I promised myself I would visit all the message boards I looked at while I was going through my six month Thyroid Cancer scare. I read about how so many people never got back to "normal" after a total thyroidectomy (which is what I thought was coming for me). But I found somethings and met some doctors along the way that can help all of you.
Overview of my trek: I'm 28, male, live in Las Vegas, had a .5cm nodule on the left and a 1.7cm nodule on the right. Right was a follicular neoplasm after two biopsies, the left was atypical cells of undetermined significance.
My ENT surgeon in Vegas said I needed a total thyroidectomy. I told him I was worried about the scar and how I would feel after. He said the incision would be five-inches in the middle of my neck. Ha! Yea right. And he just glossed over how I would feel and if I would get balanced.
After recommendations from my family, I went to Houston to see Dr. Ridha Arem. If you have never heard of him, he is Oprah's endocrinologist. My Aunt has been a patient of his for a long time, and my mom, who suffers from hypothyroidism and could never get to feeling right, finally went to him about three years ago. Now she is right as rain.
He doesn't take insurance. He doesn't need to. He is the best in the world. When I was waiting for my appointment, there were couples in the waiting room that had come from Colorado, Kuwait, and Washington D.C. That should tell you something right there.
I saw him on a Wednesday at 8am. I've never met with a doctor like him. I brought my biopsy results and ultrasound films. He initially recommended a right lobectomy. I had a blood test and ultrasound in his office. He came in to look at the ultrasound, then stood there and starred at the floor for about 60 seconds. Pondering. He put some hard thought into what I should do. Everything pointed to benign. No calcifications. No family history of Thyroid Cancer. The nodules were stable. No abnormal color mapping. He told me I was favored to be benign, but It was my call. I went with his recommendation and had the right lobectomy.
Remember, I saw him at 8am, Wednesday. By 2pm Wednesday I was in to see his surgeon of choice, Dr. Wade Rosenberg, the Chief of Surgery at Houston Methodist Hospital. Before I got to Dr. Rosenberg's office, Dr. Arem had already personally called Dr. Rosenberg to tell him his thoughts and recommendations.
I was in surgery Friday. Initial pathology during surgery looked good, and since the lab was closed Saturday and Sunday, I had to wait until Monday for the final word. That's basically next day to get the results, which were benign. Dr. Rosenberg personally called the pathologist to get the results and had them before I arrived Monday. He personally called.
My point is, please, please don't settle for feeling like garbage. Yes, I didn't have my whole thyroid removed because I was fortunate to receive the best care in the country. But still, don't settle for that Synthroid crap, or any other meds that aren't doing the trick. And if you doctor isn't listening to you, go somewhere else. And if you have the means, go see Dr. Arem. His office makes their own bioidentical thyroid hormone compound that fits you. Even if your results are normal, like many people's are.
I hope someone sees this. I hope this information helps at least one person feel right, finally.
Wow- thank you for this note. I am definitely not going to forget it. I saw a new doctor yesterday and I am hopeful that she can make me feel better, but it is very comforting to know that here I am in Austin and a solid doctor is not that far away. If you don't mind me asking...how much does he charge for the initial consult and how long is the wait period to see him?
It's wonderful to hear a great success story and I'm happy to hear that your treatment went so well.
Unfortunately, many of us don't have the means to travel and pay for world famous doctors. I'm sure Dr Arem is good; he's written several books, etc, but it's important to note that people can get well, without having to go through the travel and expense. There are some people, for whom thyroid replacement medication (synthroid included) is the only option. I'd hate to think anyone would get the idea that Dr Arem could keep them off thyroid medication if they had no thyroid or if their thyroid had burned out from Hashimoto's, Graves, etc.
I completely understand about many not being able to make the trip. I'm sorry if I gave the impression that he takes people off meds (that is definitely not what he does), what he does is puts you on the right meds. Bioidentical Thyroid Hormone Compounds that are made in his office to your specifications. Not synthetic thyroid replacement hormones owned and pushed by big pharm companies.
Please don't construe what I wrote as Dr. Arem not prescribing meds. He is an endocrinologist, he not only prescribes meds, he makes the perfect batch for you. You go to him to get on BETTER meds. So you feel your best.
Sorry Barb, one more thing: from the internet scrolling I did before my surgery, all I saw is how people AREN'T getting better. Many have traveled and seen a slew of doctors with no luck in feeling like themselves again.
That's why I felt I needed to shed light on Dr. Arem.
I'm sorry, but with your post, I would hate for people to think Dr. Arem is out of their reach.
"I'm sorry, but with your post, I would hate for people to think Dr. Arem is out of their reach." For many people he is, because they can't afford to travel to see him, nor can many afford to pay out of pocket for his services, or the bio-identical hormones and he doesn't accept insurance, nor would most policies cover his services.
Okay, so Dr Arem is not going to keep everyone off thyroid med; maybe I could have chosen a better way to say that. My point is, that some of us don't have options such as the Bio-identical hormones and not all of us need them. I'm doing perfectly well with my Tirosint and generic T3 med.
I'm always leery of any post implying that people can't get well without seeing a specific doctor or taking a specific medication, etc, because it leaves those without access to that doctor or that medication, even specified lab tests, with the impression that without these things, there's no way they can get well, and that's simply not true.
Of course, you found tons and tons of information about people who don't get well on synthetics, but you didn't find much on people who DO get well on them -- that's because people who do get well on them, don't frequent forums such as this, or similar ones, for advice, because they did get well and they are perfectly happy with the way things turned out. Over the years I've been on the forum, we've had many members who came just long enough to get their med, whichever one it was, properly adjusted, then they leave. The only reason I'm still here is to pay back some of the help I got when I first came here looking for help.
As I said before, I love success stories and for those who might be able to travel to such doctors as Dr Arem, get his bio-identical hormones, etc, I hope they will take advantage of it, if they deem it necessary. But for those who can't do that, don't lose hope; you can still get well.
Ok, I get what you're saying and I don't want to argue with you, especially not on a place like this. All I wanted to do was come on here and tell my story and what I came to find.
I couldn't find any type of reassurance or help from people on the internet when I was going through my journey. It all just sounded terrible, and like I said in my original post, I promised I would come back to the forums and try to add a positive.
I'm so glad that you do just great and all the silent people do just great with Synthroid and other meds. Like you said, the ones that do don't come on here. Which is EXACTLY why I came back to share my experience with Dr. Arem, because the people that come on here, like you said again, are typically not getting what they want out of there meds. So please, don't derail the one extra option I am trying to give to the community.
Really, I'm absolutely thrilled that you got such wonderful treatment, and are doing so well. We do have people coming here all the time looking for success stories. We do see a lot of them, with the people we are able to help, but once they get well, not many of them come back to let us know they are still okay. Most of the "return activity" is people who maybe had to change doctors because they moved, theirs retired, etc and they find themselves back where they started.
I didn't mean to be argumentative, either; you understand my point, now.
I do hope you will continue to do well, and do come back again and let us know that you continue to be well.
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