[kkavich April 12, 2013 at 9:08 am Post count: 2]

#1059873

I was diagnosed with Graves this week and all I see are horror stories. My endo started me on meds and said he wants to get me leveled out and then do RAI (although I think I am more comfortable with the idea of surgery). Did anyone find what they would consider good relief from symptoms and what choice did you make? I was supposed to start the nursing program this fall and I’ve got plans to become a nurse practitioner and this has me terrified that I’ll be too sick to achieve my dream.

My most recent labs were:
TSH <.005
Free t4 6.9
T3 Free 17.95

and my uptake scan showed 53% after 24 hours

[AzGravesGuy April 12, 2013 at 2:26 pm Post count: 160]

#1178411

Hi and welcome to the Graves’ club!

I had some great alleviation of symptoms with antithyroid drugs (methimazole) and the use of a beta blocker (atenolol) when I was first diagnosed and even achieved a few years of remission.

I later decided to do RAI and I am still waiting to see some solid results, but it has worked for many others. Some people are able to manage their GD on antithyroid drugs alone, and others choose surgery. Surgery is the fastest, by far, but it carries its own risks.

The problem with GD is learning patience. Whatever treatment route you decide to take, patience is key.

Research all 3 treatment avenues and choose whatever you are comfortable with. Do not be discouraged. With patience and a treatment plan you believe in, achieving your dream this fall is completely possible.

Good luck and please keep us updated!

[KimberlyOnline Facilitator April 12, 2013 at 2:43 pm Post count: 4294]

#1178412

Hello and welcome! Yes, agree with AzGravesGuy that there is no reason you can’t stay on track for starting school in the fall.

And if you might be interested in working with an endocrinology office once your program is complete, your patients would no doubt benefit from your education *and* your personal experience!

The “Treatment Options” thread in the announcements section of this forum is a great place to start researching, as it includes two links that go through the risks and benefits of the three different treatment options. This board also has a search function (in the top right-hand corner of the screen), so you can run a search for “RAI”, “methimazole”, “thyroidectomy”, “surgery”, etc. to read stories from other patients.

Take care – and please keep us posted on how you are doing!

[Gabe April 12, 2013 at 3:25 pm Post count: 182]

#1178413

Welcome kkavitch! I’m new too and found this forum to be the best place to weed through all the confusion and fear. Real people with real experiences. This has been very helpful to me and I hope to you also.
Learn everything you can and make sure your endo is open to YOU helping manage your disease and help you make the decision that works for you (meds, RAI, or surgery)
For me it appears to be surgery and I’m anxious/excited for the consult in June. But for you it very well could be something different.
What I will suggest is patience (which is my biggest struggle) and finding ways to manage the stress of this particular diagnosis.

Regards,
Karen

[kkavich April 12, 2013 at 5:23 pm Post count: 2]

#1178414

AzGravesGuy, I read the thread about your RAI ordeal. I’m really glad you are starting to feel better.

Kimberly, my doctor’s NP also suggested I specialize in Endo, especially since my husband is hypo.

Karen, would you please let me know how your surgery goes. I really feel in my heart that is the best option for me.

[adenure April 12, 2013 at 8:47 pm Post count: 491]

#1178415

Hi!

I chose surgery (8 months ago) after being on methimazole for 7 weeks. I had to stop the meds. bc it was causing my liver enzymes to escalate quite a bit. So, I opted for surgery. The methimazole got my thyroid levels normal in that time and I did start to feel better about 2 weeks on the meds. I was on 5 mg. daily. I chose surgery bc I wasn’t comfortable with radiation, I have a family that I didn’t want to be away from, and I wanted to continue breastfeeding. I also was nervous about TED, so I wanted to avoid anything that could possibly contribute to any eye issues. I didn’t want to wait for my thyroid to die or have a dead gland inside me. Again, some of my reasons were valid (like being away from my family and wanting to continue breastfeeding) and some were just me being the way I am (wanting things to be done quickly, not wanting something dead inside me, worrying about TED).

Everyone is different, so do the research (with primary sources and reputable sources). Stay away from the horror stories- I sure read way too many of those and cried way too many nights, freaked out. Then, go with your gut as long as your doctor feels you are a good candidate for the treatment you choose. My doctor didn’t want me to choose surgery; he thought RAI was safer, a “no brainer” as he put it, BUT he did support me in my choice for surgery. So, that was good. Finding a very experienced surgeon in thyroidectomies is very important.

[copper07 April 12, 2013 at 9:50 pm Post count: 7]

#1178416

Hi kkavich,
my dr tried me on tapazole for 8 months before doing RAI. it took 5 months for my levels to change and then it was up and down. at one point, i was taking 60 mg of tapazole/day which i believe is the max for this drug or very close to it. i was also taking beta blockers for the terrible tremours and heart palpitations. Talk about needing patience.
i finally said to my Dr in December that i was sick (literally) and tired of this. i had a scan on Dec 28/12 and they scheduled my RAI for Jan 3/13

i am now 14 weeks post RAI and as you can see by my last blood tests, i’m just going hyper again. i have to say i’m enjoying the weight loss but, the other symptoms are not worth it and i know at some point that weight is going to pile back on when if or rather when i go hypo.

Now i did say to my dr in december that i wanted surgery but she said lets try this first. i have a gut feeling after all this, i’m going to need surgery anyway.

i’m quite sure you’ll be able to do your schooling so keep your dreams about that!

Diagnosed March 2012, TSH <.01 / T4 84
RAI January 3, 2013
as of March 19/13, TSH <.01 / T4 46 / T3 23
still waiting to feel “normal”

[emmtee April 15, 2013 at 12:56 am Post count: 148]

#1178417

copper07 wrote:

my dr tried me on tapazole for 8 months before doing RAI. it took 5 months for my levels to change and then it was up and down. at one point, i was taking 60 mg of tapazole/day which i believe is the max for this drug or very close to it. i was also taking beta blockers for the terrible tremours and heart palpitations. Talk about needing patience.

Copper07 – It sounds like you and I followed similar paths. It took me almost 5 months on Methimazole (Tapazole) before my T3 and T4 were both in the normal range, and that was on 60mg. I was concerned about the high dose and asked my endo. She said that it’s a high dose, but we could go higher if needed. I did actually meet someone (she was drawing my blood for one of my blood tests) who had been on 80 mg at one point. I didn’t stay on 60 mg for very long. I suddenly went hypO. Now I’m on 10 mg and my T3 and T4 have been in the normal range for several months.

kkavich – Don’t worry – the first few weeks are the worst because anxiety is one of the symptoms of the disease. I think everyone should give the drugs a try before they consider a more permanent treatment. When you’re first diagnosed, you’re just not emotionally fit enough to make such a big decision. You can always go off the drugs, but you can’t undo RAI or surgery. One thing that is really hard to face is that it may take a really long time to get back in the normal range. Your body doesn’t care about calendars and timelines. It will take as long as it takes. Trying to rush will frustrate you more.

I’m satisfied with my methimazole for now. My endo said it’s unlikely I’ll ever go into remission because of the size of my goiter, but my thyroid is actually smaller than it used to be. I’m hoping that this reduction in size will make any future treatments easier.

[linzyyyy April 17, 2013 at 12:11 pm Post count: 21]

#1178418

I was diagnosed in November and bad RAI a few days later. I went hypo in 8 weeks and now I’m adjusting my synthroid dosage. I feel much better. You will be ok!

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