[kaicee118]

in reply to: C-Reactive Protein and Graves #1071928

Thanks for the suggestions. Maybe those things will help get my sed rate down, too, which has been elevated since at least 2005.

[kaicee118]

in reply to: Surgery on April 9th #1072469

Michelle – I will pray for you and your family, and ask that you do the same for me – my surgery is May 6th. Part of the reason I’m having surgery, like you, is that my eyes don’t get worse. I’ve also gained weight instead of losing it – so here’s hoping we’re both feeling better soon! Best of luck to you. Let us know how it goes.

[kaicee118]

in reply to: GD Recurrence #1072578

Hello – other folks can probably give you more information than I can, but Graves does recur – it happened to me, although I was only in remission for about 12-18 months. Same as you – I started having symptoms that were all too familiar, went and had a blood test, and my TSH and T4 were up to their old tricks…second time was worse than the first, so you should go and get a blood test…best of luck to you.

Karen

[kaicee118]

in reply to: Surgery in Two Days #1072676

Best of luck – I’m also having surgery in May so I’m interested in hearing all the details! I hope you’re feeling better soon.

[kaicee118]

in reply to: RAI VS Surgery #1073037

Hello – I am choosing to have surgery because I am not crazy about the idea of having radiation destroy my thyroid, and also because my eyes are a little screwed up and I don’t want to make them worse (I’ve also been told that RAI could adversely affect one’s eyes, particularly if there are issues to begin with)! Also, the two times I have been on tapazole I haven’t felt well at all – so my surgery is scheduled for May 6th.

Good luck.

[kaicee118]

in reply to: Bad Thoughts #1073166

I’m not a psychologist, but this sounds like obsessional thinking, which can definitely be reined in by medication. Go sooner rather than later, because it can make a big difference. Good luck.

[kaicee118]

in reply to: Autoimmune Disorders #1073357

Following my Graves diagnosis in 2006, I had symptoms consistent with myasthenia gravis. I was tested over several months for MG, and all tests were negative – however, no one will tell me that I definitely do not have MG. Many of my doctors, including two neuros, told me that there is a link between Graves and MG (I’m not sure what or how), and that I will continue to be monitored. Specifically, they are concerned with the weakness of my eye muscles – there are many symptoms for Graves/TED, I know, but some of what has happened with my eyes do not exactly fit the norm of TED.

[kaicee118]

in reply to: Anyone that tried natural methods/diet? #1073644

Thank you, Jake George! That was a very compelling explanation.

I have periodic misgivings about planning a thyroidectomy, thinking that this isn’t my thyroid’s fault, it’s my immune system’s fault, etc., but then I try to remember, as you said, that my thyroid is damaged.

Also – someone said something about a person not having Graves disease, but rather inflammation of the thyroid. My endo didn’t want to say 100% that I had Graves after my first episode, even though I had antibodies. But once it came back the second time, he was sure – it wasn’t just a transient infection.

[kaicee118]

in reply to: Yet Another Request for Help with Numbers #1073441

Thanks for your comments. I emailed my doc this morning – he said that while my numbers are still on the high side, they are stable enough for surgery, which is what I’m planning to do. So – no change in Rx at this time.

Just as an aside – this is my second round of Graves, and it’s definitely "stronger," or more aggressive, this time. I’m taking at least twice the amount of tapazole I took the first time, and the first time my numbers were within normal range within a month.

[kaicee118]

in reply to: Had Thyroidectomy Feb 5th-still not well #1073520

Karen – I’m sorry to hear you’re not feeling well. What does your doctor say about your rate of recovery? I remember reading about the difficulty with your airway, and I’m guessing that maybe this complication has made your recovery more difficult?

I remember after foot surgery, my doctor told me to measure my progress by the week, not by the day. I hope you’re feeling better soon.

Karen

[kaicee118]

in reply to: insecurity? #1073575

Shellie – I can certainly identify with hyperthyroidism making you not feel like yourself. I have not only felt bad physically, but emotionally. And it’s not just, "Well, I’m feeling really anxious," or "I’m feeling depressed"; it’s seems to change the way I think about and perceive things. I definitely relate to this.

