[snelsen]

#1181695

YOur last question.
ENT surgeons would not be interested in discussing Graves, and questions about antibodies, etc. They talk surgery, that is it.

Glad Kimberly addressed your question about antibodies.
That test DOES take longer than the other labs.

Yes, your labs are a bit puzzling. Dunno.

I had the same experience about some co-workers grumbling when I was sick or had doctor appts. I was surprised, since we all took care of sick people!!!!

It is late. Think I will turn on my heated electric mattress pad (just got it this year, I LOVE it!) and get ready for bed.

YOUR Thanksgiving is some other time but I cannot recall if it before our after ours, which is in a couple of days.

So nice to get to know you, even though our common bond of Graves’ is something neither of us expected or wanted, that is for darn sure.
Shirley

[Kimberly]

#1181696

shakira7 wrote:

So, both ATD and TTX lowers Antibodies, however, ATD isn’t permanent and TTX is permanent, right?

Hard to say for sure. Some people do experience a remission following a course of ATDs. I’ve heard varying stats from 30-50%. I have not seen good data, though, on what percentage of those patients eventually had a relapse.

If you choose total thyroidectomy, that is a permanent cure for hyperthyroidism; the relapse rate is almost zero. Subtotal (partial) thyroidectomy does come with a risk of relapse; one study that I saw put this at around 16%.

[shakira7]

#1181697

Hi Shirley,

Hope you had a wonderful Thanksgiving Day with your family.
Canadian Thanksgiving is on the second Monday of October.
It’s not as big as the one in US, but we get enjoy the long weekend & some take their vacation around that time.

My endo called me back regarding my lab result – ATD reduced to 5mg/3 days, but TSH went up to 2.38. He said the TSH can fluctuate a bit, and I just stay on ATD until my follow-up in January. I sent a request to the hospital to send me the Antibodies results.

I have to admit, that part of myself wishes/hopes I can go into permission remission with ATD treatment. You can tell me that I’m dreaming, and I won’t get offended. I think, it’s because, part of myself is a bit scared of “my life after surgery”. I have been planning to go to do some travelling next year, and I don’t know if I’ll be in good shape by my vacation. I can always postpone the travel, but I just hope I won’t be in a “weak status” for more than 3 months. After being diagnosed with Graves, I’ve decided to see the world as much as I can while I can and while I am still young. Life is too short.

What is the average period after the TTX, to get into the stable status?

Code:

So nice to get to know you, even though our common bond of Graves’ is something neither of us expected or wanted, that is for darn sure.

LOL! Very nice to know you, too! Yep, I totally agree with you, since I’m sure not a single soul on this forum had expected to be diagnosed with Graves. I didn’t even know what thyroid was until I was diagnosed with this disease, ha ha.

---

Hi Kimberly,

Code:

Some people do experience a remission following a course of ATDs. I’ve heard varying stats from 30-50%. I have not seen good data, though, on what percentage of those patients eventually had a relapse.

Only if I can figure a way out to be among the 30-50% who goes into remission permanently, or until i am too old to do any physical activities.

BTW, my right upper eyelid, the one that I’ve been complaining about since September, has been status quo. However, now my left eyelid is very slowly showing edema as well as eyelid twitching. I couldn’t find the cause of eyelid twitching that is related to thyroid condition. I don’t have any dry eye experience as of yet. (knocking on wood.)

So btw TTX and ATD treatment, I will decide in February, when I see the 3rd endo for the 3rd opinion. I wish someone can tell me what they see on their crystal ball, regarding my thyroid – which option to go.

Now that my TSH seems to be in normal range, part of myself wants to give my thyroid a second chance to see if it will “behave” well, so that I can go into remission…for good.

Thanks again to both of you.
Just like Shirley told me, very nice to know both of you, although I wish we all met through another reason, other than Graves.

