Graves

[jkiki]

Hi i was diagnosed a year ago with hyper thyroid i was given drugs for the thyroid high blood pressure (which i did not have before) and blood thinners.
Now i am diagnosed with graves disease.
I am under the care of my family Doctor, an endocrinologist.heart specialist.
oprhalmologist all of whom i see once a month.
I have an irregular heartbeat and the thyroid hormones pressure my optical nerves my eyesight is getting worse.
The cardiologist will "jumpstart" my heart to make my heartbeat regular.
After this procedure i am thinking of removing the whole thyroid gland.
Anyone with similar experience i would like to hear about it so i can make an educated decision based on patients experiences from regular people.
Thank you
jkiki:)

[NastyHashi]

You sound like a candidate for thyroid surgery or RAI ablation. You really need to be careful and maybe read up on TED (Thyroid Eye Disease) which is very common in people with Graves but from what I understand, it can be reversed. It usually starts with eyes bulging (like bug eyes).

If you are already experiencing a few problems with your heart, I am surprised your docs have not mentioned getting rid of the gland once and for all.

[jkiki]

Hi NastyHashi
Thank you for your post it is helpfull. the endocrinologist ( thyroid doctor) sent me to cardiologist after pestering her in every visit since i take my blood pressure every morning the monitor shows me irregular heartbeat every time.
Now for 3 Tuesdays i will have my blood tested for INR levels and if they are o.k. the Hospital will proceed with the "jumpstarting" of the heart.
Take care

[mikej2007]

I have graves....I didnt even know I was sick until I had routine blood levels done...my levels were wicked high and the doc sent me to an endo...well the endo ordered up a radiation uptake test and ultrasound. They found 2 nodules. I opted for the RAI treatment...DO NOT let anyone tell you that you wont feel any effects. For 2 weeks I was really sick...had to be on heart medication because when the thyroid dies it dumps all its hormone in to your blood stream. My heart was a mess...beating so fast I couldnt breathe...then my body temp was insane...one minute extremely hot the next freezing. Then on top of that my neck hurt so bad I went to the ER. I still do not know if I made the right decision...I was able to gain 30 lbs in 3 months. Going from 130 to 160 was good for me considering im a 33 yr old male whos 5 foot 10. Be really careful which doc takes care of you post abatement. My endo doc almost killed me letting my levels get 3 times above what they should have been and my body was absolutely starving for hormone.

[Bopeep]

I had my thyroid surgically removed 8 years ago and have never felt better. Panic attacks disappeared, and I am very stable. It was the best thing I did for myself after 18 years of periodic bouts of overactive thyroid.

[witchycat]

HiAll,
My name is Ginger and I am new to the group here.
I just found out just a few months ago I have Graves Disease.
I Got sick with a cold back in Dec. that lasted for 2 weeks and being I also have Fibromyalgia I didn't think much till Feb. when I lost so much weight and wasn't getting any better.
My PCP did test then sent me to an Endro doc and at that time I was so bad that he put me on a beta blocker and had to end up putting me on Propylthiour 50 mg 2 four times a day. I'm now off the beta blocker but do take xanax for my anixity which my pcp has had me on even before the Graves was found. I am feeling better and have gained from being 97lbs in Feb to around 105 now and don't seem to have the heart racing I was having.
I have seen the eye doctor since my eyes are swollen due to the graves but the eye doctor right now don't think it will get any worse which is good news.
The eye doctor gave me some eye drops for during the day which can be gotten over the counter and also had me get a eye gel for at night. I also try to keep myself propped up to help reduce the swelling but some days are still worse than others.

I just saw my endro doctor Friday and he is sending me to a surgeon to have my thyroid removed. I'm am waiting to hear when my appointment with the surgeon will be.
What I would like to know is what to expect from it being removed.
From what they are talking about right now is removing all but a little bit of tissue....
I have googled for information which is how I found this message board. :D
It really would be nice hearing from others who has had this done and what they went through after having the surgery so I will know more of what to expect.
I know the surgery isn't going to get rid of the graves being it's an auto immune but knowing just how the surgey will effect it would be nice.
I live in Arkansas so there are no support groups here that is known of for people with Graves disease so it's nice to know that I can communicate with others that have the same thing and can understand what I'm going through.
:)

[cheriblondie]

