New to Graves

[jsgarden1]

Hi,

My name is Debbie, 49 from New York. I just had my first visit with an Endo this past week. My GP sent me to him after blood work came back she had ordered.

I actually didn't know what questions to ask, as this is all new to me. My doctor thought I had hyperactive thyroid, but the Endo said Graves. The only thing I know at this point is that my TSH was undetectable in the blood work. He has me going for bloodwork with 11 tests to be run on it. I will know more what to ask at my next appt. October 20. I put some of my symptoms down to possible pre menopause (heart palps, sweating etc) Come to find out it's thyroid! No one in my family has ever been diagnosed so this really is completly new.

I have learned a LOT reading this board and I thank everyone for that! I hope to be able to post my numbers and what the doctor says here so that if I miss anything you guys will be able to give me ideas of what to ask. He only said at the appt that every case is different and they usually try a year on meds before RAI or removal. They do that on a case by case basis. Does anyone here have problems with their eyes because of Graves? He measured my eyes and when I asked about it he said most people run 14 or 15 (not sure if it's millimeters or not) Mine are 20 and 22 (bulging some..not a lot) I'd be interested in knowing if treatment helped your eyes. (When he tested me by watching his finger come toward me I did see double, and I didn't even realize that was happening.)

Debbie

[nasdaqphil]

Hi Debbie,

If your TSH test was accurate and undetectable, you probabvly do have Graves'. There's a ton of info on the net and on here about it. Read up.

You will probably be given some methimazole (Brand names: Tapazole, Northyx) to help slow your thyroid down. If you've got a fast heart rate as a result of the Graves' they might give you some Propranolol to help slow the heart to a more normal level.

Ultimately, many Graves' patients opt for RAI (radioactive iodine ablation). You can search online as well for RAI or Radioiodine I-131.

The docs will probably start with a nuclear uptake scan or RAI uptake test to see how active your gland is.

Do lots of research and if you've got questions, ask others here who have already been there. Just don't make any major decisions without knowing your options first. Pry as much info as you can from your doctors.

[Andros]

Hi,

My name is Debbie, 49 from New York. I just had my first visit with an Endo this past week. My GP sent me to him after blood work came back she had ordered.

I actually didn't know what questions to ask, as this is all new to me. My doctor thought I had hyperactive thyroid, but the Endo said Graves. The only thing I know at this point is that my TSH was undetectable in the blood work. He has me going for bloodwork with 11 tests to be run on it. I will know more what to ask at my next appt. October 20. I put some of my symptoms down to possible pre menopause (heart palps, sweating etc) Come to find out it's thyroid! No one in my family has ever been diagnosed so this really is completly new.

I have learned a LOT reading this board and I thank everyone for that! I hope to be able to post my numbers and what the doctor says here so that if I miss anything you guys will be able to give me ideas of what to ask. He only said at the appt that every case is different and they usually try a year on meds before RAI or removal. They do that on a case by case basis. Does anyone here have problems with their eyes because of Graves? He measured my eyes and when I asked about it he said most people run 14 or 15 (not sure if it's millimeters or not) Mine are 20 and 22 (bulging some..not a lot) I'd be interested in knowing if treatment helped your eyes. (When he tested me by watching his finger come toward me I did see double, and I didn't even realize that was happening.)

Debbie

Hi, Debbie. I am sorry to hear you have Graves'. I too, have Graves'. I had very very serious GED (Graves' Eye Disease) but eventually got things on the run.

You should know that treating the thyroid does not necessarily treat the eyes so I therefore recommend that you see a Board Certified Ophthalmologist at your earliest opportunity for there is much to be done to stave off and even stop the progression of GED.

It sounds like your doctor is on top of things on your behalf and clearly he/she has had experience w/ Graves' Disease patients so that is most reassuring.

As in a previous post, you will probably be put on an anti-thyroid med and a beta-blocker to slow your heart rate down.

Please feel free to ask any questions you may have.

Andros

[jsgarden1]

You will probably be given some methimazole (Brand names: Tapazole, Northyx) to help slow your thyroid down

Thank you for your answer, I am taking methimazole 10 mg. right now. He had me go for a blood work while I was at his building (a non-fasting one) and his office called and said the 10 mg. until I see him again. I'm thinking from what I'm reading that that is a low dose? And Andros, the doc did recommend seeing an opthamologist as soon as I can, so I'm glad to hear you say that is a next step. I have heard from a lot of people that this doctor is very thorough.

