[fishman April 4, 2013 at 2:58 pm Post count: 18]

#1059817

Hello Everyone, My name is Vince, I’m 46 years old.

I’ve been struggling with Graves and hyper-thyroid for a year since I recieved my physical and blood work. I’ve might of had it for years and didn’t even know it? I’ve been taking Methimazole the whole time and been up and down on doses. I go back to the endo doctor next tuesday. They want me to kill the thyroid with the radio active idone and have heard good things from others they felt great and was glad they did it. My emotions from graves has been off the wall with anxiety to depression and I have been all over the place. They are mostly concer for my heart. I always have this butterfly, chills, sickness in my stomach and been really emotional since taking the medication for a year now. Any one care to give me options or opinons, please do so over this weekend. I want to really decide and talk to my doctor this coming tuesday!

This Medication or the GD is driving me nuts! I feel like I want to be sheltered and not do anything lately. My emotions are through the roof with my anxiety and my stomach and nerves are easily stressful. I’m in love with my best friend and I feel this is hurting me and her as well. Cause I feel it all day! Even when I’m out in stores or anywhere. I can’t think right. I’m everywhere and I feel like I’m a train wreak.

[KimberlyOnline Facilitator April 4, 2013 at 5:34 pm Post count: 4294]

#1177886

Hello and welcome! We are fellow patients here, not docs, but a couple of thoughts that would be good for discussion with your doc on Tuesday…

1. Keep in mind that it’s important for your doctor to base dosing decisions on Free T4 and T3 and *not* on TSH, which can remain suppressed for quite some time in Graves’ patients. Dosing off of TSH alone can potentially produce hyper/hypo swings.

2. Some patients are VERY sensitive to small changes in Methimazole dosing, so you might discuss the option of alternating doses every other day. As an example, at one point, I was taking 5 mg of Methimazole 5 days a week and 7.5 mg two days a week. Definitely a weird dosing schedule, but that’s what it took at that point to keep my labs in line.

All three of the treatment options have risks and benefits…the “Treatment Options” thread in the announcements section of this forum has two great links that go through the pros and cons. This board also has a search function (in the top right-hand corner of the screen), so you can run a search for “RAI”, “thyroidectomy”, “surgery”, etc. to read stories from other patients.

Hopefully, you have a doc who will spend time with you and answer all of your questions on Tuesday as you make this difficult decision.

[adenure April 4, 2013 at 9:29 pm Post count: 491]

#1177887

Hi Vince!

The best thing to do is research all the options and then go with your gut feeling (as long as your doctor is on board). It sounds like you’re leaning towards choosing something more definitive like RAI or surgery as the methimazole has you up and down a lot.

If RAI feels right for you, then go for it. If surgery feels right for you (and your doctor thinks you’re a good candidate), then go for it. I opted for surgery for a bunch of reasons. I had my thyroidectomy 8 months ago and I am doing well. I’m much healthier physically, emotionally, and mentally now that my thyroid levels are stable (on Synthroid). It’s really a relief to be normal again. I chose surgery because I have a family (4 young children) and didn’t want to be away from them for a week. I also wanted to keep breastfeeding my baby. I was worried about eye issues (even though I don’t have any TED that I know of). I also didn’t want to wait for my thyroid to die out and have a dead gland hanging out in my body. Not really a good reason to avoid RAI I guess, but that’s how I felt. I also kind of wanted to get things moving forward as quickly as possible. Now, it did take 2 months to get my thyroid levels normal on Synthroid (one dose change at 6 weeks post op.) and 2 more months on that dose to start to feel really good again. So, all in all a good 4 months there. But, it was worth it.

Do the research (avoid the websites with thousands of horror stories- I spent many night crying and freaking out about the “what if’s”). Make the right choice for you. It will get better.

[mwhitney April 5, 2013 at 2:04 am Post count: 34]

#1177888

I got diagnosed 5 weeks ago and already hit the wall with the medication, I wasn’t even able to try another one, because of my reaction to it.
And today I decided to do the RAI. I realize neither option sounds like a fun time. Both for me have risks, but for me the RAI has less risks than surgery.
I was really hoping for more time, but sometime’s that fork in the road shows up.

