AzGravesGuyAugust 7, 2012 at 6:32 pmPost count: 160
I am in my late 30’s and have been on the Graves rollercoaster for 6+ years now. Tomorrow The hospital is contacting me to schedule RAI.
After doing atd methimazole for a year, first remission was almost 2 years. Then it flared, more methimazole, another year of remission. My problem for the last 2 years has been SCG, sub clinical Graves, where my tsh is low but T3&T4 are normal. I’ve been on Atenolol beta blocker for the last 4 years straight through. This year as my tsh dropped I gained 40 pounds in 2 months. Previously I lost large amounts of weight when it would flare. Now that my clothes are already tight, post RAI weight gain is a huge worry.
What has surprised me the most about this journey has been the mental effects of this disease. Anxiety! True frontal lobe fight or flight response to…..nothing. I am hoping this subsides after the RAI. It’s been a real trip. My endo says it doesn’t exist, despite the published studies. I saw a psychiatrist for the symptoms and he agreed with the endo.
How come no one is talking about this connection? Seeing the change in myself during this last bout has made me question everything. Having a team of doctors that are very quick to discount it completely is infuriating.
The thought of RAI is both exciting and terrifying. I barely remember life without Grave’s. The racing pulse, anxiety, thin hair, ridged weak nails, the hot flashes….its been the norm for so long. I am looking forward to what this treatment brings.
However, I have serious concerns about ingesting enough radiation to kill an organ in my body. Also I am concerned about the inevitable hormone dump as the RAI takes effect. Before I was diagnosed, my heart went to insanely fast rates (200bpm resting) and I was told some damage had been done. I am afraid of a repeat of this as the Atenolol is barely working now, at 100 mg a day.
My endo said I am only getting 15 millicuries. On some level having any throws a red flag. But nothing can be worse than how it is now.
Reading through these pages, seeing similar stories has been a wealth of support for me. Thank you to everyone who has shared their story here. I will keep this thread updated as my treatment continues.
P.S. Can anyone tell me how/why a 31 year old man would get Grave’s? The blanket “genetics” response I got so long ago still doesn’t sit well.KimberlyOnline FacilitatorAugust 8, 2012 at 10:01 amPost count: 4286
Hello – Having thyroid hormone levels out of balance can absolutely affect emotions, memory, and mental processing. This bulletin from the Foundation talks about some of the mental and emotional changes that can occur with Graves’. It’s called “What’s Wrong With Me – I’m Not Myself Anymore”.
(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).
As for why anyone gets Graves’ (or any autoimmune disease), the current theory is that certain individuals are genetically predisposed to getting an autoimmune condition and then some “trigger” actually activates the disease. The trigger might be stress, a viral illness, something in the environment, or physical trauma. It’s not well understood why women significantly outnumber men when it comes to Graves’.
By the way, if you have an interest in attending a support group in AZ in September, here is the info for the time/location:
Take care — and please keep us posted!Carito71August 8, 2012 at 10:25 amPost count: 333
Welcome to the forum.
I was just diagnosed in June so I’m still learning a lot about GD. Why we get it is everyones question. Wish we knew. My Endo told me that once you have one autoimmune disease you are more likely of developing another. He told me this b/c I also have Celiac. Stress, I know can cause all kinds of damage so maybe that is one of the #1 causes. I have had my share of “heavy” stress in the past. Something that I have changed, specifically to help with Celiac D, not knowing that later on I would be diagnosed also with GD. I’ve read that healthy life changes can help us feel better.
I wish you the very best with your RAI. I’m currently on Methimazole so I have no experiences to share about either RAI or TT. Hopefully more of the members join in and provide some answers for you. Please do keep us posted.
CaroDarcy43August 8, 2012 at 3:03 pmPost count: 125
I totally feel your pain and I too suffer from extreme anxiety. We call it Graves Rage at time…I thought I would harm a few folks before I began treatment, including my doctors who pooh pooh’d my anxiety as excessive worry and stress. I hate the thinning hair, the weight gain, the rapid heart beat, etc. I wish I had the answer as to why or how we are the chosen ones for this horrible disease, but alas, I haven’t a clue. I am just glad we are in the 21st century and there are various treatments, along with support boards, and specialist so we can get the physical and MENTAL help we need.
If my mind isn’t right, my body will follow. I cannot believe these scientist (docs) do not believe in the metaphysical connection. I trust their expertise but it is disheartening at times. I am glad we also have a ton of endos and surgeons to chose from also.
