[cathycnm November 13, 2008 at 10:33 pm Post count: 284]

#1075414

Mike – I will speak for myself and why I chose RAI here. I, honestly, would have been a good candidate for anti-thyroid meds, given my Graves was mild and my age/gender. However, I also have osteoporosis and the Graves can (and did) work against regaining my bone health. I am on a 2 year treatment with a new med for the osteoporosis and I wanted to make the most of that time – hopefully get my bone health back before I break a bone – which tends to happen to women in their 60’s – I am in 53.

Had I chosen PTU – there would have been the wait to see if it worked – and, if not, then RAI – all the time my bone time clock is ticking. Had I gone into remission, I would have been sitting on the edge of my chair wondering if I would go back into active disease and have this further damage bones before it got caught. I read up on it and everything I could find is that Graves with underlying osteoporosis, one should go with RAI due to the bone risk.

I had a bad 6 weeks after RAI because I reacted very quickly and my TSH was bouncing – that means all my neurotransmitters (chemical messengers) were off. If I had it to do over – would I do RAI. Yes, I would. I live with some fear, however, because my mom had Graves and had RAI two years later she died of stomach cancer. However, there is no real evidance to say this had anything to do with RAI. Give cancer tends to be precancer for years (and her RAI was only 1 year before her cancer diagnosis) – and she smoked (and used too much alcohol when younger) – those were her real risks.

So – the answer is I was pleased with RAI despite the initial jolt and I plan to take very good care of myself the next few years to stay healthy! Whatever choice you make – I think it is important for you to feel it is the right choice for you. Let us know . . . Cathy

[James November 13, 2008 at 11:31 pm Post count: 115]

#1075415

Mike,

OK, since you are asking, and since you are a fellow male with Graves Disease, I will give you the perspective of someone who choose ATD (antithyroid drug) as a medically acceptable treatment option. By the way, I am a 44 year old male, diagnosed around the time I turned 30.

With ATD’s, your Dr. will start you off on a higher initial dosage in order to get your thyroid levels regulated as quickly as possible. Once you are in a euthyroid state (normal thyroid levels), your doctor will help you determine how much to cut back on the medication (ATD) in order to maintain your personal optimum thyroid level (normal ranges are wide and differ from person to person). As far as ATD side effects are concerned, I found that while on the higher dosages (which are required initially), some side effects can show up during this time. Most of the side effects are minor in nature and in rare cases are more significant (effecting white blood cell count) which can potentially be a life threatening condition. (that’s the disclaimer to those who are concerned)

While starting on 30mg of Methimazole/day, I had a minor rash which immediately subsided in a few days. When my dosage was reduced, it went away completely. I personally never had any major OR minor side effects during the time I was euthyroid on ATD’s, nor were my white blood cells compromised at any time (a rare but possible condition). My Graves medical file states, “Graves Disease – Grossly overactive thyroid”, not considered a minor case by any means. Anyway, with each subsequent blood test I could eventually wean off to a minimal maintenance dose of ATD to achieve and maintain my euthyroid state without any problem at all. I could go on and on, but this gives you a brief overview of my personal experience which was a medically supervised treatment choice. I will also add that although anecdotal in nature, I am convinced that some lifestyles changes helped me ultimately achieve remission and stay there. I have been off of ATD’s for a number of years now and blood tests confirm euthryoid (remission) state. It didn’t happen overnight though, and takes time and determination along with your physician there to back you up in this decision. Would I go back on ATD’s if I slipped out of remission. You bet!

Good to see that you are looking into ALL of your options thoroughly.

Take care of yourself and keep us posted.

