No RAI! Synthroid initial dose - 125mcg - does this sound right?

[KJ5854]

I am two weeks out from total thyroidectomy due to cancer suspicion and Hashimoto's.  I posted elsewhere that my cancer was small, less than half a centimeter, it was contained in the thryoid and there wasn't blood vessel invasion.  Nothing found in lymph nodes.  I met today with my endocronologist and she advised against doing the RAI because she felt the risks of RAI outweighed the benefits.  I am 39 and she said my chance of recurrance was 5%.  I posted my question about RAI to Dr. Lupo and he also didn't advise RAI.  He said it's standard for cancers 1.5 cm or larger.  

Anyway, my endo started me on an initial dose of Synthroid at 125 mcg.  Does this sound right?  I'm 5'4" and weigh 153.  I've never taken any thryoid med in my life so I'm a little nervous to take anything.  I see others on the board that are only taking 75 mcg or 100 mcg.  However, maybe they still have part of their thyroid.  

Also, my endo stated she wants to get and keep my TSH at .4.  Is that standard?

Any info you can give me is appreciated!

[redhed87]

Well, actually, I am pushing a size 8 now!! I have to take off a few lbs. before going off my meds.

[Justin1967]

125mcg sounds fine to me.. I think was put on a initial dose of 100mcg.. Then I was bumped up to 200 and 150mcg doses after a month

If your endo recommends you don't do RAI then I would seriously take her advice..
I had a really hard time convincing myself that RAI is really worth it.. I mean who really wants to pump radioactive material into their body.. It is the combination of going seriously  hypothyroid ( like TSH of 67) and RAI that takes a biggest toll on your body.

There is my 2 cents worth

[KJ5854]

I do recall my endo saying that she would monitor thyroglobuin levels.  In fact, I have the order for the blood test and this is what she's testing.  Is this everything that needs tested?

TSH
Free T4
Thyroglobin
Calcium

I don't have this blood test though for another four weeks.  Are you saying I need one now to use as a comparison?  Also, what is a good level for Tg to be for someone who has their thyroid out and is monitoring to ensure there is no cancer recurrance?

Thanks!

[utahmomma]

The reason I had the other half out was within 12 months three of my sisters also decided to get cancer too (copy cats), the other one had precacner, and the daughter had precancer too . . all within a year.   I knew it was just a matter of time before the other half went south on me.  Good thing I did too or I couldn't have had RAI for the recurrence.

[ChitChatNine]

I am 5'10 ............ you are size 6 ?!!!!

In my case your fogot a digit as in "16" or 16W lately .. shhhh, did I say that?   I am medium/large frame and extra pudge... :)

C~

[redhed87]

Everyone is different- I am 5'10", but have a small frame- I'm a size 6 and I am on 250mcg of synthroid.  It took me 7 months to get to a supressed level.  The dr. was so surprised at how high my synthroid was getting, but like I said, everyone is different.

[ChitChatNine]

Sounds similar to me ... I was as high as 100mcgs with TSH of .0667 but couldn't tolerate side effects so dropped to 88 with TSH of 1.5.  I had two tiny ones and still have 3mm on intact side.  I have other half in so maybe that is why 88 does the trick as you mentioned?

YOU ALWAYS HAVE THE choice to do the RAI if you change your mind or something changes it.  That is what is nice.

And, the 5% recurrence rate means it would recur as the ones presented I assume? And, if so, they are the type that can remain there and never be found from what I understand .. but yours is follicular right? With follicuar variant I'm not sure .. that statement goes for pap microcarcinomas that are encapsulated.  Even though mine are encapsulated I wonder how did 2 get there?

C~

[ChitChatNine]

What started to change that made you have your other side out? Growth? Did you have the other side FNA'd?

C~

[utahmomma]

Your Synthroid dose sounds about right.  It will have to be tweaked - they all do.  With cancer your usual TSH goal is .1 or lower but .4 isn't too bad.  Please ask your endo to also run a thyroglobulin test to establish your "marker" level.   Thyroglobulin (or we call it Tg) is pretty useless for those with thyroids but after you've had yours removed for cancer it's a key marker that needs to be monitored every 6 months or so.  This is how (combined with an increasing TSH despite stable meds) it can be established if your cancer has recurred.

With the size of your cancer and where it was contained the protocol is to monitor and not to do RAI.  That's very commonly done.  Mine was only 5mm and I stayed stable for three years.   I was one of the 5% and had to have RAI but the recurrence was caught very quickly because of the Tg and TSH monitoring.

Sounds like you are on the right track to getting on with your life and health.

Congratulations of getting it out and being so proactive!

Utahmomma
papillary carcinoma '03
RAI '06