Graves disease and death

Common Questions and Answers about Graves disease and death

graves-disease

It can be properly managed if you have it, and is not a death sentence or anything. Most ppl go into remission for yrs and yrs.
As for the natural 'way', I have never come across anyone who has succeeded in 'controlling ' Graves with natural therapies alone. If you do have Graves Disease and Hyperthyroidism, you are at high risk of thyroid storm (atrial fibraillation) if not on anti-thyroid medications which can result in a massive heart attack or even death. I am not trying to scare you in anyway...but please research Graves Disease as much as you can.
Most everyone with Graves' disease is initially hypothyroid and it's usually not mild. Some people develop GD after being overtly hypothyroid and on thyroid replacement hormone for several years. A person could go into spontaneous remission, but how long will it take ? it could take years and how much damage will it do to your system before remission is achieved? Years ago before there was treatment 50% of people died of Graves'. Do you want to take that risk?
I am a 45 year old female who was diagnosed with Graves Disease in Jan 2006 and have been treated successfully with PTU ever since. My lastest blood work came back with a TSH level of 0.73 mUnit/L (the only test my current endocrinologist will run.) Last week while on vacation, I started noticing my hands and feet going numb. The large toe on my left foot is numb most of the time, and at times painful. I am waking up night with my hands, feet, arms, and legs tingling.
I have so much chest pain and I know it is associated with Graves disease. I have a new endocronologist she is the greatest. I am on Tapazole and Lopressor and I think that this will be what I will be on for the rest of my life. I am hoping that my Graves disease goes into remission but I know this may be with me forever so I'm trying to deal with the best I can. I have an appointment on 5/19 to talk about my lopressor dosage so hopefully I can only take one a day. That's it for now.
Elaine Moore tends to believe that immunotherapy (allergy shots) makes Graves Disease worse, and can possibly bring on the Graves Eye Disease. She recommends that allergies be treated with the cortisone-type nose sprays and antihistimines instead, because of the nature of an autoimmune disease. I was about to start shots, but now I am reconsidering. Does anyone have information on this subject? Thanks!
I think the protacol your doctor is following is traditional and common for a beginning Dx of Graves disease. He ( your doctor) wants to see if you (he) can control the Graves on meds first before moving into permanent ablation. How impatient you are or in denial is your ( mine) fate. I did that too - I was inpatient with not feeling well after starting it and the endo caring for me was not patient either. Kind of an a$$.
My 4 yr old son was diagnosed with Graves' disease in Sep 07. PTU and Atenolol were started immediately. He has responded to both medications (Atenolol was discontinued in Dec 07). However, TSH levels are still below normal level. T3/T4 have been within normal range since Jan 08 but are fluctuating with dosage changes. My son complains of joint, shin and back pain periodically. He has excessive height compared to kids his age (4 inches above 100th percentile for his age).
The links between thyroid and ITP is that Graves' and ITP (Immune Thrombocytopenic Purpura) are both autoimmune and I have read where ITP is seen in a lot of Gravers. If I do have this condition the platelets will be all new to me, however I do get copies of all my Lab work and can see for myself the levels. On the other hand, how do I know the Labs is correct. I have my suspicions with my thyroid Labs as it is.
I have recently been diagnosed with both graves and hashimoto's disease and I am only 26 years old. My T3 and T4 's were in the 1000's and my TSH levels are <.006. The dr. gave me propranalol for the heart irregularities and the tremors I get and also prescribed me Methimazole. I told the dr. I didn't want to take the Methimazole because I am very sensitive to medications and I do not want to deal with the side effects such as a weakened immune system.
They can infect thyrocytes and induce cell death.
I found the site and it's the American Autoimmune Related Diseases Association (www.aarda.org). When you go there, click on "Patient Information" icon, which takes you to page with a "select"-bar at top. Choose "Hashimoto's", then click submit and it will state the info. from my last post. AR, there is also "Graves" info., just select it and press submit and you'll get info..
I was diagnosed with Graves Disease approximately 10 years ago and have been treating it and dealing with it fairly well. I have even gone off maintenance meds (methimozole) was on very low dosage, did not respond well after a long time. Recently was put on PTU and it has been suggested that I do Radioactive Iodine Therapy or Thyroid Surgery even though I am responding to PTU positively. I am on 150 mg a day and it is said that might be lowered to 100mg/day.
i have high blood pressure, was diagnosed with graves disease recently and i was wondering how long it lasted since i play football my doctor told me i'm am to not to participate in sports, or strenuous activity's and it starts in under 2 months is there any way i can still play football with graves disease or a way to get rid of it before then?
Her doctor thought she may be ADHD but turns out she had Graves and the only way we found out she had Graves Disease was during her surgery to get tubes in her ears her blood pressure went up to 166/122. We had to figure out the cause of that. It has been only 2 weeks since she was diagnosed so I am learning about all of this stuff. They told me it wasn't very common in children so it kinda freaked me out but finding all of you guys has helped very much!
