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Hi Guys. Been kinda quiet around here – miss hearing from all my fellow-TT’ers and reading about their journeys post surgery. I’ll start by giving my update . . . hopefully some of the others will come back and post theirs, too.
I’m just about 6 months post surgery and for the most part feeling pretty good. We had to lower my Levothyroxine a few times and now I’m alternating 100 mcg. one day, 112 mcg the next day, so basically on average I’m getting 106 mcgs. daily. I am very CALM which is something I’ve never been able to say in my 56 years…. I’ve dealt with anxiety my whole life. I know that is directly related to the removal of my thryoid and I’m very grateful.
However, I might be a little TOO calm. I am feeling kinda bored, depressed, lethargic… just no zest for anything lately. Granted, this could be winter blues or post-holiday letdown so I’m hoping it will pass, but I really don’t have any desire to do anything lately except be on a couch with a laptop and TV. I work full time and it’s pretty quiet and boring there, too, so maybe that has something to do with it.
I’ve put on about 10 pounds since my surgery and re-started Weight Watchers this week. I don’t know if the weight is from the lack of a thyroid or all the holiday eating…. I’m guessing it’s the latter. If I can take it off by cutting back calories then I’ll be ok with the “eating less, moving more” way of losing weight, but if it doesn’t come off with some effort then I’m going to panic and want my meds adjusted.
So other than a “blah” mood all the time and a few extra pounds, I’m feeling really good and have never regretted having a TT.
Hope to hear updates from others!
SueThe combination of feeling decent and trying to catch up on things that I had let slide in conjunction with holiday and kids and whew! I have glanced at some posts over the last couple of weeks but haven’t logged on much.
Glad to see you are feeling generally OK. I will have my 2nd set of post TT labs in about 10 days. I am feeling so much better overall but I had a fairly large dose increase after the first labs. My weight had been creeping up while on the PTU and a bit after the TT as well. I am tall so most people have not noticed the extra 15-20 lbs but many of my clothes don’t fit. I am assuming now that I am feeling decent that I will feel more like being active. Now that the Xmas cookies are gone, that should help too.
I totally agree that I have no regrets about having TT.
Happy New Year!
LaurelHi Sue –
So glad to see your post, and that you are feeling better! I’m in the winter blah’s phase, too – blaming it on those short dark winter days up here – but at least we’re past the solstice. Like you, I’ve been missing our “Class of 2013” posters (Boomer, Momof5, many others) and hope they come back soon. I’d like to hear how they are doing. I’m still in the ATD group, but TSH is in the zone, and I feel so much better than those early days last winter – thanks to the doctor,and the support I find here. All the best,
Flora
PS: Hope you and our Forum Friends spotted my New Year’s greeting recently!Hi Sue,
I guess we’ve all been busy over the holidays and are just now getting back into the swing of things.
I’m not one of the TTers, but rather a RAIer.
The Synthroid, 75 MCG, seems to be working out much better than the Levothyroxine did. Muscle aches are less and so is the hair loss. I feel pretty good, actually. My next appointment with the endo is not until April and now that my whining stopped I may not even have to get labs until then, provided it stays this way.I have a question for you, talking about hair. Remember when you said you were going to get a perm? Did that work out? Still got your hair, or most of it? The reason I’m asking is that I’m contemplating getting a perm. It would be great to hear that it went OK.
Hugs.
Barbra.Hi Barbra – nice to hear from you! I had blood drawn Wednesday and just got back from my endo … it seems I’m still on the hyper side but he gave me the choice of lowering my Levothyroxine or staying where I am for a while. Since I’m feeling pretty good I opted to stay at this dosage and go for stability for a while because whenever I’ve adjusted doses I seem to go through several weeks of “yuck”. But it’s good to know that if I get anxious or feel bouts of hyper symptoms that I am NOT imagining it… always nice to have validation.
Regarding the perm, yes, I DID get it and I DO still have all my hair – hooray!!!!
The perm took perfectly and I haven’t regretted it once. Once it starts to grow out too much I’ll definitely do it again – thanks for asking.
SueHi Sue, good to hear your perm went well! I’m thinking of coloring my hair but I’ve been a little leary too of it making it fall out more. Did you every get try out the azulene cream?
If I remember right you had a few periods of remission from Graves – did your anxiety improve at all during those times?
Raspberry wrote:Hi Sue, good to hear your perm went well! I’m thinking of coloring my hair but I’ve been a little leary too of it making it fall out more. Did you every get try out the azulene cream?If I remember right you had a few periods of remission from Graves – did your anxiety improve at all during those times?
I don’t think coloring your hair would cause additional hair loss… the color products today actually seem to make your hair MORE healthy and conditioned, at least it does mine.
Try Azulene cream? I’ve used nothing else since! There are many days that I even use the eye cream on my face – really great stuff! Thanks for the reminder…. time to order some more.
Yes, when I was in remission from my Graves my anxiety disappeared and I was leading a perfectly “normal” life. It’s nice while it lasts but the problem is, it never did.
SueThat’s awesome Sue – I love that cream too. It has such a lovely texture and I swear it still helps my eyes look better.
I asked about your anxiety during remissions because sometimes I wonder if I made the right decision not to have the TT. My life situation really doesn’t support me having surgery of any kind right now, yet it is coming on two years fight with Graves and I’m frustrated. The “sweet spot” of the right medication dosage keeps changing for me even when I do find it. My endo offered the TT option a couple months in and I told her no I wanted remission. Now I’m not sure what I want…or can get for that matter!
