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Hi Shannon….there are alot of post I hope I have time to respond to…but before I have to run I want to share this maybe goofy idea I have with you ( before I forget it).
What if you establish a fax or email relationship with an endo? The lab can send your reports to the doc, you could talk on the phone, or e-mail and have someone else to assist the GP, if you ever get to meet him, in prescribing and suggesting etc? It could be any doc anywhere…we could run a contest…whose doc will help Shannon? Or is there a doc you ever
had that you trusted , who maybe moved away and now you should contact?I know there are also docs who fly into areaS AND DO MEDICAL OUTREACH CLINICS, if a NEED IN AN AREA IS ETABLISHED..PERHAPS THAT ( excuse the caps) could happen. Anyway, wishing you well. Weather here is fine..a little morning brainstrom…perhaps a light drizzle in the afternoon. Jeannette
Hi Jeannette,
Maybe your goofy idea isn’t so goofy after all. I’m willing
to try anything. Haven’t yet encountered a doctor that I feel
is totally clued into Graves! Maybe this new GP that I will
get to see later this month will be my “miracle” doctor.
Who knows? I certainly can’t give up hopingLove, Shannon
Hi Everyone,
I called around for a doctor and the earliest appt I can get is
September 29th. My eyes are very sore and I know my levels are
off. I’m like Cybill with my mood changes
This is scary because I usually have to see a doctor quite frequently.
Even when I explained about the GD and asked if the secretary could
call me if there happened to be a cancellation she said that it was
highly unlikely that would happen. No Endo, no Optho and now trouble
getting an appt with a GP! geeze I want to scream. Anyway you lucky
Gd’ers with all your great specialist I ENVY YOU
Hope you all have a wonderful stress free day!Love to all,
ShannonI was diagnosed with Graves Disease about 4 months ago…I don’t experience a lot of the symptoms I’ve read about on this BB, but my doctor is still recommending RAI. I’m concerned about killing off part of my body, and moreso that it doesn’t seem to have worked for many of you. This feels like cancer.
My levels are incredibly high – mostly I’m just tired. Does anyone else feel seriously tired all the time?
What will happen if I don’t treat this?
~Kate
Hi Veganbeautykate:
Love that name, do you do a “vegan diet”?? I tried vegan for one year after being vegetarian for 2 years. I couldn’t do it. I felt real bad, and was CRAVED HEAVY PROTEIN terribly! Good for you if you are able to do it!
When I was hyper, I was SO tired, ALL the time. I was just working on my medical history, and had documented that I spend the summer before last, on my couch! I did not see any of the summer. I had RAI last December.
Good luck in persuing your medical decisions. You’ll get a lot of good info here. God bless!
Yes, I am a vegan, and boy can it be hard sometimes. I miss M&M;’s – but it’s worth it.
Now, here’s a BIG question…
What, exactly, is involved in RAI, and how will it make me feel?
Hi Kate ~
I’m so scared too. I’ve cried all morning and now well into the afternoon. I feel sad and helpless. But I’m not the one with Graves Disease — my 8 year old son does. He was diagnosed this past Friday.
Since then I have read page after page of Graves Disease research. I even learned that Pres. Bush’s parents BOTH have it. (even the dog Millie had something similar).
But the more I read, the more distraught I get. oh,here I go again…..
My son’s endo just called — she really wants us to choose RAI, the “sooner the better” she says. She says if we insist, she’ll prescribe ATD’s, but I can tell she’s not all for it.
I’m with you Kate — Killing off any part of my son’s body permanently is literally freaking me out. Oh why can’t his immune system just be ok???
He’s only 8 — what happens if they find an auto-immune disease cure 20 years from now? And if we try to wait for a miracle — will his body be irreversably damaged by then? Will his life be miserable in between? So many questions. So scary.
PS Kate — We are not vegan, but vegetarians.
I’ve always been a proponent for curing the cause of the disease, rather than treating the symptoms. So using RAI is foreign to me, even though my 50 year old sister had it done 6 years ago (for thyroid cancer) and has been OK ever since. She has never even experienced the “roller coaster” of finding the Synthroid balance that I keep reading on here — for her, it came right away.I’m probably just over reacting….
Good luck to you~
I see from your postings your doctors are worried about the side effects from meds, only a small percentage have side effects and if they do, it is normally within the first few weeks of taking the meds. There is alot of information coming from Europe on Children and the reactions to Radiation. Most of the doctors in Europe and other countries outside of the US only treat with meds, especially children, due to the more long term side effects of RAI on children. Unfortunately I am in VA but if I can be of any help, please e-mail me at mmoracz@city.norfolk.va.us. I have done alot of research on Grave’s and Children (what there is out there) since my son is only 4yr old and I have a long road ahead of me, I hope this helps…mm
I’m also in Virginia, up near DC. Great doctors here, but still, scary to have to see one all the time.