James

[annabalfe November 14, 2008 at 1:33 am Post count: 4]

#1075416

Hi Mike

43 year old female here and have been on atd’s for two years. I currently take one methimazone 10mg per day – down from 30mg when I started. I found the side effects of the meds were pretty bad but eventually they went away. The worst effect for me was the constant heartburn and indigestion, but it too has gone away. So it’s not such a bad deal treating it this way if you can bear the meds. However, because I have heard that rai can aggravate the greaves disease I have been against it for myself. My eyes are very mildly effected and I would like them to stay that way. Also, for me having a part of my body irreversibly removed scares me. One other thing I found is that the beta blocker (atenenol) is good at the beginning but can cause dizziness and numbness in the hands and feet. I took myself off that once my thyroid stablized and have never taken it since. Not sure if this is the right thing to do or not, but so far I don’t think my body has needed it.

I think that the whole Hyper/graves thing is a bit of a bummer in general because once it sets in, well you really have to work through some not so good times. The first year for me was pretty bad as I was constantly unwell and tired and depressed. However, thankfully things do settle down and not everyone has the same symptoms. I have to say that these days I feel pretty good and still taking the methimazone every day or so. Also and friend of my who got diagnosed 20 years ago and had the rai treatment around the same time says it was wonderful and she has been healthy ever since.

I hope you can reach the decision that’s right for you Mike and like you say, you’ve got time to do the research. Good luck with it.

Regards
Anna

[Sasnak November 14, 2008 at 2:52 am Post count: 2]

#1019980

Hello, I am new to the site and recently diagnosed with Graves Disease. I am a 40 yo male and though new to this problem I am quite experienced in hormone replacement because of having Testicular Cancer twice and loosing both testicles I was placed on Depo-Testosterone over 5 years ago and have always in the back of my mind wondered if the two were tied in some how but of course have been told no. "I said that much hoping someone out there may have their owns views on that."

Now to get to the question that brought me here: I have had all the multiple blood tests, two t-scans and uptakes and currently am on beta-blockers and Anti-Thyroid Meds, now the next step is the RAI. My Endocrinologist highly recommends it because it is safer and with less side effects doing it that way. Going on a Thyroxine afterward is much safer than keeping me on the Anti-Thyroid Meds with the side effects and keeping the levels at a constant. After doing research I thought I was fine with that, until I came here and started reading some true life stories. Maybe I am just reading the bad ones and I guess of course if they are writing in they are probable having some problems. What I would like to know is the positive and negative of both treatments and is RAI treatment all that bad or is it kind of uncommon? I am really hoping for a lot of positive feedback, but I will take what I can get. I do have a couple of months to make up my mind, while at the Endocrinologist a month back he gave me several different blood tests one of witch showed me having a high red blood cell count, coupled with a few other symptoms led him to believe I may have Sleep Apnea. He would like to wait for me to do the RAI until after the full results back on that test and I get my CPAP Machine. I just look at all of this way…I have had all of my problems between the ages of 29 and 40 so I should be all fixed up soon and be able to breeze through the rest of my life ” title=”Very Happy” />

Thanks in advance for your help,

Mike

[Bobbi November 14, 2008 at 7:36 am Post count: 1324]

#1075417

Hi, Mike:

I had RAI 10 years ago. I had tried antithyroid medications, and they made me feel like my brain was swimming through molasses. So, I opted for RAI. It took a while to get on the right dose of replacement hormone, but during that time, I never felt as badly as I had while hyperthyroid OR on PTU.

I have many friends who have had RAI and are on replacement hormone. Some are on it because of thyroid cancer. Others of us are on it due to Graves. We are all healthy. The replacement hormone acts exactly like the body’s own T4. It is converted in the body to the form needed by the cells as the cells need it. So, in a way, it is a bit like a "timed-release" capsule.

In forums like ours, it tends to be the sick folks who post the most. Or the folks who are having difficulties. Once people get well, they stop coming routinely to sites like this. So, you tend to see the "sick" side of things, the "complications" side of things, rather than the healthy side of things. One of the best things about this board, however, is that there are a few of us, who are healthy, who have volunteered to answer questions and give reassurance. The sick posters outnumber us HERE, but not out in the real world.

