[Anonymous June 18, 1998 at 2:50 pm Post count: 93172]

#1149609

Well, I’ve been lurking for quite a while but I would like to respond to your survey. For me, radiation will be my last resort. While waiting for my first visit with the Endo. in January I did a little research. I learned enough to know that I wasn’t ready for radiation right away, and mentioned that to him. Being open minded, he started me on the T drug and he took a wait-and-see attitude. So far, my levels have reacted “beautifully” to it, as he puts it, and hasn’t mentioned RAI since. Personally, I plan to finish out this course of treatment, which I assume is 1 year, and then see how long I can stay normal. Even though I have minimal eye involvement at this point, I have read enough to know that RAI can make the eyes worse. Besides that, I just don’t like the idea of “ablating” my thyroid if I don’t have to. While it is true that the majority of people will go hyper again at some point, I would rather put off the decision as long as I can.

[Anonymous June 18, 1998 at 2:57 pm Post count: 93172]

#1149610

Dear Casey:
Yes,Casey,I would take the RAI again in a minute,it gave me no problems that I’m aware of anyhow,no side effects and did not make me go hypo at all and it’s been about 3-4 yrs for me since I had it I guess I feel people get too up in a panic about this stuff but maybe with just cause I don’t know but I have had no troubles with it at all so it’s easy for me to sit back and say all this about it.hope this will help you,take care now Barb

[Anonymous June 18, 1998 at 3:01 pm Post count: 93172]

#1149611

Hi, Casey!

I understand why you’re nervous about RAI. There’s that unknown factor
about what’s going to happen in the future that’s downright scary.
We RAI choosers all felt that way at some point, and it’s a normal
reaction.

I took RAI in 1990. I had no side effects, and it didn’t interrupt
my work schedule. Within six weeks I had entered the hypo stage,
without gaining weight or having major mood swings. I began my thyroid
hormone replacement, and went through a couple of medication adjustments
as my thyroid continue to “die out” over the next year. I didn’t have
any problems adjusting to the new dosages. It took awhile to fine tune
my meds, but I’ve been on the same dosage of Syn— for the last three
years now. I’m active, healthy, and most days I feel great! In fact,
the last time I needed my thyroid levels checked I did a complete
blood panel (including calcium, cholesterol, etc.) and every test was
within the normal range. RAI was the right treatment for me. It got
my hyperthyroidism under control in a short time, and it has allowed me
to do the career and activities that I enjoy.

Doctors will say that most of their patients have the same results
from RAI as I did, and I presume that’s why it’s the most widely
recommended treatment for Graves’. Remember, most people on this BB
are either newly diagnosed patients looking for info, or people that
continue to have problems with their treatments. There’s been many
BB posters that have gotten the help they needed and have moved on.
Of course, some of us just keep posting because we’ve made new friends
and want to help others along the way.

Are you choosing the right treatment route for you, Casey? No one can
answer that question. Everyone responds to the treatments differently.
Chances are you’ll be fine and respond favorably. Keep talking about
your fears and keep asking questions. At least when the time comes,
you’ll be ready because you’ve done the mental preparation beforehand.

Best of luck with your treatment. You’ll be in my thoughts.
Debby

[Anonymous June 18, 1998 at 3:11 pm Post count: 93172]

#1149612

Hi Casey et al

I was one of those who wondered whether I should stick with anti-thyroid medications in the first place. I was diagnosed as having Graves in late March. I was given three options: surgery, PTU for one year, and PTU/RAI. I picked the third choice, not knowing what consequences were, and thought it was a good and economical choice. I took PTU in April, next RAI (of course after the uptake and scan) in May, and afterwards, am taking PTU to keep hyper symptoms away, now in my sixth week. After taking RAI, I found the board, and was dismayed with so many postings about problems with thyroid replacements. These postings made me so anxious about the whole thing and about whether I will be one of those who have problems finding the right dosage of the levothyroxine. I have a history of problems with medications for different health problems.

If I knew beforehand, I would have been a bit more conservative with the choice and see whether I would be in remission. I also found successful accounts about patients who were in remission for more than 12 years after taking PTU. It made me wonder if I would be one of those successful patients. I found PTU got rid of hyper symptoms despite my GI problems. As I said in my recent posting, one never knows what is
ahead what would happen if one picks RAI, PTU for a year or PTU/RAI. Recently, I had a good discussion with my supportive family doctor who assured that it is 10 percent of patients who have problems with the replacements. I hope I am not in the 10 percent category. There is so much I want to do in my life. Life is short. Just a thought to share with you. Thank you for listening.

