[SueAndHerZoo]

in reply to: Diagnosed @ 49 y/o #1179136

Boomer wrote:

Yep the toxic-tasting and toxic smelling meds ( *shudder*) must be working for I actually slept last ngiht for more than 3 hours and only dashed to the outhouse thrice yesterday.

Woo hoo! Small victories as my sister (55 suffers with MS) told me.

Small victories.

Love to all,

Boomer

Huh? Did I miss something? What toxic-smelling and tasting drugs????? I try very hard not to miss any of your posts but you’ve lost me.
Sue

[SueAndHerZoo]

in reply to: Is this thyroid or anxiety? #1179197

Wow, that was an amazing amount of information and food for thought…. thank you.

I do a lot of things “wrong” regarding the quality of my sleep, my patterns and my cycles, but fortunately it has never caused me problems before (at least not obvious problems). But as with everything else, once Graves has raised its ugly head, all things are effected, and almost always negatively.

Thanks for sharing all that.
Sue

[SueAndHerZoo]

in reply to: Meds: once a day? #1179215

Well, by Golly, it looks like I got myself yet another “million dollar question”?

Thanks for all the responses. Trust me, I would not change ANYTHING about my health routine based on something I read in a forum, but I suppose it could be dangerous to post this kind of information because there may be some people who DO take the things read on forums as Gospel. I simply read all the data, try to form some sort of educated opinion from the varying thoughts, and then talk to my doctor about it, armed with arguments from both sides.

I go for bloodwork tomorrow and endo visit Thursday so for the time being I will stay consistent at taking the entire dose in the morning, but one of the first things i will ask Thursday is about the dosing. If we were to go only by the instructions on the prescription label, I would interpret mine as “once a day”. Very curious to hear his thoughts on this and will share, IF you think that would be helpful.
Sue

[SueAndHerZoo]

in reply to: Is this thyroid or anxiety? #1179195

If you’re going to apologize for ranting you’re going to have to do MUCH better than that! That was barely a whine, let alone a rant.

I said the same thing to my therapist the other night: I have been through many, MANY stressful situations in my life, (so many that I could probably write a book) but none of those caused the panic I’m feeling now. I’ve had panic attacks (mostly controlled by meds) for 40 years and hadn’t had one for probably the past 20 years until my thyroid went bad in February.

So yes, this is panic and anxiety I’m having, but is it from the stressors of life? i don’t think so. I think it’s the thyroid that has every organ in my body in hypermode, most especially my nervous system.

I’m ready to have this thing yanked out. Right now, being tired and cold (but calmer) is starting to sound pretty good. It’s the “fat and happy” part that still bothers me, though.
Sue

[SueAndHerZoo]

in reply to: Meds: once a day? #1179205

Boomer wrote:

brondack wrote:

I think that this , like all questions regarding taking any medication, should be answered only by your doctor and not anyone on this forum.

I’m gonna have to go ahead and cosign brondack above.

We’ll send you a bill

Love to all,

Boomer

You can go ahead and bill me my co-pay and then I’ll have my people contact your people about the remaining balance due.

OK, perhaps I should rephrase the question: do most of you take your thyroid meds all at once or in 2 or 3 doses throughout the day?

(Better?)
Sue

[SueAndHerZoo]

in reply to: Is this thyroid or anxiety? #1179191

Thanks, Karen. I’m pretty sure I used to be able to take both and I know my doc told me it was OK to take both (one helps the physical symptoms and the other helps the mental issues) but these past two days it was really not a good combo.

In Googling it I find that lots of people take both together right before a public speaking event, etc. but maybe they take a lot of coffee, too, who knows.

So I guess the answer is that it is SAFE to take them both, but how you feel will depend on the individual. Trial and error I guess, and as much as I keep wishing I could feel un-hyper for a while, the zombie affect wasn’t so great, either.
Sue

[SueAndHerZoo]

in reply to: Is this thyroid or anxiety? #1179189

Hi Raspberry.

You may very well have hit it right on the head. I have NOT been taking propranolol regularly at all but instead have been taking it only “as needed”. I probably “need” it 3 or 4 times a day but since I already take so many meds I try to skip meds unless absolutely necessary. So when I have felt palpitations or found my resting heart rate to be 110 or higher I take one, but once my heartrate goes down, I don’t take one again until I notice symptoms.

