[barbra]

#1060067

I was diagnosed the middle of April. Had an ultra sound, nuclear uptake and biopsy and was put on Methimazole, Propranolol and Nortriptyline.
Saw the Endo today for a first visit. He seems OK, asked a lot of questions as did I. There was a thorough examination and explanation, much more so than my PCP, who diagnosed the Graves to start with.
He said that if I agreed the best way to go is to do the RAI he would set it up. Sounds good to me. When I got home the phone was ringing, the hospital on the other end telling me to come in on Monday, July 1st at 9AM for the procedure.
What I’m not looking forward to are the 4 days of special dieting, same stuff I went through before the nuclear uptake. Maybe I can just sleep from Thursday until Monday, yeah right. Afterwards will be 5 days of solitude so the neighbors and family won’t glow in the dark. And the dog will be on vacation as well.
I’m glad this is moving along, although my head is still spinning.
I hope it works. Reading some of the posts I am not so sure anymore. The Endo said that failure is very rare. Well, I guess we’ll see.
So, if I don’t starve to death before next Monday, I’ll shout at you all again. If you let me.

Barbra.

[snelsen]

#1180083

Welcome to this wonderful forum.

WOW! YOu are moving right along!
Sounds like everything is pretty squared away. If you are comfortable with the decisions and procedure, and it sounds like you are, that is great.

I am suggesting that you begin to keep track of your labs, begin to understand them. You did not say how you were feeling, or are feeling now. Must be better?

Everyone here has chosen one of the three choices for treatment, RAI (radioactive iodine, continuing on ATD’s (antithyroid drugs) or surgery TT (total thyroidectomy.

Absolutely, do continue to write. We will all be your new best friends!
Sooner or later, you will have some questions, and/or be able to help someone else!

I wish for you that the next few days go fast! Bet they will! You sound very prepared and informed.
Best,
Shirley

[bigad]

#1180084

Good luck with your RAI Barbara!

I was diagnosed with GD in May (started Beta blocker and blood thinner for afib), and was scheduled for the RAI 1st week in June. Decided to postpone RAI for several reasons. Now going the MMI and healthy diet route for now. If no remission within a few years, a TT has moved up on my list.

My dad had success with the RAI when he was around my age…he’s about to turn 85 and just checks his levels twice a year and has been stable on synthyroid.

All the best,
James

[Kimberly]

#1180085

Hello – We do have many members here who are success stories with RAI, but it’s definitely important to understand the risks before committing to any of the three treatment options.

RAI may be a concern for patients with eye involvement (as there is a higher risk of development or worsening of eye disease) and for patients who are looking to plan a pregnancy in the near future. Also, hopefully, your doc explained the process of getting your thyroid levels stabilized post-RAI…it’s definitely a *process*, not a quick fix!

Of course, *all* three treatment options have risks and benefits, so the important thing is to do your research, consult with your doctor, and make an informed choice.

Take care – and please keep us posted as you move into this next phase of your journey!

[SueAndHerZoo]

#1180086

Hi Barbra. Congrats on making a decision on one of the three treatment options….sometimes the research and deciding is as painful as the disease! This is happening really fast, though, so I have to wonder, was it you that told the Endo that RAI was your best choice, or did he tell you and asked if you agreed? Making such a major decision after only meeting him once kinda makes me nervous. I have been seeing my endo for over 6 years and just recently took the plunge to talk about surgery. He suggested RAI as the easiest and least invasive solution but after explaining to him why I thought surgery was much better for me, he agreed. My surgery is July 16th but it’s something I’ve thought about for years.

Have you had any eye symptoms? Are you prepared for the roller coaster of thyroid levels after the RAI? I’m not trying to change your mind – I would just feel more comfortable knowing that you have researched all the options before going in on Monday. Wow – even if it was your idea, that was a fast appointment for RAI!

Good luck in whatever you do, and please remember to make sure this is YOUR decision, not your doctors.
Sue

[snelsen]

#1180087

Agree with Sue. YOu have time. This is not an emergency. Everything she said is right on, and well said.
Shirley

[SueAndHerZoo]

#1180088

snelsen wrote:

Agree with Sue. YOu have time. This is not an emergency. Everything she said is right on, and well said.
Shirley

Thanks, Shirley. Us old-timers have to share what we’ve learned during our long and tedious travels with this rotten disease.
Sue

[msled]

#1180089

I was very interested in reading this thread. I was never given options. The first Dr. put me on PTU’s and told me to come back in three months. I became very ill and was not allowed an appointment earlier to discuss what was happening. My GP took me off the PTU’s as I was allergic to the tapazole and the beta blocker was too strong for me (I guess I was given the standard dose). I was sent on to another Dr. who said I had to have RAI which I did. He put me on .175 synthroid within two months and a strong beta blocker. Turns out the dose was far too much for me and the only thing keeping me from having a heart attack was the beta blocker (hospitalized to find this out). My endocrinologist now sent me for RAI again two years later (which I have been told did the trick). I am now struggling with finding the right dose again. My endo. wants my TSH supressed which makes me really hyper (I could include all of my symptoms but it would be endless…). I have to adjust down for my sanity taking Ativan for the anxiety/panic attacks. I did ask last year when my levels went out of wack (high normal with TSH reading to low normal) to have my thyroid removed but was told there was no point, it is dead. I am not sure about this as when my dose is too high my neck swells on the right side and of course my eyes swell. I have to have one more eye surgery soon. I have been putting it off until I have a stable thyroid level. Not sure when that will happen. I saw my GP today and told her I had to reduce the dose to literally save myself. BP is normal and pulse but muscle weakness, scattered thoughts, insomnia, sweats and skin/hair changes. Also vision is a bit off (maybe from lack of sleep as I saw my eye surgeon yesterday and my eye pressure s fine, I have glaucoma, and optic nerve is fine. Had OD in 2007).

