In April of 2007, multiple, scattered nodules were found in my thyroid gland after a routine PET Scan. (I was diagnosed with Lung Cancer in late 2004, lad a right upper lobectomy, chemo for 5 months and 33 radiation treatments. I called an endocrinologist and waited three months for an appointment. When I got in to see him, he did an ultrasound and we made another appointment for a needle biopsy. The results came back showing it was papillary cancer. He recommended a surgeon who I also saw. The surgeon explained the procedure to me and told me was going to be a very easy surgery....and it was. No one, however, explained to me the consequences of having complete removal of this gland. I had the surgery on July 22. I was prescribed cytomel right after the surgery. I struggled, trying to stay awake, blaming it on the anesthesia, my age (66), but I just could't get my butt off the couch. When I got in to see the endo guy again a week later, he prescribed Synthrex. After about 5 days, my eyelids and undereyes and the upper part of my entire face swelled and itched and burned like crazy. I called him immediately, and he took me off of synthroid for a week and then prescribed Levoxyl. After about a week of taking this drug, I experienced the same allergic reaction. and.....I still couldn't get my butt off the couch.
The swelling is now down but the doctor would not prescribe any other product, telling me the rest of them were "impure". I had researched it on line and also spoke to my son who is a Radiologist and found that there were 5-6 or more drugs that are FDA approved, but he refused to change the drug and thought my reactions were not the result of the drugs. Needless to say, I fired that doctor.
I am still experiencing itchy, bumpy skin on my face and neck and my skin is extremely dry -- even more so than usual, living as I do in Phoenix.
My energy level is better, but certainly not like it was before the surgery. I'm sure my meds need to be "tweaked" and am going to see another endo person. I've not yet made an appointment -- I had blood work done by my PCP on Friday and am awaiting her to call me with the result.
If I'd have done more research, I am sure I would not have had this surgery done. It was a VERY slow growing cancer and I would probably died of either lung cancer or old age. There are lots of doctors out there -- just not very many good ones. In the meantime, my biggest problem is DEPRESSION. I have had suicidal thoughts, cry for no apparent reason and just generally feel despondent and depressed. I even cried because my steak wasn't done the way I wanted it. What will it take to get back to a normal life?
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I'm wondering what your new thyroid replacement hormone is. I'm taking 210 mg. of Armour and am feeling pretty good. Depression is often a result of hypothyroidism. You may also be intolerant of cold environments, feel sluggish, gain weight, have achy joints. It's really important to educate yourself on what your proper thyroid levels are. Always ask for copies of your thyroid lab tests and learn how to interpret them. The most important test is the free T3 (this is the only one I get these days to monitor my level). It is the most active form of hormone and this is the test that should most accurately affect how you are feeling. Too many doctors rely on the TSH, being told that it is an accurate indicator, but they aren't following recent advances on the subject. Often, a naturopath will be more deeply educated on the ins and outs of managing thyroid levels. Do yourself a favor and try to find a good one. I found that all the endos I've had over the years were entirely worthless except for one who is a researcher, not just a doctor. On the thyroid boards I've been on, many women complain that their doctors aren't responsive to their complaints of still being hypo and start prescribing them anti-depressants, anti-anxiety pills, anti-psychotic medication, muscle relaxers, and pain relievers and give them cholesterol meds instead of addressing the root of all these problems: functional hypothyroidism. Don't let them make you feel like a hypochondriac. Remember, YOU are THEIR employer, their job is to help you, not write endless prescriptions to make their pharmaceutical buddies happy. For more info, go to www.thyroid.about.com or www.stopthethyroidmadness.com. Both these sites have excellent up-to-date information on how to best medicate your thyroid disorder.
August 6, 2009 - 11:01amThis Comment
Hi Judy, we posed this question to Dr. Antonia Verso in Phoenix and here's what she had to say.
"This tends to be true for many patients that the tumor can be almost benign and not bother the patient, especially if it is very small and yet, for some it can turn quite malignant if left for several years. In a patient with multiple nodules, this is less true. If someone with a prior history of cancer, it is more likely to be more aggressive and it is best she had the operation. The allergy seen with Synthroid and the generics is not due to the structure of the molecule but to the dye added to color coat the tablet so that one dose will be distinguishable from another. Hence, you would do better on the 50 mcg dose."
Please update us with your progress.
October 2, 2008 - 8:54amThis Comment
Hi Judy P, I'm sorry to hear that you're going through all of this and I hope you can take some comfort in the fact that because you shared your story, other women will learn from it and can possibly take a different approach.
I have forwarded your question regarding the different types of medication to a well-respected, nationally known thyroid expert.
In the meantime, I'm hoping that -- together we can work on ideas to help ease your depression. Not sure if you're much of a reader (although I get that feeling from your articulate writing you might be) but I've heard Unstuck by James S. Gordon, MD is a wonderful book. Instead of viewing depression as a disease, he sees it as a journey -- and he should know. In addition to being a student at Harvard, a psychiatry resident at the Albert Einstein College of Medicine, and a researcher and clinician at the National Institute of Mental Health, he also had a private practice and suffered his own bouts of depression. I think his outlook will amaze and inspire you.
Some other first steps in dealing with depression are:
Getting regular sleep;
Participating in an exercise program (any activity can be good as Gordon mentions in his book)
Cutting down/out on alcohol, tobacco or caffeine;
Building a strong support system;
Participating in activities you enjoy (although it is sometimes difficult to work up the motivation to engage in these activities)
Eating small, frequent meals that include complex carbohydrates;
And stress management either through meditation, prayer, yoga or other focus activities.
Have you considered support groups Judy P? We can help you find one in the Phoenix area if that is something you are interested in doing? And hang in there. We're here for you.
September 30, 2008 - 8:03amThis Comment
Dear Judy,
Thank you so much for coming to the website and for your post. I am so so sorry that you are going through such a rough time right now with your thyroid medications. I want to tell you first and foremost that you are not alone with having these reactions and these sad feelings. I have heard so many stories that are so similar to yours and I have also had my own on-going issues with thyroid medications.
I know it feels like you are all alone right now but please believe me that you are not, and that help is on the way to you. I'd love to help you get in touch with another local woman who had a similar experience. I think she would really be able to help you and it would be great for you to speak with someone who has gone through what you are dealing with now, and who is now doing really well.
If it's okay with you, I'd like to speak with you on the phone--could you please send me a private message through the site and send me your phone number? Best in health, Michelle
September 29, 2008 - 10:25pmThis Comment