I will pray for your recovery.adenureAugust 8, 2012 at 3:21 pmPost count: 491
Welcome! I’ll tell you, until I was diagnosed with Graves, I never suffered from anxiety or panic attacks. I did have one panic attack once many years back bc of a scary situation, but not because I was taking a shower and was scared to be alone or of passing out or because I was alone with my kids (which is what Graves caused). I mean how silly! I have 4 boys and have homeschooled for the last 4 years and have always been a stay at home mom and NEVER was afraid of taking care of my own children at all. Yet, when I got Graves (after my 4th baby was born), I was having panic attacks, constricted breathing, fear, crying, heart palpitations, sweating, tremors, tons of anxiety. Yeah right there’s no correlation… The 1st doc. I saw sent me home with a paper bag and told me I had a panic disorder. Another thought I had post partum depression. Finally blood test were run and my .01 TSH prompted further tests and the eventual diagnosis! Yay (sort of)- at least I knew I wasn’t losing it!
I’ve since had a thyroidectomy 7 weeks ago and am now on the other side of the fence, in the process of getting my Synthroid dose figured out. It’s not easy either, but I’ll take this over being hyper any day. I still deal with insomnia and headaches, but I’m hoping once my dose is right, I’ll be as good as gold! I too was on methimazole at the beginning, but it elevated my liver enzymes 8 times the normal amount, so I had to stop the ATD’s. I wasn’t comfortable with RAI (just my personal preference), so I went with surgery. Fortunately methimazole had regulated my thyroid levels for surgery.
My mom and aunt are hypo and my great grandmother had a goiter, so I suppose there is a predisposition for thyroid issues.
It seems like, because of your history, going the definitive route would be a good idea. I’ll tell you that since having the surgery ALL my symptoms have gone away (except insomnia which leads to headaches). I’m a little moody (probably bc my Synthroid isn’t quite right & I’m sleep deprived), but I’m not anxious or having panic attacks anymore- heart rate is back in the 60s, no tremors. I feel woozy sometimes- but I chalk this up to my sleep issues as well plus as you know, life doesn’t stop bc we’re sick. So, through my recovery I’m trying to care for my boys & still school them. Fortunately they’re smart little buggers, love to read, and I’m doing pretty well for the most part. It feels good to be on the road to recovery. I say take that step and head towards getting yourself back.
AlexisAzGravesGuyAugust 9, 2012 at 1:33 pmPost count: 160
Thank you for the great replies, they mean a lot to me. I appreciate the kind words and insight. (I knew I wasn’t crazy!)
This anxiety side effect is beyond awful! I cannot wait for the day when I can sleep through the night and not feel like I am having a heart attack in morning traffic.
I am scheduled to get RAI September 4Th.
The Dr recommended another uptake scan so that will be done next week.
I don’t have insurance. As a single male age 18-40 with no kids, I can’t find any assistance with these procedures financially. Does anyone know how much the average RAI costs in the U.S.? The scheduling person I spoke with was clueless.
I am still doing it, even if I have to sell my car.
Off to yet another Dr appointment. I will update as things move forward.
Thank you everyone. I feel better knowing I am not alone in this.KimberlyOnline FacilitatorAugust 10, 2012 at 12:36 pmPost count: 4286
Hello – I read one article in the New England Journal of Medicine that said the cost for a dose of RAI ran around $400-$700, but I’m sure this varies depending on the facility, and I’m not sure if this includes the time of the personnel involved, or just the dose itself. A couple of suggestions…
1. Contact the facility directly about cost and ask if they would offer a discount for upfront cash payment. Some facilities do offer discounts for getting payment ASAP, versus waiting months to get paid by an insurance company.
2. The Patient Advocate Foundation helps patients who are uninsured look at possible options for coverage, so it might be worth contacting them to see if they can provide any additional direction: http://patientadvocate.org/
(Note on links: if you click directly on the above 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).
Wishing you all the best!AzGravesGuyAugust 22, 2012 at 9:11 amPost count: 160
I am in a great mood today. I just swallowed the Uptake pill and I am counting the hours until I can eat again.
For anyone else who doesn’t have insurance, or anyone curious, my RAI will cost about $1400 including a post scan, the Uptake was about $400 plus interpretation fee yet to be disclosed.
Pretty cheap IMO. I can keep my car after all! LOL!
My RAI is 2 weeks away. I am not as nervous as I was.
