[irishfam]

#1066561

Hi, I too opted not to do RAI or surgery, my goal being remission. I too, looking back, bounced in and out of remission. I was not diagnosed until I was so hyper, I was off the charts. (looking back, I was hyper for years). I think what happened was (and may be happening with you) is that I would go into hyper for a bit, and my body was able to bounce back into remission, until one day it just couldn’t. I did PTU for 4 years and achieved remission for a year, then started going into low thyroid. My doctor explained that this is the natural progression of the disease is that eventually, most all people in remission will eventually be low thyroid, as the function of the disease, is the antibodies will attack the thyroid until it achieves it’s goal of killing it off. If you don’t mind taking your time, and hoping to be part of that small population who can actually achieve remission and stay there, why not try for it, as long as you are staying healthy and taking care of yourself. Good Luck.

[James]

#1066562

At the recent Graves’ disease conference the question of thyroid burn out came with the panel of physicians present. I found it interesting that the answer seemed to vary concerning the prevalence of “thyroid burnout” over time. One of the Dr.’s said that 5% of patients will go hypothyroid over time, so this would imply that it isn’t that common for thyroid burnout, however, they didn’t discuss any variables like degree of hyperactivity and over how much time etc etc., I’m not sure if that is well known. What I do know from my own physician is that TPO antibodies (Thyroid Peroxidase), at high levels which is most prevalent in patients with Hashimotos disease, can also be present in those of us with Graves. My understanding is that if those particular antibodies are high, they are very destructive and will in time destroy the thyroid tissue prematurely rendering us permanently HYPOthyroid. During periods of sustained remission where TPO antibodies are at bay, the destruction is also at bay, individuals can potentially go many years or decades with a normally functioning thyroid, depending on these antibody levels.

I would be curious to know if your physician has ever tested your TPO antibody count? Not that that would change your treatment, but would potentially give you and your Dr. better insight as to what is at play. I have a relative with a high TPO count. He is hypothyroid and probably will continue to become more hypothyroid over time because of the elevated TPO antibodies.

James

[Patrick]

#1066563

Oh man, where do I start. I am 54, great health, fun loving, enjoyed every part of life. Three beautiful daughters and a wife of 34 years I still can’t wait to kiss when I get home from work. I started working out 4 years ago, dropped 24-26 lbs, in my attempt to stop smoking. Sept 09,2009 was my date and I succeeded. I was 5/10, 180 lbs and felt like I was 20.Life was great I became a new Grandfather for the first time and I just loved being me. Then all hell broke loose on Christmas Day and the weeks to follow. Rapid heart beat, very angry feelings,anxiety, scared, racing thoughts,weak,felt like I was pulled through a knot hole,loss of thoughts, depression and out right miserable. I started sleeping 12 to 13 hours per night but, could come home at noon and nap.Life as I knew it was gone and this isn’t good considering I am an insurance agent with well over 1500 clients! I went to My Dr. and she prescribed xanax .25mg 3 times per day until I could get my Thyroid checked. Blood test came back with elevated tsh and t3 /t4. She referred me to an Endo. who put me on Methamozle 10mg and propanolol 20mg 3 times daily. I had the iodine uptake and ultrasound, final results came back Graves Disease. I was still taking a small dosage of xanax because the Meth/Prop were not elimin. all the anixety I was having. After talking with a friend of mine who went thru this, this year, I decided to have the radiation iodine done and get it all over with. I was suppose to have the radiation iodine tomorrow however, the Dr pulled me off the Methamozle a week ago to see how the thyroid was doing and now my blood test are showing normal. So he said we are going to wait to do the radiation Iodine. I have to go back in 3 mos. In the mean time he put be back on the Methamozle and increased the Propranolol to get me off the xanax. Any advice would be of great help, its really nice to talk to someone who’s gone thought this.

[Kimberly]

#1066564

Hi Patrick – Welcome to the boards! Yep, we can all relate to the fatigue, the anxiety, and the raging emotions. The good news is that those issues get better once our thyroid levels are stabilized and our bodies have had a chance to heal. Also, it sounds like you have a great support system, which is really important. Your wife is welcome to post here as well.

