"normal" tests, hypothyroidism symptoms?

[kimchem]

I had a TT in October '07 due to papillary thyroid carcinoma.  I am 40 yo, the nodule was 12mm, there were no apparent metatheses at all, and I underwent radioactive iodine treatment afterward.  The endo put me on 125mcg synthroid and up to 75mcg cytomel after the final scan.  I then tapered off the cytomel.  While on the cytomel, I felt "normal" meaning I had no symptoms either hyper or hypo and I never felt a rush from taking the cytomel.  As I came off the cytomel, my hypo symptoms returned--weight gain of 7 pounds in two weeks, constipation, heaviness in my legs, low BP, dry hair, etc.  Blood work was done--TSH was 0.03 (too low, the endo wants it 0.1-0.5) and the fT4 was about  mid-normal range for the lab.  The endo's PA cut my synthroid dose (116mcg) and claims that if the TSH number is where they want and I still have symptoms, they obviously aren't being caused by a thyroid hormone issue.  I know I'm not the only one who has experienced this.  What is going on and is there a way to feel good again?  The PA was adamant that they do not prescribe cytomel.  Also, despite living in a fairly large community, there are only two endos in the entire area.  I would greatly appreciate any advice you can provide.  Thanks!

[AR-10]

When was the last time your Free T3 was checked?

If your Endo's PA would have pulled your charts up on her computer, she would have seen your record of cytomel ingestion, wouldn't she? She sounds like an idiot.

Call them, tell them you feel like cr@p, and they need to find out why, not brush you off.

If you want to get technical about it, your TSH doesn't mean squat. It is your FreeT4 and Free T3 that feeds your body. Your TSH just controls how much your thyroid (which is gone) produces. At this point it is nothing but an indicator, not an initiator.

Become a pain in the butt.
Insist on Free T4 AND Free T3 testing six weeks after the last med change. Which is what they should have already told you to do.  

[pep88]

I have been on cytomel ever since I had my TT for cancer in September '07, just a month b4 you.  Right after the TT, I was on cytomel only, then post RAI, both cytomel and levothyroxine.  You don't say why you "tapered off" the cytomel, which is interesting.  

I actually asked my endo to get off of the cytomel and just up the levothyroxine.  He had wanted me to take half a 25mcg table in the morning and half in the early afternoon.  Me being such a "pill person", I always screwed that up,  We decided that I would try taking it all the morning and that has been working fine for me.  I said a lot of this in this thread earlier today: http://www.medhelp.org/posts/show/469406 ;  My point is that some of us can metabolize and make t3 from t4, others can't and need help from Cytomel.  If you felt better on Cytomel, tell your doctor and bypass the PA altogether.  She apparently doesn't know what she's talking about!

[kimchem]

Thanks so much for the reply!  It's nice to feel such support here.  The PA did know that I had been on cytomel.  The endo's philosophy is to use cytomel and synthroid after the RAI to bring you back to feeling well more quickly.  After that, she wants you off the cytomel.  I know that at the end of January (the last time blood work was done), T3 was not measured, only FT4 and TSH.  The PA gave me the order for the next round of blood work which is to be done in another five weeks (eight weeks from the  med dose change).  That order includes TF3 plus the other two.  I'm curious to see what that number says.  My fear in becoming too much of a pain in the butt is that she dumps me as a patient and I end up with no good alternatives.  I live outside Colorado Springs.  Although large, there is literally only one other endo in this area.  The closest ones from here are Denver and the wait list is 3-4 months.  Anyway, I appreciate your advice and support!

Kim

[kimchem]

I very much appreciate your response.  It sounds like we are pretty close to the same place in all of this.  My endo took me off the cytomel because it is short acting and the levels can be unstable.  She  never offered me an alternative and at the time, I didn't think it would be an issue.  Honestly, I never felt the ups and downs that some people do taking cytomel.  So, I guess my question now is how do I go about convincing her that cytomel isn't such a bad thing to prescribe for me?  Is there research somewhere showing that some people don't convert T4 to T3 efficiently enough?  Is FT3 an accurate way to determine if this is a problem or can it be inaccurate as well?  My endo is fairly young (mid-30s, practicing on her own for about 5 years).  I feel like I would have a better shot at convincing her if I had some scientific evidence to back it up.  I've tried looking without much success.  It seems like most recent research says that adding T3 doesn't impact how a patient feels.  Thanks again for all your help and advice!

Kim

[pep88]

You don't have a registered name that I can send you a message at to tell you to re-ask the question, so I'm bumping this to the top for others to see and give their input.  I went to my particular endo because he's "been around the block" so to speak.  I was told that he older (more experience), open-minded, and has seen many people respond many different ways to different thyroid meds. Basically whatever it took to get people feeling better.  I have a girlfriend who just has hypothyroidism and she recommended him to me.  She said he is the only one who does some sort of special test (not well versed enough yet with the thyroid-speak and don't remember the name of the test to recommend it to you, sorry) to diagnose your ability to convert t4.  She is on Cytomel prescribed by him.  I would just speak frankly to your endo and convey what you've read and how you feel and felt when you were on the cytomel and how you feel now that your off of it.  If anyone has anything else a bit more specific to add, I'd appreciate it