[Kimberly]

in reply to: Back Pain #1066994

Hi Trish – Have you had a bone dexa scan done to check your bone density? Untreated hyperthyroidism can cause loss of bone mass. When I was first diagnosed, my doctor did a bone scan that showed that two of my vertabrae were "compressed". Getting my levels stabilized and taking calcium & vitamin D supplements has helped some. Maybe this is what your doc was talking about?

Best of luck!

[Kimberly]

in reply to: Living through Graves disease #1067084

Kavya – I think that most of us on this board have experienced what we call "Graves’ Rage" — but this is generally more along the lines of having inappropriate emotional outbursts, rather than lashing out physically. And it usually occurs when our thyroid hormones are out of balance.

You should *not* have to endure physical abuse, no matter where your spouse’s thyroid levels are. Please keep us posted.

[Kimberly]

in reply to: Graves Disease and my future #1067109

stephg wrote: Did you have block and replace yourself?

Steph:)

Hi Steph – No, I’m not doing B&R myself. I’ve been on Methimazole for two years, and I’m currently on 7.5 mg/day, which is keeping my levels in the "normal" range. I’m hoping I will be able to drop this down a bit when I go back in Feburary, as my levels are in the bottom half of "normal".

I don’t know if remission is in the cards for me, as my TSI is still elevated after two years. But I would be happy if I could maintain my thyroid levels on a low dose of the Methimazole. This is quite the rollercoaster ride!

[Kimberly]

in reply to: Graves Disease and my future #1067107

Hi Steph – I have heard of two different scenarios referred to as "Block and Replace".

The first one is what Bobbi mentioned — very high doses of ATDs are used to completely shut down thyroid hormone production, and then replacement therapy is used to achieve the desired thyroid hormone levels. I don’t think this strategy is used as much now, because of concern over the high dose of ATDs potentially causing liver issues or a reduced WBC count.

I have heard the other version referred to as "Modified Block and Replace" or "Add-Back Therapy". This involves much smaller doses of ATDs and replacement hormone. I have seen this used in patients whose thyroid levels are headed into hypO territory, but the doc does not want to withdraw ATD therapy, in hopes of giving them a better chance at achieving remission.

As for travel, you and your doctor will need to make the final decision. If you are severely hypER, travel is probably not a good idea. However, I can tell you that I am *not* in remission (I’m currently on ATDs) and I enjoyed the trip of a lifetime to Europe last summer! I would encourage you to carefully research travel insurance and purchase a package that covers pre-existing conditions. Also, be aware that when you purchase the travel insurance — and when you make the final payment on the trip — can impact whether you have coverage for a pre-existing condition. It’s best to do this research now, so you know your options.

I had two different legs of my trip, that I purchased with two different vendors. I waited to purchase travel insurance on the more expensive package, until I made the final payment. I figured it wasn’t worth it to pay the travel insurance up front on my small initial deposit. HOWEVER, because I waited, I did not have coverage for pre-existing conditions (which was a bit scary) on that leg of the trip. Next time, I will get the travel insurance ASAP.

Also, I don’t know if you will be travelling alone, but I was. I purchased a bracelet online where my medical info was engraved, as well as phone numbers for my doctor and parents. That gave me a little more peace of mind. (Now I try to remember to wear it when working out as well).

[Kimberly]

in reply to: My choice of treatment and a question about it #1068071

Hello – I would ask again for copies of your labs. For me, it is helpful to know if my levels are in-range or out-of-range and if they are rising or falling, based on the dosage of ATDs I am on.

Also, as Bobbi said — it makes a difference whether the ATDs are working in bringing your hyperthyroidism under control, in terms of whether you have some time to make a decision on RAI or surgery.

Best of luck!

[Kimberly]

in reply to: Endo has taken me off the methimazole #1067100

Hi Pam – I would point out the FT4 number to your endo, especially if it is on the low end of the range. Sometimes our endos get so fixated on the TSH results that they neglect the FT3 and FT4 — which is the measure of the *actual* thyroid hormone that is available for our system to use.

While we shouldn’t be making dosage adjustments on our own, I have "negotiated" dosage with my endo before — and I usually end up being right. ” title=”Very Happy” />

Best of luck!

[Kimberly]

in reply to: Weigh-in (just for fun) #1068795

Lacie – Congrats on the 1/2 marathon. What a great milestone!

ewmb – YAY for the continued weight loss…you are doing great!

I missed my normal WI, as I was out of town on Saturday. So last Thursday, I was down 0.8. I had hoped to take off the entire 1.2 that I gained before, but no such luck. I am coming to terms with the fact that this is probably going to be a two-steps-forward-one-step-back kind of a journey.

There was an interesting comment in the most recent GDF newsletter about Thyroid Eye Disease: "The specific cells that are being attacked are called orbital preadipocytes. These are cells behind the eye that are capable of turning into fat cells when stimulated by the
antibodies." Maybe this is going on in other parts of our body, which increases the degree of difficulty with weight loss. I’ve actually heard this speculation on another board — maybe there’s something to it.

