[gatorgirly]

in reply to: TED and my wedding #1170172

I second gangstabear’s comment about selenium, but I think she means 400mcg (micrograms), not 400mg (milligrams). I was taking 200mcg, now I’m down to 50mcg and my eyes have remained unchanged since I started the prednisone (which I have since stopped).

Of course, please don’t start taking anything – supplements included – without talking to your physician first. Both my endocrinologist and neuro-ophthalmologist are big supporters of selenium and I will do anything I can to prevent ever having to go back on huge doses of prednisone ever again.

[gatorgirly]

in reply to: Too many meds, no relief. #1170079

I do not have IBS but I have gastroparesis and GERD. My gastroenterologist said that while the thyroid is out of whack (particularly when hypO), the GI system bears the brunt.

The only relief I found for the gp is domperidone (a Canadian drug) 30 minutes before meals, and 40mg twice a day of omeprazole (similar to generic Prilosec) for the GERD. I am still on beta blockers for the racing heart, and Synthroid. I HATE having to take four prescriptions a day (plus my birth control, a multivitamin and selenium supplements for my TED), but my gastroenterologist thinks that once I get settled on the ideal Synthroid dosage, my GI system will settle down shortly thereafter. I never had GI problems until I went hypo after RAI. Even though I was only hypo for probably 2-3 weeks (in August 2011), I am still struggling with GI issues and still feeling hypER.

Do you mind me asking which treatment you chose?

[gatorgirly]

in reply to: Back to square one… #1170127

Hi Emmtee,

I sort of experienced what you described. I work in health care, and had a great professional relationship with a reputable surgeon in town who does many thyroidectomies each year. However, when I went to him for my thyroidectomy consult, he pushed me to prove to him that the surgery was better for me than RAI (we knew meds were not going to be a cure, just delaying the need for surgery or RAI). He explained it wasn’t his job to convince me to have the surgery, but my job to convince him to do my surgery. I respected this approach. He said being that I was 25 (27 now), the risk of surgery outweighed the risks of RAI. He was concerned about me missing a lot of work to recover, possible changes to my voice, and the obvious risks involved in any surgery. In the end, I decided RAI was best for me, but I think your surgeon was right in his insistence but wrong in his approach. He was wrong that RAI doesn’t take long (I’m living proof – it took me 22 weeks to go hypo) but everything else you described sounds valid. Like Bobbi sent, it’s probably not what you wanted to hear, but for the surgeon to turn down a surgery that would make him a good chunk of change, it sounds like his decision was ethical. There are plenty of doctors who will perform frivolous surgeries and deem them medically necessary just to get the insurance check.

The bottom line is you want surgery. If after getting a second, third and fourth opinion, you still cannot find a surgeon who will operate, then you might consider why they keep saying no. Until then, stick to your guns. I decided from Day One that I would have surgery…not gonna lie, I love cool scars. When I eventually found a surgeon four hours north who does them through the armpit with no scarring, I still wanted surgery. When they both told me surgery was an unnecessary risk for my particular case, I went with RAI. Neither refused to do my surgery, but recommended otherwise. But only after long, careful consideration and weighing the pros and cons of both treatment options.

Heed Kimberly’s advice and find a surgeon who does thyroidectomies regularly, preferably for Graves patients. I don’t know what the magic number is, but the waiting room will be a good indicator. I walked in on the day of my first consult and saw two women with postsurgical bandages on their necks – one had thyroid cancer and the other had Graves. Even though he is a general surgeon (the one out of town was an ENT surgeon who specialized in neck oncology and endocrinology – even better!), he had enough experience with Graves and thyroid disease patients to fit my bill.

Good luck in your decision, and best wishes for a speedy recovery!

[gatorgirly]

in reply to: If you had RAI…how long did it take you to become hypo?? #1169735

My endocrinologist also tells me that.Well, he hasn’t said “most difficult” yet, but he says I was his “most severe” at diagnosis and during ATD treatment (which failed). Isn’t it reassuring? Not…

I have a feeling “most difficult” will come up soon as I am again experiencing hyper symptoms 11 months post-RAI and yet we continue to drop my Synthroid dosage.

How are you feeling, Leah?