Thank you both for being so kind, I really appreciate it.

Debbie
:)

[Andros]

You will probably be given some methimazole (Brand names: Tapazole, Northyx) to help slow your thyroid down

Thank you for your answer, I am taking methimazole 10 mg. right now. He had me go for a blood work while I was at his building (a non-fasting one) and his office called and said the 10 mg. until I see him again. I'm thinking from what I'm reading that that is a low dose? And Andros, the doc did recommend seeing an opthamologist as soon as I can, so I'm glad to hear you say that is a next step. I have heard from a lot of people that this doctor is very thorough.

Thank you both for being so kind, I really appreciate it.

Debbie
:)

Debbie; you touched a soft spot in my heart. I am of the belief that kindness/caring and love is as important to healing as medical intervention and knowledge.

I am most glad that you are going to see an ophthalmologist and I will be anxious to hear all about it.

In the meantime, if you have any further questions, feel free to fire away!

Andros

[Andros]

Hi,

My name is Debbie, 49 from New York. I just had my first visit with an Endo this past week. My GP sent me to him after blood work came back she had ordered.

I actually didn't know what questions to ask, as this is all new to me. My doctor thought I had hyperactive thyroid, but the Endo said Graves. The only thing I know at this point is that my TSH was undetectable in the blood work. He has me going for bloodwork with 11 tests to be run on it. I will know more what to ask at my next appt. October 20. I put some of my symptoms down to possible pre menopause (heart palps, sweating etc) Come to find out it's thyroid! No one in my family has ever been diagnosed so this really is completly new.

I have learned a LOT reading this board and I thank everyone for that! I hope to be able to post my numbers and what the doctor says here so that if I miss anything you guys will be able to give me ideas of what to ask. He only said at the appt that every case is different and they usually try a year on meds before RAI or removal. They do that on a case by case basis. Does anyone here have problems with their eyes because of Graves? He measured my eyes and when I asked about it he said most people run 14 or 15 (not sure if it's millimeters or not) Mine are 20 and 22 (bulging some..not a lot) I'd be interested in knowing if treatment helped your eyes. (When he tested me by watching his finger come toward me I did see double, and I didn't even realize that was happening.)

Debbie

I was reading your story and thought I would inquire as to how you are doing? You must be a few weeks into taking the antithyoird med? Yes?

And I hope you have seen a Board Certified Ophthalmologist for those eyes of yours?

If you are around, please let us know how you are faring.

[jsgarden1]

Hi Andros,

I am indeed still around and checking the boards for people with problems like mine :confused0064:

I have been 3 weeks on the metha..lol...I can't remember the spelling. I truly don't see a difference in how I feel. If anything, it seems that my heart is racing more than it was. I hate the feeling of sitting down and my heart pumping like I was in a marathon. It's been doing this for 6 days straight. My appt. is Oct. 20. I keep telling myself to just wait and see the doctor at my appt. but this pounding and skipped beats is driving me crazy! My eye appt is Oct. 29, it seems awfully hard to get an appt. around here for anything!


Thanks for asking
Debbie
I'll keep checking in :)

[jsgarden1]

As an update, I ended up calling the doctor, my heart is driving me crazy. All I did was run the vacuum in a bedroom, and I felt like I had run a 5 mile race. It almost seems like my chest is sore..how weird is that?

He is calling in a beta blocker for me to start tonight. It will be 1/2 to 1 pill depending on how I feel. I'll certainly start with 1/2 and see what happens. He said to give it a couple of days (although he said I should feel a difference once the first pill is in) if it hasn't helped I have to call him back.

I was born with a heart murmur and I still have it. I wonder if that makes it any worse? He did ask me at my first appt. when he went to listen to my heart if I knew I had a heart murmur and if it has caused me any problems I'll have to ask further on this at the next appt.