[Anonymous June 18, 1998 at 3:49 pm Post count: 93172]

#1149613

Hi Casey

Your question is exactly what I am facing! I saw the dr. last week and he suggested I give some thought to whether or not I want to do the RAI in November after I seen him next. It pretty much blew me out of the water, because I have been feeling so good lately, I had allowed that remission word to crawl into the back of my mind.

Now, a lot can happen between now and November, so I have decided I am not going to let thinking about this take over my summer. But, this little voice keeps saying to me, “If it ain’t broke, don’t fix it.” Problem is, I’m not sure if it is broke or not!

Cindy

[Anonymous June 18, 1998 at 5:19 pm Post count: 93172]

#1050581

I’ve not seen many posts from people really happy RAI – maybe I am just viewing the board with a neg. filter?

Survey question of the day: If your levels were controlled with ATDs, but you couldn’t expect a remission,
would you choose the RAI route?

Casey

[Anonymous June 18, 1998 at 6:46 pm Post count: 93172]

#1149614

I would personally stay on atds and go to church and pray…..why would
you automatically asume–no remission….supposedly 30 percent do(that
is what my dr told me)Dont kill off that thyroid yet!!!!!!!!!

[Anonymous June 18, 1998 at 8:23 pm Post count: 93172]

#1149615

No way would I choose RAI if ATDs were working. I may be wrong, but I don’t know that there are any negative effects in delaying RAI while taking ATDs. So why wouldn’t you hold off until you were sure that there were no other alternatives?

Does anyone else know if I’m missing something here?

[Anonymous June 19, 1998 at 8:08 am Post count: 93172]

#1149616

Hi, Casey:

I do think you have a negative filter on, of sorts, about the RAI. The thing is, that there can be snafus with any of the treatment options. They may not work quickly enough to suit us. Or, we can go hypo (on any of them, including the ATDs) and start to gain weight by the globs. Or, whatever….. Depending upon our own set of priorities as we read these messages, we can unconciously choose those posts that support our own fears, rather than see the whole overview. I don’t think you are alone in this — as for me, I may have done the same thing with respect to the ATDs (focused on the negative posts, I mean). It is really, really hard, I think, to be competely objective when it is our body that is involved.

What helped me, and may help you through this decision is to make a list, of each of the options with their plusses and minusses. Look at the potential side effects of the drugs and replacement hormones. Try to analyze what YOUR priorities and goals and fears are. And see where you land. You might even talk about your list with your doctor, to double check that you are being accurate and realistic. I firmly believe that in some cases, there might be a very good medical reason to do ATDs over RAI, or vice versa. Or surgery over any of them. Your doctor can fill you in on these types of things. And it may well be that you have a real choice — that it doesn’t much matter at this point. But you have to get your thoughts as clear as possible. This is not necessarily an easy decision to make. But if you take the time to really think out what your feelings and priorities are, you may be more comfortable with your choice in the long run.

Wishing you a good day,

Bobbi

[Anonymous June 19, 1998 at 9:50 am Post count: 93172]

#1149617

Hi,

I just have to throw in my 2 cents on this topic.

When I got my dx for GD it was from a my primary doctor. The
literature given on GD did list all the treatments. However,
the doctor and the literature did give the impression that
the RAI was the best way to go with the choice of treatment.

I did feel crummy enough and scared enough that I did choose
the RAI right away. I had a family to think about and a job
to keep. I really did not have any sick leave on the books
because I used it all up the year before with another medical
situation. We just moved to a new home and the bills had to
get paid. My income was needed to maintain the budget.

I guess it all comes down to you gotta do what you gotta do.
Well, all of that is in the past now but the thought of the
possibility of going into remission sure does sound good!

Good Luck!
Michele B.

[Anonymous June 19, 1998 at 9:52 am Post count: 93172]

#1149618

Hi everyone

I was giving a lot of thought about the choice between RAI and PTU for one year. I have come to a decision that PTU or any other antithyroid medications should be given the first choice to give it a try before resorting to RAI because RAI’s role is to destroy (or ablate, a nice medical euphemism) the thyroid. Patients in Europe are given antithyroids first before trying RAI. Patients must be informed FULLY and be given detailed written information including advantages and disadvantages of each option. I am still blasting at myself for not doing my job by investigating first, but I was shocked and alone, wondering what I should do. I blindly accepted the RAI. I hope you all will all support EVERYONE who posts anything in the board or in the chat room. Now, I am trying to learn as much as I could about the medications hypos take. Sir Baden Powell (Jake knows who he is) said, Be Prepared…
Thank you for listening.