Maybe both of you need to come to this website to see what patients and their care givers go through. In the past year sinc I found out about my Graves disease and then thyca. My personality has changes...some for the better. a lot for the worse. My motivation to do simple things like keep a budge it just too hard for me to focus on. However, as a thyca survivor, I am a little more tolerant of some idiot drives on I-95 in Northe VA.
The stress of these treatments and the cancer can trigger Graves disease in patients pre-disposed to it (ie, already have the genes for Graves) --- any form of hyperthyroidism, if severe and untreated, can cause storm and death but this is very uncommon.
I too am surprised your Doctor hasnt increased your meds. And yes, Graves Disease is with you for life. I have Graves too and also had RAI and TT. The antibodies have no thyroid to attack so it isnt your antibodies making you Hypo, its lack of medication. See your Doctor asap about an increase in your thyroxin as you would be feeling cr@ppy with the TSH at 17.
Your wifes TSI level is high and you need to get more advice before proceeding as pregnancy with Graves and Hyperthyroidism can result in miscarraige and premature births. Personally it seems the Graves Antibodies are attacking the thyroid function even harder than before.And the only thing keeping the levels good are the anti-thyroid meds. There may come a time during the pregnancy that the anti-thyroid meds will have to be increased because the TSI level goes even higher.
had RAI in June 2008 for hyperthyroidism, thyroid storm and Graves disease and gained roughly 36lbs (16 kgs). My levels have been stable for the last 3-4 months and only now am I starting to drop some weight.....probably around 5 kgs all up. A lot of people think they will go back to the weight they was prior to treatment but there is one thing you should know...... The weight PRIOR to the gain was HYPER weight.
Hi Nori - Just read your post and have to tell you I had allergic reaction to PTU and Tapazol (the other option of ATD meds) for Graves Disease. I was also one of those people who did NOT lose weight with Graves. Was told "the body compensates." After "doing nothing" for quite some time, I felt my only option was RAI. The doc also gave me the option to take benedryl with the PTU. . didn't make sense to me to mask the symptoms of a drug with another drug!
looking back on them now after finding I DO have GRAVES. WOW!!!!!! I still appreciate everyones advice and input. I know I have a major road a head of me still. Today has been so bad again. Not sure I will make it to see the surgeon. I am so weak, and a complete mess. Seems I am geting worse. I thought maybe it was because I just found out and am having the sympathy pains for my disease, but I truly do feel weaker and like I am going to collapse at any given moment!
Graves Disease Due to privacy I cannot release too much info. I have a student who was diagnosed with Graves Disease recently. Switched schools, came here. She states that she is feeling depressed, anxious, heart races at night, sees spots, dizzy. We have tried to convince this student to voluntarily go to the emergency room to avoid or possibly rule out a Thyroid Storm. Prior to her transfer here a few days ago... her specialist said her levels were just below danger.
I was diagnosed with Graves Disease in 2003 and opted for total thyroidectomy once they found cold nodules in my uptake scans. Biopsy revealed that I had papillary cancer in addition to Graves. RAI treatment went well and I was declared cancer free in 2008. I now have questions after 7 years regarding the Graves. Once the cancer was found all my doc talked about was the cancer, Graves was pushed to the side and we treated and talked about only the cancer.
By the end of 2005, I was starting to feel very tired all of the time and was having alot of trouble sleeping, so I finally started on PTU for the Graves Disease. Within weeks, I developed a mealy, intensely itchy rash on over 80% of my body. At one point, I thought I would lose my mind over the itching alone. My endo changed my prescription to Methimizole, but the itching was relentless. After three months on the thyroid medication, everything came crashing down.
I was diagnosed with Hashimoto's Disease and Grave's Disease in 1992. It was really quick, my thyroid enlarged (Goiter) down in my chest cavity and was pinching my esophagus. I went into the emergency room and by the next day only had a piece of my thyroid left. I have been taking Levoxyl since then and have not had any more problems, as long as I take my medicine. Prior to all this I had a lot of the same symptoms as described above.
Personally, my dad had psoriasis very severely and my mum has graves disease so it's perhaps a link n some way but I don't think it would increase your chances of MS in partcular. Have you had any further diagnoss since your ON? I know that sometimes they diagnose a clinically isolated syndrome (CIS) and a dmd can then be prescribed which can reduce the chances of a person developing MS.
I had RAI almost 3 yrs ago for Graves and multiple nodules. No cancer. I was placed on Synthroid 6 weeks later. My Endo said I was now Hypo and would just have to have blood work and take that med for the rest of my life. At first I felt wonderful for about 6 months. Moved a week after RAI to my sons home. He is military, due in Sat from Afghanistan. Anyway, slowly I have slid down hill.
I was just seen by an Endocrinologist, who thought from my first round of blood work and my symptoms (heart pounding, increased pulse, and family history of Graves Disease), that I had Graves. She ordered further blood work, and it sounds like you could get more information about what you have from further blood work as well.
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