Shakira7

[snelsen]

#1181679

Hi Shakira,
Well, there was a bit of a kerfluffle about our Thanksgiving. ONE of the family members (the difficult one) decided we’d go to the Four Seasons for a meal rather than cooking it. The rest of us thought it was a bad idea, we wanted all the familiar chaos of cooking in the kitchen at home. So we went, and all were disappointed except one of us! “Nuff said!

I wish you would/could go into permanent remission, too. Or even a couple decades would be nice!
Just wanna say that “life after surgery” was just fine for me. Of course recovering from the surgery is not much at all, so I am supposing you are referring to getting thyroid hormone to the “sweet spot” or the right does for you. IF you had a TT, when would it be?

I’d say that 3 months is long enuf to find the right dose. But some people just begin with enough. It is good to begin with a low enough dose, and wait at least 6 weeks for labs, so you really know where you are.

You have a couple months to see if you remain in a stable state on ATD’s that is good.

Realize, when you see an endo, each has their own biases and opinions, other than YOU, sometimes, about what treatment they recommend. If they are more familiar with RAI, they may emphasize that. If there are good surgeons in your geographic area, there is no reason not to chose TT. I would do that again and again. Just not an RAI person. But, as you know, many on the forum chose that.

Sounds like you have the choice of continuing on ATD’s and if you feel good, and labs are good, I say go for it. If you get hyper again, that probably means ATD not for you. I think everyone, including Kimberly, who has been ATD’ing for several years, said that if she becomes a full hyper person again, she’ll select one of the more permanent options.

I agree 1000% about travel. I have done a fair amount, wish I’d done more when I was in my 40s and 50s-especially the really strenuous trips.
BUT I had teenagers then, and not an option until I was in 50’s.

Places I loved Galapagos, Ireland, Turkey, England, France, all national parks in US. To name a few…..and the best for me.
Shirley

[shakira7]

#1181698

Hi Shirley,

Thanks for such kind thoughts.

Let me ask you something; even when your labs shows normal level in TSH, FT4 and all that, can you still go crazy and become easily agitated? I’m talking about the craziness associated with Graves Disease.

I may have to make a decision next spring about my employment, since a lot of changes are making me feel agitated spending 8hrs. We are very short-staffed since this months, no vacations, no surgery-related absences are allowed between dec – mar every year. Such working climate is working against my health, and I won’t sacrifice my health over some job that doesn’t even pay well.

I also seem to be a lot less tolerant with people around me, and I get easily annoyed and agitated if they get on my way.

I think, the fact that my eyelid swelling is gradually changing my facial appearance, this seems to be causing some distress as well.

Is TTX supposed to resolve this “craziness” issue, too?
I personally hope that my eyelid swelling will stop, once I get my TTX done.

Wow, you’ve been to so many wonderful places. Galapagos is a place I would love to see one day.

Once I find the right dosage, how often do people go back to their doctor for a check-up?

Once I do the TTX, then find the hotspot within 4-5 months at the most, I am seriously considering packing and travel around the world with my savings, for about 1.5 years.

I need to be off from work for 3 weeks, when I get the TTX, and I honestly can see my boss (who actually had her thyroidectomy done last year due to a cancerous nodule) & the coworkers giving me x%$& just the fact that I will be off from work for that long, regardless of the reason. Therefore, I am ready to move on to take care of my thyroid. They do not know the reasons for my medical visits, but it obviously upsets everyone, because I guess they’ve never been sick.

I’m in my early 40s, and I cannot say that I am 100% happy where I am right now. I have nothing that is holding me in my life, so maybe this is the time to do something I like, while I am still in ok-state of health.

Thanks, Shirley,

Shakira7

[shakira7]

#1181699

Hello everyone,

First of all, I wish y’all a very Happy New Year!!
I went to see the ENT surgeon, and he wants me to get an ultrasound done, to see if there are any nodules. If so, then he will send to get a biopsy done.
Unless there is any cancerous nodules, he prefers not to do a TTX as there are consequences that a patient needs to live with – taking synthroid for the rest of his/her life, possibly taking calcium supplements…etc.

Is it a normal procedure to send a Graves disease patient to get a thyroid ultrasound done?
Wouldn’t it be the blood test results that he should look at?