Debbie

[Andros]

Hi Andros,

I am indeed still around and checking the boards for people with problems like mine :confused0064:

I have been 3 weeks on the metha..lol...I can't remember the spelling. I truly don't see a difference in how I feel. If anything, it seems that my heart is racing more than it was. I hate the feeling of sitting down and my heart pumping like I was in a marathon. It's been doing this for 6 days straight. My appt. is Oct. 20. I keep telling myself to just wait and see the doctor at my appt. but this pounding and skipped beats is driving me crazy! My eye appt is Oct. 29, it seems awfully hard to get an appt. around here for anything!


Thanks for asking
Debbie
I'll keep checking in :)

I am surprised the doctor did not put you on a beta-blocker to calm your heart. Wonder if you should make a phone call about this?

Glad you have the appts. lined up (especially for your eyes) but do please call about a beta-blocker. It really is not good for your heart to be doing that.

What starting dose of Methimazole did the doc put you on?

You will find out I am a real worry wart, Debbie. So.......if you check in, I will appreciate that.

[Rita]

Hi Debbie,

My story is almost identical to yours. I turned 50, started having heart palpiations, heart skipping beats, sweating. I also had tremors and would get extremely hunger. I thought menopause.

I fianally decided to see my doc. I have a proplapsed mitral value so my doc was siding toward heart disease...that is until he got my lab results. TSH was 0 and FT3 and FT4 were about 4 times the normal range.

I then was referred to an Endo. Had all the thyroid tests which confirmed Graves Disease. He started me on metham(?)...Seem to be feeling aliitle better. Heart still races but its down to about 105 from 125. Shaking isn't as bad (at least I can do my job now).Next appointment is in a few weeks to see how the drugs are doing.

I don't feel so alone anymore. Thanks for letting me share. Turning 50 wasn't such a good thing!

[Andros]

Hi Debbie,

My story is almost identical to yours. I turned 50, started having heart palpiations, heart skipping beats, sweating. I also had tremors and would get extremely hunger. I thought menopause.

I fianally decided to see my doc. I have a proplapsed mitral value so my doc was siding toward heart disease...that is until he got my lab results. TSH was 0 and FT3 and FT4 were about 4 times the normal range.

I then was referred to an Endo. Had all the thyroid tests which confirmed Graves Disease. He started me on metham(?)...Seem to be feeling aliitle better. Heart still races but its down to about 105 from 125. Shaking isn't as bad (at least I can do my job now).Next appointment is in a few weeks to see how the drugs are doing.

I don't feel so alone anymore. Thanks for letting me share. Turning 50 wasn't such a good thing!

Hi, Rita and welcome to the board. So, are you on a beta blocker with the Methimazole as well??

I also have a mitral valve prolapse and I am certain it is from untreated Graves'. Many Graves' patients have ended up with this sort of heart damage.

[jsgarden1]

Hi Rita,

Nice to "meet" you. Wish it were under better circumstances! You really do sound a lot like me and my 50th is next week on the 14th of Oct.

I went for bloodwork this past Monday (11 different tests) and go to see the endo on Oct. 20th. I'm hoping by then I can learn more of what is going on. I am taking methamazole 10 mg once a day right now. I am also taking something to slow down my heart. I'm only taking it as needed right now, as my palps aren't constant. I'm seeing that they get bad when I'm upset or worried, like my body is doing a fight or flight type thing. I'll ask the doctor about how I'm taking them when I go. I hate taking any kind of pills!

Keep in touch on here, it's nice to know there are others going through this.

Debbie

[Rita]

I have to admit....I am enjoying the weight loss. The other side effects are not fun. After doing research on Graves disease, I have every symptom mentioned.

The bets-blockers have slowed my heart rate down and has reduced some of my other symptoms. One question I do have, what happens to your body if this is left untreated. I am having a real difficult time dealing with this new diagnosis.

[Andros]

I have to admit....I am enjoying the weight loss. The other side effects are not fun. After doing research on Graves disease, I have every symptom mentioned.

The bets-blockers have slowed my heart rate down and has reduced some of my other symptoms. One question I do have, what happens to your body if this is left untreated. I am having a real difficult time dealing with this new diagnosis.

Actually; you could be in dire straits. You could have a Thyroid Storm, Vascualar collapse, heart-attack and a myriad of other very serious life-threatening problems not to mention psychosis.