[gatorgirly]

in reply to: How do you deal with the emotional stresses? #1169688

I don’t, and I’m convinced that’s why I got Graves in the first places. I don’t address stress. I internalize it, as most of the stressors in my life are things I don’t feel comfortable sharing with anyone – finances, relationships, etc. I’ve started seeing a therapist who lets me talk and vent without judging, and reminds me that I haven’t done anything to hurt anyone, so the things I stress over are actually spilt milk or are simply out of my control so there’s no point in stressing over them. She once offered anti-anxiety meds but she knew I wouldn’t go for it since the Graves has caused me to be on Synthroid, beta blockers, two acne medications (thanks a lot, prednisone) and omeprazole for Graves-related gastroparesis and GERD. No more drugs!

I found music, yoga and exercise do not help me de-stress. The whole time I’m doing yoga or working out, I’m thinking about how I’m going to pay my next bill. I’ve learned that talking about my stressors to a total stranger helps me get them out of my head where they will constantly brew until I get another ulcer or have a mental breakdown. I work 50 hours a week and am very involved in a local non-profit, so there’s not much time for me to do things like arts and crafts, which I do enjoy. However, I find that keeping busy at work or with a volunteer project keeps my mind focused on the task at hand, rather than on money or men.

I’m convinced my type A, anxious, worrisome, stressed personality caused me to develop Graves. There is no family history of any thyroid issues. I hope I can avoid passing this on to my future children by learning how to better handle stress, accept help, and keep my thyroid levels where they should be.

[gatorgirly]

in reply to: If you had RAI…how long did it take you to become hypo?? #1169733

Hi Leah,

I was really hyper for about two months after RAI. I had to go back on PTU about two weeks after, and never did stop taking the propranolol because my resting heart rate was 120+ after RAI if I forgot to take it.

It took me exactly six months after RAI to become hypo, and that was this past August. I was only hypo for a few weeks. I started at 100mcg Synthroid, then 88mcg, and now my doctor wants me to drop down to 75mcg (starting tomorrow) as I am still hyper. Apparently, my body is not cooperating.

[gatorgirly]

in reply to: TED and e-Readers (Kindle, Nook, etc.) – Any Advice? #1169753

Hi Kimberly,

I received a Kindle Keyboard back in October as a gift, and I couldn’t be happier. Because it’s not backlit, it reads just like a book. I find there’s never a glare, even when I’m reading by the pool or in bed with just my bedside lamp on. Of course, since it’s not backlit, you need a booklight to read in the dark, but that can be uncomfortable for us TED sufferers. I would stay away from the iPad, Kindle Fire, nook Color, etc. Those screens are just like a laptop or cell phone and cause vision problems even for people who don’t have TED. Even with the Kindle (or any book or computer screen), I follow the 20-20-20 rule. Every 20 minutes of use, focus on something 20 feet away for 20 seconds. It really does help.

[gatorgirly]

in reply to: Double-Dosing Synthroid #1169787

Shirley, I like the idea of keeping one pill on my bedside table and leaving the rest of the pack (I’m still on free samples, yay!) in the bathroom. And to be honest, both my endocrinologist and my gastroenterologist told me it’s OK to take all 3 pills at the same time and that I can eat a half-hour later. Most days, I take them within 15-30 minutes because as you mentioned, I need to get that slow-release omeprazole in my system so it takes effect before I eat breakfast. I have never seen the round pill case you mentioned but I will look for one.

I’m not comfortable with the throwing-the-pack-on-the-floor idea simply because I have a curious pup who, although rarely, sometimes gets out of bed before I do and explores until I’m up.

Joanie, I would probably still find a way to take two pills on a morning when I’m really exhausted and take one when I look at the clock to see how much longer I can sleep and then another one when I actually wake up.

And yes, I agree! I’ll be back from Massachusetts on Jan. 2. Let’s do coffee or something. I’ll send you a private message when I’m back.

[gatorgirly]

in reply to: Alternative ways to deal with symptoms or side effects? #1169842

Hi Nicole,

I had a lot of stomach issues, too. I actually went to see a gastroenterologist. He had me undergo an upper GI (barium swallow test), an endoscopy and a gastric emptying study. After all three, I was diagnosed with severe GERD and gastroparesis. However, once we got my Graves under control with RAI (it took 6 months), all those stomach issues eventually resolved themselves, leading my gastroenterologist to believe it was all related to my thyroid being all over the charts. For a while, I was taking 40mg omeprazole (similar to Prilosec) twice a day and eating four Tums before and after every meal. It was awful. I know you’re looking for alternatives to more medications, but sometimes it’s necessary. I would recommend seeing a gastroenterologist to see if there is something more going on than just side effects from the methimazole.