I believe when I first got diagnosed with Graves 6 years ago I probably was taking one on schedule but this time when I was diagnosed as being out of remission the doc said I was only very slightly hyper and asked if I needed a BB. I told him I thought I still had plenty left over from last time and that was it. A few weeks later when I ended up in the ER with a very fast heartrate the ER doc wrote me a scrip and that’s what I use now “as needed”. Perhaps I SHOULD take at least 2 or 3 a day instead of waiting till things get bad. Oh, and the “slightly hyper” diagnosis a couple months ago has resulted in 3 dose increases of Methimazole and I think it’s still too fast. Bloodwork is Monday.

Thanks for replying. Sometimes we are so involved in our own situations that we can’t see what’s so obvious. Thank God you’re all here.
Sue

[SueAndHerZoo]

in reply to: Is this thyroid or anxiety? #1179187

Thanks for always replying, Kimberly….. it’s the one thing in life right now that I can truly count on.
Sue

[SueAndHerZoo]

in reply to: What if we never do RAI or TT? #1179117

Thanks, everyone. As has been said hundreds of times before, if it weren’t for this forum, I don’t know what I’d do.

Thank you all for sharing.
Sue

[SueAndHerZoo]

in reply to: What if we never do RAI or TT? #1179115

Wow, this is all so overwhelming and so much to weigh. Thank you ALL for sharing…. it gave me a lot of food for thought. I am still leaning strongly towards TT, especially because of the risk of developing eye problems after RAI even if they weren’t there prior. VERY scary.

I see my endo Thursday and will see how he feels about my thoughts to do something permanent, because I can’t see living with this unknown and roller coaster for the rest of my life. If I have to go through RAI hell or surgery, probably better to do it sooner rather than later.

I agree that TT is underutilized in the states. Last visit I asked my doc what percentage of his surgery patients regretted it versus being happy with it and he said he couldn’t tell me because he’s only had a very few go for surgery.

I will get some surgeon names from him and maybe set up consults with one or two of them. The more information from several sources can only help.

Damn……. too tired and feeling too yucky to make any major decisions right now. I’d just kill for a few weeks of my old life back.
Sue

[SueAndHerZoo]

in reply to: What if we never do RAI or TT? #1179110

Gabe wrote:

Hi Sue. I went directly to my PCP for the name of the best surgeon since my endo just wants to do meds for at least 12-18 months and I can’t and won’t. If you have good insurance and the inclination, get the names of those great Yale surgeons and just schedule a consult. Be ready because it took me 3 months to get an appt in little old Delaware. But it was enough time to make sure I wasn’t being impulsive, truly gave meds a chance, and did my research. I personally don’t believe they wouldn’t do a TT because of your levels (unless they are extremely bad). Then you would have a complete picture of the paths available to you.
Hope today is better for you!
Karen

That’s a really good idea, and maybe I’ll do that, but right now the idea of RAI is sounding better since I have no eye issues. And if I had RAI and it didn’t work I could always then go for surgery, I think?

I just called my endo to see if I could move up my bloodwork and appointment. It was scheduled for May 31st but even after being on an increased dose of Methimazole for 18 days my heartrate is still high and I’m crawling out of my skin. She moved me up to next Thursday so I’ll have blood drawn Monday. Can’t wait to see what my levels are and my biggest fear is that Doc will say “Gee, they’re not bad enough for you to be having these symptoms.” I think he may get to see Graves Rage if he does!

Then again, surgery sounds good too. Once and done. Riskier, but more effective? As you can see, my mind is all over the place.
Sue

[SueAndHerZoo]

in reply to: Well, here goes! #1173623

Stymie wrote:

Azgravesguy,

You are an inspiration to us all! Your positive attitude and hard work and dedication are nothing short of amazing.

You really inspire me. God bless.

Diane

What she said! You are amazing!
Sue

[SueAndHerZoo]

in reply to: What if we never do RAI or TT? #1179107

Hi Karen. Good for you for taking control and taking action. Your reasoning sounds very valid and wise. I actually asked my endo about surgery last time (for some reason it seems less frightening to me than RAI) and he said that there are three very good surgeons at Yale but that he didn’t think any of them would do a TT on me because my levels aren’t that bad. And then he reminded me that there’s always RAI if I’m serious about doing something permanent.

