[fishman]

in reply to: My April 9th 2013 Results 1 year later #1178353

Yes! I’m keeping track of my labs! The end of January my results were off and they improved this month. Using TSH cause my T4 and T3 are in-range now and My TSH just needs to boost some. In January my TSH was higher and we reduced the medicine. You also can’t believe everything you read on line?! They teach that in the medical field as well. I do know that I am improving so far and my labs comes from Quest! I will ask her the questions if I see a change in my T3, T4 next time. Thanks…

Kimberly wrote:

Hello – Keep in mind that different labs can use different “normal” ranges, so the actual numbers are only useful in the context of your lab’s range. Are you right in the middle? At the upper end? The lower end? And where are you compared to your last set of labs?

Any reason why your doc selected a specific target for TSH? The medical guidance from the American Thyroid Association and American Association of Clinical Endocrinologists (which you can find in the “Treatment Options” thread) recommends using Free T4/T3 to make dosing decisions with Methimazole. I would at least ask the question to make sure you understand her recommendations and the reasoning behind it.

Take care!

[fishman]

in reply to: My April 9th 2013 Results 1 year later #1178352

Thanks to all! Not there yet! But it was a long year so far! Go back in 3 months and hopefully I can chop these 5mg in half!

[fishman]

in reply to: new user 1 year #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!

[fishman]

in reply to: What Triggers GD?? #1178089

Sounds good! I feel worst eating the dairy products too and junk! Does anyone have suggestions for a better Breakfest, Lunch, Dinner and snacks that helps them eat better. I’ve heard eating better does help you go into remission faster! I’m looking forward to my Appointment tomorrow and will be discussing the options, hopefully almost in remission now its been a year or Going for the RAI.

[fishman]

in reply to: What Triggers GD?? #1178085

I also live a busy lifestyle so I was more thinking about packing things with me like some fruits and things that I could take with me and start a routine of a good morning to night meals and snacks instead of making it more difficult.

Example: bananas in the am with something, something for lunch, dinner and some snacks and still be good with the nutrients on a average daily day!

[fishman]

in reply to: What Triggers GD?? #1178084

I never thought that in the Vitamins. Yes! My complete multi vitamin has 150mcg Iodine (as potassium Iodine) I didn’t take one this weekend yet.

[fishman]

in reply to: Another newbie #1177992

The 5mg makes me all over the place! You were smarted then me to join faster then I have! I’ve been taking the meds for a year now and wished I came here a while ago. Cause I feel better that others feel like me, when I though I was just all over the place with life! I’m going back to the Doctor Tuesday hopefully to be going into re-misson? or setting up the RAI. At least I can asked her more dosing questions from being here only a few days after a long year! I also had to get Alprazolam to take 2x/day with taking my methimazole. Not sure if its working, does help me sleep. I toss and turn all the time! I will post my result next week! I really want off this medication!

[fishman]

in reply to: new user 1 year #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]

in reply to: new user 1 year #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]

in reply to: Another newbie #1177986

I’m been feeling the same way! I have been on Methimazole for a year now and have been increased on the medication and now back to the start of my original dose of 5mg. I felt that way on the lower dose in the beggining, then got better as we increased it. Now that I’ve been back on 5mg, I feel worse, my body is all over the place. Mornings are always bad for me too! I go back to the doctor April 9th. I’m really leaning towards the “RAI” cause my life feel like a mess. I’ve been feeling really depressed lately and I feel your pain. Now I’m just hoping to make this decision, it works and save my relationship/Love with my best friend! My stomach always feels like I’m on a roller coaster! Most worst times I feel like just laying around and not doing anything.

flora wrote:

Hello, and thanks for this great forum. I’m feeling pretty terrible right now, and it’s good to have this place to turn to. After six stressful months (family illness, etc.), and thinking at the time that the symptoms I was experiencing were all “just stress”, I finally went to my doctor, and got diagnosed as hyperthyroid on March 5th. Since then, I have be taking the prescribed 5 mg of Tapazole once a day, but after 33 days, 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.
On April 2nd , my TSH was re-checked, and although the doctor has received the report, I can’t get in to see him till the 19th, which seems like an eternity, feeling this terrible. So, in the meantime, may I ask a few questions? Has anyone else’s experience has been similar to mine? Is it typical, for some of us any way, to feel as bad/or worse, after a month of medication? How long can it take to feel any better, at 5 mg of Tapazole a day? Any tips on how to hang tough, for such a discouraged newbie as I am? Hope to hear some encouraging words, and again, thanks for this wonderful forum.
Flora

[fishman]

in reply to: new user 1 year #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

[fishman]

in reply to: new user 1 year #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.

[fishman]

in reply to: new user 1 year #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]

in reply to: new user 1 year #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]

in reply to: new user 1 year #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.

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