Once again, reading through the pages of posts here has answered all of my questions and allayed almost all of my fears about RAI. Thank you to everyone who posts on this board.
The anxiety has calmed somewhat, a refill of Valium helped. I still wake up 1 or 2 times a night burning up, heart racing, sweating like I am running a marathon. BUT, I am actually getting used to it. How sad is that?
Today when I woke up, I started laughing at my illness. I told my thyroid to do its worst, in 2 weeks I start calling the shots and getting my life back. I probably shouldn’t taunt my Grave’s Disease, but it was needed to put me in the right mindset for today.
At the hospital this morning, the admissions woman was surprised I have had Grave’s this long and I haven’t developed the eye problems normally associated with it. Her coworker had RAI done 20 yrs ago and still has protruding eyes.
I have used MMJ to treat my eye pain for the last 6 years, much like it is used for glaucoma with positive results. I wish more research was being done in this field. Only time will tell if it has really helped. Both of my family members who had Grave’s had protruding eyes before it was all said and done, so I am expecting it to happen to me. So far nothing noticeable. Fingers crossed.
I took pictures of the uptake pill and the gamma camera but cannot find how to post them by uploading. I plan on taking pictures of my scans today and tomorrow as well. If there’s a way to upload a pic into a thread please PM me on how to do it.
Thanks again to everyone on this board. I will update as things happen.VanIsleGalAugust 22, 2012 at 11:50 pmPost count: 66
I think we are twins! I have had Graves’ for 7 years and relapsed 3 times! My RAI is scheduled for September 7th! My dose will be 14! I also damaged my heart and have been on Bisoprolol (beta blockers) for about 5 years now. I was wondering if we stay on the beta blocker after RAI? I haven’t asked the endocrinologist this yet.
I feel just like you…absolutely nuts to swallow radiation enough to kill an organ in my body. I have refused RAI for 7 years but want my life back and don’t want to wait a year for surgery. I can’t have surgery until my levels are normal which is a real challenge and not expected to happen for a year. I was taking 40mg of Tapazole to get my levels down and last week went down to 20mg waiting for RAI.
The 2nd time with Graves’ was a nightmare in terms of anxiety. My endocrinologist did not discount it at all. I was absolutely crazy and could barely think logically. It was a step-by-step process to think logically. This was the weirdest feeling and I was doing my PhD at this time. I had to go on a medical leave.
I hope all goes well on the 4th! Keep us updated!BobbiAugust 23, 2012 at 6:16 amPost count: 1324
Hi, and Welcome:
I just wanted to chime in and wish you luck with your RAI. I had mine in Nov. 1996, and it made me well again.
I had been diagnosed and treated for panic attacks for a few years prior to my Graves diagnosis. I would get panic attacks on air planes. As you indicated, it was beyond awful. Then, when I went into full-blown hyperthyroidism, the psychiatrist with whom I’d been consulting started beating himself up for not having given me a simple blood test when I had first started to consult about the panic attacks. He predicted they would go away once I got my thyroid under control. They did.
As to the RAI. Expect to be a bit more hyper than normal about one week or so after you get the treatment. As thyroid cells are dying off, they release their stored supplies of thyroid hormone into the body. They are not making new hormone, but since the cells also store hormone, how much might be released is anyone’s guess. I mention this because when people don’t know to expect the added hyperness, it can sometimes be a worrisome.
I hope you are feeling much better, and soon.AzGravesGuySeptember 1, 2012 at 7:53 amPost count: 160
What a week it has been. I am sorry for not being able to update sooner.
I am now in the quiet freak out phase of preparedness.
My experience so far leads me to believe I am having a “drive thru” treatment. No one from my dr’s office or the treating hospital has given me any information on isolation recommendations, diet, or precautions, let alone the results of my uptake test. Nice.
I am at the point of having so many questions thinking clearly is difficult. Lol! Monday is a holiday and treatment is Tuesday, so this is my only source for answers before then.
Any opinions on the following issues would be greatly appreciated.
I don’t have the luxury of taking a full week off for isolation. My treatment is Tuesday afternoon, I am scheduled to drive carpool Friday morning…..all adults…am i putting them at risk? How much will I contaminate the car? Should I wear disposable vinyl or latex gloves? Put a garbage bag over the seat? Surgical mask? Pay someone to take my place?
Are there certain foods that are better to eat after RAI? I am a Vegan already (15yrs and counting), but was wondering if boosting my raw intake would help.
