[SueAndHerZoo]

#1060538

I had a routine follow up with my endo today. Since my TT July 2013 we have been trying to get my TSH up to an acceptable level but I’ve never gotten it higher than .04 before (normal range is .4 – 4.5). Today (hurray!) I’m all the way up to .10! My Free T4 went down from 1.5 to 1.3 (normal range is .8 to 1..

I was very excited that this last dose change FINALLY got my TSH moving up a little and we have our plan to take down my Levothyroxine again and check the levels in 6 weeks and 12 weeks from now. But he said that from now on we will only be checking TSH, NOT Free T4. I asked why and he said that we no longer need to track the Free T4 and that TSH is the industry standard, etc. etc. etc. I said, but aren’t you afraid that as we continue to get my TSH up that my Free T4 might get too low? He gave me some answer (talks very fast and talks a LOT) about the ratio of TSH raising and Free T4 falling is something like a 50 to 1 ratio? Don’t remember the exact terms he used but I remember the 50 to 1 part.

Anyone else ever heard of this? I guess that means we’ll know what my Free T4 is by watching the TSH climb and applying the ratio rule?

Sue

[Raspberry]

#1183192

Hey Sue! How’ve ya been? I would be tempted to ask him whether he finds this TSH/FT4 ratio applies in the same way to Graves and non-Graves patients. TSH does some funky things with us Gravesters. The most I’ve heard about a ratio is that TSH moves logarithmically in relation to FT4 and FT3. I’d say let your symptoms be your guide and if you begin to feel hypo insist on a raise or complete tests. Me, I’m feeling pretty off lately because of other life events but I am finally off the methimazole – I don’t call it remission because I know it’s a tricky business but I have cautious hope.

[SueAndHerZoo]

#1183193

Hey there Ras Lady -nice to “see” you! Cautious hope – I like it, and I think every Gravester needs to find that and hang onto it if they haven’t already. Oh, and our Graves Rage, we need to hang onto that, too. Even though I probably don’t technically qualify as having Graves Rage now that I don’t have a thyroid, I still pretend I do and use it to my advantage when it’s convenient. Be afraid, co-workers…. be very afraid.

I think you should go ahead and say you’re in remission and celebrate it every minute you can. It’s like a vacation… you know it’s got to end so you better enjoy the hell out of it while it lasts!

Sorry to hear ‘life events” are disrupting things for you but I guess we should be grateful for those. After all, consider the alternative: non-life events.

I have no idea what it feels like to be at an acceptable TSH level, never mind to actually STAY at some level for more than 6 weeks so that is the light at the end of the tunnel I’m driving towards, and I’m being cautiously hopeful I’ll someday see it.

Hang in there… we’re a tough bunch of broads and we can and will get through these hurdles.
Sue

[Kimberly]

#1183194

@Sue – The relationship between T4 and TSH is complex and I don’t think it’s fully understood:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window)

http://www.ncbi.nlm.nih.gov/pubmed/23671314

If it was me, I would be aggressive in pushing for continued FT4 testing until I’d found the “sweet spot” of medication that keeps levels normal and symptoms at bay. As Raspberry said, Graves’ itself can affect TSH; one theory is that antibody activity could be responsible for this.

@Raspberry – Sorry to hear about the other personal challenges, but getting off meds is a victory!

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