[Anonymous June 19, 1998 at 10:17 am Post count: 93172]

#1149619

Hi, my experience was that, when I was diagnosed, my doc explained the 3 options and recommended that I try the ATD’s for a year or so to see if I would go into remission. So I took them for about 3 months, but then my thyroid swelled up and I had this large goiter, so the doc increased my dose, but it gave me stomach problems, and I began to worry about the long-term effects of the disease, so after just a few days I opted to have the RAI, and I really made the decision, although my doc had said if I didn’t get better in 3 weeks we might have to do the RAI. I think the RAI was right for me, but if I had been able to tolerate the ATD’s, I would have definitely given them a chance. I mistakenly thought I could avoid the eye problems by having the RAI and getting my thyroid under control. My eye problems have continued to escalate, now I know that is a separate problem, so I’m doing my best to be proactive about that issue. Which is another issue altogether! But I guess my point is, having RAI doesn’t guarantee you won’t have the eye problems.

Best of luck to you,

Elaine

[Anonymous June 19, 1998 at 10:29 am Post count: 93172]

#1149620

Answer to that question: NOPE.

I took ATDs for one year… and despite a couple of temptations to go RAI in the beginning… I didn’t. I’ve been off meds and in doctor-certified remission for 10 months. I’m aware of several others who are in the same remission situation as me.

I look at RAI as the “point of no return” – there aren’t many decisions left after you do that. I like having choices. As long as my thryoid is intact, I have the choice should I get sick again… I think I’ll still go ATDs first… and only nuke as an absolute last resort.

Just my personal choice, now every person is going to be coming from a different point of view and what works for me may not work for you. I’m an eternal optimist… so I was bound to always hope and hope so more.

Blessings,
Glynis

[Anonymous June 21, 1998 at 10:55 pm Post count: 93172]

#1149621

After having an allergic reaction to both ATD’s, I had no choice but to have RAI. My endo explained to me that there were 2 schools of thought on RAI. One was to give a high dose and kill off the thyroid and then start throid replacement; the other was to give a very low dose and wait and see.
Luckily, my endo and the hospitals in my area believe in giving a low dose of RAI. My endo explained to me, that it could sometimes take as many as 5 years for the full effect of the RAI to take effect.
It has been 2 years now since I had the RAI. My T3, T4 and T7 levels are all in the normal range. THe only thing still out of line is the TSH. My endo explained to me that TSH is controlled by the pituatary. He checks my pituatary function yearly, and so far everything is fine. He said I could live like this for years.
The only medication I take is a beta blocker. I do not lose any time off from work because of my Graves Disease. The only weight I gained, was the weight I lost when I was severly hyperthyroid..
Also, I think that I am very lucky to have a great doctor who listens to and talks to me, and explains everything to me.

[Anonymous June 23, 1998 at 11:43 pm Post count: 93172]

#1149622

WOW – I’m trying to catch up a bit. What with trying to get a walk in each day and back to feeling like contributing to helping with the meals and condo chores I can’t seem to keep up with the BB and e-mails.

About ten years ago I was extremely hyper but chose to go on the “T” drug and “I” for my heart palpitations. After a couple of years I went off the drug and into an eight year remission. I felt so well that I forgot I ever had a problem with my thyroid. Several years ago I became hyper again and at that time my previous Endo had retired and the Endo I saw said symptoms get worse as you get older and as I was now over 50 she suggested RAI. This time I went for it. Never went hypo but did get eye disease about a year later. Still have not gone hypo three years later. EVERYBODY reacts differently and gets different symptoms. I’m glad I went the “T” route the first time. I had eight years where we did a lot of travelling and had a wonderful life. If I had gone the RAI ten years ago I might have suffered this eye problem sooner and we would not have had those wonderful years. I know we will have wonderful years again but at the rate I am going with recovery from these eye operations I’ll certainly be too old to back pack around Europe! Oh well I have enjoyed our cruises too.

Take care everybody, SAS

PS, I’m not saying everybody that goes the RAI route gets the eye disease either – unfortunately I did. I know lots of people that have had RAI, take their little pill each day and have a good life – it’s we here on the BB that have more severe problems and it’s great to have the board to glean the information and be able to vent when we need to.

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