[ewmb]

#1018530

Just wanted to let people know that about 1 year from my RAI I am still working on getting my levoxyl levels at the right dose and have bad days but I am was so glad that I finally did something to get myself on the path to wellness. Waiting to hear from the doctor today on latest tests. I’ve finally started losing some weight and I can do more now than a year ago for sure. It’s hard to be patient somedays but things are getting better slowly…… I’ll cross my fingers that my tests show progress in the right direction.

Take care
ewmb

[Ski]

#1065508

Thanks for the update! It is so important to have news from "the other side," for those who have just begun the journey…

[susandemarco]

#1065509

I would like Ski or Bobbi to reply to this,
I had my RAI treatment on Jan.8,2010 and became hypo on Mar. 8,2010. My endo put me on 100mcg of synthroid on that
day. I took it for eight weeks and then felt like I was becoming hyper again. Not as bad as pre RAI, but felt very
tired and sometimes would feel hot. When i went back for bloodwork, sure enough, my dose had to be less. She
put me on 88mcg, and I have been on this dose for about three and one half weeks, and starting to feel the same
way. Very tired. Could it be that this dose is to low or to high. Is it to early to call the endo and go back for blood work?
Or should I just wait until my next appointment, which is not until June 10.

I would appreciate your suggestions.

Thanks
Susan

[ewmb]

#1065510

Susan,
I have been on a different dose about every 6-8 weeks since I became hypo. As I mentioned I am still not at the
"right" dose at 8 months out from that first one. It is very hard to wait for the new blood work numbers but the 6-8 weeks is the time you have to wait to see if things are really changing. I had blood work done on Tuesday and the doctor didn’t call by yesterday so I may have to wait until Tuesday of next week! He was checking a few other things besides TSH and free t-4 so that may have held things up. I hope that you are feeling well today.

ewmb

[susandemarco]

#1065511

Hi ewmb,
Can you please tell me what dose you are on now. And what are your symptoms when you realize that the
dose has to be changed.
Thank you,
Susan

[ewmb]

#1065512

Susan,
I started out slowly on 25mcg. I am now taking 100mcg 4 times a week and 112 mcg 3 times a week. I was just having blood work done routinely about every 6-8 weeks because I still haven’t found the right dose. I always thought that my symptoms were still showing things weren’t right but can’t pinpoint that for you because sometimes I was wrong. There was one 6 week period when things didn’t really change at all but I was thinking that from the bad way that I felt that surely they had. My endo just wanted to keep checking things until we got the right place…… which I don’t feel like is now but I haven’t gotten back my latest blood work yet. I’ll post when I get it to let you know. I think that I have gone over into hyper again because of my symptoms: tremors, not sleeping well, periods getting closer together, fatigue, brain fog etc.. My endo said that he has had patients report that they felt hyper when they were first "at normal" levels again after such a long period. Said he couldn’t explain why but that it does happen.

ewmb

[Ski]

#1065513

I have always felt weird for the first few weeks after using a new dose of replacement hormone, not sure why that happens, but it’s a pretty common phenomenon. I tend to feel a little up, then a little down, and after about four weeks, things settle down for the most part. The body doesn’t fully metabolize and adjust to a new dose of replacement hormone for at least six weeks, that’s just a fact, and the best possible way to find your proper dose is to make sure you wait that length of time each time you change doses of replacement thyroid hormone before you test. I wish it were as easy to fix a dose of replacement hormone as it is to decide upon a dose of sinus or pain medication, but it’s not. There are so many factors that play into it, and a little dose of "magic" (translated: stuff science hasn’t exactly figured out yet), so we have to do this dance in order to zero in on our dose. One of the best ways to help your doctor decide upon the correct dose for you is to keep a symptom diary ~ make note of the most prominent symptoms you’re feeling, and quantify and log them each day, then take the diary to the doctor at your next appointment, and discuss it. It’s much easier for you both to decide on the probable next steps when you can see that. At first, we just try to get within the normal range, but then we must see if we are at our best point within that range, and that’s where the diary comes in. When your lab results still show you outside the range of normal, it’s easy to tell what to do, though not so easy to know how far to go with the dose. It’s healthiest for the body to move one dose level at a time, because even if you’re proceeding in the right direction, it’s a shock to the system that triggers an escalation of some familiar issues if you move too far (hair and nails issues, mostly). So while it may seem that you’re moving far too slowly with this, it’s really the safest way to get where you need to be. Patience in all things Graves’. ” title=”Very Happy” />