Hello, you and I must be two peas in a pod. Back in July of last year I was diagnosed with Fibromyalgia myself. However I never felt normal. About 4 years ago they I was told I had Hashomoto's Hypo thyroidism. This last year had been awful for me and considering that I am in my thirties I just though I was imagining all of the symptoms; I thought I am too young. Finally about several months ago my symptoms became too much and after several misdiagnoses they determined that I had Graves ‘disease. I to will be having a Thyroidectomy and I will also have my heart shocked. The doctor has told me that this is called congestive heart failure. This condition is supposed to be able to be reversed. So while we have surgery they will shock our hearts to give us back a normal sinus rhythm. I gained weight a couple of years ago and have not been able to get it off. However, these last six month I did start to lose weight, but it came at a price. I lost my muscles to. Someday I can hardly walk, or lift my head. I have made jokes with my children telling them that mommy has batman wings now, instead of muscles. My eyes also look so different and they are very painful. These last few weeks I have been unable to drive, so my father has come to stay with me and helps me with my children. RAI is not the answer for me because it can actually cause the eyes to get worse. I can't give you any information about the surgery, because I myself have not done it yet. However, I can be a friend going through the exact same thing as you. I hope it helps knowing you are not alone in this.;)

[witchycat]

It sure sounds like you and I have very close to the same experiences.
I can look back now and know I had Fibromyalgia a long time back when i was in my 20's and even possibly in my teens before I found a doctor who could tell me that is what I had in my 30's and I will turn 41 in august.
It just seemed that every year kept getting worse and all the doctors and specialist I saw during that time just never had a clue...

A friend of mine kept telling me I was having problems with my thryoid all through my 30's but since nothing ever showed up when they did the testing it went undiagnosed till it finally got so bad enough to show on the testing.

My eyes too are effected by the graves which is why I can't have the RIA either. It does make driving harder for me which is why I was trying to teach my 16 yr old how to drive so he would be able to do most of it when he was home. Some days I can't even stand to try and read let alone watch tv cause it hurts my eyes. I know how aggrivating that can be... i have actually put on my sun glasses at the computer just to read emails...lol

I can really relate to how your feeling and how hard it is when you have younger childern and being sick yourself all the time.
My youngest is 16 and the only one left at home but it's still not easy for him.

Back in early Dec06 I was weighing 137lbs and by Feb07. I was 97lbs. I have lost some muscle mass as well and even though I have been on the ptu I've only gained back up to on a good day 108 most of the time I've been around 104 to 106. My normal weight should be between 110 to 120 and over the years I have been up to as much as 150.
I'm also almost completely gray headed now and have been covering my gray since my early twentys. I got my first gray hair in my late teens.

I don't seem to have the congestive heart failure just the abnormal heart rate that comes with the Graves and for the most part now that hasn't been a big problem after they had me on beta blockers for a bit.
It also helps that I'm on the generic for xanax so that helps keep my anixity/panic attacks down which also keeps the heart rate down some as well.
I have noticed that even though the test show my more on the hypo side now i'm having some heart racing at times but it seems to go back down on it's on for now. At my endo appointment my heart rate was 112 which was down from that morning of 122 so the xanax and me not having to try and drive my car that the transmission is almost gone in.
I'm going in May 23rd for my surgery to have the TT done.
I have done a lot of researching on my own but I know bottom line is what is best for ourselves and our familys.
I hope to keep in touch and will let you know how my surgery goes and how things are working out after me having it done.
I'm hoping for the best. I know the fibro makes it harder with other things but I also keep in mind that there has to be something that I am to learn from all of this. : )
I would really like to keep in touch and I sure hope you get the treatment and get to feeling better as well.
If you wish you can email me off the message board at gcsimmons@gmail.com

Take care and it's nice to meet you.

[witchycat]

That is great to hear bopeep.
I'm having my thyroid removed the 23rd of this month.
I'm hoping that I will feel so much better as well.

Ginger

[army wife]

Hello, I too am new to this, I found out about 3 weeks ago I have Hyperthyroid, then last week I was told I have Graves, I have lost 24 lbs in the past month, my eyes feel as if they're going to explode out of my head, I have terrible headaches and stay moody and sad all the time, I feel as if I'm losing control. The doc. put me on Atenolol to help with the racing heart, it's healping so far. But as of this date I still haven't been put on any meds for the Graves. I go next week for the Iodine Scan, maybe then he can tell how bad it is.
My brother also has Graves, thyroid runs in my moms family. I have a question and I'm hoping someone can answer it for me. I have had several people tell me that once you have Graves, you can no longer work at your job. My brother had to go on disability, his was so severe he could no longer work, is everyone like this? I will go crazy if I don't have a job to keep me busy.

[GD Women]

Army Wife,

I don't know where those people got the idea you can't work once you have Graves'. As far your brother perhaps something else is going on with him. Its not Graves' that plays havoc with us but the hyper side of it, in which is what causes symptoms that we are treated for. Some people just blames and uses thyroid as an excuse for everything. I'm not saying that your brother is, however there a lot of others who do.
I have had Graves' and treated with RAI going on 11 years. I know of other who have Graves' even longer and we are all living great lives. Heard of a women who had 6 beautiful healthy happy babies after her RAI for Graves'. Don't let rumors or scare tactics get to you, because thats all they are..

[alta]

Hi Everyone,
I was diagnosed today with graves, I've only known for 12 days that I was hyper, However my ex-husband was diagnosed 10 years ago,,,he took RIA and he is still working today.