[Anonymous]

#1077803

Hi Lumby,

The symptoms you are having are certainly a concern. The fact is that, even in “normal” ranges, we can be far away from our OWN normal. The range of normal thyroid hormone is enormous, and that is precisely because different people feel normal at all points along the range. Your T3 and T4 may fall within that normal range and still be too high FOR YOU. I’m surprised that your doctor thinks it’s okay to be subclinically hyperthyroid. Everything I’ve read indicates that the TSH level is the most sensitive of all the thyroid hormone levels, and anything below normal range should not be ignored. You may want to discuss this with a new physician, if you do not feel as if your current doctor is willing.

Your eye symptoms, on the other hand, warrant a visit to a different doctor. Opthalmologists take care of Thyroid Eye Disease (TED) patients, and even if you do not feel as if your symptoms are severe, there is value in getting an initial assesment so that the doctor understands where you began. That’s an entirely different condition from your thyroid disease, but it’s obviously still something that needs attention.

I completely understand your hesitation to take Tapazole again, if you had a bad reaction the first time. I don’t see anything that mentions you’ve had any other sort of treatment, though, so it’s possibly still an option for you to either go through the surgery or do RAI rather than take the Tapazole. There is also another anti-thyroid drug, PTU, that may not result in the same reaction you’ve had to Tapazole. Again, rather surprising that your doctor would not bring that up, but that’s neither here nor there.

I had an RAI that left me subclinically hyperthyroid, and I was the one trying to pretend that it was okay. My doctor let me go on for some time, then finally I read something indicating that it can be very damaging, over time, to remain subclinically hyperthyroid. I went with a second RAI, and only afterward could I recognize how very sick I was before I was treated correctly. It is NOT a healthy state, and you need to get relief. If that means changing doctors, so be it. Your health is worth whatever it takes.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1077804

Ski,

Thank you for your response. I am seeing a wonderful doctor for my eyes. He currently has me on Prednisone to help prevent the buldging eye look. I do feel like I am in good hands with him. This is all he does, just TED. And he is at a University Hospital.

I have read four different books since I was diagnosed with Graves’ and agree that leaving one subclinical hyperthyroid does have it’s risks to the heart and bones. I am only 39 and already have osteopenia. I think due to being hyperthryoid/Graves for three years undiagnosed. My heart has also had some changes which amazingly the cardiologist is not worried about. He feels my heart is structurally sound. Why does it feel so bad though?

It is confusing to me that my endo does not want to do the RAI. She questions wether something else is causing my symptoms. She mentioned some rare disease at my last appointment, but of course I don’t remember the name. She wouldn’t repeat it becasue she didn’t want me looking it up and worrying. She is running some other tests. It’s just all this waiting and waiting and these scary heart symptoms that bothers me. I wonder what are we waiting for? A heart attack? Will I be alive much longer? I just want to feel normal again.

Thanks again. People with Graves’ need support. It is such a difficult disease and has a tendency to make you feel crazy. It is so good to know others may feel the same.

Sincerely.

Elizabeth

[Anonymous]

#1077805

Elizabeth,

I was diagnosed over 4 years ago. I was on PTU for 3 years and then had surgery this past June. I have to say there are times when my heart still does some funky things. I have had EKG’s and everything is fine and no one seems concerned about it. I am still taking metoprolol which they put me on when I was first diagnosed. I probably had it for 1-2 years before diagnosis so it doesnt seem like I can get off this medication. He said this may be something I have to take for the rest of my life. The other factor is the fact I am 42 and have been told I am having hormonal changes in my body which seems to effect my heart for some reason. It can be scare when it starts racing for no reason but like I said no one seems concerned about it but me. Know that you are not alone and things will get better!!!
Katie

[Anonymous]

#1020609

I feel worse and worse every day and I feel like no one is helping me. This is going on too long. My TSH is just a little bit low, .28. With my T3 and T4 in the normal range. My doctor feels I am subclinically hyperthyroid and feels I should not be having symptoms with these levels. But I am! I can not stop shaking. My whole body trembles. I can hardly work now. My heart is beats so hard at times that it feels like some one is shaking my body. I have chest pain that radiates into my left arm. The pressure, pulling, pain and swelling in my eyes is getting worse. My vision is getting blurry in my right eye. My symptoms continue to get worse month after month. I don’t know what it feels like to feel normal anymore. Yet because my labs are not in the “severe abnormal range” noone does anything for me! Does anyone else have troubles like this? Have I gone crazy? What else could be wrong with me? My endocrinologist is putting me on a very small dose of Atenol and Tapozole to see if my symptoms improve. I develped leukeopenia on a high dose of Tapozole last year. I am so afraid to take it again. I can’t live like this anymore! Any suggestions?

[Anonymous]

#1077806

Wow! You sound so much like me. I work only one day week and the rest I stay home with my three children. There are days that I too can’t do a thing. I feel so awful when my husband walks through the door and the house is a mess, I can’t even figure out what I am going to make for dinner and I am so exhausted. Yet I can’t think of what I even accomplished that day. And then a week later, the house is deep cleaned and I am racing around like a crazy person! So many ups and downs. Good days and bad days! Yes I feel crazy at times too!

Has your husband read any books on Graves’? My husband did and that helped us so much. He knows when I am having a bad day to just take over. Educate yourself on Graves’disease! Read, read, read! There is so much information out there. My favorite book is The Thyroid Solution by Ridha Arem MD. This book really helped in understanding the emotoional part as well as the disease and treatment options. Graves’ Disease In Our Own Words is another good one. This one is very easy to understand with straight forward information. Good luck and know you are not alone!

Elizabeth

[Author]

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