Newly diagnosed with Graves...

[dillylilly]

I'm currently trying to weigh my treatment options. I can either take the anti-thyroid medication and see if that works or do RAI. I'm confused and nervous about what to choose. I don't know my exact levels, but I have had symptoms of itching, heat intolerance, and weight loss for almost a year now. My endo says I need to get started on treatment this week and I need to make my decision today. It seems the more I read, the more I question myself and what is best for me. Please tell me about experiences for both treatments and what sort of side effects I can expect. I know RAI is supposed to be more effective, but did anyone go into remission just from the anti-thyroid pills? Thanks for your help.

[GD Women]

Hello and Welcome,

I did RAI 11 years ago and have had no problem other than right after RAI going from hyper to hypo. Once on meds. and level normal, things improved. Unless you have specific questions about RAI, I will leave it here in saying I feel great!

ATDs are a chemical that blocks the production of thyroid hormone, so by taking ATDs, a chemical is introduce into the body that interferes with the chemical process by which thyroid cells take iodine and make hormone. The dose that is taken should be a dose that interferes with enough hormone production to keep a person from being hyperthyroid, but doesn't interfere with so much that the person becomes hypothyroid. It does nothing to cause remission, no matter what the dose. The dose that is taken might fluctuate over time, because antibody levels can change. If the antibody levels do drop, it might be possible to go off the drug for a period of time. When a person is off the ATDs for a long-enough time, technically a year or longer, then it is called "remission." But remissions by definition, is temporary.
The issue of whether remission can be achieve is due to antibody levels.
Antibody levels rise or fall for no well-understood reason. The antibody levels could rise again, and make the person hyperthyroid again.

The definition of "remission" is being able to go off antithyroid drugs for a period of a year or more without needing medication to stabilize thyroid hormone levels. Going off the drugs for a couple of months is not necessarily a remission. A lot of Gravers who experience going off the medications think they are "in remission." However it can take time for the effects of the medication to wear off, depending upon which ones were taken. The real test of remission is being able to be off medication for a considerable length of time. Remission does not mean "cured."
For some, even when hormone levels are under control and back to the normal range, will experience symptoms to where its not toleratable.
Although it takes only 10 days to two weeks to begin to feel better, one continues the medication for 12 to 24 months. Studies show that this treatment is about 30 percent effective — especially for those whose hyperthyroidism is mild and for whose who started treatment soon after the illness began.

Another issue to take into consideration, studies have shown that ATDs treatment before radioactive iodine therapy is associated with a higher treatment failure rate than therapy with radioactive iodine alone in Graves' disease. Thus patients treated with PTU may require a greater radioactive iodine dose to ensure adequate treatment of their disease. - Thyroid Federation International


You need to, if you haven't already, read up on all three treatment option so you can make the best treatment choice that fits your life style and best for you. Go to reputable sites such as, Government, thyroid orgs., thyroid associations, and Medical. Stay away from forums that are negative and anti to any of the treatments. A lot of agendas and misinformation in cyber space.

Good luck

[DebM]

:D I was diagnosed as hyperactive in March/April and about 2-3 weeks ago finished up the regimum that my endo set me up on. I had severe panic attacks and one time ended up being transported to the emergency room because I had no clue what was going on other than my heart was racing and I thought I was going to black out. He put me on tapazole and then lowered that. Then he added levoxyl because I became hypo. His treatment is 6 months of meds, then go off to see if my thyroid would work correctly. Next step if I become hyper again is the RAI which I'm not looking forward to and hoping that I will be okay. I never lost weight being hyper, I gained. I think because I felt so out of control that my eating was out of control also. Luckily I'm fairly slim so the weight gain 10# wasn't too bad.

My question is this. I have not been able to wear my wedding rings since this all began. Now about 5 years ago I weighed the same as now (with the extra 10#) and I still could wear my wedding rings so I know it's not because I weigh more. Anyone else have this happen? I had read somewhere where your fingers can "widen"?????? I sure hate to think about getting them resized if something will change. But then again I could go for a bigger rock!!!

