Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hello to my wonderful support group. Without you thru this journey, where would I be? Probably a lost soul with Graves :) So, we just moved from the Desert to the Coast.... Went from dry to humid. I had the best endo who was very compassionate and understanding and thought I'd never find another after moving. Well, after one visit to our town endo (it's a small town with only one endo), I can understand when you say to RUN when the endo recommends this or that. I've been steady on PTU since my storm last August with a bump or hiccup here and there but pretty steady.... and now am down to 25 mg daily (divided) so why would you want to change that!??? The first endo I saw here (the only one here) didn't ask me how I was feeling, what my last labs looked like, etc.... just asked about my meds.... I'm on PTU 25 MG daily and Propranolol 10 mg, twice daily. He right away insisted I stop the propranolol as it doesn't do anything for my thyroid (his words) and that I stop PTU and switch to Tapazole! ABSOLUTELY NOT! I wanted to RUN out of there. But being as nice as I can be, I sat there and listened him to talk about some book, etc... and decided I just would NEVER return. He'd only ever treated 3 patients with thyroid storm in his 28 years and seemed clueless to it so I'm thinking that he witnessed it during his rotations.... possibly? Anyway, That was ENDO #1 here in my new town... My wonderful neighbor happen to have a thyroid issue and had her thyroid removed and recommended her endo so I decided to give it a try (24 miles away in another town).... and ENDO #2 is AWESOME. She has a thyroid issue herself, listened, asked questions, reviewed my labs, asked for my records, was compassionate, was thorough, and seemed to take off right where my endo in our old town left off.... WONDERFUL! I have to say that I am blessed to be able to find an ENDO in two tries. I hear stories of going thru several before finding the one. All I can say is that my prayer was answered. I about cried tears when I thought I wouldn't find a good Endo here and I've been doing so much better. Anyhow, here my last two labs...
Stayed on PTU at 37.5 mg daily (twice daily divided) and propranolol 10 mg twice daily.
4/26/2010 Labs:
Free T4: 0.9 (range 0.8-1.8)
Free T3: 342 (range 230-420)
TSH: 0.01 (range 0.4-???)
PTU lowered to 25 mg daily (divided doses- 12.5 mg twice daily) and propranolol 10 mg twice daily.
5/20/2010 Labs via LabCorb (all previous labs by Quest except ER Labs)
Free T4: 0.97 (range 0.82-1.77)
Free T3: 3.3 (range 2.0-4.4)
Bumps (may be bug bites) all over body- stopped taking PTU in am for a week (so took 12.5 mg daily for 5 days), back to PTU 12.5 mg twice daily. Lowered propranolol to 5 mg in AM and 10 mg in PM due to chest pains and lowered heart rate dropping into low 50s (chest pains subsided). Feeling better after a week of this change.
New ENDO #2 said to just leave everything as is and to lab again in 6 weeks. I asked about remission and she said that it's only achieved in 20 to 30 percent of patients... I am praying and hoping for a miracle here! I told her I wouldn't give up and I want to stay on my PTU. She said she supports my decision but told me she has a 3 strikes rule.... I haven't had any yet (Thank God). She said after 3 times of having to increase the PTU or going into remission but relapsing, she recommends RAI as a first choice, Surgery as a second choice. I am happy with my new ENDO.
Oh! Also, look at my labs on 4/26.... my TSH has made an appearance! Woo hoo! It has always been severely suppressed at
Stayed on PTU at 37.5 mg daily (twice daily divided) and propranolol 10 mg twice daily.
4/26/2010 Labs:
Free T4: 0.9 (range 0.8-1.8)
Free T3: 342 (range 230-420)
TSH: 0.01 (range 0.4-???)
PTU lowered to 25 mg daily (divided doses- 12.5 mg twice daily) and propranolol 10 mg twice daily.
5/20/2010 Labs via LabCorb (all previous labs by Quest except ER Labs)
Free T4: 0.97 (range 0.82-1.77)
Free T3: 3.3 (range 2.0-4.4)
Bumps (may be bug bites) all over body- stopped taking PTU in am for a week (so took 12.5 mg daily for 5 days), back to PTU 12.5 mg twice daily. Lowered propranolol to 5 mg in AM and 10 mg in PM due to chest pains and lowered heart rate dropping into low 50s (chest pains subsided). Feeling better after a week of this change.
New ENDO #2 said to just leave everything as is and to lab again in 6 weeks. I asked about remission and she said that it's only achieved in 20 to 30 percent of patients... I am praying and hoping for a miracle here! I told her I wouldn't give up and I want to stay on my PTU. She said she supports my decision but told me she has a 3 strikes rule.... I haven't had any yet (Thank God). She said after 3 times of having to increase the PTU or going into remission but relapsing, she recommends RAI as a first choice, Surgery as a second choice. I am happy with my new ENDO.
Oh! Also, look at my labs on 4/26.... my TSH has made an appearance! Woo hoo! It has always been severely suppressed at
You might want to look into working with your PTU doses and get that Free T4 up at mid ranges. At this point you're very low.
Gee, Endo #1 sounds creepy. Let's see how this Endo #2 does...still just a bit too early in the game to know for sure.
Thanks for letting us know how it's going for you.
{{{hugs}}} :-)
25mg with a few days of 12.5mg "brought you" to your most recent labs.
Staying with 25mg will either maintain your current levels or reduce them further.
Whenever our FT4 is lower than mid-range, it's time for a dose decrease.
It's better to be proactive with dose decreases and make them as described above......rather than be reactive and suffering from hypo symptoms before reducing the dose.
Please realize that the longer your thyroid hormone levels are too low for your body's needs, the more stress this puts on your body as it tries to normalize.
This can cause an increase in antibodies - the whole reason you got sick in the first place.
Let's get some time under the belt to see just how good endo #2 is.....while she does sound better than #1, it doesn't seem like she's dosin you properly.
And, the 3 strikes rule truly doesn't make sense.
Trading off taking ATD's for a limited amount of time or perhaps several different times if relapse occurs makes a lot more sense than removing the vital thyroid and trying to replicate its function by taking thyroid hormone replacement for the rest of your life.
Remember, your thyroid is the victim of your disease - not the cause.
Would you remove your eyes if you developed TED?