[Hopeful23]

#1074957

Wow, that seems to be a lot to deal with. I was put on tapazole and the same thing actually happened to me. I was only on mg and when I told my endo what was going on he told me to stop it and to come in for blood work. I went in and my levels(not sure whic ones) were hypo levels so I went off of all meds for about 3weeks and started to feel hyper again and boom I was and was put on PTU. So now im just waiting to see if these meds work. I take two every 8hrs. Its annoying cause the tapazole was once a day…I would just keep being proactive, dont just settle for ‘its your thyroid’ I mean if that was the case I would prbl be dead right now cause I was told "its just anxiety/panic’ and what do you know IT WASNT…lol…I hope you feel better because I know exactly how you feel, its hard and tough and sucks more days than it doesn’t but keep your head up and fight cause one day this will hopefully be a thing of the past… ” title=”Wink” />

[Bobbi]

#1074958

Our doctors diagnose Graves based on any number of factors. Hyperthyroidism is diagnosed strictly by blood tests. If there was too much thyroid hormone in your blood, you were indeed hyperthyroid. Why is left to other tests, typically, but the vast majority of hyperthyroidism cases are due to Graves.

Some of us have the antibodies for both Graves and Hashimotos, which can mean that we move between the two diseased conditions. If you are told this is the case, a typical recommendation is to eliminate the possibility of the hyperthyroid state by removing the thyroid, and then continuing to treat the hypothyroid state with replacement hormone.

The purpose of antibodies is to eliminate whatever tissue/substance they are designed to attack. Thus, our thyroids are permanently diseased. The only good thing is that there are treatments which help us to remain healthy, despite the presence of these antibodies. But ultimately we can all expect that our thyroids would conk out on us, and we would become hypothyroid.

If I were in your place, I would ask the office staff at the endo’s office to put me on a list of people who would be willing to come in on a moments notice in the event someone cancels their appointment. And, I would call the office every day to see if there had been any cancellations (to keep reminding the staff, politely, that I want to see the doctor sooner, rather than later). The other thing to keep in mind, however, is that being hypo is not quite as dangerous as being hyper, even though it is unpleasant. Thyroid cancer patients routinely had to go extremely hypothyroid in order to have certain periodic tests.

I do hope you are feeling much better soon,

[JoyC]

#1019910

Hi. I posted a few weeks ago. I was diagnosed with Graves this fall, after months of undiagnosed symptoms. My TSH was <.003, and my T4 and T3 were pretty high, and I was positive for Graves antibodies. I had some pretty typical symptoms, so it all seemed to fit. My endocrinologist started me on Methimazole, at a pretty low dose of 10mg per day. My thyroid slowly came down, and I felt pretty good for a few weeks and thought- hmmm, manageable, not too bad- I can handle this.Then, I went into hypothyroid levels. Many of my hyper symptoms were back, as well as real grouchiness and depression (those two I didn’t feel when hyper- nor before I started with my thyroid stuff). First, we cut the Methimazole dose in half. After several weeks, I was still hypo. Then, we discontinued completely. Still hypo. In the past week, I have been feeling even worse- appetite gone again, lethargic, heart pounding (although HR not up), painful joints in my hands, and swollen,painful lower and upper eyelids. So, I went for labs again thinking I had gone into hyper range again. But, levels were STILL hypothyroid. This is after weeks with no ATD. The nurse from the endocrinologist’s office said that yes, my symptoms still may be from thyroid problem, but they can’t get me in to actually see the doctor until December 30. So, I feel really bad, both physically and mentally.
I don’t understand how I can still be hypo off the ATDs for so long- you would think I would have become hyper again if the Graves diagnosis was right, or at least into the normal range if there was initially some other thyroid issue. The doctor seemed pretty definitive with it being Grave’s since the antibodies were present. But I am starting to doubt everything (including my sanity). Just kidding about the last bit- I am trying to stay as positive as I can, but I am starting to fear there is something unknown going on too. At least I thought I knew what I was dealing with when we first started treating the Graves.
Any suggestions anyone has to offer would be much appreciated. I am really discouraged that I can’t see my endocrinologist until December 30. And, I really dread feeling this bad for so much longer. My family doctor has the Graves diagnosis, so he is scared to deal with me.
Thanks for reading this, and giving any insight you are able.

[JoyC]

#1074959

Thank you for your help, Bobbi. That is information that makes some sense to me, and just being taken seriously helps. I appreciate this site so much!

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