[ewmb]

#1065514

Just heard from endo today on new blood work results. My TSH is now 4.4, the lowest it’s been since I went hypo last September. He suggested staying with my current dose- 106mcg per day with week split between two different doses and see how that does over the next few months. Maybe this time I will be able to start to get some of my other health issues ( fibromyalgia, osteoporosis from the Graves and menopause) under control if I’m not changing my dose again and again. Long time since I had this much hope that I am getting well………… ” title=”Very Happy” /> My retiring endo also gave me two referrals to two other "great" docs who treat Graves patients in the same practice.

ewmb

[ewmb]

#1065515

Question for those who have been trying to get to the right dose of levoxyl or synthorid. As I mentioned in my earlier post here my TSH is 4.4 this last time but when I got the test results in the mail today it showed that my Free T-4 is above normal now. Is that ok? I know that it measures what’s in the blood at the time of the test. Does it mean that I have too much or that I just have a good supply now and that the TSH will continue to go down as this all settles out?

Thanks,
ewmb

[Ski]

#1065516

T4 above normal should be addressed, definitely. Talk with your doctor ~ I’m sure they’ll have some opinions based on how much above normal it is, but consult at least for now, and make sure to test again when the doctor suggests you have it done.

[ewmb]

#1065517

Heard back from the endo who isn’t worried about the free T-4 being high right now since the TSH is still not low enough. The nurse who passed on the message emphasized that this does not mean that I am hyper right now. In other words from what I think I am still not very settled and things are still up in the air in my blood stream. I have no choice but to wait things out. Didn’t get a new test date for bloodwork as my endo is retiring next week. I will see how I am six weeks from my last one and then I can try and get some new numbers.

ewmb

[runlacie]

#1065518

Hi ewmb!
I was just visiting the site and I saw your post. It’s been a while since I’ve posted, but I remember that we went through it all together and I’m glad to see that things are looking up for you! Your experience sounds very similar to my own, with the ups and downs and still trying to find the right dose of levoxyl. I’m on 88 and some days I feel hyper and some days I feel hypo! I go for bloodwork next week and am curious to see where I am at now. I feel pretty good overall. Still have palpatations and PVC’s, but my running was going very good up until recently, I think it’s possible I’m heading hyper now as my HR is rising and I can’t tolerate the hot weather. We’ll see. Anyways, it looks like we are both on a much happier path than last year at this time!
Take care!

[ewmb]

#1065519

Lacie,
Yes I am on the right path too just wish, as always, that it would happen faster. I too feel hyper and then hypo sometimes. I will get to see a new endo in a few months and I’ll see what her take on things is. My old one retired. I don’t have palpitations very much at all. I have tremors when I get really tired. I know that my muscles aren’t up to speed yet. I have never tolerated heat very well so I don’t notice a difference there. Just a few hot flashes now and then. I think that’s due to other hormones.

Glad to hear that you are doing well.

ewmb

[runlacie]

#1065520

lol to it happening faster! It has been a really long year of waiting, waiting and more waiting, but on the other hand it seems like just yesterday I found out I had Graves’! I really thought that RAI would be the fastest path to normal, now I’m not sure about that. But if one thing is certain, I’m a lot better than I was last year. ” title=”Wink” />

[maryintx]

#1065521

I had bloodwork done every 2 weeks after RAI starting 3 weeks after the uptake. With WEB MD and going directly to the lab for the draws, I didn’t have to wait to see the endo and Dr called in my prescription changes as we went along adjusting as I adjusted. and continue too ” title=”Smile” /> My Dr runs the whole panel including white blood cell count and it is just honestly interesting to see how the whole shebang alters over time.

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