in for an appointment, but there is also more information I can give you.

[sylance9]

ok ill look into getting those tested too.  Its so god awful expensive to get anything done without insurance ugh.  Hopefully Ill get a job soon.

[Barb135]

One of the online sites I've used a couple of times is healthcheckusa.com... the last time I looked it $85 for Free T4, Free T3 and TSH.  All you do it go online, order the tests (for which you pay with a credit/debit card), they send you a lab order and tell you which lab to go to (typically it's LabCorp).  Once you have the lab draw, they e-mail you the results, then you can go from there to determine your dosage, depending on all the results, along with your symptoms.  

Do you know why your endo decreased your dosage so much?  Were you having symptoms of being over-medicated?  You said you've had normal tests since then - what tests have been done?  How long were you on the reduced dosage?

[Gracevd70]

hello
How much Levo are you taking (Before) you stopped taking it? Are you back on the same dose now and did Hospital doctor give you a new script?  

You should not stop your medication as you are well aware and certainly not after having Thyroidectomy for Pap Cancer (me too) Levo and Synthyroid are pretty cheap although Endos are not do you have a primary care physician you can go to or do you have and Urgent Care asumming your in U.S. that you can go to?  

You High TSH shows you are or was severely hypo and it's my understanding from(endo) high TSH could indicate you have thyroid tissues left behind after removal in your case it could be that you decided to stop your meds...you can never stop your meds.

Grace

[sylance9]

I am unsure what in my OP lead you to believe I stopped taking my meds.  I never said I did...  

I was originally on 175mg Levo for a 2 years and my last endo (I had moved) lowered my dose to 125 mg.  Ive had normal tests since then.  But now im super duper hypo...

[sylance9]

Also, having high TSH doesnt indicated thyroid tissue is left behind, you shouldnt be telling people that.  Your pituitary produces and releases TSH, not thyroid tissue.    The only test that can indicate whether I have thyroid  tissue left behind would be Thyroglobulin which I cant do at this time.

[Gracevd70]

My bad I miss read your post.  Oh yeah I'm not telling anyone that TSH being high is indication of tissues left behind (One of my Endos)told me that...see easy to miss read...great to be human huh.