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can someone help me please?

wolfclantree's picture
Posts: 7
Joined: Feb 2003

hello i havent posted in awhile.
i just got back from my endo today.
and i just dont no what to do anymore?

i had a partial removal of thyroid in jan of 2003
had papillary carcinoma but my findings are 1.7 mm
so what is the mm compared to 1 cm?

i was once in a cancer place and they where treating me and i was going to get the rai done
and my ins changed so i had to just go to a endo
well my endo goes to a site called nccn and looks up things on me for my treatment.

she says now for the past 2 years now i need no scans no treatment other than to suppress me
i take 112mcg of synthroid

i have had the second surgery in jun 2003 to remove the other half due to a tumour but showed no cancer on that side

now i have lymph node problems in my neck and throat very soar and swollen all the time
and im very sick all the time
since jan of 2003
they did a surgery on my in may of 2004
to remove 2 lymph nodes and they had no cancer but they show something is wrong but they do not no what

i went today to the endo my levels
are this ft4 is 1.3
my tsh is 0.13

is that ok?
i have had so many diff levels its unreal!
i am about to go off my rocker lol
im so tired and feel like i have the flue all the time
i hurt its unreal how i feel
and i told her today how i feel and she just nods her head and says nothing!
i ask how come i dont feel good
i thought after surgery and meds i would get back to normal
she never answered me
is anyone in here having the same problems and does anyone in here have a small or smaller than 1cm cancer ?

what did they do for you?
sorry if i am jumpin around here i just am really upset right now
hope someone in here can help me
thanks so much

Posts: 15
Joined: Jul 2004

I'm sorry your feeling so frustrated because you are not getting answers. RAI is usually used in those who have cancer bigger then 1cm. Although personally I think they should do it anyways just to get rid of the remaining tissue so that TG is more reliable. What are your ranges for these lab results? Also did they check your T3? This could be your cause of not feeling well. Some of us do not convert enough T3 so if they add cytomel to your regular thyroid meds this usually helps. Take care

wolfclantree's picture
Posts: 7
Joined: Feb 2003

hi thanks for the response sorry long in te return
my levels are in the post above .
i dont think they check my t3 what is the t3?

Posts: 38
Joined: Oct 2003

Hi Shell,I am a patient for 16 years. I also had a partial thyroidectomy in 1988. And I was diagnosed with papillary carcimoma at the age of 18.Honestly I would go for a second opinion because. When I was diagnosed I then went for the scan and then the RAI treatment and after I had a scan done every year and a thyroglobulin every 6 months.I needed another treatment in 1994 and then all my scans came back negative for 5yrs in a row so my endo decided to change them to every 5yrs I asked if that wasn't too long he said no that with the thyroglobulin every 6 months was enough. I did as he told me and last yr I had to go for my body scan and it came back positive so I needed another treatment last yr. I don't know about not getting checked I talk to you for what happend to me. I take 300mgs of Synthroid. You should take calcium that also helps and you probable need a higher dose and that is probably why you still feel not in place. And about your neck I think it is normal to still be sore remember on the outside it can look nice and healed but in the inside it is still healing. If you want you can write me at
Please let me know what goes on with you
Take care, Cherrie

Posts: 3
Joined: Aug 2004

Hello Shell, my husband had his entire thyroid removed in April of '04, he had the same cancer as you but his was the size of a tennis ball. He then had internal radiation treatment and now is having external radiation. The docs say they will monitor it closely for 5 years. Also he had 14 lymph nodes removed and 11 had cancer. It is very scary but all the docs keep saying not to worry that this is easily cured. Please get another opinion. It will make you feel better. He takes 224 mcg of synthroid.
Hope this helps.

Posts: 10
Joined: Sep 2004

Hi Shell, My name is Butch, and I've been fighting Papillary thyroid cancer for 5yrs. now! From what you've said I agree that a second opinion should be gotten!! I had two, The first dr. said no problem we can kill it with a round or two of radiation, The second said no way, you need surgery now...It's been 5yrs. 6 surgeries, and 2 rounds of radiation and I'm still fighting it!!! If you feel that your not being treated aggressively enough (and you need to be!!) Please get a second opnion...As far as all the numbers go, I don't know mine I can never remember things like that, But I have a great Endo at the James at Ohio State. And I trust him totaly! I had a total thyroidectomy and am on 200mcg of synthroid...I have also never felt quite the same. I just don't think it can exactly replace what you've lost!!
But please get a second opinion,DON'T worry about hurting feelings, and do what's right for you! This is a very treatable disease if you have the right Drs. If you would like to talk you can e-mail me at mdolphin13@alltel.net
Good luck to you..... Butch

Posts: 6
Joined: Oct 2004

you need to get a second opinion right now!

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