[GD Women]

Welcome Deb,

That is the first time that I have ever heard fingers being effected due to thyroid or thyroid medications. Could you be retaining water? I have read from reputable sites that the 10 to 15 pound weight gain is from water retention. Perhaps when you get the proper and permanent treatment, fingers will go back to normal, plus you might lose the weight too. So don't do anything to your rings just yet. Get treated so that your body can heal first. On the other hand, go for the bigger rock;)

[Deedah]

Are you asthmatic??? On any steroids??? Steroids can cause weight gain in unusual places. With my daughters first asthma attack she spent a week in the hospital, and continued the meds for quite a while afterwards. As a result her fingers were thickened, and her neck area became chubby. Sounds weird, but when meds were discontinued everything went back to normal.

[DebM]

No, I'm not asthmatic. I used to take water pills to control my bp but had to go off them when I developed major potassium loss!!!

[Jeff Houtz]

By now you have made your choice I assume. My two cents are; once you decide to ablate your thyroid there are no other options open to you. ATD's at least give you some chance at retaining your thyroid. Your thyroid is part of a negative feedback system and affects multiple systems. True you can take replacement therapy but it is a finite dosage where the Thyroid responds to the increased and decreased needs of you body naturally. There are certainly cases where ablation is the option. If after ATD therapy (about 1 year for most US docs) you decide to ablate due to a relapse after removal of the MMI or PTU that's up to you. Just a caution to all newly diagnosed patients...ablation is final and replacement hormone is forever....

[dillylilly]

Thanks for everyone's response. I decided to try the ATD's first. My endo put me on PTU at my request. I know it will take longer and the failure rate is certainly higher than RAI, but I couldn't bring myself to do something permanent like RAI without at least trying the alteratives. If I have to do RAI at a later time then that is ok. I'm just thankful my endo didn't push me towards one treatment over the other. He let me make the decision and didn't question it when I told him my choice. Let's hope this puts me on the road to some relief.

[bradybunch]

dilly,
I am glad that you made that choice, like if I had the option to try ATD first, I would have. I didn't. What can it hurt right? Try the less evasive procedure first. Just make sure to have your labs done regularly, and have your white blood cell count checked routinely as well.

Deb,
I have read about the fingers as well, and that usually comes with PTM, so if that is really the only thing affected and not your lower parts of your legs or leg, I wouldn't think it was Graves related. But why not go for the bigger rock anyway!LOL

Valarie

[sharris123]

Hi Deb, hey, I have not been able to wear any of my rings for about two weeks now. my starting weight was 150, I went on a diet, and lost 20 pounds, found out I had Graves so I dont know if it was the diet or that! anyhow, my rings were loose, now they are very tight. I had RAI with no problems on November 30th. I have about 2.5 more weeks to go to getting on meds, which I am looking forward to. I am sleeping now! at least 8 hours a night and I just want to cry because its been so long :o) anyhow, I got the finger thing too :o) not too worried tho. my legs did the same thing to me. they are back to normal now also. I dont have pain like I used to either :o) just wanted to give you a bit of feed back. take care! S

[jess12808]

First:
I went on ATD(PTU) first, but I didnt have much of a choice since my Graves was diagnosed during pregnancy and RAI isnt an option during pregnancy. The PTU did wonders for me. Then I had a bit of a problem post partum and now I am SEVERELY hypo....we (my docs and I) are still figuring it out.
I think had I been able to make the choice based on my levels and my thyroid scan I would have gone with the RAI. That is totally based on my case and my blood work though.
As far as the finger thing-That happened to me for awhile. I had to take my rings off for about 6 months. Ive heard it happening to other people too...:)

[britzy1974]

I had RAI done twice and now i'm on Eltroxin to try to regulate out the rest of my thyroid troubles.

I've had Graves for 5 years now, and I tell ya, I'm sick of being sick.

My specialist that I have now said that I was starting to get toxic from the disease because it had been untreated for too long.(previous doctors were a joke and didn't know what was wrong).

now i feel okay other than being constantly tired .

get treatment as soon as you can..............don't leave it as long as the ex-doctors I had did.


Take Care