Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hello Everyone,
Let me just start by saying that I have a tremendous amount of respect for all of you suffering with this disease. This is a confusing and confounding illness. I was diagnosed in July (only a few weeks ago) and I'm in a slow spiral of denial and fear. Sometimes I'm hopefull and optimistic, and other times, like now, I'm confused and scared.
A cousin of mine underwent surgery for thyroid cancer, and when she learned I was diagnosed with graves, she reached out to support me. My cousin told me to reach out to others dealing with similar issues for support and tonight I finally got up the nerve to join a group.
Right now, I suffer from significant tremors. I hate leaving the house because the tremors are very noticeable and people stare at me. In the past few weeks, I've been sent to the ER twice for out of control blood pressure, tremors, heart rate, and difficulty breathing. I cannot take the anti-thyroid drugs without getting swollen lips & welt-size hives all over my stomach & legs. I'm on beta blockers, which are helping with the heart rate and blood pressure, but the tremors persist.
I am opposed to the RAI, therefore, I've chosen surgery. There is a possiblity I could have surgery this week. I feel like I'm doing the right thing, at least I pray that I am. Has anyone else had an allergic reaction to the anti-thyroid drugs? Can anyone give me a reason why thyroid surgery would not be a wise choice?
Thoughts appreciated,
I am sorry you are having issues. I am guessing that PTU has been tried as well as the other brand such as something like Tapazole, Methimazole or Carbimazole? And that there were reactions to both?
This isn't really a typical allergic reaction, but for many of us we can experience hives and rashes after being on the ATD (antithyroid drug) meds for three weeks and then the doses needs to be lowered down due to thyroid levels dropping.
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Appreciate the support!
I haven’t heard of anyone being allergic to anti-thyroid meds. I do experience itching right after I take my dose. I get a free back scratch from my husband for that. :-) By any chance have you tried any herbal calming supplements like Thyroid Calm from Herb Pharm. My endocrinologist recommended I take it 4x a day with my medication and my thyroid levels went into normal range within 2/3 months. My heart palpitations went away. I felt much better after 5 weeks. I take it now and then if my heart starts to act up. It has Motherwort, Bugleweed and Lemon Balm - so many people have given it great reviews. I was diagnosed in Jan/Feb but didn’t take meds until April. I was doing a lot of research for a month because I was adverse to the medications. Other than taking meds, have you altered the way you eat or usage of personal and cleaning products - THAT makes a difference, too. Many people who have done the surgery had cancer involved. And, the people who didn’t, many regretted removing the thyroid, because of the HYPO symptoms. Have your doctors tried every possible version of the anti-thyroid meds on the market - many people say one didn’t work but the other did. I was lucky, I got it on the first try with Methimazole. I HOPE you reconsider the surgery. Did the doctors tell you even if your remove the thyroid, the Graves Disease (auto-immune disease) is still there and does affect the body. Many conventional doctors want you to remove it or Albate with the radioactive pill....because they are not interested in caring for a Graves Disease patient. It’s complicated. Making a person HYPO is much easier for them. When I started to go HYPO (because, right now my doctor and I are trying to find the right amount of MMI to balance my me and my thyroid) those symptoms (in my opinion) are worse.
I hope you will reconsider and see if there is a medication or herbal supplement or a mix of natural ways (diet and products) that can help you instead of surgery. Cutting the thyroid out does not fix the situation in a moment. There are other issues to deal with. This forum is a great place to communicate with others who have gone through what you are thinking about now. Feel free to question or share any time. Take Care.
It definitely sounds like anaphlaxis type of reaction. I knew of several people over the years who couldn't tolerate the ATD (antithyroid drug) and had to either do an RAI or a TT.
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