[susanne13]

#1058838

Hi All,
I haven’t posted her in awhile, it’s nice to be back I am not even sure where to start with my question, so I gues the beginning!

I was diagnosed with Graves’ in January 2010 after over 6 months of having almost every single symptom! I did start to feel better on ATDs but ended up having a TT in May 2010. After having HYPO symptoms, my levels finally got within normal range in January 2011. A couple weeks later I became pregnant, Synthroid increased for several months then stabilized. Three months ago, I had a healthy baby boy and went back to pre-baby Synthroid dosage.

Although there have been ups and downs with my levels, the ONLY time I have not felt slightly off was when I was pregnant. I feel pretty good most of the time, I run regularly, work, take care of my kids, but not the same as before I started feeling symptoms.

I still feel as though my anxiety is higher, I still have some stomach issues, my mood changes frequently, and I have turned into a hypochondriac (mostly because it took so long and a lot of doctor’s appointments to finally get diagnosed). Fortunately, I don’t have the major symptoms of either hypo or hyper. But I seem to remember reading other posts around levels being stable but people still feeling symptoms!

OK, so this is one of those “Please tell me that I am not alone” posts and some of this makes sense to someone else who has/had Graves’! Any feedback is greatly appreciated! Thank you!

[Ski]

#1170327

Hi Susanne,

You are definitely not alone! There are many who say that there are elements of themselves that have not returned to “normal” since GD. I think it’s likely that some of those things are related to GD, and some of those things are not — not enough research has been done on this particular element of the disease, the continuing emotional issues in particular. You’ve got a good point about the root of your hypochondriac-type behavior (it took so long for your diagnosis that you are now, perhaps, hypervigilant to every possible symptom). That’s not necessarily a bad change, right? It’s probably not helping the anxiety though….

You might benefit from keeping a symptom diary, to see if you can dial in your thyroid hormone levels more precisely. There is a lot of room within “normal,” and a symptom diary can amplify some of the trends in what you’re going through. You can discuss a diary with your doctor and ask for small changes to see if they help you feel better. Small, small changes in replacement dose can end up making you feel better sometimes (occasionally we split doses, take a higher dose for part of the week, lower dose for the rest — I take half a pill on Sundays, that seems to be just right for me). Patience is required during the process, because you do need six weeks after changing a dose to get accurate blood test results, so each little change means another six week wait. Worth it, nonetheless — compare 12 or 18 weeks to feeling crummy for the rest of your days, and it doesn’t seem so bad…

Also, if you determine that some symptoms are NOT related to thyroid levels at all, you need to engage your doctor as a team member to figure out what it IS so you can get real relief.

I hope that helps!! I know it’s hard to be going on for SO long, feeling like less than yourself, but it’s something we’ve all gone through. I remember the first day I caught myself literally skipping across a parking lot, I broke out laughing because I finally had spontaneous energy again, and it had been so very long. Unfortunately, I was alone, so probably looked the proper idiot.

[Bobbi]

#1170328

I sometimes wonder if it isn’t a little like post-traumatic stress syndrome. I was at ground zero in Hurricane Andrew, and it took me years not to flinch at the sound of wind or helicopters. Wind was, of course the storm. The helicopters flew over my house on a daily basis with news crews taking photos of the devastation or with supplies. So, with Graves/hyperthyroidism we were so very, hideously ill, and often we were the only ones who knew we were sick. The symptoms of hyper-/hypothyroidism are relatively common to the general population, too. Lots of people have occasional trouble sleeping. Lots of people get stomach issues. Lots of people get constipated. Lots of people have occasional bad moods. ETc. And the vast majority of the time it isn’t Graves . It’s one of the things that makes it hard to get that initial diagnosis. But we know those symptoms and associate it with our illness. So, when the symptom might recur, it’s like we’re thrown back into the dark days again. There is an emotional overlay that can take some time, and rational analysis, to overcome. I was diagnosed and “fixed” about 15 years ago, and I generally feel great, but I think “THYROID!” if I start having symptoms that I associate with hyperthyroidism. It’s a learned response. One positive aspect of having had the disease, for me, however, is that I do not take “health” for granted any more. I savor each day.

[susanne13]

#1170329

Ski and Bobbi,
Thank you both for your responses! It definitely helps

The anxiety around health issues is so heightened, I have had a colonoscopy and pelvic ultrasound in the past year (before I got pregnant) to make sure nothing was wrong and fortunately both turned up nothing!

And yes, whenever I get ready for a run, I am SO grateful to even be able to run a mile because there was a time in the midst of Graves’ symptoms when I could barely get up off the couch!!

Thanks!
Susanne

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