Thanks for telling me about your sister’s success with RAI…. very encouraging.

I, too, have the thought that if I’m going to do something I should do it within the next few years because I’m sure it’s riskier and more uncomfortable the older we get. (I’m 56). I don’t know if I’ll have the physical or mental stamina to stay on the rollercoaster 10 years from now, or even 5 years from now.

Good luck, and please let us know how it goes!
Sue

[SueAndHerZoo]

in reply to: What if we never do RAI or TT? #1179105

I agree, Kimberly……. the frequent trips to have blood drawn and then to the doc’s office really get old fast. I’ve been going once a month for a few months now and at one point he had me doing “every two weeks” for 3 sessions. The blood drawing station is quick and convenient but there is no fast or easy way to get to my doc’s office…. he’s way off the beaten path, and I ALWAYS have to wait for a very long time in the waiting room.

I guess I should consider that a trivial and minor downside but it does take a lot of time and energy that we don’t always have.
Sue

[SueAndHerZoo]

in reply to: What if we never do RAI or TT? #1179103

Momof5 wrote:

I have personally talked to at least 10 people who have had long term remission. Newer info is coming out to watch your TRab levels…and with negative TRab you can have successful long term remission. It may not be possible for everyone, but there are also several who take small maintenence doses of MMI or PTU and live happy, healthy lives.

Very good information and definitely food for thought. I will ask my endo about the TRab testing when I see him in two weeks. Thanks!

Kimberly wrote:

Hello – Hopefully, you will get some additional feedback here, but what makes this decision so difficult is that every patient responds a little differently to each treatment option.

We have an old facilitator here (James) who is in a 9+ year period of remission after 3 rounds of Anti-thyroid drugs, so it’s *not* necessarily a given that you will end up on a life-long rollercoaster if you continue to pursue remission with ATDs.

As Carrie noted, increased use of antibody testing prior to withdrawal of ATDs will hopefully lead to a larger number of patients experiencing extended remission on ATDs. And although the medical establishment generally recommends a “definitive” solution for patients who relapse, the latest medical guidance does leave the door open for patients to remain on low doses of ATDs longer term, if that is the patient’s preference.

We have many members here who have been happy with RAI or with surgery as their treatment options. But since you don’t get a “do-over” after either of these therapies, it’s important to make sure you have done your research and are comfortable with the risks before making a final decision.

You’ve asked the million-dollar question…I wish I had a better answer!

Two questions, Kimberly: does James mind you calling him an old facilitator? LOL And….. how will you be forwarding my million dollars? I prefer small bills if possible.

adenure wrote:

Hi Sue,

My initial thought after I was diagnosed was to try for remission, but methimazole elevated my liver enzymes quite a lot (8 times the normal amount), so I had to stop taking it right away (7 weeks into treatment). PTU wasn’t recommended, so I had to choose between surgery & RAI and quickly since I couldn’t stay on methimazole. I opted for surgery and I am really glad that I did. I am glad that I don’t have to worry about suffering from hyperthyroidism again. I also look at the fact that surgery (and perhaps RAI- I don’t know) would be harder on the body as I got older. So, in a way, I think my push into a definitive treatment was a blessing in an odd sort of way. It’s not perfect by any stretch and I sure wish I had a healthy thyroid, but I was dealt the hand I got, and that’s okay. It could’ve been worse, there are worse things to deal with. So, my 2 cents is that RAI and surgery can give you your health back and do away with the possibility and worry of returning hyperthyroidism. I’ve read that returning bouts of hyperthyroidism tend to be worse, but I don’t know if that’s scientific fact or not.

Yes, you are almost fortunate that you didn’t have to toil with a life-changing decision…..the Universe made it for you and thankfully it was a good one. I wonder if that’s true about each recurrence being worse because this is only my first recurrence but even though my numbers aren’t as bad as when I was first diagnosed, I feel worse and we’re having a hard time getting my levels to the right place.

Thanks for the feedback everyone. Would love to hear more pros and cons of RAI versus long term ATD.
Sue

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