Wow, 1500 clients? Sounds like you are a typical "Type A" personality, as many Graves patients are (myself included). ” title=”Very Happy” /> Is there any way you can get some help on the job? As you go through the healing process, it’s really important to establish priorities and set boundaries so that you aren’t taking on too much.

It would be great if you could luck out and keep your levels in the "normal" range. But if you find you are creeping hypER again, you do have three treatment options: ATDs, RAI, or Thyroidectomy (surgical removal of the thyroid). Each option has its own pros and cons. There are members on this board who have been through all three options, so feel free to ask questions.

[Ski]

#1066565

Just a quick comment ~ when you’re hyperthyroid, your TSH values are suppressed, T4/T3 levels are elevated. No big deal, just want to make sure it doesn’t mislead anyone coming in as a new reader.

It’s really interesting that your GD symptoms began shortly after you quit smoking ~ my experience was similar, I quit in May 1997 and became symptomatic in November of that year. I’ve been to lots of conferences and never seen anything to say the two are connected, but I do think it’s interesting. Looking back, I believe there were times when I may have had minor symptoms, but nothing that caused me to see the doctor until 1997.

This is a very complex disease, and recovering is equally complex, so I would just urge you to find out all you can, and also to go easy on yourself while you go through the healing process. The whole thing isn’t "solved" when your thyroid hormone levels are normal. We have some healing to do even after we reach normal levels and remain stable. Still, you can anticipate a return to health ~ all of our treatment options are capable of bringing a successful result.

You can do searches of the BB for topics of interest to you, and please always feel free to drop in with any questions you have. We’re here to help!

[Rita]

#1066566

I too decided on the ATD treatment for GD. I have been basically a healthy person until I was diagnosed with Graves Disease in September 2009. Since I began treatment with ATD my symptoms are gone with no side effects from the drugs. I work in a lab so I am able to check my levels whenever I am feeling "funny". My TSH is still 0.00 but my FT4 and T3 are returning to normal levels. I am off beta blockers with occasional heart symptoms that don’t last long. I have never taken any medications so this is diagnosis was a hard "pill" for me to swallow. My thoughts were take meds for hyperthyroid and hope for remission or take drugs for hypothyroid for life…..I opted to try meds to begin with and avoid radiation and/or surgery until it was absolutely necessary.

[Beths49]

#1066567

Hi, I am new today to this forum. I was just diagnosed yesterday with Graves disease and it’s all very scary to me. I have been feeling fine. I went to my dr on Tues. for my blood pressure. It had been running a little high but I had surgery on Christmas Eve and the preop nurse told me to wait until after my surgery and release by my surgeon and see if it was still running a little high. It was, so that was my reason for going to the dr. She felt my thyroid as part of the exam and thought that one side was larger than the other so she sent me for an ultrasound that day and did blood work. The ultrasound came back with no nodules so she said no cancer, thankfully. My TSH was low so she referred me to the specialist that I saw yesterday. He read the reports and did his exam. Let me back up and say that I was diagnosed with panic/anxiety disorder 16 years ago and have been on a low dose of xanax since then. I have had blood work many times since then and my TSH level has been fine. Anyway the dr yesterday examined me and said it was Graves disease, which my pcp had already said it was hyperthyroidism. He does not want to go the radioactive iodine therapy route(and I didn’t ask why because it scares me, I didn’t want it either) and said surgery was not necessary in my case. He gave me what he said was a low dose of Methimazole 10 mg a day. I am very, very med phobic so of course I am afraid to take it. I am terrified of a bad reaction (I have had bad reactions to antidepressents when I was first diagnosed with panic) and also scared of the low white count or high liver function. He assured me that it was a safe drug. He did blood work yesterday and I should have those results this coming week. He wanted to do the scan where you drink the stuff but I said no to that because there again, I am terrified to put anything like that into my body. He said that was fine, he had the ultrasound and we would see what the blood work told him. Any input here would be greatly appreciated. I do have the fast heartbeat, but it’s not always fast. He said I could take the medication or not but that the thyroid levels would not get better if I didn’t. I asked if I could use a beta blocker instead but he said that would not take care of the Graves disease. Thanks for help!

[Kimberly]

#1066568

Beths49 wrote: Any input here would be greatly appreciated. I do have the fast heartbeat, but it’s not always fast. He said I could take the medication or not but that the thyroid levels would not get better if I didn’t. I asked if I could use a beta blocker instead but he said that would not take care of the Graves disease. Thanks for help!

