[robin]

#1072563

My dear I feel your pain. I had to take 2 different doses of the RAI. The first sent my levels off the charts. It is my understanding that they try very hard NOT to kill off all of our thyroid gland. Also, I had cysts found growing on mine after the second round. (My general practioner said "only you could grow new tissue from dead tissue") I have been told it can still grow back after having the RAI. I have been dead on the line normal and then low and now twice they have changed my levothyroxine to bump it back down. Even after 60 years of research into the RAI, I still don’t think they know exactly what is going on. We must keep telling ourselves that we know our own bodies more than anyone (other than GOD) and keep questioning and insisting on someone listening. Hang in there-I’ve lost my hair 3 different times and have had to deal with the bulging eyes, one larger than the other. The dry eyes you need to keep an "eye" on L.O.L. I didn’t know that my eyes running all the time meant that they were actually irritated. I was told about these goggles that you wear at night like a sleep mask- they seem to be working for me. They are a little pricey-I’m unemployed right now, but they are working so much better than the sleep masks. I don’t know if I’m allowed to say a product’s name but call your local opthomoligist and tell him your problem- that is wereI found out about these things! I hope I helped you, just reading everyone else’s struggles has helped me tremendously in just 24 hours! Dianne told me about lubricant drops she uses I’m pretty sure it’s Systane but if not she can correct me. My dad just bought me some today I also use Genteal lubricant. I’ll let you know how this one works-(I think I haven’t been using it enough) Good luck and GOD Bless, Robin

[wslady03]

#1072564

Hi everyone new to this site. From what i read about eyes, so my eyes that tear all the time is normal, I had Graves in 85 and had RAI. Never felt normal since, not that i really knew what normal was. Is this as good as it gets?? i am wondering??

[mamabear]

#1072565

Welcome to all three of you newcomers!!!!

Willowbreeze I would speak with Endocrinologist or have your general dr. at least do a TSH,T4,T3,Thyroid antibodies test(if i’m wrong the others will correct me). Having those as a baseline will help determine if things are getting better for worse. If this is the same dr. they should know that you can become hypo, if this isn’t the same dr. make sure they know that you have RAI all those years ago.

Are you on medicine for your thyroid now, like thyroid supplement? If so many the dose is wrong and needs to be tweeked a bit.

Please see your eye dr. for any irritation at all that any of you have with your eyes.

Remember that Graves’ disease is different than Thyroid Eye. So even if you are doing ok on your meds or levels are ok and you are off meds and still fine that your eyes can have a different problem due to thyroid eye. If that makes any sense. again if i’m wrong I’ll be corrected.

My eye dr. wont even let me wear contacts at all, i have worn glasses my whole like and after I had the graves come out he said no way and even still that graves is in remission he still says no way. Poopy, but I trust him so I wont do it.

Sorry you are feeling icky, i do hope that you will get tested and find this out asap and get treatment if needed.
For now cotton tshirts, cotton underwear are a good way to help with the heat. Just putting your hands or feet into something cool/tepid will help reduce the symptoms. At least that helped me.

Also if you have gone through menopause or are going through it make sure that your body is getting enough of what it should be getting nutrition wise(calcium and other suppliments), talk it over with dr. to make sure.

You’ll get plenty of advice here, this is really the only advice I can offer.

[Ski]

#1072566

Good answer, mamabear!

If anyone needs clarification on specific points, let me know and I’ll fill in the blanks.

As far as contact lenses go, I still wear mine. I never had very bad bulging (and my eyes have nearly completely reverted to normal in the 10 years since my initial Graves’ diagnosis), so call me lucky, but it’s not a given that Graves’ patients can no longer wear contacts.

Oh and one more thing ~ the conventional wisdom NOW is that we DO attempt complete destruction of the thyroid with RAI. Less than that can leave a patient in a very difficult position as they attempt to maintain stable levels. Some people have required a second dose of RAI (I was one), but that was because I my dose was too little the first time, NOT because tissue regrew. It is almost unheard of for tissue to grow back following RAI. That’s one of the reasons RAI is used in thyroid cancer patients.

