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...
I am reposting this from an earlier post as I did receive my labs today and am totally clueless now. Labs at end of post :)
Ugh, I'm so exhausted from this Graves Journey! Someone help me out here please!!! I've been feeling pretty good for awhile now until last week. My last labs were done in December just before Christmas... and for some reason, I can't seem to locate the labs. but I believe this is what it read, T3, Free 473 (range 230-420)
T4, Free 1.18 (range 0.8-1.8). In an effort to possibly bring my T3 down, I had my endo prescribe a low dose of propranolol again and he told me to just take it as needed... well, i never needed it until now... :( Last week on Monday, Jan. 4, I had a cyst removed (it was a minor outpatient surgical procedure) and ever since then, i haven't felt right. Something has gone wrong!!! I have had to take my propranolol at least ONCE every day since and sometimes TWICE a day. I take a really dose of only 5 mg and this seems to work to bring my heartrate back into range (usually 60's or 70's)... it seems like out of nowhere, no matter what im doing... sleeping, walking, going to the bathroom, whatever it is... my heartrate will suddenly spike to the high 90's. I will suddenly feel like I just finished running around the block. Everytime this happens, I check my blood pressure and heartrate. My blood pressure always seems low (100/50) but my heartrate will be high. What in the world could be causing this??? I've been really really tired the last week, sleeping almost 18 hours a day off and on, maybe even more than that, I'm lacking energy, and at times I feel like my anxiety is back with a vengenance. WHY? Any advice would be GREATLY APPRECIATED! I am desperate here... I did do labs again yesterday at the request of my endo so I'll know tomorrow where my levels are. Thanks so much to everyone!
Okay, labs from December 17, 2009:
Free T3, 503 range 230-420
Free T4, 1.3 range 0.8-1.8
Took 37.5 mg of PTU daily in divided doses of 12.5 mg at 9 am daily and 25 mg at 6 pm daily. Felt the best I'd felt since this journey began.
Labs yesterday January 12, 2010:
Free T3, 438 range 230-420
Free T4, 1.1 range 0.8-1.8
No changes in meds yet. However, have been taking beta blocker, propranolol 5mg once daily for the last week (due to heart palpitations and racing heartrate).
Ugh, I'm so exhausted from this Graves Journey! Someone help me out here please!!! I've been feeling pretty good for awhile now until last week. My last labs were done in December just before Christmas... and for some reason, I can't seem to locate the labs. but I believe this is what it read, T3, Free 473 (range 230-420)
T4, Free 1.18 (range 0.8-1.8). In an effort to possibly bring my T3 down, I had my endo prescribe a low dose of propranolol again and he told me to just take it as needed... well, i never needed it until now... :( Last week on Monday, Jan. 4, I had a cyst removed (it was a minor outpatient surgical procedure) and ever since then, i haven't felt right. Something has gone wrong!!! I have had to take my propranolol at least ONCE every day since and sometimes TWICE a day. I take a really dose of only 5 mg and this seems to work to bring my heartrate back into range (usually 60's or 70's)... it seems like out of nowhere, no matter what im doing... sleeping, walking, going to the bathroom, whatever it is... my heartrate will suddenly spike to the high 90's. I will suddenly feel like I just finished running around the block. Everytime this happens, I check my blood pressure and heartrate. My blood pressure always seems low (100/50) but my heartrate will be high. What in the world could be causing this??? I've been really really tired the last week, sleeping almost 18 hours a day off and on, maybe even more than that, I'm lacking energy, and at times I feel like my anxiety is back with a vengenance. WHY? Any advice would be GREATLY APPRECIATED! I am desperate here... I did do labs again yesterday at the request of my endo so I'll know tomorrow where my levels are. Thanks so much to everyone!
Okay, labs from December 17, 2009:
Free T3, 503 range 230-420
Free T4, 1.3 range 0.8-1.8
Took 37.5 mg of PTU daily in divided doses of 12.5 mg at 9 am daily and 25 mg at 6 pm daily. Felt the best I'd felt since this journey began.
Labs yesterday January 12, 2010:
Free T3, 438 range 230-420
Free T4, 1.1 range 0.8-1.8
No changes in meds yet. However, have been taking beta blocker, propranolol 5mg once daily for the last week (due to heart palpitations and racing heartrate).
You are a perfect candidate for Block and Replace.
Your FreeT4 is even lower and I'm sure too low for your body's needs - most peeps do not feel well with a level that low.
Most peeps feel best at mid-range FT4 which, based upon your lab's ranges would be 1.3. Many peeps feel best in the upper third of the ranges.
So, the fact that you have hyPO symptoms tells me that your FT4 is too low for you.
