[Meredith2021]

in reply to: What do you think of this theory? #1185926

Kimberly— on the 6-25 you wrote that ATA labels the evidence for ATD pretreatment before RAI as “Strong recommendation with low-quality evidence.” What does that mean? How do they label high-quality evidence?

Re doctors and treatment, you said–“ there are a lot of other issues that aren’t fully settled, such as pretreatment with ATDs prior to RAI. “

I’m worried. A doctor said to take ATD before RAI to block possible Thyroid Storm, maybe serious. Said most people don’t have side effects from ATD, but I fear them from what I read. How to predict?

At least 1 study says ATD pretreatment NOT needed in many cases.
Clip — NIH study– back in 2001. One of the authors is Dr. David Cooper of GDATF. Says– “The findings support the recommendation that most patients with Graves’ disease do not require antithyroid drug pretreatment before receiving radioiodine.”
And, in the past GDATF talk on RAI, Dr. Avram said ATD is ‘occasionally’ given pre- RAI. Not sure why occasionally.

Kimberly, I wonder what was your experience on Methimazole? I saw your post, March 2009, replying to question by ‘enough3’.
You wrote:
“I am on Methimazole, but I started creeping hyper again after my Endo and I agreed to cut my dose in half, because my levels had been steady for 6 months. So I understand your frustration!
Hopefully, you can get a new set of labs soon and start to get things back on an even keel.”

I read ATD side effects increase with longer use. As pretreatment, what’s chance of side effects like rash, hives, joint pain, mouth sores, nausea? How bad? Some reviews on Everyday Health site are scary.

Since RAI has higher efficacy and less side effects, why do patients opt for ATD? Do they influence doctors, or do doctors influence patients?
What posts to read here, pro/con?

I would worry daily about signs of ATD S.Effects

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white blood count, liver. If have sore throat or yellow in eyes, etc — you must call doctor right away. So,if stop pills, when do side effects stop?

I’m 79, TSH 0.008. no eye disease or neck lump. Have small benign nodule. My heart rate is raised –but not bothersome.
I’m gaining back some weight–more energy now—and eating dairy I’d avoided to reduce iodine in food. Doctors said eat normal diet, and the GDATF person on phone said just don’t eat kelp and seaweed.

Why do some doctors seem to prefer ATD? Do some patients fear radioiodine, so tolerate side effects and relapse? How did you doctor explain it?

[Meredith2021]

in reply to: What do you think of this theory? #1185925

Kimberly– loved your article — ‘Playing on One String – Day to Day Life With Graves’….re famous violinist Paganini’s broken violin strings and our dealing with Graves.
Btw, I watched a PBS show called Now Hear This. A violinist visits EU towns where lived famous composers—Bach, Vivaldi, Mozart, etc — -he plays violin and tours the historic places with fellow musicians and also shows some old violins.

[Meredith2021]

in reply to: What do you think of this theory? #1185922

Kimberly. Thanks for changing my sign in, so no confusion with other person. How about changing my user name to Meredith– my 1st name. (ellen is my middle name)
Also on my other post, why does it say ‘Registered: 2020-11-08’?
I registered April 1, 2021, I think. Can we change it?

Your post was informative, and I’ll read, or re-read, the ATA guidelines you cited. Is there a webinar on RAI that I can see? Maybe with Dr. Cooper in a past lecture.

Re which treatment—seems some doctors and sites say that if you do take RAI, you should still pretreat with ATD. But I saw other studies saying that’s not needed, you can start with RAI.

Another poster, Liz, cited— https://pubmed.ncbi.nlm.nih.gov/31482765/

The conclusion of the study: ‘Patients using ATD have only a 50.3% chance of ultimately avoiding ablative treatment and only a 40% chance of eventually being euthyroid without thyroid medication.’

And as you wrote—‘RAI was the front-line treatment for Graves’ in the USA. These days, ATDs are more commonly used in newly diagnosed patients.’

Yes, I’ve read the trend is changing toward more ATD. Why is this?
And I’m interested why in Europe ATD has been more commonly prescribed. Interesting article on this in Endocrine News per the Endocrine Society: “Transatlantic Differences Treating Graves’ Hyperthyroidism”.

It quotes the writers of guideines for the professional organizations here and abroad–Dr. Ross and Dr. Kahaly. But it doesn’t really go into the reasons for the difference. I checked the web but can’t find.

[Meredith2021]

in reply to: What do you think of this theory? #1185919

Hi Kimberly—thanks for your reply June 11. Per your advice I’ll update my screen name, ellenb. Do I just log out, and then re-register, or what?

Re treatment– you wrote:
‘I suspect that what you’ve read is that RAI is successful in dealing with the hyperthyroidism, as opposed to bringing about remission from Graves’.

Could you clarify that? I’ve read that RAI does in fact cause remission from both H. Thyroid and Graves’.

And I have a question on GDATF’s interesting February webinar that you mentioned— ‘The Long Term Use of Antithyroid Medication’.

Two experts spoke on the advantages of anti-thyroid drugs as the best treatment—including Dr. David S. Cooper – professor Johns Hopkins, past President ATA, editor of endocrinology journals, etc.

They showed statistics that ATD was better than RAI, but also they showed that it led to actual remission in only 50% of cases. And said many patients prefer ATD, so doctors go along with patients’ preferences, if possible.

But the surprise was that towards the end of the webinar on ATD, Dr. Cooper said he himself took radioactive iodine (RAI) for his own Graves Disease. Said he’s doing fine, and he said so do most people who take it!

What did you think about that? I don’t get why Dr. Cooper would give a lecture promoting ATD, then tell us he used the other treatment, RAI, for his own Graves Disease.

GDAFT recently had an article explaining RAI advantages, written some years ago:
“Treating Graves’ with radioactive iodine– Treatment of Graves’ Disease by the “Atomic Cocktail” by Malcolm R. Powell, M.D

So why do patients or doctors choose ATD (Methimazole) with frequent relapse rates? And mainly, the side effects can be so much worse.

Also, some doctors say to use ATD as pretreatment for RAI. But, an article in Medscape Medical News said:
Radioactive Iodine Can Be First-Line for Hyperthyroidism (in the UK)

Thank you for any feedback. It’s a confusing matter.

[Meredith2021]

in reply to: What do you think of this theory? #1185917

Gianna—
Hi, I’m trying to decide on treatment for Graves.
Can you tell me— how was your radioactive iodine treatment?
What side effects if any did you have? How did you tolerate it? How long did you take it for?

Why did you decide on RAI instead of anti thyroid drug, like Methimazole?
And did your doctor discuss taking ATD before RAI as -pretreatment, which some experts recommend, apparently?

I keep reading that RAI is more successful at remission and with less side effects. Yet, a couple of doctors told me they use mostly ATD. I don’t know if this is a trend or what. I may look for a new specialist.
Any feedback from you on your experience is appreciated.

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