Those of you on T3 through PPVI will appreciate this...
So after not taking my weekly temps and pulses for a month and a half (bad study participant!) I took them the last four weeks and finally got the courage to call them in yesterday. I don't know why, but I was scared to tell them I had slacked off. So I got it over with yesterday, and then also had the courage to ask if I'd ever get to go off of the medication. I've been on it a year and it is pretty high maintenance - as I mentioned, I have to take my temps and pulses five times a day once a week (it used to be every single day...SO glad that is over!) and I can't eat two hours before and one hour after I take it, which is twice a day.
I remember at the beginning hearing something about being on it for a while and then tapering off of it. But I guess that is not the case. The nurse called me back just now and said that as long as I think it is helping me, I should stay on it indefinitely. Forever. What?? I thought there was an end in sight! I'm definitely going to ask my doctor about this and get his opinion, but I bet he'll say the same thing. I shouldn't mess with it in case it is helping.
The problem is I have no idea if it is helping. The first six months I took it I saw no change. Nothing. Then, I started Metformin and after a few months on that I noticed a big change. My energy increased and I stopped feeling sleepy and lethargic all the time. Well, I assume that was due to the Metformin, but I guess I have no way of knowing for sure.
And to make matters worse, I started with my current doctor the day after I started the T3, so when he tested me that very day and it showed my thyroid was fine, he said it could already have been due to the T3 in my system. I guess that would be a mute point anyways, since the whole point of PPVI's study is that they think the thyroid dysfunction doesn't show up in blood work.
I know it is up to me and I can go off of it if I want. But the one thing I will say is that my basal body temperatures are pretty good and perhaps that is due to the T3. I remember that last year I had to take my BBT for several weeks to see if I qualified for PPVI's T3 study and they were pretty low at that time. Now, 97.5 is about as low as they go, and they are usually around 97.8 (pre-peak, of course).
I'm not complaining, because I swore I'd never complain about medication. I am thankful that I have something wrong with me that we can attempt to treat. That being said, I just don't want to be on something - and paying $50 a month for it - if it is not really doing anything. And, yes, I would like to be able to eat whenever I want. I admit it!
So I'm just wondering - how many of you are on T3? Do you think it's helping? And if you absolutely have to eat during the window, do you eat and still take it, or do you skip that dose? Thanks!
Tuesday, April 7, 2009
T3
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We sound very similar with not calling PPVI because of slacking off with temps. Although, this is the difference. You have continued to be strict with the not eating part, I haven't. What is my problem...I don't know. I have noticed I don't absorb the T3 as well as I used to when keeping the strict eating times. My temps. aren't nearly as high. So I really should go back to how you are doing it. Your example is so encouraging! One year of doing this, WOW! Even if I do eat I still take it although my temps do drop if I do this. Now that I am ttc again I will definitely go back to not eating around the times of taking the T3. I noticed a difference with the stuff only when I am strict about when and how I take it. I hope this helps. I really feel like I am rambling :)
ReplyDeleteT3 is something I don't understand. I can only hope and pray that I don't have thyroid issues. Its one of those "ancillary" things that I tested normal for when using mainstream guidelines, but according to Napro there could still be more investigation warranted I guess.
ReplyDeleteAs for your case, I don't know what to tell you!!! Maybe Dr. B will be able to advise you. OR maybe, you could try a cycle or two off the meds, see what happens, then if you revert back to lower temps, get back on? Or is it that simple? I don't know! I can understand your hesitation, given how far you've come.
Oh wow, I thought you only had to take that stuff a little while!!
ReplyDeleteThey want to put me on it, but I can't swallow pills at all, and we can't find any other way to get the stuff down (lol). I've been trying to train myself to swallow pills, but after 4 months of work, I can't swallow anything bigger than an M&M (and even that is a struggle).
I'm even less encouraged when I hear that it might be another long-term sort of drug.
Still, it helps with the BBT, you think?
You know, I think the T3 is helping me. To be perfectly honest, though, I'm not part of the study, and I was just terrible at taking my temperature and pulse when I was supposed to. I never do it now. And I hate the no-eating rule. I was told not to eat for a half-hour afterwards, though, not an hour, so that's a little bit easier. I sometimes forget to take mine on time, and if I need to eat (like if cooking dinner took me a lot longer than I thought, and I start eating during the no-eating window), I sometimes shift the time I take it--which I know is bad because you're supposed to always take it at the same time. I do hope I'm not on it forever, though!
ReplyDeleteOkay, I know I've talked about my dr Napro before but here is another thing he never mentioned when he put me on the T3...I didn't know I couldn't eat before or after! Criminey! After about three months of checking my temps and heart rate....dr Napro told me that I could stop...so I haven't checked in it months. hhmmm...maybe I should ask him about the eating part. I know he never mentioned that because if he did...I'd do it! I've noticed some minor changes like I go to the bathroom a little bit more regularly and I have been healthier. I don't get as sick as I have in years past. My new IF spec questioned why I was on the T3 and is going to call dr. napro to find out details. Are you also on T4? I have to take one generic synthroid in the am with the T3. Thanks for informing me of this...maybe now I'll be more careful of when I'm eating and taking this medicine. Blessings!
ReplyDeleteI forgot to add that it upsets my stomach to take the thyroid meds on an empty stomach so in the morning...I take them after I eat breakfast. Not good huh? Does food make it less effective or something?
ReplyDeleteI am currently taking it from PPVI - and I will admit, I am a slacker when it comes to time and eating before and after and turning in my monthly temps.