Now, you are still dealing with an elevated FreeT3. Yes, it's better than it was in December but it's still high.
Ideally, both the FreeT4 and FreeT3 would be at midrange.
For example, my FreeT4 is 1.36 range .82-1.77 and my FreeT3 is
3.6 range 2.0-4.4 I feel awesome! (not trying to make you feel badly - just trying to make a point :)
Since your FreeT3 is elevated, a beta-blocker would normally help lower it .
(to get "technical", beta-blockers not only address cardiac issues such as elevated heart rate but they also affect what is called the T4/T3 conversion - nothing for you to concern yourself with, really, but just so you understand they can affect your FreeT3 level by lowering it)
Since the beta-blocker is having the undesirable effect of also lowering your BP, it is not appropriate for you. This is not uncommon, by the way.
As I told you in your previous post, it makes sense to take your PTU which will lower down both the FreeT4 & FreeT3 levels AND also take a T4 med like Synthroid which will raise your FreeT4 level.
Elaine Moore would be the one to contact re appropriate doses of each. Why don't you register on her website and submit a question to her about this?
http://elaine-moore.com/QA/tabid/57/forumid/6/scope/threads/Default.aspx
Summarize your entire history (took off meds last March, thyroid storm, etc.) and then give her your recent lab, meds dose and symptoms history as you've done here.
Don't worry about the length of your post - some of us have posted mini-novels for her :)
The more details you give her, the better quality answer you can expect.
Please keep us posted.
All the best,
Carol
Our FreeT3 levels can fluctuate a lot more than our FreeT4 levels....that's why we go by the FT4 level for ATD dosing purposes.
Palps can occur when hyPER or hyPO - maybe you didn't "feel" your FreeT3 elevation in December because your FreeT4 level was at a good place for you.
Now that your FreeT4 level is lower, you're probably feeling a "double-whammy" :(
Also, when I was hyPO, I'd have some weird heart stuff - kinda hard to describe but, sometimes my heart would feel like it was beating SO hard - other times, it felt like it was flip-flopping in my chest.
It is absolutely amazing to me just what out-of-whack thyroid hormone levels can do to a person.
Please, share your story with Elaine Moore - I think she'll get you on the right track.
You know, thyroid forum peeps helped me get where I am today - in remission after taking ATD's for 27 months.
I've always had the need to give back and, considering the fact that thyroid forum peeps helped me SO much, I figured my efforts "giving back" would be well-spent here.
I remembered you having thyroid storm but, sorry to say, I got you mixed up in my mind with another member on here - she was taken off meds in March 2009 (don't know if it was done 'right")
and had thyroid storm maybe over the summer.
Happy for you that you have a good endo although in reading some of your other posts, glad you didn't let him "get away" with waiting 3 months for labs.
I think working towards remission is a worthwhile endeavor. Truly, Graves' is a self-limiting disease - it runs it's course and then often goes into remission.
I'm sure you've "heard" me say it takes, on average, 2-4 years on ATD's to achieve remission. This is a direct quote from Elaine Moore, who's words are based upon YEARS of research.
I, too, have researched extensively but only since my Dx in June 2007. Everything Elaine tells peeps has been confirmed in my research so I trust her judgment immensely.
She has been my guiding light throughout my Graves' journey - I'm sure you've noticed my posts on her forum :)
I think most peeps have a chance at remission (80-90% is a pretty good percentage, doncha think? ;)
It all boils down to taking the right dose of meds while maintaining your "best place FT4" and then lowering the dose as becomes necessary to maintain that "best place FT4" until you find you no longer need meds.
Peeps that go into remission wind up taking 1.25mg meth or 12.5mg PTU every day or every other day at the end of their journey and before they stop meds.....that's what I did and it worked!
Elaine will help with the "finetuning" some of us need but, remission is entirely possible for most of us - what a wonderful thing to look forward to - huh?
Please keep us posted - OK?
(((hugs))) Carol
http://www.dailystrength.org/groups/graves-disease-general-info/discussions/messages/8391589
{{{big hugs}} and hope you feel better soon from the small surgery you had recently.
I really think you should try BRT.
I am as anxious as you are to see what Elaine says - I believe she's recommended 50mg PTU taken in conjunction with 50mg levothyroxine (which is generic T4) but please do not go by my memory on this one.
See what she and your doc say.
I don't know if an anti-anxiety med like Xanax might be helpful now until the T4 "sinks in" - I believe it takes a few weeks to feel the effects but, I know others have mentioned feeling some relief eariler.
All questions for your doc.
Thanks for the compliments - ya made me blush. My knowledge came as a result of my research and participation on forums....I wish I stopped second-guessing myself at certain times during my treatment 'cuz I would have felt much better. Hindsight is truly 20/20