[willowbreeze]

#1019568

New member,

I am so thankful for this site.I thought my problem was taken care of 23 years ago but now I am not so sure. I was 26 when my Graves was discovered and it was so bad that my Dr. accused me of taking drugs, of which I have never done! I am now 57 and i am having symtoms again. My Dr. is thinking it is just my age, but I know different. I took the RAI back then with nothing to ease the sysmtoms. I had three children under the age of 10 and I thought I was going to die. No energy, weight gain, etc. Unfortunately when my Graves was dicovered my Dr. said to eat whatever I wanted because there was no way I would gain weight. So, I did, but………….oh goody….I was one who gained weight being hyper! Now I am experincing dry eyes, being hot all the time(not hot flashes, I have had those for 10 years,) weight gain, (unusual!) and I have no energy, tired after adequite sleep and I feel very depressed. Please can someone tell me if this reoccurance can happen? I would appreciate any input. I also ache and have muscle weakness and fluid retention. I had an accident in 1991 and they have been trying to tell me I have MS. I did have an adenoma taken from my parathyroid gland in 2005 because I was hypercalecmic and hyper-parathyroid. anybody have any ideas? I am thankful for any help.
Ann

[willowbreeze]

#1072567

Thank you all for the input! I have a good diet and exercise program for handling the "hot flash thing". I currently take .10 synthroid. No Dr. has changed it much all these years. I have found that my system seems to work a little diferently that "noraml" people. It is very frustrating since the Dr.’s say, "well, that’s not what your tests say", good grief, not everything goes according to the books. I have had one very good Dr. who said that I was a Dr.’s dream puzzle. I always tell the truth about symtoms and nothing ever fits the sysmtoms. Can be very frustating for me though!
Again, thanks for all the input and I will look forward to more!
Ann
I misscalculated the time factor. Has been longer that I originally thought !!!!!!!!!!!!

[Ski]

#1072568

It’s possible your dose of synthroid needs adjusting ~ our needs for thyroid hormone can change over the years due to hormonal events (menopause, for instance), weight gain or loss, changes in our level of physical activity, and several other factors, so you may want to get those levels checked and then start a symptom diary to see if you can determine which side of YOUR normal you may be falling upon (if, indeed, this has its root in your thyroid hormone levels ~ not necessarily so, but worth investigating). Several symptoms occur on BOTH sides of normal (hypo and hyper, for instance, can create anxiety and fatigue), so it’s good to have a constellation of symptoms in order to get a full picture. Doctors LOVE DATA. ” title=”Very Happy” />

[willowbreeze]

#1072569

Thank you Ski, I will indeed start a diary. It can be very confusing at this particular time in a woman’s life. Unfortunately, I am on social security disability and medicaid and I can’t find an endo that will acept my insurance in this part of Washington state. This is a constant source of stress for me as I have the same needs as someone with "real insurance". My currant GP won’t even retest my levels since she did them 8 months ago, so, I’m not sure what exactly I should do. Having some problems with high blood pressure, irregular heart beat plus some other rather disquietening issues. I can only hope that I just keep plugging along.
Thank you for the info!
Ann

[Ski]

#1072570

Eight months ago is too recent to test again!?!?? That’s horrifying. If you agree to pay for the test, will she promise to reimburse you if you’re RIGHT? I’m sending you a personal message with a resource that may be helpful.

[willowbreeze]

#1072571

Yes Ski, Since I have medicaid and medicare I am lucky to even have a physician. It is like pulling teeth to get anything done, especially if I am pushing a time element. Mycurrent Dr. thinks that if the test’s are all nomal, everything is okay, and I have proven too many times that I NEVER go according to the guidelines! I am very tired and unhappy about trying to get any significant help.
The Dr’s around here seem to think I am just nuts! (I can assure yiou that I am not!)
Thanks,Ann

[Author]

Posts