ReplyDeleteHowever, I will say before taking it I NEVER could wake up in the morning. I hated it bc I was so sleepy no matter how much sleep I got. Before taking T3 I would sleep until 11am on Saturday and hated getting up for work bc 7 is soooo early. However, since taking T3, family members are shocked when I show up for breakfast with the rest of the family. So being sleepy has greatly improved and I feel like I have more energy.
Reading post gives me encouragement to get back on a more timely schedule with taking it EVERY 12 hours and watching when I eat! :)
I got my T3 with my local NaPro Dr, and she only had me do the temps before going on (to see if I qualified), and then once again a few months after going on it... and I was NEVER given the instruction about eating, so I have definately eaten around the time of the pills and it doesn't seem to affect anything. (That being said, I'm now on Hydrocort 4 x day which REQUIRES me to eat something right after, so it would be absolutely impossible for me to take the T3 2 x day and not have food for 3 hrs around it, AND take the Hydrocort 4 x day with food!!)
ReplyDeleteI didn't see much improvement on the T3 alone, either... except that my temps did rise a bit, which I suppose is improvement. But I had started Metformin a month before T3, and that seems to have helped me health-wise more than the T3. And the Hydrocort has DEFINATELY been an improvement (and it's only $10, as opposed to the insanely priced T3).
Sorry if this doesn't really answer your question. Or if it isn't the answer you were looking for... I know I have all sorts of problems endocrinologically, so maybe staying on the T3 is a good thing, even if I don't see the positive effects right now. Maybe for you, too. Blllaaaaa, I don't know!!!
I agree...The T3 is expensive. I get mine from the Compounding Pharmacy in Omaha. Ugh! Is Armour thyroid the same as the T3? I was going to look into that but of course, my new IF spec told me to stick with what I am doing for now until I get pregnant (Lord Willing). So for now, we just have to bite the bullet on the expense. Thank God my DH has a job! Amen to that.
ReplyDeleteI take synthroid now, after 3 years of armour thyroid and feel great! I don't have to take my temps and it is cheap. Could you ask to switch?
ReplyDeleteI don't take T3 so I can't help you there...but I have a question about something you mentioned.
ReplyDeleteSo PPVI thinks that maybe women have Thyroid issues even if it doesn't show up in bloodwork? Are low BBT's a sign? You mentioned 97.5 as being low...I haven't taken my BBT in awhile, but I know my temps pre-peak were consistently around 97.3 and sometimes as low as 96.8 (I remember joking with my DH that morning that I was afraid I was dead after taking my temp).
Just wondering. Obviously, I will find out more after I do the full hormone series next cycle.
Sorry I couldn't answer any of your questions. It does sound pretty crappy that the medication has all sorts of restrictions. I can barely stand taking my temp once a day, let alone 5 times plus your pulse too! Geesh!
I'm on 30mcg T3 now and have been on it since last June. I can't say I notice any difference in how I feel. However, in the interest of full disclosure, I'm lucky if I remember to take all my drugs each day, let alone at the correct times. (Every 12 hours to the minute? Are you kidding?) I won't even tell you how bad I am about those one-a-week temps and pulses.
ReplyDeleteVery interesting! So if not all napro doctors are stressing the eating restrictions, I wonder if the no-eating rule is just a super-conservative restriction meant for the study? I don't know. Just a thought.
ReplyDeleteKC - Yes.. I believe the whole point of PPVI's study is because they think that thyroid dysfunction (it's also called Wilson's Syndrome, if you want to google it) doesn't show up on blood work. I guess it's controversial though, and the American Thyroid Assoc., or whatever it's called, doesn't believe in it. I don't know what the threshold is for high or low temps, but 97.5 for me is my lowest and I think that is actually a pretty high low, if you know what I mean. I think that shows the T3 might be working. I would say anything in the 96's is pretty low, and I bet you anything PPVI would think you would qualify to be on it. Although we always joke that they just want warm bodies for the study (or cold ones if they have thyroid problems, haha)!
I am so confused. I am on the T3 and at the end of this month it will be one whole year that I have been taking it. I had to take my temps and pulses for 2 mo. in the beginning, then I was down to doing it once a weed for 2 mo. and then I was told to check my temps and pulses once a month, but I was never told anything about eating restrictions (time wise).
ReplyDeleteOverall, I feel like I have more energy, better bbt, warmer feet and hands :-), and I sleep better and wake up easier. One thing to keep in mind is that my t3/t4 ratio or reverse ratio (i don't know what they call it) was really, really bad! My temps now are on the NFP charts. Before, I was below the lowest line. Like, below 96.0! I was in bad shape. I had not always been this way, but I am so glad to be a little better! Sorry you are not seeing as many benefits. I am curious about the armor meds. One thing I do try to be mindful of is to always take my t3 meds every twelve hours. I know, I am a geek. By the way, I am at 22.5 mcg of the t3.
What do you think about the weed :) comment, I meant week! Have a great evening! Maybe I should get off of the computer since I can't type anymore!
ReplyDeleteJust an FYI - I remember the food direction coming from the instructions on the packet. The nurse never says anything about it to me on the phone.
ReplyDeleteJust saw that Ryan is coming into the Church, please tell him congrats! My DH came in one year ago and it is the MOST wonderful thing to share our faith together. Yeah!!
ReplyDeleteThis is so interesting!!! My BBT is ALWAYS low... usually in the 96's pre-O & highest is has only been in the low 97's. I'll have to ask my NP to research this... thanks for all the info!!
ReplyDelete