If it makes you feel better or you have tons of questions, you can always call your local hospital’s nuclear medicine department, That’s what I did this afternoon when I made my appt. for my RAI treatment. I was able to talk to their guys there’s and ask all the questions I wanted, they didn’t seem to mind and I talked to several people working in the department a nuclear tech, and even their nuclear scientist , they were actually happy that I wanted to share my concerns and thought I was asking valid questions, since they work day in and out they’ve seen everything. I felt a lot better after picking their brains, so I feel like I’m that scared anymore.

Hey it’s an idea, I thought they were pretty helpful today.

[fishman April 5, 2013 at 2:25 pm Post count: 18]

#1177889

Thanks for the quick reply! That’s interesting cause in January 2013 my TSH rocketed to 14.07 my t4 free was 0.9 and t3 was 2.7. I was increased on my methimazole before the January 2013 blood work as it may go into remission I was hoping and the Doctor as well. After January 2013 I went back to 10mg the first month of the Methimazole and then did another blood work. The doctor called and said go back to 0.5mg. I feel the worst at 0.5mg just like when I first started! I will print your information out for my April 9 appt.

Kimberly wrote:

Hello and welcome! We are fellow patients here, not docs, but a couple of thoughts that would be good for discussion with your doc on Tuesday…

1. Keep in mind that it’s important for your doctor to base dosing decisions on Free T4 and T3 and *not* on TSH, which can remain suppressed for quite some time in Graves’ patients. Dosing off of TSH alone can potentially produce hyper/hypo swings.

2. Some patients are VERY sensitive to small changes in Methimazole dosing, so you might discuss the option of alternating doses every other day. As an example, at one point, I was taking 5 mg of Methimazole 5 days a week and 7.5 mg two days a week. Definitely a weird dosing schedule, but that’s what it took at that point to keep my labs in line.

All three of the treatment options have risks and benefits…the “Treatment Options” thread in the announcements section of this forum has two great links that go through the pros and cons. This board also has a search function (in the top right-hand corner of the screen), so you can run a search for “RAI”, “thyroidectomy”, “surgery”, etc. to read stories from other patients.

Hopefully, you have a doc who will spend time with you and answer all of your questions on Tuesday as you make this difficult decision.

[fishman April 5, 2013 at 2:29 pm Post count: 18]

#1177890

Great Idea! I’m not liking this methimozole my self and been on it for a year! Thanks for the info! I have all my blood work saved. I get copies everytime I go back to the endo for recheck.

mwhitney wrote:

I got diagnosed 5 weeks ago and already hit the wall with the medication, I wasn’t even able to try another one, because of my reaction to it.
And today I decided to do the RAI. I realize neither option sounds like a fun time. Both for me have risks, but for me the RAI has less risks than surgery.
I was really hoping for more time, but sometime’s that fork in the road shows up.

If it makes you feel better or you have tons of questions, you can always call your local hospital’s nuclear medicine department, That’s what I did this afternoon when I made my appt. for my RAI treatment. I was able to talk to their guys there’s and ask all the questions I wanted, they didn’t seem to mind and I talked to several people working in the department a nuclear tech, and even their nuclear scientist , they were actually happy that I wanted to share my concerns and thought I was asking valid questions, since they work day in and out they’ve seen everything. I felt a lot better after picking their brains, so I feel like I’m that scared anymore.

Hey it’s an idea, I thought they were pretty helpful today.

[fishman April 5, 2013 at 2:32 pm Post count: 18]

#1177891

I should of been hear a long time ago!!! What is “TED” I’ve heard good things about the RAI. The doctor is usually not there lately and I talk to the ARNP. She’s the one that told more about not eating seafood and the diet I should be on and the doctor never told me? I lost about 25 pounds from GD/Hyper.

adenure wrote:

Hi Vince!

The best thing to do is research all the options and then go with your gut feeling (as long as your doctor is on board). It sounds like you’re leaning towards choosing something more definitive like RAI or surgery as the methimazole has you up and down a lot.