Is it common that a Graves Disease patient also has a thyroid cancer?

I was a bit surprised this morning, since I didn’t expect to be sent to an imaging centre before deciding to get TTX.

Shakira7

[Raspberry]

#1181700

Nodule Girl here, yep it’s standard procedure really to have the thyroid ultrasound done as part of your original thyroid work up when you get diagnosed with Graves’. I was told there is a 1 in 10 chance that any individual nodule could be cancerous. Fortunately I was okay and I declined surgery at the time though as time stretches by still feeling unwell despite “good” numbers well over a year I wonder if I’ll get a TT one day myself.

I’ve read of a lot of cases though where people had a TT even if they had no nodules for just the Graves. You’ve got lifetime consequences no matter path you choose unless you get a lasting remission.

[Kimberly]

#1181701

Hello – I wouldn’t say it’s common to have both thyroid cancer and Graves’, but it definitely can happen. In fact, we’ve had posters here who discovered their thyroid had cancerous cells *after* having surgery for Graves’.

You might consider getting a second opinion from another surgeon. I’ve heard of other cases where surgeons discouraged a Graves’ patient from pursing thyroidectomy as a treatment option, but this *is* a valid treatment option, particularly when you are dealing with a surgeon who is very familiar with Graves’ and does a lot of thyroidectomies. Of course, as Raspberry said, it’s important to understand the potential risks and consequences up front — which is the case with all of the treatment options.

[shakira7]

#1181702

@ Raspberry: you’re 100% right about the consequences. good news is that my ultrasound came out very normal, zero nodules.

@ Kimberly and Shirley:
For now, I’ve backed out of TTX. I don’t even have the energy to go after a 2nd ENT surgeon, since it’s such a hassle in Canada to even get a hold of a specialist…unless you have lots of $$ to see a private doctor. I’ll save that option for the future, but thanks, Kimberly, for your suggestion!

The ENT surgeon knows my current endo. Small world. He reassured me that my endo knows Graves Disease and that he knows what he’s doing; he doesn’t think I need to shop around more for another endo, since my treatment has been going well.

This morning, I went to see my endo.
– My ATD treatment is going very well. TSH 2.43
– WBC, liver – they’re all looking good, in normal range.
– Methimazole 5mg/2 a wk since Dec
– Methimazole 5mg/every 5 days for the next 4 wks
– He won’t consider RAI as my treatment option due to my swollen eyelids.

He first suggested that I stop Methimazole, to which I objected.
To his suggestion of 5mg/1x wk, I suggested to go with 5mg/every 5days.
I expressed him how I’m terrified to become hyperthyroid again.
He okayed.
He told me the following:
– If I go into a remission and then relapse, he’ll put me back on ATD.
– By doing this and having me remain on ATD off and on, this Graves Disease is eventually going to die out.

Now, does anyone believe what he just said, about the part where eventually, the Graves Disease is going to fade out after years of ATD dosage?

I would love this to happen, but it sounds too good to be true.

[cmac]

#1181703

Shakira, we have a very similar GD history. I was diagnosed August 2012,went on MMI for approximately 1 year, reducing gradually from 15 mg/day to 2.5 every other day, and finally stopping in September. Have had 2 labs including a metabolic panel since then and everything is in normal range. Am seeing the Endo every 6 months, with labs every 4 months. Evidently in remission, no lingering effects of GD, although I know it takes a year for an official remission diagnosis. I remember what Hyper feels like and am alert to any changes, but so far, so good. I hope you find yourself in the same place. Good Luck.

[Kimberly]

#1181704

Hello – I’ts really hard to predict what will happen, so this is ultimately a decision that you and your doctor will have to make. Some patients do end up going hypothyroid after a period of years on anti-thyroid drugs. Others are able to go into a long-term remission and don’t have to take any meds at all or might go through multiple cycles of remission and relapses. Still others (and I’m in this category) are able to keep levels stable for the long term with a low dose of the meds.

[Author]

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