[lileone]

#1060381

My numbers were very indicative of Graves, from what the endo said:
TSH 0.01 (Range 0.40-4.50)
FT3 20.0 (Range 2.3-4.2)
FT4 5.8 (Range 0.8-1.
TPO 40
Pulse is 120-140 sometimes

Endo is pushing for RAI, but I’m very scared after reading things online. He won’t even consider ATD because I have a sulfa-drug allergy. Starting a beta-blocker tomorrow.

Any thoughts on my options, or words of comfort or positivity anyone can offer? Feeling terrible physically and mentally, as you can imagine with those numbers.

Thanks for providing a great resource here.

[Ski]

#1182315

Hi lileone,

Glad you found us, sorry you’ve joined the club, but there’s help here.

If you don’t like the idea of RAI, and are unable to take the ATDs, then of course the third possibility is surgical removal of the thyroid. Many people here have chosen that option, and are very happy with the results. If you can’t take ATDs, that could complicate things, since even those who choose surgery will typically use ATDs to bring blood levels into the normal range prior to having the surgery done. It can be extremely dangerous to have surgery while hyperthyroid.

Still, RAI was my choice (after considering all of them), and I’m perfectly happy with the results. The only thing I would’ve changed about my experience is that I would’ve opted for an ablative dose, rather than what was known at the time as a “therapeutic dose,” ostensibly meant to give me “just enough” to bring levels normal and leave my thyroid functioning. Turns out that any remaining thyroid tissue is vulnerable to the antibodies, and so there really is no such thing as a therapeutic dose, and it’s far better to do it once and be sure you’ve destroyed the thyroid completely. I ended up with a period of subclinical hyperthyroidism, and ultimately a second dose of RAI, before I really, truly began feeling well. Any improvement is a relief, when it comes to Graves’, so I was feeling better all the time, but I felt truly healthy once my thyroid was completely gone and my replacement dose had been fairly well dialed in. That can take a while, so no sugar-coating it here, but when the end result is feeling normal again, you bet all the time you need is worth it!

Good luck, let us know how it’s going!

[snelsen]

#1182316

Hi, welcome!
You have time to think this through.

Just for clarity, I suggest you speak to a couple pharmacists in different pharmacies, and ask if methimazole is contraindicated if you have a sulfa allergy. I have met several DOCTORS who were confused by SULFA and SULFER!

And, is your sulfa reaction a significant one?

No. We are not doc, and just people like yourself.
Of course you want to listen to your doc, but always good to ask lots of questions.

I chose the surgical route, for it was far, far more comfortable with me to have the procedure, have it ALL DONE right away, and go on with my life. Lots of people here have described their thought process, and their experience with a thyroidectomy extremely.

And, as you know, Ski chose RAI. It was not a choice for me cause I did not want it. That simple. Sometimes that is why we chose a treatment. Because we don’t want the other one! There’s no real answer, or right answer, except YOUR decision.
You will feel better on the beta blocker, and of course, your heart rate needs to come down, and it will.

Keep writing with your worries and questions.

Again, welcome! Sorry you have to join our club. Greatest thing is that you will have many new and wonderful friends who understand and “get it.”
Shirley

[apaul]

#1182317

Hi lileone,
Everyone has given good advice. I would like to add, I am also allergic to sulpha drugs (hive reaction) and I have been taking methimazole for almost 2 years without any issues. It might be worth seeking a second opinion if you are not comfortable making a permanent decision right away.

[lileone]

#1182318

Thanks, everyone. I’ve definitely come to the right place.

Yes, the doctor is the one who told me that methimazole is a sulfa-drug! Also the pharmacist told me the same thing. I’ve read online and here that it is not. So much conflicting info out there!

I AM allergic to sulfites, for sure. And I was diagnosed with a sulfa drug allergy during an ER visit formy sulfite allergy. Again, it’s all so confusing.

Due for an uptake scan this week,and terrified of that, too. Is it bad? I might cancel–very scared of radiation!

Have a secod opinion appt. Friday with an endo I found on this website. Wish me luck–he has GREAT ratings. I didn’t like the endo Friday. He was bossy, didn’t listen, and just talked right over me.

[cmac]

#1182319

lileone, nothing at all to fear from the uptake scan. You take a vitamin sized pill, come back the next day ( I have heard of some cases where you take it early in the AM and do it same Day, but I didn’t) and then have a 15 – 30 minute scan. It is probably closest to an open MRI for comparison. No pain, no discomfort, no after effects from the Uranium pill. Some noise from the machine, but nothing you can’t get used to. They will give you a card explaining the procedure and your tiny exposure to radiation in case you were to set off a geiger counter or some sensor at the airport or police station. You’re lit up for another 24 hours, but it is extremely unlikely there will be any negative effects from the scan. By all means have the scan, it is a very effective diagnostic tool. Good Luck!

[dhuffman63]

#1182320

I recently lost 15 lbs in 6 weeks and when my Dr. did a blood test on March 11 it showed 0.01 TSH. I have an endocrinoligist appt on the 28th and don’t know what to expect. From what I’ve read most cases of hyperthyroidism are caused by Graves. Is the uptake scan done by most or all endo’s? I live 2 hours from the appt site and since it’s on a Friday would I have other tests instead? Will medication fix the symptoms (trembling; heart palp; inability to concentrate)?

[Kimberly]

#1182321

@lileone and dhuffman – Hello and welcome! Just a quick note that many docs these days will skip the Radioactive Iodine Uptake & Scan and diagnose Graves’ disease via antibody testing (TSI or TRAb), which is done with a simple blood test.

For patients who do not test positive for Graves’ antibodies, the scan is helpful in distinguishing between patients with early stage thyroiditis vs. overactive nodules.

Also, some (but not all) doctors will use the scan to determine what dose of RAI should be given during treatment.

As Shirley noted, we are fellow patients here, not docs, but this is certainly worth a discussion with your own physician.

[Author]

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