If RAI feels right for you, then go for it. If surgery feels right for you (and your doctor thinks you’re a good candidate), then go for it. I opted for surgery for a bunch of reasons. I had my thyroidectomy 8 months ago and I am doing well. I’m much healthier physically, emotionally, and mentally now that my thyroid levels are stable (on Synthroid). It’s really a relief to be normal again. I chose surgery because I have a family (4 young children) and didn’t want to be away from them for a week. I also wanted to keep breastfeeding my baby. I was worried about eye issues (even though I don’t have any TED that I know of). I also didn’t want to wait for my thyroid to die out and have a dead gland hanging out in my body. Not really a good reason to avoid RAI I guess, but that’s how I felt. I also kind of wanted to get things moving forward as quickly as possible. Now, it did take 2 months to get my thyroid levels normal on Synthroid (one dose change at 6 weeks post op.) and 2 more months on that dose to start to feel really good again. So, all in all a good 4 months there. But, it was worth it.

Do the research (avoid the websites with thousands of horror stories- I spent many night crying and freaking out about the “what if’s”). Make the right choice for you. It will get better.

[fishman April 5, 2013 at 2:34 pm Post count: 18]

#1177892

When are you doing your RAI? Keep me informed! I know everyone is different. But I’m really thinking about it. One day at a time! But lately this GD/Hyper has been affecting everything in my life!!!! ;(((((

mwhitney wrote:

I got diagnosed 5 weeks ago and already hit the wall with the medication, I wasn’t even able to try another one, because of my reaction to it.
And today I decided to do the RAI. I realize neither option sounds like a fun time. Both for me have risks, but for me the RAI has less risks than surgery.
I was really hoping for more time, but sometime’s that fork in the road shows up.

If it makes you feel better or you have tons of questions, you can always call your local hospital’s nuclear medicine department, That’s what I did this afternoon when I made my appt. for my RAI treatment. I was able to talk to their guys there’s and ask all the questions I wanted, they didn’t seem to mind and I talked to several people working in the department a nuclear tech, and even their nuclear scientist , they were actually happy that I wanted to share my concerns and thought I was asking valid questions, since they work day in and out they’ve seen everything. I felt a lot better after picking their brains, so I feel like I’m that scared anymore.

Hey it’s an idea, I thought they were pretty helpful today.

[Gabe April 5, 2013 at 4:29 pm Post count: 182]

#1177893

Hi fishman. I’m so glad I found this site early after my January 2013 diagnosis. I’m already hating Methimazole. My mood swings are horrible and I think it’s the combo of Graves, Meth, and beta blocker (and an occasional Xanex to gain some sleep/control!). Don’t know how you guys on meth have done it, did it, or continue to do it as long as you have.
My sister did RAI and had a great experience. I’m leaning to TT and have the consult scheduled. I’m concerned about the impact of RAI on eye involvement and I want to guarantee its gone since RAI sometimes doesn’t work the first time or could take many weeks to work
That’s me and my dilemma. I wish you the best!
Karen

[fishman April 5, 2013 at 4:37 pm Post count: 18]

#1177894

Yes! I’m using Xanex as well to gain control and sleep! Thanks for the info! How do I relate this post to a new one? I want to obtain great questions from members for my doctor I’ve been seeing for a year, which is next Tuesday!! Thinking I should should get a second opinion? etc……

Gabe wrote:

Hi fishman. I’m so glad I found this site early after my January 2013 diagnosis. I’m already hating Methimazole. My mood swings are horrible and I think it’s the combo of Graves, Meth, and beta blocker (and an occasional Xanex to gain some sleep/control!). Don’t know how you guys on meth have done it, did it, or continue to do it as long as you have.
My sister did RAI and had a great experience. I’m leaning to TT and have the consult scheduled. I’m concerned about the impact of RAI on eye involvement and I want to guarantee its gone since RAI sometimes doesn’t work the first time or could take many weeks to work
That’s me and my dilemma. I wish you the best!
Karen

[Gabe April 5, 2013 at 4:55 pm Post count: 182]

#1177895

I don’t know how to relate posts to new ones so what I do, since I mostly read/post on my iPad, is copy and paste anything I find interesting in tany article or any post into a ‘memo’ and then I organize from there. I bet if I printed it out today it would be a small book since I copy so much from this site or articles.
I would also recommend watching some of the YouTube videos that GDATF posted from their last conference…very informative.

I’ve only seen my endo once so I can’t judge whether he’s working for me since I was so dazed and confused during my visit that I didn’t even know what to ask. Now I’m armed and ready! In the meantime I have a great primary care doc who answers all my questions and encourages me to participate in my care and treatment options.