The only comfort is that, now that I’m in my second round of Graves, I can identify these things more clearly as being related to the disease. That makes it not so scary, at least for me. Good luck – hope you feel better soon.

[kaicee118]

in reply to: More Eye Questions – driving me crazy… #1073688

Much thanks to everyone for your input. I feel like the TED is the component of GD I know least about, and it’s also the one which is causing me the most grief at the moment.

I LOVE to read before going to sleep, but by that time my eyes are so dry and tired and blurry that I might be able to read 5 or 6 pages and that’s it So…reading is wonderful for relieving stress for me, but I’ve had to limit it.

I just got new glasses for general use, the computer, and then some wonderful prescription sunglasses. I’ve been wearing the sunglasses at my computer, much to the amusement of my coworkers. My boss told me I looked like a Beatle, which made my day!!!

I really do try to eliminate stress whenever I can. I am a naturally anxious person, and I feel that’s probably how I got GD to begin with. Then again, the anxiety has gotten worse with the Graves, so it’s a vicious cycle.

Back to my eyes…I’m going to look for the eye-blinking thing, because I find, at the computer, that when I blink my eyes and leave them closed for a second or so, it feels like such a relief! I also need to call the ophtha about drops. And just as I’m writing this, my lids are twitching so much it’s almost comical!!

The CT scan I had recently showed "mild" changes in the muscles, but yet I’ve had double vision for a year or so. Everything I’ve read about TED says that double vision usually means more than just mild disease, but I can’t seem to adequately describe to my doctors what my eyes do! I see the double vision guy tomorrow, so I’m hoping for some more understanding, and maybe more of a prognosis/plan than I’ve gotten so far!

Again, thanks for all the info and suggestions. I feel like I have questions about GD every day, but I certainly can’t be calling up my doctors that much!

[kaicee118]

in reply to: muscle/joint pain #1073741

Hi – I can’t speak to your issues about changing medication dosage, but I can say that my experience with muscle pain even preceded my Graves diagnosis – but I’m sure that it was the Graves that was causing it, because I know now that when I’m hyperthyroid, sometimes I get serious muscle pain. I describe it as feeling like I have the flu.

It was so bad for a while that I have been treated for fibromyalgia, and I still take medication (Lyrica) for that. I may not truly have fibro, but the Lyrica helps with the muscle pain.

I’m glad you have found a good endo in an unfamiliar place! Best of luck to you…

Karen

[kaicee118]

in reply to: Remission but still in "fog"? #1073787

Hi Laura – I was diagnosed with Graves two and a half years ago, but probably started with symptoms three and a half years ago. In that time, I’ve been on meds, off meds, with full-strength disease and in remission. During whatever stage I’m in, my focus and concentration have been poor. I’ve never been that great in this regard anyway, but I have been truly struggling since 2005, and my job has become very difficult at times, as I have to juggle a lot of tasks.

Just anecdotally, I try to do little mental and memory exercises whenever I can, and, if you like to read, I find that reading enables me to concentrate better than I can during other times of the day (except that my eyes have gotten funny, too…but that’s a whole other story!).

Best of luck to you.

[kaicee118]

in reply to: I officially have TED #1073848

This is my second CT scan – the first was one year ago, and the eye doctor said for that one, he may have seen some very very slight abnormality, which he might not have even noted if he didn’t know I had Graves. This year, he said there were changes – still not severe by any means, but definitely consistent with TED.

I’m usually pretty good with my medical history, but I can’t say for sure when the eye symptoms started. I think I started noticing very subtle changes in spring/summer 2007, but everything really solidified in my mind when I saw a neurologist (they were working me up for myasthenia gravis) in early 2008 and he had me look in all directions, following his finger, and I realized how often I was seeing double when I did that.

I am going to see yet another specialist (!), an "orthoptist", regarding my double vision, soon. In the meantime, I have an appointment in March to see a surgeon about a thyroidectomy. Would having the thyroid removed have any effect, positive or negative, on my eyes?

Thanks.

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