[kimmiew]

#1060062

my doctor did not tell me I have graves. I thought it was just hyperthyroid but when my short term disability worker talked to me she said my diagnosis on her forms was graves disease. we both did not know anything about it so I got on the internet and checked it out and first thing I thought after reading about it was yup sounds right. just don’t understand why he didn’t tell me.

[Kimberly]

#1180048

Hello and welcome – Sorry to hear that your doc didn’t do a good job of explaining your diagnosis. Graves’ is the most common cause of hyperthyroidism, but there can be other causes as well (such as overactive nodules or thyroiditis), so it’s important to know exactly what you are dealing with. It’s also important to understand that Graves’ is an *autoimmune* condition, meaning that the body’s immune system is mistakenly attacking its own healthy tissues. Graves’ and other autoimmune conditions tend to cluster in families, so it’s important for your family members to be aware of this.

Be sure that you are getting information from credible sources as you do Internet research. The GDATF has a number of free patient bulletins on our web site at http://gdatf.org/about/about-graves-disease/patient-education/ We also have a lot of content on our YouTube page featuring presentations on Graves’ disease: http://www.youtube.com/user/GravesAndThyroid

(Note on links: if you click directly on the above links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

Take care!

[msled]

#1180049

Hi

I have been reading about burning mouth (dryness) and hyperthyroidism. I know that I am too high right now and my mouth and gums are extremely sore. Does anyone else suffer with this symptom ( I know I have several others like everyone else), and any suggestions for self help? I am going through a dose reduction (week 2 this week).

Marg

[kimmiew]

#1180050

hi again I mentioned to him that my case examiner told me and he said its just an old time term for hyperthyroid. still no actual info my eyes are being affected he said I have the widening not the bulging but now one is swollen more then the other. I had mri and it came back negative for eye disease still curious on what it could be. however he told to stop taking my thyroid meds and only take steroid once a day instead of twice. no reason why he wants me to do this. im guessing to see if it gets worse.when I see him I go in get vitals n he checks my reflexes n measures my eyes writes stuff down tells me to do this with meds and sends me off I see him 1 time a month. do you think I should look into another dr. or atleast find a second opinion?

[barbra]

#1180051

Hi kimmiew,

Sorry to hear about your diagnosis. What a way to find out.
I found out that I had Graves from a work order for labs. I guess some doctors must be just too busy to bother informing their patients. I did speak to him, though, the next time I saw him. He apologized, said it was an oversight, and his attitude has changed. So I stayed with him and an endocrinologist, of course.
I do hope that he will give you all the information you need. If not, you may have to find someone else, or at least get a second opinion.

Stay in touch. I wish you all the best.

Barbra.

[Kimberly]

#1180052

@kimmiew – You will hear some docs use the terms Graves’ and hyperthyroidism interchangeably, but that’s really not the case. You can be hyperthyroid due to other causes (such as overactive nodules or thyroiditis) and not have Graves’ disease. Graves’ is the most *common* cause of hyperthyroidism, though.

We’re fellow patients here, not doctors, so we can’t tell you what to do. However, keep in mind that assuming you *do* have Graves’, your relationship with your endocrinologist is a long-term one. I’ve been seeing mine for 6 years now! For patients who have severe eye involvement (such as extreme bulging and double vision), their relationship with their eye doc can also be a long-term one. You definitely want to be working with physicians who will explain things to you, as well as take your concerns and questions seriously. As Barbra noted, sometimes an extremely frank discussion with your doctor can help turn a relationship around. If you choose to seek a second opinion, the “Looking for a Doctor” thread in the announcements section of the forum is a great place to start.

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