[KimberlyOnline Facilitator April 5, 2013 at 7:34 pm Post count: 4294]

#1177896

Hello – In terms of bringing documentation to your doctor’s office, I would suggest printing the couple of pages on Anti-Thyroid Drugs from the link in the “Treatment Options” thread that talks about the importance of NOT relying on TSH. Your doc will probably be more inclined to look at that, since it comes from two well-known medical agencies.

TED = Thyroid Eye Disease…if you don’t have any eye issues right now, that is a blessing! Symptoms can range from the mildly annoying to the very serious (dryness, bulging, double vision, swelling, grittiness, etc). If you do start experiencing eye symptoms, you will want to visit an ophthalmologist who can guide you through this process.

Gabe mentioned our YouTube videos; you can find them here:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.youtube.com/user/GravesAndThyroid

As for diet, you will hear all sorts of conflicting recommendations. Most docs will recommend avoiding major sources of iodine, such as supplements and the seaweed wrap that comes with sushi. Some patients will choose to cut back further on sources of iodine. The thyroid uses iodine to make *more* thyroid hormone…so going overboard when we are hyper is like throwing gasoline on a fire!

[fishman April 6, 2013 at 11:14 am Post count: 18]

#1177897

I’ve added to my 1st new post and also feel the same symptoms as flora does!
I still feel at least as awful – maybe even worse – with the mornings especially bad. Along with the insomnia, nervous shakiness, some sweats, the muscle and joint aches are bothersome – mainly lower back, buttocks (?!), legs, hips, knees. And ( real drag), I have much reduced strength and stamina – carrying groceries from the car is a major effort. I seem to have gone from an energizer bunny to weak as a puppy. It’s really hard to push myself through the day, and to try and stay cheerful around family and friends. I’ve been up and down on this medication for a year! But the 5 mg does make me feel the worst. Hopefully I decision will be made at my Endo this coming Tuesday! I’ll take all the advice I can right now and Have printed out Info from Kimberly and others and thanks to all who are helping! I should of been here months ago!

[fishman April 7, 2013 at 7:14 am Post count: 18]

#1177898

Two more days!! I have so many questions to ask the Doctor. I’m really ready for a change after this long year of medication! I will follow up next week! I’m Living life, but I want to feel better and not all over the place anymore!

fishman wrote:

I’ve added to my 1st new post and also feel the same symptoms as flora does!
I still feel at least as awful – maybe even worse – with the mornings especially bad. Along with the insomnia, nervous shakiness, some sweats, the muscle and joint aches are bothersome – mainly lower back, buttocks (?!), legs, hips, knees. And ( real drag), I have much reduced strength and stamina – carrying groceries from the car is a major effort. I seem to have gone from an energizer bunny to weak as a puppy. It’s really hard to push myself through the day, and to try and stay cheerful around family and friends. I’ve been up and down on this medication for a year! But the 5 mg does make me feel the worst. Hopefully I decision will be made at my Endo this coming Tuesday! I’ll take all the advice I can right now and Have printed out Info from Kimberly and others and thanks to all who are helping! I should of been here months ago!

[fishman April 8, 2013 at 2:33 pm Post count: 18]

#1177899

I have printed them and bringing them to the doctors tomorrow morning with me and have the questions ready! I also confirmed to make sure I see the Doctor as well as the RLNP as well at the same time! I’m praying for good news tomorrow since It’s been a year for me now on meds!

Kimberly wrote:

Hello – In terms of bringing documentation to your doctor’s office, I would suggest printing the couple of pages on Anti-Thyroid Drugs from the link in the “Treatment Options” thread that talks about the importance of NOT relying on TSH. Your doc will probably be more inclined to look at that, since it comes from two well-known medical agencies.

TED = Thyroid Eye Disease…if you don’t have any eye issues right now, that is a blessing! Symptoms can range from the mildly annoying to the very serious (dryness, bulging, double vision, swelling, grittiness, etc). If you do start experiencing eye symptoms, you will want to visit an ophthalmologist who can guide you through this process.

Gabe mentioned our YouTube videos; you can find them here:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.youtube.com/user/GravesAndThyroid

As for diet, you will hear all sorts of conflicting recommendations. Most docs will recommend avoiding major sources of iodine, such as supplements and the seaweed wrap that comes with sushi. Some patients will choose to cut back further on sources of iodine. The thyroid uses iodine to make *more* thyroid hormone…so going overboard when we are hyper is like throwing gasoline on a fire!

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