[Momof5 April 5, 2013 at 5:24 am Post count: 118]

#1059820

I have been reading old posts and catch glimpses of your stories, but would really like to hear your journies.

Thanks!

[KimberlyOnline Facilitator April 5, 2013 at 8:08 am Post count: 4294]

#1177926

Hello – Ski and Bobbi haven’t posted in a while, but I would love to see them come back! The idea behind this forum was that we would have multiple facilitators who could all bring different perspectives, but as we all know, sometimes “life happens.”

My General Practitioner actually ordered a TSH test during a routine physical in 2007, and spotted that it was too low. I suspect that puts me in a minority of patients who were actually diagnosed *before* they sought out help due to symptoms.

I actually *did* have symptoms – I just found excuses to write them all off! Insomnia? Work stress. Hand tremors? Too much coffee. I really didn’t do a good job of honoring my body’s signals!

The GP followed up with T3/T4 testing, then referred me to an endocrinologist. After *more* testing, I was finally diagnosed with Graves’. It took about 90 days for the whole testing/referral/more testing cycle, and during that time, I’d read plenty of books on Graves’ and thyroid issues, so I at least knew what Graves’ was. But it’s still a shock to be diagnosed with a chronic illness out of the blue.

When it came time to select a treatment option, I found the process to be quite frustrating. I remember my parents saying, “why doesn’t your doctor just TELL you what to do?” (Of course, looking back, now I know!) I think I still have my old handwritten “pro” and “con” list, but I eventually started on ATDs by default. My endo is one of the few that requires a low iodine diet for two weeks prior to RAI. The day I was diagnosed, I was getting ready to leave the next day for a vacation in Atlanta, so the LID was *not* going to happen, as it’s almost impossible to dine out. My endo gave me a prescription for Methimazole and told me to start on that until I was ready to make a decision. The side effects were initially a huge concern (and I had one sore throat scare, which turned out to be OK), but so far I’ve been fortunate and haven’t had any significant complications. I’ve now been on the meds for over 5 years.

The worst time for me was actually the first 10 weeks of treatment, while my levels were falling. I would drag through my workday, bolt out the door at 5:00, put on my pajamas, eat cereal, go to bed, and repeat the whole routine the next day. But I slowly started to feel better.

I’ve had some swings back towards “hyper” territory over the last few years, always correlated with periods of significant stress.

Am I 100%? No, but I’m probably 85-90% or so, depending on the day. I was an extreme Type A multi-tasking type of person, and I’ve really had to learn to slow down, make sleep a priority (instead of seeing it as something I could skimp on to get more done) – and to try and let go of activities and people that *drain* my energy instead of *giving* me energy.

Thanks for starting this thread – hopefully, some of our regular members who haven’t posted their stories in a while will do so as well!

[Momof5 April 5, 2013 at 8:48 am Post count: 118]

#1177927

Thanks, Kimberely. You are right. Getting the diagnosis was a shock to say the least. N

Did you ever have TED problems?

[KimberlyOnline Facilitator April 5, 2013 at 9:08 am Post count: 4294]

#1177928

Hello – I started getting symptoms of mild/moderate TED about a year into ATD therapy, mostly eyelid retraction and swelling. It’s also really changed my facial structure. Although I find the physical changes distressing – I tend to avoid cameras these days – I know what other patients have gone through with TED and feel that I need to count my blessings!

Edit: Just wanted to add that I have never been a smoker…as Susan noted in another thread, *anyone* can get TED, although smokers do have a higher risk for more severe complications, and they don’t respond as well to the treatment options.

[Momof5 April 5, 2013 at 10:02 am Post count: 118]

#1177929

So, you are still dealing with TED issues, even now? Or just the after effects?

[KimberlyOnline Facilitator April 5, 2013 at 10:10 am Post count: 4294]

#1177930

Hello – Yes, I still have the swelling and lid retraction. I seem to have better and worse days with the swelling. Some triggers I can identify (excess sodium, msg, exposure to second-hand smoke, alcohol), although sometimes the swelling remains a mystery!

[Stymie April 5, 2013 at 10:30 am Post count: 195]

#1177931

Just wondering what is a sore throat scare?

[KimberlyOnline Facilitator April 5, 2013 at 10:35 am Post count: 4294]

#1177932

Hello – Sore throat is a sign of a potentially very serious reaction to anti-thyroid drugs involving severely depleted White Blood Cell count. While this was going on, my doc’s office had me stop the meds temporarily and get a WBC test, which turned out to be OK…so she had me re-start the meds.

[Momof5 April 5, 2013 at 11:09 am Post count: 118]

#1177933

Wow. That is kinda scary (at least to a newbie) that your are still dealing with eye issues.

I think I am destined for eye problems And I don’t know how to get a grip on that.

[KimberlyOnline Facilitator April 5, 2013 at 11:59 am Post count: 4294]

#1177934

Hello – this *really* varies by patient, so please don’t let my story worry you! Yes, some patients do end up with severe TED complications that require surgical correction, but the vast majority will not.

You asked about stories from Ski and Bobbi…I know that both were treated with RAI (Ski actually needed two doses). As I recall, Ski has had no eye issues at all, while Bobbi did have issues with double vision for a period of time, but then things went back to normal on their own. (They can jump in here if I am off base). So each person’s story is unique.

You mentioned in another thread that you were not a smoker, which is great news, because that is the #1 factor that we CAN control when it comes to TED.

Take care!

[Momof5 April 5, 2013 at 3:16 pm Post count: 118]

#1177935

In truth, it ALL scares me, not just your story. I’m overwhelmed and anxious and feel out of control like I never have before.

[Gabe April 5, 2013 at 4:19 pm Post count: 182]

#1177936

Thanks for sharing Kimberly. Every story is so different yet familiar/similar at the same time.

Momof5: I hear ya. The feeling of confusion and lack of control makes me feel like I’m crazy. Living from from lab-work to lab-work is nuts. Always anxious about what new confusions the results will bring. I want this gone and therefore strongly leaning towards TT for me. I So want a day when I’m not in tears for no reason or shuffling paperwork because I can’t focus or *itching out people for little, stupid things. Beam me up Scottie!

Best, Karen

[Raspberry April 5, 2013 at 4:28 pm Post count: 273]

#1177937

Kimberly wrote:

I’ve now been on the meds for over 5 years.

Thanks for sharing your story with us! Do you ever get tempted to try going off the meds? What have you looked at in determining to stay on them or whether remission is near?

[KimberlyOnline Facilitator April 5, 2013 at 7:10 pm Post count: 4294]

#1177938

@Raspberry – My endo tests antibody levels about once a year, and they are unfortunately still raging…I know that if I quit taking the meds now, I would be right back on the hyper rollercoaster sooner rather than later. I’m not sure if remission is in the cards for me, but I’m in a fairly good place right now and I’m just not ready to “rock the boat” by moving on to a more permanent treatment option. My general practitioner made the remark once that “You are perfectly healthy except for your Graves’!” I guess that was an attempt at doctor humor. :rolleyes:

[Raspberry April 5, 2013 at 8:34 pm Post count: 273]

#1177939

Thanks Kimberly! I’m wondering how low I can go on my methimazole dose (which is now 2.5mg/day)if my antibodies are still active. My endo seems to think I can go lower as I’m a little low in the FT4 range. Have you ever heard of anyone on a maintenance dose of 1.25?

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