[Ewenme]

#1018592

Hi–My name is Joy, and I was just diagnosed with GD last week. I went to the doctor for swollen ankles, which I now know can be a symptom of GD. Also had tachycardia and enlarged thyroid (not obvious, though). Had been feeling a little under the weather and short of breath the week before that. Have lost maybe a couple pounds is all, and I am not overweight to begin with.
I had all the tests which confirmed the diagnosis. I am taking a beta blocker but my pulse is still barely under 100.
I have yet to be referred to an endocrinologist–and am a little ticked about that (maybe it’s my thyroid excess). I am anxious to get started on treatment.
Meantime, we (husband and I) are visiting son and daughter and law, and have done a fair amount of babysitting my adorable 3 and 5 year old grandkids. I am trying to take it as easy as I can.
I was not surprised to be diagnosed with this disease , because my mother had it. However; I am also somewhat distraught , especially worried about the eye involvement. Have none so far, but after every little twinge or strange feeling I run to the mirror to see if there’s any change.
I was disappointed in my doctor’s handling of my case. Actually, I have not spoken to him about my diagnosis, because he assigns all communication to his nurses. I have not been given any information at all from him about the disease. I have only been told that I would be referred to another doctor. Is this how all patients are treated? I used to be a nurse and was rather appalled at their behavior.
Anyway, I am thankful to find others who are also going through this experience and happy to receive any advice.

[Kimberly]

#1065892

Hi Joy – Welcome to the boards! I’m glad that you found us, although I’m sorry to hear about your diagnosis.

I think that everyone’s experience is a little different. My general practitioner identified my low TSH during a routine checkup, and referred me to an endo who actually did further testing and made the diagnosis. At first, it was going to take two months to see an endo…but I got my GP’s office to intervene on my behalf, and they cut the wait time down to a month. (The squeaky wheel gets the grease!) Once you do get a referral, you can also call the endo’s office directly and ask them to let you know if they have any cancellations.

I don’t know how much you already know from your mom’s experience with Graves’ Disease. In short, GD is an autoimmune condition where the body’s own immune system mistakenly attacks healthy tissue. In Graves’, the targets are the thyroid and the muscles behind the eyes, and occasionally the skin, particularly in the shin area.

While there is no cure, the various treatment options focus on getting the hyperthyroidism under control. Otherwise, this can cause complications such as bone/muscle wasting and heart problems – and occasionally thyroid storm. There are three different options to get the hyperthyroidism under control. One option is Anti-Thyroid Drugs (methimazole, tapazole, PTU), which block the production of extra thyroid hormone. The other options are to destroy the thyroid by taking a pill with radioactive iodine (RAI) or to surgically remove the thyroid. All three treatment options have pros and cons, so you will definitely want to do some research and discuss this with your endocrinologist before committing to a decision.

As for the eye issues, while some patients do experience a sudden onset, it’s actually more common for the symptoms to come on gradually. So you wouldn’t necessarily notice them from day to day. Also, while it’s common for patients to have *some* eye involvement, the symptoms tend to be mild in most cases. My thyroid levels are generally stable, although I’ve had a couple of hypER blips – both associated with periods of major stress. So it’s best if you can find a way to take one day at a time, and try not to stress about whether you might have eye complications. (I know – easier said than done!)

This board is a great resource – feel free to ask questions or jump in on any of the other topics!

[Bobbi]

#1065893

Hi, ewenme, and welcome to the board.

I would recommend that you start collecting your lab reports in a file, so that you can track your treatment. Many of us have found it helpful to have this information. Most doctors do not routinely give us our lab reports, but if we ask, they usually are more than willing to make a copy.

If your current labs show that you are hyperthyroid, I would recommend that you ask your doctor why you are only on a beta blocker, and not some other drug designed to interfere with the production of thyroid hormone. While you might be able to get into an endocrinologist quickly (I did), most of us have to wait a month or two for an appointment to free up. Waiting while hyperthyroid is not usually the safest option, and our GPs often start us on a basic dose of antithyroid drugs while we’re waiting.

As for our eyes, it is fairly common for people with hyperthyroidism to have a wide-eyed stare, that is caused by elevated hormone levels. The muscles of the upper eyelids contract due to the excessive thyroid levels, and not due to any eye disease issues (which is caused by antibodies and not thyroid levels). So, if you see that appearance starting to happen, don’t panic. Upper lid contraction typically goes away once we get our thyroid levels back to normal.

You may be noticing some additional light sensitivity or dryness in your eyes. If your eyes start feeling dry and gritty, get some artificial tears from the drug store or drug department of the grocery store. These are not the "get the red out" type of drop, nor are they the drops designed for allergies; they are designed to supplement the tears of people who get very dry eyes. Dry eyes are commonly associated with thyroid diseases.

I hope some of this info helps. Good luck getting into a specialist soon.

[Ewenme]

#1065894

Thanks for the info and suggestions. It was very helpful. It’s great to know I’m not alone! I’m sure I will be back to this board often. Joy

[snelsen]

#1065895

Hi Joy, I am glad you have found this site and the bulletin board. Here are some of my thought and experiences. I think you are doing everything right. You did not feel well, you went to your doc. Good for him/her, thinking to do the thyroid levels. It got jumped on right away. It could have been easily missed for a while.

I am a grandma. My grandsons are twins ages 9 1/2. They really do wear me out. I simply cannot do the kind of play that I did with them a few years ago. My kids are older parents, ages 47, 49, and the kids wear them out, which is almost reassuring to me. I am currently hyper by labs, but super tired all the time. And COLD! Neither thing goes with hyper.

It is really difficult to learn about Grave’s. I am an RN, have worked for 50 years, but this whole world of endocrinology, Graves and TED is pretty new and difficult. I tell myself frequently, that if I had not ben immersed in this disease (for one year, this time), I would have NO IDEA what it was like to experience it. That is why this website is a real lifesaver. I am sorry you are in this "club," I don’t want to be in it either, but here we are. Even when we see an endocrinologist and get some explanation, we do not understand how this can impact our lives.

It is pretty common to have to wait for an appt. with an endocrinologist. Until you do, the beta blocker seems to be making some headway with your pulse. I suggest you call your regular doc who prescribed the beta blocker, leave a message of your pulse rate. The initial dose may have been very conservative, so you would HAVE a pulse, and not fall down on your face!

My history briefly. Hyperthyroid after a baby at age 24, REALLY toxic, ended up, for good reason with a thyroidectomy in the late 1950’s. Five decades later, I developed TED. Not that many people end up with the eye issues. It has been life changing in a bad way. this website has been a lifesaver for me.
Thought you would like to hear from someone near your demographic, although much older!
Shirley

[Ewenme]

#1065896

It’s great to meet you, Shirley! I apoloqize for this belated response. Our computer died while we were visiting our grandkids, and we just got back home where we have our desktop. I did get an appointmet with an endocrinologist on the 19th of April. And just as you suggested (both being RNs I guess we think alike) I did call my doc and he doubled the dose on my beta blocker. Then he called ME a couple days later (wonder of wonders) and asked how I was doing. My pulse was still running high 90-s and low 100’s. Now he has me taking methimazole 5 mg three times a day. My pulse was in the 80’s this am which is an improvement.
One of the things I did not expect was the muscle weakness. I had to have my husband help me get out of the tub this morning! What a difference a few weeks makes.
I was surprised you got TED that long after the initial diagnosis and treatment. It must be really discouaging to have that happen when you probably thought you were beyond it and moving on with life.
This is indeed something I wish we did not have to deal with, but in some way I hope and pray it will make us better people. Please feel free to keep in touch.
Joy

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