I have a stockpile of xylitol hard candy for the first 2 days.
If I wear gloves and a hooded Tyvek suit can I get away with using the kitchen without having to hazmat wash everything? I have a friend who works in asbestos removal and he offered to hook me up with disposable suits and masks if needed.
Can I handle food safely with gloves? I get an organic produce box delivered every Wednesday from a local farm. Will I contaminate it by moving it to the fridge if I wear gloves and a suit?
I read about some people being told to shower 4x a day after RAI. Sounds very “Silkwood” to me. Is this necessary for a 15mci dose?
The pets will be dropped off at boarding before I swallow the magic pill. I have them scheduled to stay until Sunday. Are there guidelines for how long the cat has to stay? I know from working in that industry cats are extremely sensitive to RAI exposure, but cannot find specific recommendations.
I have large plastic sheets to cover everything in my iso room. Inflatable mattress with cheap sheets…also read sheets should be changed daily…opinions? Plastic bags for my cell, keyboard, mouse, remote control and iPad.
I have to stop typing for a while now. My head is literally buzzing with hundreds of unanswered questions. Lol!
Thank you everyone! I apologize if this sounds like the rantings of a crazy person. I expected to have some call-backs before today. Any opinions, tricks, or tips would be greatly appreciated.bretbunchSeptember 1, 2012 at 12:20 pmPost count: 1
Hello. I just found this website/forum today and saw your post and thought I would reply.
Here’s my story….I was diagnosed with Graves in November 2005 and had RAI the Thursday before New Years 2006. When I went to the hospital to take the radioactive pill, I was told that I had to isolate myself for 3 days, with no contact with anyone else, especially children. I had to flush the toilet 3 times after each time using it due to the radiation. On the way home from the hospital, I had to sit in the back seat of the car, behind the passenger seat, so my husband, who was driving, had less exposure to the radiation that my body was giving off. I also had to suck on hard candy for about the first 3 days to 1 week so that my saliva glands would not be so affected. I basically just laid around for 3 days and watched TV. I went back to work after those 3 days. The Dr. had to monitor my levels regularly to make sure that I was heading towards hypothyroidism and then when it was time, I was started on replacement hormone. I was told at that time to only use the brand name thyroid replacements, so I was started on Synthroid. The synthroid worked well for me for quite a few years, but then I noticed symptoms, even though my TSH was sitting at 1.96.
I searched out a naturopathic Dr. and I have been very happy with my choice since then. I live in AZ too and when you start to go hypothyroid, I encourage you to go to a naturopathic Dr. They don’t take insurance, but I think that your health is well worth it. I recommend Dr. (edited – please send individual doctor names via Private message) in Mesa. He fully understands the disease, which you will find most endocrinologists do not. He not only treats the disease with medications (natural and compounded thyroid hormone–whichever works best for your body), but he treats other hormone imbalances as well. He will help you get your life back!! He has helped me. He doesn’t just give you a pill and tell you that everything will be fine–he truly listens to you and treats the whole person.
Everyone’s experience is different, but I definitely felt the effects of the RAI, which was probably the increase in hormones in my body, from the RAI. You will have your own experience, but just know that you are on the road to recovery. I wish you well with the treatment.stevefSeptember 1, 2012 at 3:07 pmPost count: 1
Here are some basic guidelines on RAI from the ATA:
They have some general guidelines on how long to stay away from people, etc. but the specifics for you should come from your doctor (or a doctor of nuclear medicine) based on your dose.
You have some very specific questions and you should try to get those answered by your doctor before Tuesday afternoon.
By the way, Kimberly is traveling a bit this weekend so I’m not sure how prompt she will be at replying to your post.
StevesnelsenSeptember 1, 2012 at 5:00 pmPost count: 1909
It might be worthwhile to use the Search Post option, find someone who has a recent RAI, or put in the word “precautions” see what you might learn from others.
Good advice from Steve if you can accomplish this. And the reference that is listed is good, too. REalize that people with thyroid cancer has a much much larger dose than Graves’ folks, so the references are wide to accomodate varying doses.
But , in the meantime, I think I remember the following, just from reading posts from others on this forum, and some are relevant to your questions.
I am hoping others see your note and share their experiences.
+++***I suggest posting a new post that says, “RAI precautions, what did you do?” That will attract people to the specific subject.*******
The overal biggest thing to think about is VERY close proximity to your neck for a few days, of animals and kids. Also, be careful that there no urine splashes.
