[Sube08]

in reply to: Graves- Doctor says its time for RAI #1183652

I was diagnosed 8 years ago, after 5 years of PTU and Beta blockers my doctor kept hounding me about it so I finally said ok to RAI. It was an anxious time before and after, mostly anticipation of what will happen next. Nothing about the RAI process is frightening, you go in for an uptake scan, then the next day you drink the stuff and go home and don’t have contact with anyone for a few days while the medicine clears out of your system. Then you wait, sometimes weeks and months for your thyroid to slowly die off.

It’s been three years almost exactly to the day for me and I’m still hyperthyroid. The difference for me is that I don’t have any ill effects from being hyperthyroid at this point as I believe it killed off a bunch of my thyroid just not all of it. Of course I’m at odds with my new Endo because she’s pushing for more RAI, it’s sad really because I had my last Endo, that moved out of state, convinced to let it be and let me take the Methimazole, I no longer need the Beta blockers. My thyroid levels have fluctuated some but mostly the T4, T3 and TSH are all below 5.0 (I started out in 2007 with a T3 of 1299.0 and T4 of 356.0)

I found through a co-worker an Endo that actually SPECIALIZES in Thyroid disorders and that’s a rare find! I’ve got an appointment with him in a month, to see what his opinion is. So you can always get a second opinion.

If you have insurance a phone call to them to find out what it pays would be helpful, unlike myself I never gave it a thought. But that’s just my experience and I hope it helps in someway. This form has been a god send to me, I’ve found out so many things I never new but was glad to find out and it’s made me an educated patient.

Best regards Suz

[Sube08]

in reply to: Well, here goes! #1173468

Wow Azguy, I just caught up with your progress. Your experience is actually helping me and I’m sure others understand how many ups and downs one person can have.

I’m one of those with a “failed RAI” also, but finally in October 2013 after 19 months (March 15, 2012 RAI) my TSH went from .006 to 2.77 with my ft3 and ft4 below normal but the bloodwork was done when I came down with pleurisy and pneumonia. So while my endo was shocked, stunned and in disbelief, told me I was cured and ordered up a script for synthoid, my PCP said don’t just stop taking the PTU and beta blockers just yet because that would be dangerous to my health. So I’ve backed off the PTU and Beta blockers like the PCP said abd the endo agreed as well, down from 12 PTU to 6 a day and from 6 beta blockers to 3 a day for a few weeks and then have new blood work done to see were I’m at.

I’ve recovered from the illness and am feeling fine with the lower dosages. I actually ran out of PTU and was trying for 1 pill 3 times a day but started feeling nervous and such so I got the script refilled and went back to 6 a day, which is still a lot but less then the 18 a day I was taking in 2007. I’m not considering any other treatment at this point since I don’t have the other symptons that you speak of. I feel lucky about that and was about to consider another dose of RAI before this last bloodwork. The funny thing is I just made my last payment on the RAI treatment I received in 2012 in Oct of this year and then my TSH rose. I thought darn maybe I should have paid that bill off a little sooner I would have had better results sooner!

So your not totally alone in a “late bloomer” reaction to the RAI but please keep up the post because I’m very interested in your outcome and pray for your health and wellbeing.

Thanks again!
Sube

[Sube08]

in reply to: Well, here goes! #1173571

I find all of this information most interesting. I too had RAI in March 2012 and I’m still hyper, I take PTU and my dosage has gone form 18 pills a day to 9 since RAI but still taking 40 mg of beta blockers 3 times a day. So I feel your pain AZguy. My dr is encouraging me to have more RAI but since reading stories on this website I told him I’m waiting it out, plus i had to pay a $900 co-pay which I’m still paying for and I remind him I’m still paying for it. I take my meds on schedule and I feel fantastic! My T3 and T4 free are in range or low and my TSH is undetectable but moving up to .006 from .001 so it’s all an improvement to me. I think staying on top of the meds is a big plus and I feel my body is healing from some tramatic events and it’s going to work out. Thanks for sharing your stories, this website is the best thing a Graves patient can find.
Sube

[Sube08]

in reply to: A question about Thyroid Storm before my dr appt tomorrow #1170617

Dear Sarah,

I feel a kinship with you, in 2007 I was told I was hyperthyriod as well, my levels were similiar to yours, t3 800 and t4 high as well with no detectible tsh. I was also scheduled for back surgery very soon as well, it was the pre- op blood test at my GP that made the discovery. My heart rate was high and I had many other issues that I was so use to I didn’t give it a second thought and pretty much in denial. I was put on PTU and Beta Blockers for about a month before I had surgery and post-op recovery was very scary, but I made a full recovery.

My dose at the time was 4 50gm of PTU 4 times a day and 2 20gm beta blockers 4 times a day, it took months to see any change but I felt better after I started taking the beta blockers which calm the heart, trimers and such and I’m sure the PTU was working as well. My options were keep taking meds, surgery or RAI.

Now it’s 2012 I’ve been taking the meds ever since only more 6 PTU 3 times a day and 2 beta blocker 3 times a day and I’m just now seeing my levels the most normal they’ve ever been and I feel great. I started out with a good endo but bad at time management, then went to my GP that bless his heart would have done anything for me but I wasn’t really improving. Finally after asking around and searching I found a great Endo that keeps timely appointments, listens, informative and is helping me make the decisision to go through with RAI. That’s why I joined this site for some helpful infor for myself but after reading your stories I thought I could calm you a little by sharing my experience and how long it takes for real improvement especially with levels as high as yours are now and mine was.

It sounds like your having a lot of anxiety about it, which is expected and also makes your condition worse especially the heart rate, I say this because I’ve been there. What I did was talk to my GP about this and he prescribed some anti-anxiety meds, OMG I can’t tell you how much those helped. While I know you’re uninsured, doctors get free samples all the time and I’ve been uninsured before and my doctor has always been most generous with these because he’s a great doctor. I think you have one too and perhaps you could mention this to her and see what you both can work out.

Try some deep breathing excercises or yoga, go to the library and check out a book on Graves and read up on your condition that way you understand it more and can help with your recovery. Also meds like cold pills, caffein, sugar and smoking can cause your heart to race even faster making you more uncomfortable. Actually after taking benedryle like pills can make my heart race, causing more anxiety and heart palpatations. You really need to asess everything you do, eat and drink and how it effects your heart and nerves. I know it’s hard to be calm with so much going on but reading and understanding the condition can make a world of difference. It did for me, be involved and be smart. I just know I can’t go on taking all this medicine but I’m freaked out about RAI but that’s my problem.

Take care,
Sube

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