Hello – Your doc is correct that the Beta Blocker will help the fast heartbeat, but it won’t address your hyperthyroidism. It’s important that you *do* select one of the three treatment options to deal with your hyperthyroidism (Anti-Thyroid Drugs like Methimazole or Radioactive Iodine or Thyroidectomy). All three treatment options have pros and cons, so this is a decision that should be made in conjunction with your doctor.

I was exactly in your shoes about 2 1/2 years ago…my Graves’ was caught in a routine checkup, and I felt like the meds were making me feel *worse*. However, unchecked hyperthyroidism can cause heart issues and bone/muscle wasting…and in extreme cases, the body can go into thyroid storm, which can be fatal. The serious side effects from anti-thyroid drugs are fairly rare, and the good news is that they can generally be reversed if you stop taking the drug. Also, keep in mind that most patients are able to reduce their initial dose of the drug once thyroid levels return to normal. If you decide to proceed with the anti-thyroid drugs, familiarize yourself with the warnings that come with the drug, and make sure to contact your doctor ASAP if you have any of the warning symptoms listed, such as an extreme sore throat with fever. Feel free to post questions here on the treatment options…or any other issues of concern. There are a lot of knowledgeable folks here.

[Patrick]

#1066569

Thanks for the info you guys, one quick questions, since my Endo said he is going to wait to do the io/rad because my levels are normal, shouldn’t I feel normal and why am I still having to take xanzx to get rid of the anxiety/anger feeling I am still having.Why isn’t the meth/propol taking care of my symptoms, I really don’t know what all my levels are but he tells me I have a mild case of the disease. My God I feel for you who have a bad case of it !

Patrick

[Kimberly]

#1066570

Patrick wrote:…since my Endo said he is going to wait to do the io/rad because my levels are normal, shouldn’t I feel normal and why am I still having to take xanzx to get rid of the anxiety/anger feeling I am still having.Why isn’t the meth/propol taking care of my symptoms…
Patrick

Hi Patrick – I would definitely run this one past your doctor. I know that once our thyroid levels return to normal, it still may take some time for our bodies to fully recover from the effects of being hyperthyroid. However, I would expect that you should be feeling *some* relief if your levels are in the normal range now.

I would encourage you to get copies of every set of labs that you have run, and for each individual test (1) note whether or not you are in the "normal range" and (2) note whether your levels are rising or falling from previous tests. This will help you have a more constructive conversation with your doc at each visit. I keep mine in a 3-ring notebook and bring it to every appointment.

[Sue_Conard]

#1066571

[quote:30wzdx9m] James: I would be curious to know if your physician has ever tested your TPO antibody count? Not that that would change your treatment, but would potentially give you and your Dr. better insight as to what is at play. I have a relative with a high TPO count. He is hypothyroid and probably will continue to become more hypothyroid over time because of the elevated TPO antibodies.[/quote:30wzdx9m]

Hey James: My TPO was taken 18 mos. ago when I was first diagnosed and at that time, it was 108 (normal 0-34). Your thoughts? Thanks, Sue

[James]

#1066572

Hi Sue,

It is certainly not out of the realm of possibility of having a high TSI (common in Graves’) and also a high TPO which is an indicator of Hashimoto’s. Your Dr. will be able to help you determine if any swings from hyper to hypo are a result of both of these antibodies at play. What I do know is that if the TPO antibodies stay elevated, you are more likely to become permanently HYPOthyroid in time due to the destructive nature of these antibodies. The antibodies can rise and fall and apparently it isn’t clearly understood as to why this happens. Ask your Dr. if it would be worth testing your TPO levels again (since it has been 18 months). Updated results may shed some light on what you are presently experiencing. I can certainly sympathize with the frustration some of you experience on the Graves’ roller-coaster. Wishing you well!

James

[Sue_Conard]

#1066573

Thanks so much James for your advice. I’m going for another opinion on surgery in April. I’ll let you know what I find out. Right now I’m struggling with the hot flashes, insomnia and muscle pain…argh!!!!!!!! You’d think after 18 mos. this monster would just go away…

[Author]

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