I think you will be fine driving the car pool. People will not be wrapped around your neck, you will be on day 3. You aren’t spending any long time in close proximity, you are just going to work. I am pretty sure you don’t need any of that plastic in the car.
I don’t believe there are any food restrictions at all.
I hope you get this information from others, but the hazmat suit and gloves aren’t necessary at all. I am sure this is not necessary.
Your food. Use the usual precautions you always do. Wash your hand. Nothing else.
I don’t recall anyone ever mentioning the multiple showers.
I can’t speak the plastic sheets, etc. Seems like an overkill. The big thing here is close exposure of others to the area around your neck for a few days, and being careful of urine. I am not a bit sure you need to do any of this.
**I’d ask all of your questions when you HAVE the RAI. And I am sure they will give you a sheet of paper about precautions. Ask them about the cat.
Ask them if your dose is small, medium or large, and ask them the questions you have listed.
I know how you feel, you want to know ahead of time, anticipate everything and be prepared. But some of the questions really can be clarified the day you do this if you don’t get reliable information before that.gatorgirlySeptember 1, 2012 at 5:10 pmPost count: 326
First of all, I think it is quite common for your doctor’s office not to give you any information on the isolation precautions – many people on here have had that experience. Most patients don’t get recommendations from their doctors (because they aren’t the ones administering the RAI) but from the nuclear medicine department, and usually from the tech as opposed to the radiologist. Because I’m an obsessive planner, I called the nuclear medicine department as soon as my RAI was scheduled so that I could ask the tech all about the precautions. She repeated them, in greater detail, when I arrived to the hospital the day I took the RAI.
I had RAI on a Friday afternoon, and was told it was fine to go back into work Monday morning. You should be fine for your carpool – remember, radiation precautions are because radiation accumulates over a lifetime. If one of your co-worker has had a dozen X-rays, the radiation your body will be emitting by Friday will not make a difference whatsoever. For the others, it will be so minimal that it isn’t going to give them any additional risk of cancer or leukemia.
Kimberly has posted about there not being any diet restrictions once we are no longer hyper.
I live alone, and did not wear gloves or anything like that, and all I did was a good cleaning of my apartment on Monday evening, but moreso because I’m a clean freak than because of the radiation. A hazmat suit is absolutely not necessary otherwise you would not be allowed to leave the hospital and would be placed in an isolation room. Remember, the dose you are receiving is incredibly small compared to what thyroid cancer patients get (50-200 mCi). What you are describing sounds really excessive to me, and may only make your anxieties about RAI worse. You don’t need sheets, plastic bags, etc. You also don’t need more than one shower a day. I was told to flush twice, and that drinking a lot of water would help flush out the excess radiation, so I made sure to stay hydrated. No special foods other than the hard candies for sore throat.
My dog came home Monday after work. He is in tip top shape 18 months later. Cats are prone to hypERthyroidism, so I would ask your vet whether or not he needs extra time away from you. Again, this is all a lifetime exposure risk we are trying to minimize.
I really don’t want you to panic and make this a huge ordeal for yourself, but if you would help you rest easier by covering your home in plastic, go for it. However, if it provided any benefit, I really think everyone who chose RAI would have been told to do so by the nuclear medicine department, but we were not.
I completely understand why you’re anxious about this without your uptake results. My understanding is that the uptake results come into play as to how much I-131 you need. My radiologist and endocrinologist worked for separate health care systems so my records were not transferred, and the radiologist refused to give me the pill until he got copies of my entire medical record and felt comfortable with the dose my endo had recommended. So I’m sure your radiologist will have copies of your uptake results, and if not, will request them on Tuesday.
You’re going to be fine. RAI is safe for you and others you will come into contact with after those first 72 hours, otherwise millions of people would not have undergone this treatment method. I had serious anxieties about it, too, but mine were about the permanent death of my thyroid rather than the radiation exposure.
I wasn’t going to mention this, but I think I should. My boyfriend (at the time), refused to leave me alone that weekend. He knew the risks, saw all the paperwork I was given, and listened to me beg for days ahead of time and then for hours when he showed up after I came home from taking the pill. In the end, I gave up fighting because I realized I wasn’t going to win and was so appreciative of him putting himself at risk to make sure I was OK that weekend. I wouldn’t recommend anyone be that good of a boyfriend, but he remains healthy and well to this day. I’m glad he chose to spend the weekend with me because it was an emotional few days for me.
- You must be logged in to reply to this topic.