So, I guess no one has experienced nausea, or something else because of the RAI??
No side effects at all?
~Kate
Hi Kate,
First things first — welcome! Sorry to hear that you’ve become a member of the club, but we are very glad you’ve found us!
If you do research on untreated hyperthyroidism, you will find some pretty scary facts. Untreated hyperthyroidism can cause bone loss, muscle wasting (and remember, the heart is a muscle!), and many other dramatic problems. So NOT treating this is truly not a good option. Before there were any proven treatments, the chance of *survival* for Graves’ patients was 50-50. Luckily, now we have three treatment options that have proven to be successful, and given proper treatment this is not a disease people die from.
Now, RAI is not the *only* treatment available. There are three treatments that can bring hyperthyroidism under control: anti-thyroid drugs (we call them ATDs), RAI, and surgery.
All of these treatment options have their pros and cons, so it’s really best to research all of them thoroughly and choose for yourself. Your doctor may have very valid reasons for guiding you away from one or another, so consulting with your doctor is part of the process, but your doctor does not get to *tell you* which treatment you *will* choose. You have a part in this, it is your disease and your choice (of course, absent other physical conditions that would preclude one or another choice — for instance, a hemophiliac could not choose surgery.)
As far as being concerned about killing off a part of your body — remember this: your thyroid is being continually attacked by antibodies that your body has produced (for reasons no one understands). The antibodies trick your thyroid into overproducing thyroid hormone, which puts all your body systems at risk. It is not a healthy situation, and no one is even CLOSE to determining what is behind autoimmune diseases, so consider your thyroid a diseased gland at this point. None of your treatment options are as dangerous as being hyperthyroid.
Also, please remember that the people who come here are of two types: newly diagnosed (like you), and the small percentage of people who have treatment and continue to have problems becoming regulated — the 90% of Graves’ patients who got treated and feel fine do not seek out support.
Feeling seriously tired all the time is a VERY common symptom of hyperthyroidism. Your body is revving in “high gear” all the time, so of course it’s tiring — and the worst part I remember was never being able to really REST, which adds to the trouble.
Now, as for your BIG question: what, exactly, is involved in RAI, and how will it make you feel?
RAI is rather anticlimactic — you take a pill or a liquid with RAI in it and you leave the clinic. Then you wait. There are certain precautions you need to take for the first few days after you’ve taken the RAI, and these are designed to protect other people from unnecessary radiation. It’s not that you’re so incredibly radioactive, it’s kind of like the theory behind the lead skirt at the dentist or the hygienist going behind a wall — unnecessary exposures are best limited. Your exposure is necessary and therapeutic, and has not proven to lead to ANY future health issues of any kind (as a matter of fact, thyroid cancer patients routinely receive doses up to 20 TIMES what we are prescribed for our condition). Some people get a little bit of a sore throat due to the damage of the thyroid tissue (I didn’t), and some people experience a short period of more hyper symptoms a week or two after the dose (I didn’t), which is due to the dying thyroid cells dumping their stored thyroid hormone into the system. It usually ends in less than a week, if it happens. After those first couple of weeks, it’s just waiting and noticing how you feel. The RAI will do most of its work in about 6 weeks, and everything it is possible to do in about 6 months. During that time, you may go hypothyroid, so it’s good to have a list of those symptoms handy. If you start feeling more than 3 or 4 of them, it’s best to have a way to go get your blood tested because the sooner a patient starts on replacement hormone, the better. Then there is a period of finding the RIGHT replacement dose for you, but from the minute you come down from extremely hyper, you will notice that you feel better, and things will continue to be better all the time until you find the precisely right place. It is by small steps, though, this is NOT a quick fix disease.
One more thing — some people here have chosen to wait for treatment because they “didn’t feel bad,” but believe me, you don’t want to wait until you DO feel bad. Some of the effects of hyperthyroidism are not reversible, so if you’re feeling good, GREAT and you are a very lucky person. But please don’t let that fool you into believing that you are WELL. If you don’t trust the doctor’s tests, go ahead and get more tests done just so you can feel sure within yourself that you’re doing the right thing. But do not ignore this condition. It can be very dangerous to do so.
Look into your other options — I can’t spend the time right now to detail the other two treatment options, but you can do a search here and find out all sorts of things about both, and getting some of the recommended books from the NGDF site will help you also. Information is power!
Good luck to you, Kate, please let us know how things are working out for you!
-Ski
NGDF Assistant Online FacilitatorPlease don’t get the impression from here that RAI doesn’t work. Many people here have done it successfully. Those people don’t visit the boards that often because they feel fine & no longer require the support of the board. Some of us do come back so we can reassure the newly diagnosed that all will be well, eventually. I had RAI in June 2002 and am feeling great. Do a search of the board & read others’ posts about their experiences. Above all, research & learn everything you can so you can have a dialogue with your doctor so you can chart the best course of treatment for you. Good luck!
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