[Kimberly]

in reply to: Graves Diagnosis but no distressing symptoms #1067248

Hello – Make sure you are getting copies of your labs, so that when you look at your T3 and T4 (hopefully, they are testing Free instead of Total T3 and T4), you can tell if you are mid-range, too high, or too low. Don’t be afraid to ask your endo questions as to why he/she is recommending a particular dose of anti-thyroid meds. Also, make sure your endo will be checking your levels frequently to keep your T3/T4 from falling into hypO territory again.

If your thyroid levels are too high, this does need to be treated to prevent bone/muscle wasting and potential heart issues. But, as you know from before, you want to stay out of HypO territory.

Best of luck!

[Kimberly]

in reply to: WBC low…what’s next? #1067259

Hi Mykena – It was nice meeting you at the conference! I am jumping in late, but hope that the endo visit went OK. About 45 days into treatment, my WBC dropped slightly lower than the "normal" range. The endo cut my dose of Methimazole in half, and the WBC returned to normal. I am still on methimazole 2 years later.

So this is a decision that you and your endo will need to make…but I wouldn’t say that this *automatically* means "the end of the line" for ATDs.

Best of luck!

[Kimberly]

in reply to: Still fighting to find insurance somewhere… #1067274

Sorry you are going through all this. ” title=”Sad” /> I don’t know where you are in your treatment plan, but maybe you can check with your endo or GP about your options? Perhaps there is some sort of payment plan that they can help you with…or maybe they could hook you up with a program that would help with the cost of your meds.

Agree with Bobbi that $400 a visit is pretty pricey. I usually see a physician’s assistant who works under my endo. The full price cost is about $150, but my insurance gets it down to $90. Plus, I pay between $100 and $150 for my labs, depending on what is ordered.

Best of luck — I just started on COBRA myself. What a big, confusing mess!

[Kimberly]

in reply to: Answers, anyone? #1067341

bluesky wrote: Hi folks — I know I’m new here and probably don’t have a right to demand things like this. And, don’t get me wrong, I absolutely appreciate the effort to share information and help each other.

HOWEVER, it’s rather off-putting when people post using the plural pronouns "we" and "our" when they really mean "my" and "your." All any of us can do here is talk about our own experience and often suggestions to each other. To generalize about the the entire population of people with Graves disease is inaccurate at best and patronizing and insulting at worst.

You say to-MAH-to…I say to-MAY-to.

While you are right that this is certainly not a "cookie cutter" disease, I personally find it easier to use "we" to refer to the Graves’ community, especially when I am talking about issues that many patients experience. However, I would not use "we" to refer to something that occurs in a smaller number of patients, such as thyroid storm or liver complications from ATDs.

There is a lot of collective wisdom on this board, and everyone has his or her own style. Hopefully, you won’t let a wording issue deny you the benefit of learning from the experience of all the other patients here.

[Kimberly]

in reply to: Treatment Options Section of Web Site #1071752

Just got the GDF newsletter in the mail, and it looks great! I am bumping up this original message, because I noticed that the "effective" rate for ATDs is still being listed at only 20-30%, compared to a 90-95% "resolution" rate for RAI or Thyroidectomy.

I think it would be helpful to patients to clarify that the 20-30% is for full remission for the disease. Based on the comments we heard at the conference from Dr. Cooper, keeping hyperthyroidism at bay by taking a low maintenance dose is a valid option for some patients, so this should increase the "effective" rate.

We also heard at the conference that the Graves’ autoantibodies can remain elevated for up to 5 years in patients following treatment with RAI. So I think it would make sense to clarify that the "resolution" rate for RAI applies to the hyperthyroidism, rather than the autoimmune component of the disease.

The way the wording is now, I think that it would scare off some patients for whom ATDs might be a valid choice. Personally, I’m not sure I would bother starting on a treatment course that was only 20-30% effective!

I would be happy to post some draft wording for review, as I am unemployed at the moment and have time on my hands! ” title=”Razz” />

Thanks!

[Kimberly]

in reply to: Answers, anyone? #1067337

Hello – I have diabetes on both sides of the family, so I totally understand your concern about weight issues. If you check out the "Weigh In – Just for Fun" thread, you can see that there are a LOT of us here who are struggling with our weight! In theory, our metabolism "should" return to normal once our levels are stabilized, but I have met many, many patients in person and online who have found that NOT to be the case. In fact, one of the presenters at this year’s conference mentioned in passing that perhaps there is a "resetting" of metabolism once a person is successfully treated for Graves.

Your first priority is to protect your health by getting your thyroid levels stabilized. Being overweight increases the *risk* of issues like heart disease, diabetes, and cancer…but being hyperthyroid is an *immediate* concern. Once our levels are stabilized, it is possible to lose weight — but I think we have to work quite a bit harder than the average person would. It’s a very frustrating process, but I believe it’s worth it. Hang in there!

[Kimberly]

in reply to: Weigh-in (just for fun) #1068789

Madame X – Salsa sounds like fun…and a fabulous workout! Do you post over on the WW message boards?

I had a great week food and activity-wise, and then was UP 1.2 when I weighed in this week. This is sooooo aggravating! I know that if I give up completely, things will get REALLY bad, so I need to stay focused…especially this time of year!

[Kimberly]

in reply to: GDF welcomes our newest Facilitator James #1067347

Congrats, James! I have always enjoyed reading your thoughtful comments on this board…I know you will be a great addition to the team here!

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