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#1 Aug. 7, 2012 18:32:47

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 160
Profile  

Well, here goes!

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.

I digress.

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.



Edited AzGravesGuy (Sept. 2, 2012 08:45:59)

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#2 Aug. 8, 2012 10:01:32

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4218
Profile  

Well, here goes!

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).

http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/ [gdatf.org]

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:

http://gdatf.org/groups/scottsdale/ [gdatf.org]

Take care – and please keep us posted!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#3 Aug. 8, 2012 10:25:05

Carito71
Registered: 2012-06-25
Posts: 333
Profile  

Well, here goes!

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.

Caro


~ Fellow GD patient diagnosed June 2012 with a non-existent TSH, elevated fT3 and fT4, and a TSI of 4.5. On Methimazole 30mg/day for the first 8 weeks. On Methimazole 10mg/day for the next 6 weeks. On Methimazole 5mg/day for a week and a half. On Methimazole 5mg every 4 days for a month. On Methimazole 2.5mg/day starting Nov 15, 2012. In Nov labs showed a normal fT4, a normal TSH, and a TSI of 3.2. As of May 2013, still taking Methimazole 2.5mg/day and labs are all normal. TSI is unknown in May 2013. On Methimazole 2.5 for a total of 17 months. TSI 2.1 on July 2013. On Methimazole 1.25mg/day March 2014 - June 2014. TSI 1.0 in March 2014 (normal range <= 1.3). Discontinuing Methimazole as of June 2014. Diet: Gluten and yeast free. Love to read and learn. Very interested in the immune part of GD ~

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#4 Aug. 8, 2012 15:03:07

Darcy43
From: Michigan
Registered: 2012-04-09
Posts: 125
Profile  

Well, here goes!

Welcome.

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.

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#5 Aug. 8, 2012 15:21:07

adenure
Registered: 2012-03-22
Posts: 491
Profile  

Well, here goes!

Hi!

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.

Alexis



Alexis

Homeschooling mom to 4 wonderful boys!
Diagnosed with Graves Disease after my 4th baby- March 2012
Started on 5 mg. of methimazole daily for 7 weeks
Euthyroid at the end of those 7 weeks, but had to stop methimazole as liver enzymes were 8 times normal range.
Total Thyroidectomy- 6/15/12
Started Synthroid (brand name) 100 mcg. 2nd day after surgery for 6 weeks (TSH: 6.35 & free T4 in upper range and T3 just under mid- range).
Upped Synthroid to 112 mcg. 7/27/12
Euthyroid as of 8/10/12 on 112 mcg. Synthroid (TSH .79 and free T4 in upper range).

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#6 Aug. 9, 2012 13:33:18

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 160
Profile  

Well, here goes!

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.

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#7 Aug. 10, 2012 12:36:31

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4218
Profile  

Well, here goes!

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/ [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!


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#8 Aug. 22, 2012 09:11:32

AzGravesGuy
From: Peoria, AZ
Registered: 2012-08-07
Posts: 160
Profile  

Well, here goes!

Hello Everyone!

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.

Edited AzGravesGuy (Aug. 22, 2012 09:17:29)

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#9 Aug. 22, 2012 23:50:10

VanIsleGal
From: Victoria, BC
Registered: 2012-04-04
Posts: 66
Profile  

Well, here goes!

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!

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#10 Aug. 23, 2012 06:16:40

Bobbi
Online Facilitator
From: Miami, FL and Zephyr Cove, NV
Registered: 2008-10-27
Posts: 1325
Profile  

Well, here goes!

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.



[b:3sz1pkbe][color=#008000:3sz1pkbe]Bobbi GDF Online Facilitator[/color:3sz1pkbe][/b:3sz1pkbe]

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