Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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Endocrine System
/ Graves' Disease Support Group

Seeing Endo soon nervous

thompson91
thompson91
Ok, I finally got an apt with the local Endo in 3 weeks. This was the third time I called them this week. Finally the doc saw my charts. When I called today she said it wasnt there at first but found it and it said URGENT on it!! I asked why and she said all Graves pt do. Ok, that doesnt make me feel better. I left her know how I would like to handle this trying Anti meds first and that for me I dont want RAI. She scheduled me with a doc who has been doing this a long time and is real good she said. I asked if he's old school and she said no he's up to date on things and even orders labs that the labs dont know what is. She scared me a little though and said she knows I'm against RAI but if he says to get then I should listen to him because he's so good. But I dont want RAI! I told her I've been researching on net and she said yeah the docs dont like that too much and there's so much more to it and info. How difficult does this get with wanting to try meds vs doing RAI the dr might want. My husband (who is trying to be supportive) says I'm getting all worked up for nothing. I'm hoping he'll be reasonable and at least try meds first. Does anyone know from your thyroid scans what #'s seem to be worse? And will most Endos let you try meds first? I have 3 weeks to "worry" about this.
bransnana
bransnana
Hi! A GOOD endo will let you STAY on meds at least a year to see how you do. If he/she knows how to dose Graves patients and doesn't overdose you, take you off the meds, put you back on etc...some actually do this roller coaster type thing then when you go hyper again, off the meds, (which would be normal after a few months) they say"oh, you have to have RAI, you're hyper still." or whatever. I was on meds for over 3 years, I am in remission now, so are quite a few who have been on this board and others. They feel good, unfortuneately the people who have had RAI, not so good. At least the people who are on these kind of thyroid boards.Research this throughly before you let any endo talk you into it! As Elaine Moore says"Graves disease is a self limiting disease" meaning it can come out and be bad but eventually it ends, either you go in remission and have normal labs or go hypo naturally. It just takes time and a good endo that will work with you and keep you on the meds for as long as needed. In Japan they keep you on at least 4 years and have a much higher remission rate. if you have regular thyroid labs and also periodically check your liver and white blood cells. My tests were always good. (liver and blood cells.)
thompson91
thompson91
Bransnana- I'm just praying for a good Endo!! I didnt know that your body would go Hypo naturally. Why is everyone so up in arms then? I know it can cause heart problems etc. So far my symptoms have been minimal and noone in my family ever had it. I'm grateful for that! Thanks for the info.
deleted_user
deleted_user
I was diagnosed in January but I now know I have had Graves alot longer. The medication is working great for me & I also had the double whammy of Grave's Eye disease. I am really against anything that is PERMANENT. I am not young, 53 years old.Hang in there & try to think good thoughts. It is really hard soemtimes but the worst thing you can do is worry. I have met alot of people since my diagnosis who have not had to have RAI or a thyroidectomy. Remember, it is your body and not your doctor's.
bransnana
bransnana
Yes some people with Graves and Hashi antibodies, like myself can go eventually hypo. If that happens you would go on Synthroid but at least it dies a natural death LOL! If you're older this is more likely to happen. most do well on the anti thyroid meds as long as the doc doesn't overdose you and you go too hypo and it feels worse than hyper, most say. as long as you keep the thyroid hormones in range but not too low there's no danger of heart problems. That's only with uncontrolled hyper.
dairytech
dairytech
Brans is right..I'm one of those that is going hypo naturally. As far as your Enod goes...they work for you! If you go in to see him/her...go in armed with info. We have lots of info you could print out to take with you. I had 2 Endos...my first was at retirement and was old school...I only saw him once because he wanted me to have RAI on the following Friday of my first visit....I just couldnt make that decision on the spot. He told me not to come back until I was ready to do RAI. He retired shortly after wards. My second endo just finished 17 years of endo school and took over the practice of my 1st Endo. I was soooo excited to see him because I thought he would be up on the latest and greatest. Wrong! He also wanted me to ablate and was going by my TSH instead of the FTs. I said to him...but the ranges for the TSH has changed 5 years ago...its a much narrower range now. He said...not yet they haven't! I was disappointed. I figured he must have been sick that day when they learned about TSH...lol...I never went back.

I have been at this site since Dec 07...we have had many success stories. We have a very high rate of remission. Watch your labs...if you can stay as close to mid range as possible regardless of what your Endo tells you....you should be able to maintain your symptoms. Keep in touch with the people here to help you with your meds and I'm sure you will be fine. Slow and steady wins the Graves race...Big Hugs....Kathy
deleted_user
deleted_user
It's interesting to hear that someone else is feeling pressurised and confused by what the supposed specialist is telling you - I feel like a number on a list rather than a patient at the moment!

I'm going to see my Endo on Wednesday and am too feeling very nervous. My Endo is pushing for surgery, but this is not a route I'm keen on at all. I was only diagnosed in February and realise that I was preety unwell at that time, but it just feels far too quick to be jumping to this without trying the meds alone for longer. RAI isn't an option for me (atleast something me and the Endo agree on!), due to my age and wanting to start a family soon, plus it'll make the eye disease worse. Surgery seems such a permenant and big jump in such a short time (maybe psychologically and physically I admit!).

My partner often says the same to me, he's thinks I'm becoming obsessed and that I'm letting this take over my life......how would they feel if they had something that was taking over their body and they had no control over it or what the docors decide?!?!?