[Kimberly]

in reply to: Went to the doctor today… #1067638

Hello – Are your thyroid levels stable…or are you either HypER or HypO? Either condition can impact the menstrual cycle. HypO is more commonly associated with longer, more frequent periods.

Also, if you are having eye involvement, you might wish to get a recommendation for an ophthalmologist (not just an optometrist) in your area. The usual course for the eye disease is that symptoms tend to get worse over a period of a few months up to 2-3 years, which is called the "hot" phase. Then the symptoms subside somewhat and level out in what is called the "cold" phase.

Many Graves’ patients only have very mild eye involvement throughout the entire "hot" phase, but a few others have more serious eye complications. A qualified ophthalmologist will be able to monitor the progression of your eye issues…and will be able to suggest treatment options along the way. In general, more radical treatments like surgery are NOT attempted until you reach the "cold" phase of the disease…unless there is an immediate threat to your vision.

Hope this helps!

[Kimberly]

in reply to: New to here, Graves, and life #1067642

robertajean_ wrote: I’ve only seen my endo once since this has happened, and it took months to get in to see him. I was put on methimazole, which made me feel better for a while. Recently, I went in to have more blood work done (must’ve had blood work at least once a month for the past half a year!) and the results came back abnormal. I don’t know really, I can’t seem to get any information from anyone.

Hi Roberta – Many of us just got back from the annual conference for the Graves’ Disease Foundation in Charlotte. One of the issues we discussed during the final day was the fact that many endocrinologists specialize in diabetes and are NOT as informed about Graves’ as they should be.

I would recommend getting a copy of every set of labs that you have had run for the last year. The doctor’s office might charge you a fee for the copies, but you are entitled to get this information. Then, when the doctor’s office tells you that something is "abnormal", you will be able to see in black and white exactly *which* test was abnormal…and whether that particular benchmark was too high or too low. It’s also good to note the *direction* in which your labs are moving. For example, if you have a test that is SUPER abnormal at one point, and several weeks later, that benchmark is only SLIGHTLY abnormal, this is actually a sign that things are moving in the right direction.

Educating yourself on Graves’ Disease and tracking your own labs will allow you to be an active partner in charting your treatment course…instead of just accepting the (limited) information that our endos sometimes give us.

Best of luck!

[Kimberly]

in reply to: Effects of RAI #1067699

Lucy wrote:I was worried about killing off white blood cells with ATD, but as you say that usually happens soon after you begin the medication. I imagine with the ATD it will require frequent blood tests.
Is there anyone out there who has been using ATD for a prolonged period of time?

Hi Lucy – I have been on ATD’s for two years and plan to continue with this treatment option unless I have liver or WBC issues. I get these issues checked (CBC for white blood cells and CMP for liver function) every time I have blood tests run.

Also, if you are on ATDs and get a major sore throat with fever, contact your endo ASAP. Get a blood test done to check your white blood cells.

These potential complications are scary, but unfortunately, *every* treatment option has its pros and cons. It’s important that you listen to your endo’s advice…but then ultimately select the treatment option that YOU are comfortable with.

[Kimberly]

in reply to: H1N1 vaccine and graves #1067668

I thought this was an interesting comment, because a couple of us in the room during that session had been instructed by our endos to not only avoid live vaccines…but also to avoid contact with anyone *else* who had recently had a live vaccine. The endo at the conference felt that this was overly cautious, and that the benefit outweighed the risk.

Personally, I still plan to use caution with live vaccines.

So many opinions! It’s never easy, is it? ” title=”Wink” />

[Kimberly]

in reply to: The conference #1067685

Of course, Ski is too modest to mention that she received a special award for "Volunteer of the Year" for all the work that she does with the boards here. ” title=”Very Happy” /> Congrats!

Ditto what everyone else said about the conference. I really enjoyed learning more about Graves’ Disease, re-connecting with old friends, and meeting new ones.

And yes, the hotel was fabulous! I stayed an extra night in Charlotte, but had to switch to the Airport Sheraton, because the Ballantyne was full on Sunday. As you can imagine, the Airport Sheraton was *slightly* less luxurious.

[Kimberly]

in reply to: Having surgery 3 weeks after RAI??? #1067737

Would you be able to get your levels checked just before surgery…and maybe postpone (or at least give the surgeon a heads up) if you are still actively hyperthyroid?

[Kimberly]

in reply to: Just told I need to get RAI, concerned about weight #1067763

needadvice wrote:You mention something about "any liver or WBC issues", I hadn’t heard about liver issues yet

Yep, each of the 3 treatment options has pros and cons…and one of the concerns with anti-thyroid drugs is the potential for liver problems and/or a severely reduced white blood cell count. This is a *rare* side effect, but patients do need to be aware of it. With every blood test that I have done, I get a Complete Metabolic Panel (which checks for liver function) and a Complete Blood Count (which provides info on the # and type of white blood cells in the body).

The good news is that if these side effects are caught early, the damage can usually be reversed when the meds are stopped.

One of the doctors said at this weekend’s conference that the liver/WBC side effects "never" occur after the first 90 days of treatment, although if you stop and re-start for any reason, the 90-day period starts over. I think "never" is a pretty strong word, but it’s reassuring to know that at least this physician has never seen these complications past the 90-day mark.

As for the weight issues, we had an interesting presentation from a nutritionist during one of the breakout sessions. She utilizes Metabolic Testing to check the Resting Metabolic Rate (RMR) of her clients. This is the amount of calories that our bodies consume at rest to keep our heart, lungs, etc. working.

