[charliemnp]

#1018717

I am currently 49 years old. I was diagnosed w/ Graves at 12 years old and had 95% of my thyroid removed at age 14. Age 35 rolled around, I began to feel symptomatic of Graves. Endo said the thyroid removal cures Graves.
3 years ago, I really started having a tough time with fatigue, joint pain, and went on intermittent medical leave from work.
Now, as of this fall, I have really felt like I have Graves all over again. I have been severely fatigued, cannot think, crying, heart racing, cannot work. I have met with various docs. My thyroxin levels are fine, antibodies are high. We have ruled out all other autoimmune issues (diabetes, arthritis, Sjogren’s, etc), ruled out cancers and other life threatening issues.
I have had a couple docs mention the 5% thyroid that is left may be the issue…in fact I may still have an active case of Graves. Has anyone heard of this? Thanks so much for your time.

[Bobbi]

#1066662

First of all, you need to distinguish between being hyperthyroid and "having Graves." If you are hyperthyroid, it shows up on a simple blood test. If your thyroid levels have been checked and they are normal, then you are not hyperthyroid, or hypothyroid. Those are easy things to rule out.

"Having Graves" is another issue. We will always carry the antibodies that caused the hyperthyroidism. They do not go away, typically. If your thyroid is gone, though, those antibodies cannot do a lot of harm any longer. They attack specific targets: the thyroid gland; in a very few people these same antibodies also can affect the muscles of the eyes, and the skin on the lower legs. But the GRAVES antibodies won’t make you feel the symptoms you are describing unless they are causing aberrant levels of thyroid hormone. The 5% thyroid that is left "could" be the issue, because antibodies CAN rev things up for that 5%, but if your thyroid levels in blood tests are normal, that 5% is NOT the problem.

There are other possibilities. Did your doctors consider fibromyalgia? I have heard recently that doctors are starting to see this as a legitimate, and perhaps autoimmune problem. Chronic fatigue syndrome is another condition that may be in the process of being re-evaluated as potentially autoimmune. I think they’ve also found a viral connection to at least one of these diseases. Anyway, I would keep on pressuring the docs to try to figure out what IS going on. It’s helpful to know what is not going on, but you still need to find out what IS making you feel so crumby.

I hope you get your answers soon.

[ewmb]

#1066663

I’ve had fibromyalgia for almost 16 years. The fatigue and muscle pain sound like they might be. I’ve also never heard of it raising a person’s heart rate at all. Are you possibly going through menopause? I know that it can cause many of these symptoms, ask me how I know…….. Also I would think it would be worth asking about lowering your dose of replacement hormone to see if these symptoms got better over several months. I’ve heard here many times that as we age our needs change for levels of replacement, in other words what was normal at 40 may not be normal for you at 49 now.

Hope that you feel better soon.

ewmb

[npatterson]

#1066664

Thyroid tissue that is left behind sometimes does begin to grow, and produce extra hormones. Are you, or have you, seen someone who specializes in thyroid disease? You can find them at "http://www.thyroid.org". That is the American Thyroid Association, and all they do is thyroid! Depending on where you live, there will be several, or very few. Let us know where you live, and we will help. My e-mail: "nancyngdf@bellsouth.net".

Take care,

[charliemnp]

#1066665

Thanks for all the information!
I have had my thyroxin levels checked, and they are normal. It sounds like from my docs that fibromyalgia and chronic fatigue are diagnosed by clinical decisions only (based on ruling-out other issues), so that is why I am looking at the Graves issue one more time to make sure I am not missing something. When I was originally diagnosed with Graves, I got everything you can think of….so my eyes were impacted, my lower legs, my skin, my hair, and every side effect/allergy that can occur, did. Currently, my eyes are not effected, but almost everything else that happened when originally diagnosed is feeling like the same thing now.

Most likely, if nothing else comes up in all the tests we are going through, diagnoses will probably go to fibromyalgia/chronic fatigue. We are just trying to be thorough at this point of the process! Again, thank-you for all your information ” title=”Smile” />

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