[NLBatten]

#1059106

Quick background – DX 2/21/12; RAI 2/24/12. 4 weeks post RAI TSH was still <.008; Free T4 1.73 (within normal range); Total T3 142.50 (within normal range). 3 weeks later not feeling great so asked for labs to be redone and got TSH 7.8; Free T4 - 0.44 (low); Total T3 - 39 (low). I started on 150 mcg Synthroid (brand name) and just had my first post-Synthroid labs today.... TSH 1.733 (range .3 – 5.1)
Free T4 – 1.56 (range .73 – 1.95)
Total T3 – 87.52 (range 90 – 200)

She said don’t change meds. Come back for lab only visit in 3 months.

Here are my questions: I still don’t feel well. I am losing a LOT of hair, still fatigued and still have joint pain. Will these things continue to improve even though my numbers are now “normal” (except slightly low T3) or is this it – the best I am going to feel? Will the T3 keep improving? Is it worth it to ask the dr these questions or is this just part of the normal process and I need to patiently wait another 3 months before starting to investigate if I should / can adjust the dose or different med?

Not panicked here – just trying to understand. The hair loss thing probably scares me the most. It is drastic.

As always, apprecaite all of your insight / advice.

[Bobbi]

#1172197

Your hair issues are due to the recent change from hyper to hypo and back. It will normalize. There was one period of time when my hair was shedding as badly as my collies’ fur. I have lots of hair, so it never was very visible to others (other than the clumps lying about). Some folks with less thick hair notice the thinning more. But it typically goes back to normal rather quickly once we are no longer on a hormonal roller coaster.

We all expect that once we get to normal levels of thyroid hormone we will rather instantly feel well again. We are typically disappointed. It takes time — weeks or sometimes months — AT normal levels of thyroid hormone for our bodies to heal. Try to think about things as if you have just experienced an internal hurricane. The winds are gone, thank goodness. Now it’s time to rebuild your “house.” And, once you start trying to regain your activity levels, or especially exercise levels, remind yourself to take baby steps at first, to test things out. If you try to do too much, too soon, before the muscles have regained strength, you can strain them. Or tire easier than you think might be appropriate, and get discouraged. Recovery is a process.

[ncpatches]

#1172198

Bobbi, have to say, I appreciate the way you explain things, it really helps newbees!

NLBatten, I think I replied to your concern about hair too, mine is a disaster, but hang in there, I hear it gets better once our numbers are stable for an extended period of time. If not, I’m gonna shave mine!
HUGZ!

[Darcy43]

#1172200

Absolutely, it does get better but it takes a while. For me it seemed like forever – almost 12 full months before my hair stop shedding. But it has stopped (thus far as I posted the other day). Yes, like Bobbi said it is the balancing or lack thereof that makes the hair go kray kray. It takes time to rebuild the house (I like the phrase). As insane as this sounds, try not to worry too much (as if that is possible) because unfortunately stress causes more hair shedding and amps the symptoms of our illness. I am now doing yoga and just telling folks to “bug off”. I have new lab to get in 8 weeks and I am being extremely optimistic. The last test was really good and my Endo seemed really pleased. Hang in there, it does get better (the hair thing) but it takes time. Hopefully by Christmas, things will definitely be better (and the way this year is flying buy Christmas will be here before you know it. It is already June!)

Hugs.

[adenure]

#1172201

My endo won’t test my T3 after my surgery. He only ordered TSH & Free T4; he said it won’t make a difference w/ my dose. I asked if he could order the T3 to see how my body is converting the Synthroid (when I start it), but he said no. Is that okay? Not that I have much of a choice; I can’t go to another endo. bc it’s Kaiser. Maybe another endo in the same office, but probably not- you kind of get who you get. He’s been pretty good so far, so maybe the T3 doesn’t matter- but I wondered. What do you think? Thanks

Alexis

NLBatten: I noticed your T3 is low- is your endo willing to prescribe a T3 (I think Cytomel? or Armor or the natural stuff?) Is that a good idea, or does the body eventually “catch up” with the T3? Any info. on that would be great, as I am curious going into surgery.

[Kimberly]

#1172199

Hello – Oddly enough, the guidelines from the American Thyroid Association and American Association of Clinical Endocrinologists only recommend TSH testing post-surgery, whereas they recommend relying on T4 following treatment with Anti-thyroid drugs or RAI.

If it would give you some peace of mind, though, I don’t see why your doctor can’t go ahead and test your Free T4 and T3 as well.

If your doc uses one of the old-fashioned lab slips where you circle the appropriate tests (as opposed to a computer printout) you can actually add the extra tests yourself.

[adenure]

#1172202

Hee hee! I can’t – bummer! Kaiser does everything electronically. It’s nice in that I get to see my labs online very quickly, but I can’t tweak anything.

Alexis

[NLBatten]

#1172203

Alexis – I am not sure if she will prescribe T3/Cytomel or not. Right now, she just said wait 3 months and we will check it again. It was only 6 weeks from the time I started Synthroid so hopefully it will improve by the next test. I have my eye on a new dr in town if I don’t feel like this dr responds on the next test. She is “lab only” dr except face to face visit once per year. Not sure how I feel about that yet. It is convenient and cheaper but it concerns me that she saw me once since RAI and doesn’t intend to see me until 12 months later. Suppose as long as I am paying attention to my symptoms and can contact her if needed, it will be ok.

Nancy

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