She provided one example of an actual client wo had RAI and is on replacement therapy. There is a "standard" calculation based on weight, height, and activity level that many people use to determine RMR. However, she found that this woman’s RMR was actualy about 150 calories a day *less* than the standard. I wanted to say, "THANK YOU!!!!!" *Finally*, someone acknowledges that even though our levels might be "normal", our metabolism might be different than it was before. It’s still all about calories in vs. calories out, but the degree of difficulty goes up a notch for those of us who have had thyroid trouble.

If you are interested in getting your RMR measured, the presenter said that the Charlotte YMCA offers testing…so other local YMCA’s might also offer this service. I think my doctor’s office does this as well, so I am going to check it out.

Best of luck!

[Kimberly]

in reply to: Just told I need to get RAI, concerned about weight #1067759

Bobbi wrote: Endos typically will not adjust thyroid hormone levels to try to help someone lose weight. The dangers of having too much thyroid hormone — even little bits too much — are significant: bone loss; muscle loss; potential for thyroid storm; etc. And, quite frankly, anyone who tries to lose weight that way — by taking extra doses of thyroid — is playing a metabolic form of Russian Roulette.

While I agree with this, it would still be nice if our endos took *some* interest in our weight issues…as excess weight can increase our risk of stroke, heart disease and some types of cancer. Also, I have diabetes on both sides of the family and my blood sugar constantly tests in the upper range of "normal". My general practitioner has told me that I *need* to keep my weight in a healthy range if I don’t want to follow the family tradition and wind up with diabetes.

Although now that I think about it, maybe that’s why my endo’s office doesn’t seem to care. If I get diabetes, then they can charge me for *two* diseases instead of one. ” title=”Razz” />

[Kimberly]

in reply to: Just told I need to get RAI, concerned about weight #1067758

needadvice wrote: Kimberly, did you get RAI? If so, did you gain more weight after you got it?

Hello – no, I have not had RAI. I am currently maintaining my levels at 7.5 mg/day of methimazole, although I’ve had to make a couple of dosing adjustments over the last couple of years to stay in the "normal" range.

As long as I can remain free of any liver or WBC issues (and I get this tested regularly), my philosophy is that "the devil you know is better than the devil you don’t". ” title=”Wink” />

[Kimberly]

in reply to: Weigh-in (just for fun) #1068769

"ewmb":xmgrhelm wrote:

You might go back and redo your initial assessment of how many points you should be getting per day again from your beginning book if you still have it. [/quote:xmgrhelm]

Yep, sounds like I’m gonna have to suck it up and do exactly that — after I get back from Charlotte!

Thanks for the response!

[Kimberly]

in reply to: Weigh-in (just for fun) #1068767

"ewmb":1l5647lb wrote:

Just checking in too. I have lost 5lbs on my WW regime again. [/quote:1l5647lb]

That’s awesome…congrats! If you don’t mind me asking, are you doing exactly the level of daily POINTS recommended for your height, weight, etc.? I have been playing around with just cutting back a few POINTS from my maintenance level, but that just isn’t cutting it. I gained 2.2 this week to 143.2.

My thyroid levels were stable as of last month, but my hunger-o-meter seems to be perpetually stuck on "starving" — so the idea of going back to 19 POINTS a day is a little scary right now.

I have *got* to do something, though, or I won’t have any clothes to wear!

[Kimberly]

in reply to: Just told I need to get RAI, concerned about weight #1067755

needadvice wrote: He said that he recommends Radioactive Iodine (RAI). I asked if that will make my eyes protrude more, he said no

You said "make my eyes protrude more…" Do you already have some level of eye involvement? Some endos will not recommend RAI at all for patients with thyroid eye disease, and others will recommend a course of prednisone in conjunction with RAI to try to keep the eye issues from getting worse. Can you get a second opinion?

Others who have had RAI can address the weight issue. I did not lose weight while hyper, and I have packed on about 13 *additional* pounds during my 2 years on methimazole. It’s incredibly frustrating, so I feel your pain!

Best of luck!

[Kimberly]

in reply to: Methimazole: trying to get to maintenance dose … #1067783

Hello – One issue you might discuss with your doctor is whether you might benefit from an additional drug called a beta blocker, which could potentially help your elevated heart rate.

Also, can your doctor pull any strings to get you into the endo sooner? Sometimes spots seem to miraculously open up when it is a doctor’s office calling versus an individual patient. ” title=”Wink” /> If that doesn’t work, maybe you can get on a waiting list so the endo’s office can call you if they have a cancellation. It’s worth a try!

I actually felt like *crap* when my FT4 got to the bottom of the range, so I was really happy to have my dose reduced! You will find, though, that everyone’s journey with Graves is a little different.

Best of luck!

[Kimberly]

in reply to: New Here and Very Thankful #1067941

I have a subscription to Oprah — my copy just arrived in the mail, so I went straight to your article.

I have to say that you look MAAAAH-velous! I wish I’d thought to send in an application.

Also nice to see Graves’ Disease getting a mention in a national publication. On a side note, I would actually be very curious to know if Oprah’s thyroid troubles a while back might have been autoimmune in nature…perhaps the start of Graves’ or Hashi’s.

Anyway, congrats – see you at the conference!

[Kimberly]

in reply to: H1N1 vaccination #1067922

I have not heard a definitive answer on this, but one other issue to consider is whether or not the vaccine is "live". I take Methimazole, and have been told to avoid all "live" vaccines *and* to avoid contact with anyone who has had a live vaccine, due to the risk of getting that particular virus.

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