[RuthB]

#1018146

I was recently diagnosed with Graves disease, and would like to know if there are any support groups or any members in the region that I could speak to about the disease, and its particular effects. I am not on medication as yet; surgery is being considered, but I have a blood clotting disorder that complicates any sort of surgery. A nodule was found on the thyroid. I see the endocrinologist this week to talk about a treatment plan. Major symptoms include severe diarrhea, fine tremor in hand, mood swings, extreme sensitivity to heat, heart palpatations, joint pain. I’ve not lost weight, but have gained weight, however. (I am afraid of gaining even more weight w/ the surgery. This is a major concern for me.) Are these symptoms typical of the disease? I’ve had these symptoms for some time now, about a decade, sometimes worse than other times. Will surgery "cure" these problems, if thyroid hormone replacement is taken afterwards? How long is the recuperation from such a surgery? Right now, I am limited in my activities and feel that my life is being controlled by the symptoms I am experiencing. I am miserable. Any advice?

[Bobbi]

#1062935

Hi, and welcome to our bulletin board.

Your symptoms sound completely familiar. Even the part about not losing weight. Yes, it is more common for people to lose weight while hyperthyroid, but quite a few gain weight instead. Getting the thyroid under control and the hormone levels back to normal is the first step in regaining control over weight issues, whether you’ve gained or lost weight. Part of the problem is that we lose actual muscle while hyperthyroid, and muscle is a major component of our metabolic rate. Muscle weighs more than other body tissues, but it burns more calories, even when we’re not using it. Without strong muscle, we cannot eat as much without gaining weight. Getting the thyroid under control allows our muscle function to return to normal over time, raising our metabolism bit by bit.

You might go onto the home page for NGDF, and look for support groups in your area. Or call the main number if you would like to speak with someone directly.

Good luck.

[RuthB]

#1062936

Thanks for the response. I will. It definitely makes me feel better to know these symptoms (plus MAJOR insomnia) are typical, and that even the weight gain is not unheard of. I really appreciate your answer.

[snelsen]

#1062937

Hi Ruth, welcome to this great site. I am sorry that you have (probably)had undiagnosed Graves’ for such a long time! Unfortunately, this can happen, especially with women, all the symptoms are blamed on general anxiety. It is sad, when a simple lab of thyroid studies would spot the problem right away. BUT now you are diagnosed, and soon to see an endociniologist. THAT IS VERY GOOD!

As Bobbi said, you symptoms are familiar. I might add that they are CLASSIC for Graves’.
I think it will help you a lot to use the search engine to read about the experiences of people who have had surgery.
I don’t The first step is for you to see the endocrinologist. I imagine, when you do, you will be put on an ATD (anti-thyroid drug) and IF your heart rate is fast, you may be put on a drug to slow the rate. It is from a class of drugs called beta blockers. That is the typical first step. He/she may or may not give you an overview of the whole process in the first visit.
I am going to give you some beginning thoughts to the questions you asked and topics you mentioned.
As Bobbi said, you can use this board to find out if there are any support groups in your area. And-this support discussion board has been my lifeline all thought my Graves’ and TED (thyroid eye disease, which in a few people, their eyes are affected and need some treatment.) It is a rare complication of Graves’.

There are three options for ongoing treatment. Surgery is one. THe other two choices are RAI (radioactive iodine) or ratiation to the thyroid. And some of us have chosen to continue on ADT’s. This option of ADT’s has worked very well for some people.
Regarding thyroid nodules. They are quite common in a lot of people. You can ask about that, but your immediate problem is getting you to feel better, get your Graves’ treatment plan started.
After RAI or surgery, you (and almost all of us who chose one of these options) will take thyroid hormone the rest of our lives. The goal of that is to get the amount of thyroid hormone circulating in our bodies which is normal for a body who has not had Graves’. This is determined by how you feel, and by lab tests.

As Bobbi said, and if you look at past posts on this board, weight gain/loss can happen with Graves’. There several excellent posts on this website on discussions about weight. Surgery will not make you gain weight. After surgery or RAI (the goal in either case is to stop the gland from producing thyroid hormone)
you will have labs tests to determine the amount of Synthroid you will take. You are watched carefully, for the goal is to have you avoid "going hypo" after the surgery or RAI. With ADT’s, there is a slightly different path, for you have labs and report how you feel so that the ATD can be regulated to keep you in that "sweet spot," neither hypo or hyper. And that is the goal of all three treatments. There are some addtional labs you need to have monitered if you are on ADT’s, and I am sure the endo will tell you about that. There are some side effects of ADTs, so additional labs are necessary.

Regarding your clotting issue. That is a discussion for you to have with a surgeon. Choose a surgeon who has a lot of experience with doing thyroidectomies.
This is a lot of information for one post. This site has some information for you to read on the home page which might interest you Do write after you have your appointment with the endo
Best to you, Shirley

[RuthB]

#1062938

Thank you, Shirley, for the great information. I did try one type of ATD for a couple days after I first met w/ endocrinologist. Made me very, very nauseous. I wrote that I’m not on any medication yet, as I don’t know if there will be another option in terms of medication. I’m not on anything right now. (I wasn’t clear in my previous statement.) Anyway, the information you provided is quite helpful, and it is sooooo good to "talk" to someone who understands the disease.

Went to my GP today to catch him up on everything and get his opinion. He did some tests in office and after talking, indicated that it is important to take care of this prior to any complications from the Graves’. (scary thought) He recommended RAI; my endocrinologist indicated that either surgery or RAI is option for me. The RAI won’t take care of the nodule, however. Dr can not tell if it is cancerous; odds are that it is NOT. I will scan past notes for pros/cons of each procedure. I have to make a decision on Friday. Bottom line is that I have to get something done, and GP urged be to do so. And I am ready to take the step. Neither procedure sounds like fun, and I am rather nervous about it all due to other conditions I have. BTW, does it seem like Grave’s patients have numerous auto-immune problems or genetic based problems? The blood clotting disorder is genetic– Factor V Leiden. I had DVT in past and pulmonary emboli. Also, this past year I experienced a tear in my retina (and still see billions of floaters). Can these things be related to the Graves?

I know it sounds like I’m a medical wreck. It’s like my whole body is out of kilter. I feel like I’m putting the pieces of a puzzle together, and trying to understand it all. Pretty overwhelming.

Thank you, thank you, thank you for your advice.

[Kimberly]

#1062939

Hello – I can’t speculate on whether the issues that you mention are related, but I do know that once we get an autoimmune disease like Graves’, we are slightly more likely to end up with a second autoimmune condition than the rest of the general population.

I’m sure exactly where you are, but I am guessing that the closest support group to you would be in Charlotte NC. As Bobbi said, you can call the office or you can e-mail info@ngdf.org for additional details.

Please keep us posted on how you are doing!

[Author]

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