I can relate, Raspberry. The non-existence of consistency is what drove me to insist on getting referred to a surgeon. My endo thought I should either keep chasing a remission (even though he admitted that having had one and lost it I might never have one again) or do RAI. He didn’t think my levels were bad enough to justify surgery. The day I showed up crying in frustration over riding an emotional and physical rollercoaster he agreed that perhaps I should consult a surgeon and I never looked back after that, nor have I regretted it.
Had it just been physical symptoms I may have hung in there longer with ATD’s but the anxiety was starting to take over my life. I knew that I wanted CONSISTENCY, whether it would be slightly hypo or slightly hyper, I just wanted something I could get used to and rely on, ya know?
Sorry you’re still chasing the sweet spot. How does your endo feel about possible surgery? Do you have the insurance coverage for surgery?
SueOh yeah, it’s the fact that it affects my mind that makes it hardest to deal with. For me it’s more depression and anger that fluctuate with the levels, though anxiety is in the mix too. It ain’t fun! I’m glad your doctor was finally willing to listen to you – I think unless they have Graves themselves they can’t imagine what it is like.
As for me and surgery, financially and personally it’s just a no-go for me now. Maybe in a year or two. Fortunately I respond very well to methimazole so I can stay on the roller coaster for a while – though not necessarily happier. But hey there’s always that next dosage change around the corner that might be the one!
Oh yes, the anger! My poor husband – I would rip him a new one several times a day for absolutely nothing. And then when that passed I would feel horrible about being that way and get depressed.
I like your attitude, and it’s very possible that the right dose really is just around the corner. The two weeks before my surgery I felt great and was at a really good level on my ATD’s. I remember thinking that if I could feel that good after surgery I’d be very happy…. luckily I feel even better than that now. You will too, one way or the other.
SueRaspberry wrote:Oh yeah, it’s the fact that it affects my mind that makes it hardest to deal with. For me it’s more depression and anger that fluctuate with the levels, though anxiety is in the mix too. It ain’t fun! I’m glad your doctor was finally willing to listen to you – I think unless they have Graves themselves they can’t imagine what it is like.As for me and surgery, financially and personally it’s just a no-go for me now. Maybe in a year or two. Fortunately I respond very well to methimazole so I can stay on the roller coaster for a while – though not necessarily happier. But hey there’s always that next dosage change around the corner that might be the one!
Your husband must be a good man Sue! I always feel for people writing about the strain on their marriages. Sometimes I wish I were married going through this for the support, but on the other hand as crazy as I get sometimes it might have wrecked a marriage.
Twice in the journey I’ve come very close to remission – feeling really normal, dosage reductions needed after every lab. Both times I lost it due to extreme external life stress events. So part of me doesn’t want to give up because I believe it is possible! But then I can’t control the universe. I’ll try for a bit longer since surgery isn’t feasible so who knows.
Anyway, enough about me! I’d like to hear from more TT veterans too. Looks like AZGravesGuy is soon to join you.
Well…I’m pretty new to the forum and Graves, but I think I am leaning toward being a TT’er soon. Being a single mom and teaching preschool while trying to find my “sweet spot” with medication is a nightmare. If I only had one or two symptoms, I’d do better dealing with it, but it’s like an onslaught and has been for almost all 6 months of knowing I have Graves. I met with a surgeon today who was extremely encouraging, even though my endo, who he works closely with, says it’s too early in the treatment for her to “recommend” a TT. My endo has left it up to me to decide because my symptoms have been so across the board along with my med doses. Plus it looks like even if I can get lucky enough for remission, my feelings are that it won’t be for long. Maybe this is the “easy” way out, not wanting to deal with fighting the Graves and Hashimoto’s and meds, but I am exhausted and want to have a day that is consistent (like you are talking about). I haven’t had one day in 7 months that I have felt “good”, and I miss it. Thanks for sharing!!
Sara
Sara, welcome to this wonderful forum. So glad you are here.
Graves’ IS a nightmare, it really is. It is so hard, so difficult, to see yourself (ourselves, myself) turn into a totally different person WE barely recognize, let along our friends, neighbors, employers, kids and the person at the grocery store! It was very, very hard.I am long past that stage now, and began posting on the forum because of eye issues many years later. But I remember that stage (thought almost 55 years ago) the nightmare that it was.
As you will read, and have learned, there are three ways to go. I chose surgery, because it seemed the fastest way back to being my normal self. It seems to work, and I liked the fast part!
There are some wonderful posters here, in your age range, who are parents, who’ve had TT’s. Sue is a shining example and if you use the search posts part of the forum, you will find many more.
The most important thing I have to say to you right now, is that you WILL be better, life WILL pretty much be back to normal, and you WILL take a pill the rest of your life, but hey, who cares about that? It is a great trade off.
Shirley
Thank you so much Shirley. It has been wonderful and so supportive to read all the posts on here. It has given me a lot of insight and helped me make the decisions I have. I got teary eyed at the last paragraph of your post as it was extremely encouraging. I am going ahead with the TT surgery, I am like you and want the quick route, I guess. I don’t want to keep playing with the meds and keep feeling like this, especially since I have been given the choice to have the TT. Now I am just waiting for the insurance approval. It believe it is the best decision for me and my son. Thanks again
Sara
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