[Anonymous]

#1031955

Greetings,

I’ve been reading your postings for the past few days and am truely impressed and heartened.

I just saw an endo on Monday and she’s pretty sure I have Graves. I have to admit that I’m just a little freaked. I’m trying to decide which route to go for starters – RAI or the antithyroid drugs. I’ve done lots of online research, but would like to hear from folks who’ve been there.

Thanks, Dara

[Anonymous]

#1110017

Hi Dara,

The usual course of treatment is antithyroid drugs (ATDs) first for a period of time. Usually 6 to 18 months. Some people have a chance of going into remission after 6 to 12 months. The remission rate is about 30 to 40% depending one what books you read.

If ATDs do not work you may have to consider radioactive iodine (RAI) or thyroidectomy. Both will stop the production of excess hormone and make you hypothyroid and you will have to take thyroid replacement hormone for the rest of your life.

Some doctors will leave you on ATDs long term if you request it. But ATDs have their own problems in long term use.

No easy answers I am afraid to say. Some doctor’s want to do RAI right away instead of trying for remission. If your doctor is one of those ask why? Sometimes there is a compelling medical need to do RAI or thyroidectomy as opposed to ATDs.

Did you down load our welcome package and FAQs from the home page? Click on the green thyroid at the top of the page and it will take you to our home page.

Click on Welcome package and download it.

We are only a click away.

Jake
On-line Facilitator

[Anonymous]

#1110018

Hi Dara

I hope you get the right diagnosis, whatever it is. I mean, I don’t want you to have Graves’, but I wouldn’t want you to be told you didn’t have it if you did… if that makes sense.

I took the RAI route. I was first put on the anti-thyroid drug PTU for a few months because of another unrelated complication, but in January 2001 I had RAI, and then about 6 months later I went hypo (which was a tough time), but quickly after that I was started on Synthroid, which is the normal course of things after RAI. And now I feel great. I have a really hard time believing I existed in that weird hyper state. It’s so strange to look back on. Best of everything to you.

Kirsten

[Anonymous]

#1110019

I was just wondering if the administrator can help me on this. Are there any other “things” that can cause our body to think it has GRaves’ disease? I am just wondering. I am not typical Graves. Actually, I am text book Hypo, i.e. heavy periods, hair falls out in clumps, extremem weight gain even thought I consume less than 1K calories per day(30 pounds in less than 8 months), and extrememly tired, etc. I am just wondering if I could have some other “issue” going on masking itself as graves. My endo says I’ll feel better after my meds kick in, but I cannot live like this. It just makes me think that something else is going on. Any ideas or thoughts?

[Anonymous]

#1110020

Hi usfkd,

You don’t mention where you are in the treatment process. There are some points in treatment (after RAI or surgery) when we are expected to go hypothyroid, so if that applies to you, these symptoms may not mean anything other than your levels are off at this point. If you are taking ATDs instead, there is also the possibility that they can render you hypo if you’re taking too much.

There is another consideration, however, and that is the real trick with Graves’. Some people DO gain weight while hyperthyroid, though no one understands it. Hair loss is indicative of BOTH hypo and hyperthyroid conditions — it is a function of the body removing resources from “unnecessary” areas of the body, hair and nails being the first to go, in reaction to a severe condition (thyroid imbalance is taken very seriously by the body and it acts to protect itself and save resources). Exhaustion goes with both hypo and hyper, for different reasons. When we’re hypothyroid, we just can’t muster the energy to do anything. When we’re hyperthyroid, our body is working overtime all the time and we are simply exhausted from that.

Your best defense at this point is to keep a journal of your symptoms (including severity), and share that with your doctor every time you see them. Include in this log your thyroid hormone levels, whenever you’ve had them tested. This way you can visually see (and, more importantly, the DOCTOR can visually see) how your symptoms might relate to your thyroid hormone levels. It can be a tremendous help in getting where you need to go, and in determining whether your symptoms are related to GD or not.

Unfortunately, many women are diagnosed right around the time we begin going through perimenopause, so if you’re in that phase of life, that’s another thing to consider. Many of those symptoms mimic thyroid imbalance as well.

I think a journal is your best bet to narrow down the possibilities about what’s going on with you.

Best of luck, please let us know how everything works out!

~Ski
NGDF Assistant Online Facilitator

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