My husband couldn’t believe how happy I sounded as I recounted the less than happy Endocrinologist appointment. I’ve grown to be a better faker.
I really want to be positive on behalf of my friend, Heather, who had a thyroidectomy today. I need to let out my frustration.
I’d say that I just initially laughed about my appointment because I have no more tears left to shed, but that’s not true either. Later on my trip home, the tears were streaming.
I like my endocrinologist. He’s attentive and well respected. I think I just don’t get the specialty. It seems like there are no real answers for us folks with thyroid probs. And, a lot of contradictions.
I think the part that made me most sad today is his reaction to when I mentioned 
the Hashimoto’s. He said, “You don’t have the antibodies, only your TSH is abnormal so I can’t diagnose you as having Hashimoto’s” I said, “But when I got the call about the bloodwork, the person said you said I have Hashimoto’s without the antibodies and that 10% of people don’t have the antibodies.” He went back through his reports and couldn’t find that listed in any notes. I’m crushed. After all this time, all of these tests (thyroid and otherwise) I still have nothing I can call by name. And, I just joined the Hashimoto’s group on Facebook. Guess I’ll have to unjoin.
I will summarize my visit with the Endo here.
Don’t take my husband to doctor’s appointments.
My Endo thinks that perhaps my nervous talking husband impacted how the University doc viewed me and how she didn’t take me seriously. This is ridiculous. My husband is a great guy and was only trying to help. I suppose I will no longer be sad that I go to 98% of appointments alone.
I’m not going to die. (right now)
Because the University doc says I don’t have ALS or other motor neuron disease, I’m not going to die anytime soon and that’s what he worried about.
My eye problem(s) are not because of my thyroid.
Thyroid eye disease is a diagnosis of exclusion – when everything else has been ruled out. According to my Endo, thyroid probs do not cause redness in the eyes and narrowing of the optic nerve. Nor are thyroid eye problems asymmetrical. I need a Flourisine (sp?) test and a field of vision test. If my ophthalmologist feels this is out of her expertise, he knows someone to send me to.
My thyroid not a big problem.
I have a goiter. It’s the good kind of goiter and overall my thyroid prob is not that big of a deal. I don’t know if I agree or disagree. The biopsy results show dead red blood cells indicating that the goiter has been there for a long time. I will have another thyroid ultrasound in the Spring of 2010 to see if the size has increased. If so, then I will be given a higher dose of medicaion to shrink it.
To lose weight, I need to cut carbs and exercise.
He has no other explanation for my inability to lose weight other than cutting carbs. Really? That’s all you’ve got?!? I have been a dieter all of my life and never had trouble until now. When I asked about gluten, he said it has less to do with gluten and more to do with carbs. So what did I do? Munched on a baguette after the appointment.
As far as exercise, once “they” know what’s up with my leg, I need to exercise but he doubts I’ll be able to go back on the treadmill any time soon.
That’s all.
The bottom line with my medical treatment is that everyone except my thyroid expert blames my thyroid. I’m still a medical puzzle and it still sucks.
I appreciate the recent comment from Linda who also had a recent muscle biopsy. Her results showed no problems. I’m so frustrated for her. That is my own big fear. Hang in there with me, ok?
As always, I am interested in your comments and appreciate the camaraderie of my fellow Sickies. Even in my sarcasm and frustration, I’m thinking positive thoughts for Heather and for all of my wonderful, brave friends.
Filed under: Uncategorized Tagged: | hypothyroidism, thyroid, undiagnosed chronic illness
—So, first I’d like to say that I’m very happy that they don’t think you’re going to die anytime soon. I know when you’re looking for a diagnosis that it’s frustrating to hear the list of things you don’t have, but those definitely sound like things that you wouldn’t WANT to have, so try to celebrate that, when you’re feeling a little less frustrated.
—My personal view is that husbands are good to bring along when the doc wants to discuss various options about things (like tests, treatments, etc.). But while I have trouble with the idea of a doctor dismissing you because of something your spouse said, well, some doctors are just idiots, even or especially when they’re at the top of their field.
I’m a firm believer that I’d rather have a doc with a good “bedside personality” than the one who’s best in the field. (And of course you and I have already talked about how much we hate our neuro experiences. 
There’s a good doc out there somewhere, who will figure out what’s wrong with you. I promise.
—Goiter? I assume you’re on some kind of synthetic thyroid supplement like Synthroid or Levoxyl? Is that the med they’ll adjust for you, or will they do something different? Is it really OK to wait a whole ‘nother year to do something about the goiter? (FWIW, my hypothyroidism was discovered by a general practitioner who noticed my thyroid was oversized during a routine exam where he felt my neck. Is that a goiter? I’ve been told since that he was unusual to be able to find it like that. Of course, then he wanted to wait and monitor my TSH levels and I didn’t go on Levoxyl until 18 months later when I changed doctors. Sigh.)