On another note, my mother swears by acupuncture for severe arthritis in her legs. I work for a cancer hospital, and many of our patients find immediate relief from the chemo nausea when they have just one session of acupuncture. It can’t hurt to try, but please be careful with any type of herbs or supplements as they can interact with the drugs you’re already on or with your misbehaving thyroid.

Yoga helped me a lot when it was the only form of exercise I could handle. I went to a class where it was quiet, controlled and dark. Sometimes I became so calm I forgot I was in the class and would just do my own meditating version of yoga without all the difficult poses.

Happy Thanksgiving! And if your name indicates your college loyalty, GO GATORS (though I’m not looking forward to the massacre I’ll be watching in-person in Gainesville on Saturday)!

[gatorgirly]

in reply to: Getting Through this.. #1170029

Hi Bobbi,

Thanks for the suggestion, but since I work in health care, I have received numerous "second opinions" from endocrinologists and other physicians. I don’t actually work directly with patients. I work in marketing for a large health system and occasionally travel to and from different hospitals and physician offices within the system. I did just fine last year without it and am going to follow his instructions again this year. Personally, I’m a supporter of the flu shot. Until my diagnosis, I always got one and never got the flu. However, I’ve been a mess this year with other health issues, both related to Graves and not, and so I’m not going to mess with one more drug in my body unless it’s a matter of life or death (or TED) ” title=”Smile” />

Supermom – I’d be interested in seeing what you find out about blood donation. What state are you in, by the way?

[gatorgirly]

in reply to: Getting Through this.. #1170026

Hi supermom,

For what it’s worth, even when my Graves was under control with ATDs and propranolol, my endocrinologist advised me against the flu shot. I work in health care, so I had to wear a mask during flu season whenever I was working in the hospital… hospital policy.

I had RAI in February 2011, and have since become hypo and now take Synthroid. Even still, he doesn’t want me to get a flu shot. So it’s a mask again this flu season. Fortunately, the mask and obsessive personal hygiene seemed to prevent the flu just as well as the flu shot. Good luck, and take those drugs. You need them!

[gatorgirly]

in reply to: RAI treatment #1170000

Jane,

I was in the same boat as you. I love my endo but he didn’t explain the RAI process and after-effects very much. However, both the radiology tech and the radiologist at the hospital where I received my dose of RAI were so helpful and friendly. The radiologist refused to give me the pill until he had time to review my charts and speak to my physician, since my physician is not affiliated with the hospital. I felt good knowing that he really took the time to review everything before handing me a pill that would change my life and my body. So hopefully you can ask some questions of the staff/physicians wherever you are taking the RAI pill. Good luck!

[gatorgirly]

in reply to: Insomia relief? #1061222

ldalr,

My family medicine physician highly recommends against the use of melatonin. I told him it had worked for me on the few occasions I needed some help falling asleep. However, he warned that because melatonin is something our bodies make, if we continue to take it on a regular or semi-regular basis, our bodies will recognize there is enough and will stop producing it.

I kept the bottle (Sundown Naturals 300 mcg/0.3 mg) anyway and have taken one pill maybe once every 2 months or so on those nights where I am simply not tired but know I need to get to sleep in order to function the next day.

As with any drug, please check with your physician, especially your endocrinologist, about taking melatonin with your current combination of thyroid medications.

[gatorgirly]

in reply to: Insomia relief? #1061219

I also take a double dose, or maybe it’s a quadruple dose? 40mg before breakfast and 40mg before dinner.

I use the elliptical and other cardio machines at the gym. My heart rate gets up to 160 or so, and I am beat red in the face, but my endocrinologist says my heart is strong and it’s OK to get up that high. I look disgusting and often wear a hat to hide the fact that it looks like I just stepped out of a 250-degree shower (my hair is soaking wet), but it sure helps me sleep at night! Sometimes it’s a challenge not to fall asleep on the couch as soon as I get home from the gym at 6 or 7pm. I look forward to Florida "winter" (I’m originally a New Englander. It’d be much more tolerable to have Graves’ in a place where there are actually seasons!).

And yes, I am a Florida Gator – went there for grad school 07-09. My birthday always falls during UF vs. LSU week. I was at the game last year… not a birthday/gameday I want to remember

[gatorgirly]

in reply to: New to boards, not so new to GD #1169215

Hi Ashley,

I’m in a somewhat similar situation. I just sent you a private message because I really have nothing insightful to say that could help you or anyone else… other than, "I get it." ” title=”Smile” />

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