I wish I had been given the options as I am really sure I would have opted for the surgery after having more tests done to confirm the diagnosis. Originally only a TSH and T4 were done and a 15 minute visit with a pamphlet in hand when I left.

Good luck with your surgery, I truly hope you find the right dose right away….
msled

[barbra]

#1180090

My symptoms, initially, were a galloping heartbeat, weight loss and a small goiter, just big enough for me to notice. After I started the meds I felt fine, a bit fatigued and short tempered, but fairly normal.
I will be 70 years old at the end of August so I was not opposed to some resolution. The Endo and I discussed surgery as well and he said that the success does depend largely on the skill of the surgeon. Due to my age we agreed that fiddling with the dosage of the meds would be easier after the RAI since the Graves was discovered very early.
I agree. I believe in getting things done and over with and I am not going to obsess over tests, hormone levels, and the like, because I am not giving in to the stress. I went through all that with my husband, who fought stomach cancer for 7 1/2 years, and that was worse than anything I’m expecting.
I am aware that there will be miserable days and better days but I will not let this get me down.
I read all the posts with great interest, thanks for that, guys and gals, and I know some of the things to expect, although each of us is a little different and I am hoping for the very best.
This is the first day of the “special diet”, which only means that everything I like to eat is forbidden. Darn it, if it doesn’t have bacon written on it it’s just not edible!

Hugs to all of you.
Barbra.

[snelsen]

#1180091

Hi Barbra,
Your recent post is reassuring. I think most of the comments from your initial post were based on concern that things were moving very fast, and we wanted to be sure you felt content about the decision for treatment. It sounds you are fine with it. That is what matters.

Welcome (soon) to the decade I’m already in! It’s ok to fine, depending on the day!
Just like most other decades! (:

I suggest to you that you may find that the dosage of meds after RAI, may not easier, because you have had an RAI. As a matter of fact, it may take longer, for RAI simply takes longer, several months, post RAI for your thyroid gland to “shut down” so the thyroid hormone dose can be regulated for you. After a TT, the gland is gone-right then, and managing meds after TT really is much faster. That is why women who want to conceive, may choose TT over RAI for this reason.

I hate to have you have unrealistic expectations in this area, so this is a good conversation for you to have with your endo.

Getting to that “sweet spot” with thyroid replacement hormone, can take more time than you might expect.
And soon, you will have your own experience that you can share.

I am sorry you and your husband had the prolonged time with stomach cancer. It is terrible, as most cancers are. And I am sorry for your loss.
As someone who has worked in health care for over five decades, much of it in oncology, I have an idea of what it was like for both of you. Plus, I have have had five malignant cancers, with tons and tons and tons of chemo and radiation. So I really do “get it.”

The BEST of luck with the next week. Soon you can have bacon again! ANd it will be time for a BLT, one of my favorite Iowa midwest memories!
Do write as you march through you Graves’ world, all of your new friends on this forum are right there with you, cheering you on.
Shirley

[Kimberly]

#1180092

Hello – I’ve done the Low Iodine Diet before, and this “cookbook” from ThyCa (which is for thyroid cancer survivors, who have to follow this diet prior to treatment and scans with RAI) was really helpful. I don’t think there are any bacon recipes, though!

(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://thyca.org/Cookbook.pdf

[barbra]

#1180093

Thank you so much, Kimberly.
You’re a life saver. This book is great and will help a whole lot to keep my sanity.

Barbra.

[msled]

#1180094

Barbra and Shirley your lives and mine have crossed at the best and worst of times. I am sorry for your loss Barbra, I lost my husband four years ago after a four year war with kidney cancer which settled in his bones. Shirley thanks for adding more than two cents….any information we can share with one another is vital as ‘we’ know how it feels. You have gone through so much, your strength shows through the words you offer. Thank you.

I did not have to follow a special diet before RIA. The first time the Dr. told me there was no eye involvement so no prednisone…I had OD in 2007 and four corrective surgeries. Odd thing to share my dog has been on thyroid meds since my last RIA treatment (I was told that I needed to stay at arms reach of others and flush more than once and that my dog would be fine!!!).

I am still struggling for the right dose..I was fairly stable for two years then I went from high normal to low normal….several dose changes have made me hyper again!! I think the biggest problems for me right now is the dry mouth and eye swelling (not too say all of the things do not bother me, as we know it becomes all consuming). Unfortunately I have too much time on my hands right now, I am on vacation until Sept. Hope that the next couple of months get me back on track!!
msled

[barbra]

#1180095

OK, the RAI is all done and I am back home, sequestered for the next 5 days.
Had to take 24.2 Millicuries of I 131, in the form of 2 Sodium Iodide capsules.
The eno at the hospital said to stay on the diet for the rest of today, so I’m going to pig out tomorrow.
I will see my endo in 3 months and have a blood test in 6 weeks. Until then I’ll just wait and see how it goes.

I’m going to quit writing now because for some reason I had to write this twice, it kept disappearing.

Hugs.
Barbra.

[Kimberly]

#1180096

Thanks for the update! RAI generally takes at least 6 weeks to do its work, but definitely keep an eye out for hypo symptoms and contact your endo’s office ASAP for new labs if you feel these coming on. Every patient is different, but symptoms of hypOthyroidism can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse. It’s especially critical to catch hypothyroidism early post-RAI to reduce the risk of eye complications. Take care!

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