—I hate it when docs refuse to consider atypical cases of diseases. Yes, 90 percent of people with Hashimoto’s have the antibody. But SOMEONE has to be in the 10 percent. It’s crazy that he refuses to consider it might be you. I wouldn’t quit the Facebook group yet if I were you … you might end up with the Dx eventually anyway.
—Exercise. Weight loss. Sigh. Yeah, I’d love to exercise again, and I’d definitely like to lose weight. Get my health under control and maybe I’ll feel well enough to exercise …
Anyway, I’ve got lots of empathy for you on those fronts. And it surprises me that the endo won’t consider that your thyroid is affecting your ability to lose weight. :-/
Hang in there, sweetie.
Thank you for such a thoughtful reply! Without you, this blog would be mostly a secret and mostly just me talking to myself!
I definitely am happy to know that some of the big scary diseases are unlikely but I never fel like they were real possibilities for me so it’s a bit anticlimactic for me to hear about them.
I was a little surprised by the comments bout my husband not being the best asset for me at appointments . Especially because I’ve been so disappointed going to most appointments alone. I’m glad your husband has been helpful for your tx.
I love that you said “There’s a good doc out there somewhere, who will figure out what’s wrong with you. I promise.” readng those words feels like a big giant hug.
Yes, I take Synthroid for my goiter. If you have an enlarged thyroid, it’s my understanding that that it is a goiter. I was initally told I have a “thyroid adenoma” and later saw that all my paperwork said “unilateral goiter”.
I am so confused about the Hashimoto’s dx. It was his office who called me and said I was one of the 10% and now he is saying he wouldn’t say that. blah. It is so true – docs don’t want to consider the atypical and I am resentful that I am atypical. Just once, I’d like to get a slam dunk dx. What are your ocs saying about your thyroid now? Is it contributing to any other probs/symptoms you’re having?
I really need to develop a personal plan for weight loss. I have a history of obsessing about weight and now, it seems like nothing I do makes a difference, I’m working to look into new approaches.
Your support means more than you can know. xxooxxooxxoo
WOW – your name is Lisa right? I was just reading your letter over at Dear Thyroid and thought that I would take a peek of your blog.
Thank you so much for sharing all this … Even though you joke about it and whatnot, I think you are so strong for juggling everything that is going on in your life.
Posts like this are so helpful to me personally – even though it isn’t nice to know that you are suffering like this, it makes me feel more determined to kick my thyroid’s butt. So thank you!
Take care,
Bek
x
Hi Bek,
Thanks so much for the sweet comments! You think I’m strong? Wow, that’s such a self esteem boost for me. I don’t feel as though I’m very strong. Though I do feel like there is strength in numbers when we share our stories with each other. How are things going with your thyroid? Thanks for reading. I only decided to make this public with the hope that it would resonate with someone at some time. I’d love to hear more from you!
Take good care!!
I definitely think you are strong! Please keep writing and posting, I will definitely be coming back to read, I promise.
I only just recently found out about my thyroid, but I have been been sick for two years. I’m only 16 (almost 17!) and I’ve missed 4 days of school this week
My doctor doesn’t really know what is going on as my tests show I have Graves’ but I haven’t really lost any weight … Going to an endocrinologist in a month. Frustrated that it is taking so long to get in to see him!
Thank you so much!
Take care
x
Oh, Bek. Such a young age to deal with all this mess. Talk about strength – you’re the picture of it!! Sounds like you are on the right track with docs and I hope they reach answers quickly. I was 15 when I first showed symptoms and I didn’t follow through with docs when I could have. I wish you all the best and know you have support here whenever you need it. You take care, too, k?? You are not alone, sweetie.
Thanks so much, I really appreciate that especially when I feel like crap and am tired and whatnot. Which would be right now. Also, thanks for the reminder that I am not alone. x
Dead red blood cells are present if the bleeding inside thyroid took place a while ago
Thanks for your posting. I hope by reading this article your article will bring smile on the many peoples face. And they will feel stronger fight with their disease.
I too have vision and eye problems (although mine is more right eye) and none of my doctors will ever listen to me when I try to tell them that I KNOW that my vision/eye issues are related, because they get better and worse along with everything else. I’ve had my eyes checked a couple times, but both the Optometrist and the Opthomalogist were so disinterested that they told me I’m far-sighted (which I’ve always been), prescribed glasses (that don’t correct anything… just make the blurriness larger), and told me to use eye drops.
However, I’m convinced that my eye/vision issues are a symptom of an underlying illness, rather than “the” illness, so I choose not to focus on that aspect. I’m not saying that it’s the same for you, just intrigued by yet another similar issue I have to your story.