I wish you luck with your decision.
Bobbi — Online Facilitator

[Ski November 14, 2008 at 3:19 pm Post count: 1569]

#1075418

I just want to jump in with a quick comment ~ "getting rid of our thyroid" is kind of irrelevant, once we’ve got Graves’. At our most recent conference, our medical director showed slides of cells from a healthy thyroid vs. Graves’ thyroid. The gland is not normal ~ it is not just being affected by antibodies, it has literally been taken over.

We are able to achieve a remission with ATDs (well, some are), but the thyroid itself cannot be saved. Either the Graves’ antibodies will kill it prematurely, or we remove it ourselves with RAI or surgery. A successful remission can certainly put off the need for replacement thyroid hormone, but not forever.

I think the most important piece of advice you’ve received here is to weigh each option carefully, and choose the one YOU prefer. All have pros and cons. All can work. Choosing seems to help in our healing, perhaps because we have more information than we might have had without our own personal research, perhaps because by that point we understand that "it is what it is," and we get through it, rather than fighting against the feeling "why did they do this to me?"

We wish you all the best ~ please let us know how the process is going!

[Sasnak November 16, 2008 at 10:28 am Post count: 2]

#1075419

I wanted to thank everyone of you for your input. First hand experience is just what I needed to help clear my head a bit. Dealing with Doctors as much as I have I have learned that they have a tendency to tell you what needs to be done but not necessarily why. Listening to people with first hand experience helps me a lot. Thank you all again for taking the time to reply to my questions.

Mike

[Katherine November 17, 2008 at 1:52 pm Post count: 8]

#1075420

Hi Mike,

I was diagnosed in May 2006. I’ve been reading the posts on this message board since then but this is the first time I’ve posted. Here’s my experience:
I, too, was concerned about killing off one of my body parts at the age of 29. My endo was very supportive of my decision to try for remission. For 2 years we were able to gradually reduce my ATD dosage but I reached a point where we were unable to lower it any further. At that point we decided to do RAI, which I had in June of this year. While I’m still at a point where we’re trying to figure out my replacement hormone dosage (started in early August), I have to admit that the RAI process was nothing like I imagined — It’s been much easier than I ever would have guessed! I don’t feel 100% yet but, knowing what I know now about RAI, I kind of wish I’d done it sooner. Those were 2 years lost on a treatment that didn’t work. I also had a huge goiter during that time, which RAI wiped out in a matter of weeks.

Good luck and keep us posted about what you decide to do.

Katherine

[npattersonModerator November 17, 2008 at 8:55 pm Post count: 398]

#1075421

Mike,

I am impressed with all the experiences that are shared here! You may even hear from someone who has had surgery. What I have to offer is a good bulletin on the three treatments compared. Send me an e-mail "nancyngdf@bellsouth.net", and I will attach it right back to you.
When we get the kinks worked out of the new bulletin board, it will be available for downloading, but we are not quite there yet.
The best advice you have been given is to make the best decision, with your doctor’s input. Use thisinformatiion to formulate your questions. And you are right, there are very few people who are doing really well posting things on the Internet. They are out living their lives! When you get better,please let us know about it. In the meantime, keep posting.

[carlydm08 November 19, 2008 at 9:22 pm Post count: 2]

#1075422

Hi there,

I am a 40 yr old female who had subtotal thyroidectomy almost 2 years ago. (very little of my thyroid is left). I chose the surgery option over the RAI as I discovered after lengthy research that if one has Graves Opthamology (affecting the eyes) RAI could make it worse. Since I do have Graves Eye Disease I opted against getting RAI and feel that I did make the best choice for myself. The endo I was seeing did not give me any information about the RAI except that it was cheap and quick and to me that wasn’t the best reason to have that treatment. I wanted what was best for me, not for the governments pocketbook.

I was off for about 6wks after my surgery and needed that time as I became severly hypothyroid and needed the time for my body to adjust to treatment. I had a scar for about a year and now it is very faint so if a scar is an issue it’s really a non-issue for me anyways and I scar easily. Hope that helps.

Carla

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