[Kimberly]

in reply to: Weight gain during Graves disease #1070992

brendacoble wrote: I even tried Weight Watchers a few years ago and was doing really well, this was at the beginning of me being diagnosed with Graves and when I didn’t loose weight for a couple of weeks.

It’s odd that your leader referred to a couple of weeks of stalled weight loss as a "plateau", as it usually takes a longer period of time before you can determine you are in a "plateau". Regardless, stalled or slowed weight loss can definitely be discouraging and frustrating, but the thing to keep in mind is that it is *not* permanent. Often, changing things up (different foods, different activities) to get the body’s attention can get your weight loss headed in the right direction again.

Also, have you had recent labs…and discussed your extreme fatigue with your doctor? The fatigue is definitely the first issue to tackle. Weight loss is never *easy*, but it should at least be a little bit *easier* when you have some energy back.

[Kimberly]

in reply to: Gluten Free Diet???? #1070768

Mommy wrote: My daughter has really bad eczema, gets tummy aches after eating, constipation and just has basically lost interest in meals. So…something is definitley going on.

Hello – One other thing to add…I’ve heard of similar symptoms with food sensitivities or "delayed" allergies such as eggs and dairy. So if you don’t see an improvement on a gluten-free diet, you might consider that another allergen could be the culprit.

The best way to test for sensitivities or delayed allergies is to remove a specific food for a period of time, and then add it back to your diet, making a note of any symptoms that occur. If you don’t have any luck removing specific foods, there are companies that do blood testing for food allergies. The process is several hundred dollars and may not be 100% accurate. However, I found that it gave me a starting point when considering eliminating specific foods from my diet.

One caution – if you suspect that your daughter might be anaphylactic to certain foods (i.e. immediate, severe, allergic response) this needs to be handled by a medical professional, rather than testing on your own.

Good luck!

[Kimberly]

in reply to: Newly diagnosed and not much information……..I’m scared #1070725

Hi Michelle – Welcome to our little club. ” title=”Very Happy” />

Others can give you information on the guidelines for RAI, but I just wanted to mention that there are two other treatment options. One is to stay on the tapazole. Some people actually go into remission after a period of taking Anti-Thyroid Drugs; others manage to reach a point where normal thyroid levels can be maintained on a low dose. (That’s where I am at now). There are potential side effects to the drugs, including impaired liver and white blood cell function. However, there are tests (CMP and CBC) that will check for these issues, and stopping or reducing the meds usually corrects the problem. The third option is surgery to remove the thyroid.

Since you have some time, you might want to research the pros & cons of all three options and make sure that you pursue the option you are most comfortable with.

I’m not really sure what your doctor’s intent was with the dosing. Most folks that I know of take a certain dose for a specific period of time, and then run a blood test to see if their thyroid levels are returning to normal. The dose can then be either increased or decreased, depending on whether their thyroid levels are responding. Maybe the higher dose is that one that you need to be on, but your doctor wanted to ease you into it?? It might be worth a call back to the doctor’s office to verify.

Work, kids, school and Graves is a lot to deal with at once! Would it be possible to lighten up on your courseload…and get someone to help you out at home? Everyone’s experience is a little different, but my worst period during this whole journey was my first 10 weeks on meds, since my levels fell FAST. During that time, I pretty much had my hands full with just work and Graves…about half of what you have on your plate. ” title=”Wink” />

Best of luck!

[Kimberly]

in reply to: Gluten Free Diet???? #1070766

Hello – I do know some Graves’ patients who have gone completely gluten-free and swear by the results. Personally, I tried it for several months and found it much too high maintenance for my liking. Right now, I limit my wheat consumption to 3-4 times per week, which seems to agree with my digestive system moreso than consuming gluten at every meal…which I was doing before.

If you want to go 100% gluten free, you will find that there is gluten in a ton of foods other than the obvious bread and pasta…so you will definitely need extra time at the grocery store to read labels.

Good resources for a gluten-free diet are the magazine "Living Without", which you can find online or in stores like Whole Foods…and the blog "Gluten Free Girl" by Shauna James Ahern.

Best of luck!

[Kimberly]

in reply to: double dose of Tapazle by mistake… #1070788

Anti-thyroid drugs have a pretty short life span in our bloodstream…so you should be OK. A double dose could certainly make you feel run down for a day, though.

A pill box with compartments for days of the week might be helpful…I am actually thinking of getting one myself. ” title=”Very Happy” />

[Kimberly]

in reply to: Weight gain during Graves disease #1070987

Mirandarose3 wrote: The thought of gaining more weight after my surgery is discouraging. But like I said, you all have helped my focus on what my true goal should be, and help motivate me to keep trying. Thanks!!!!!

Yep, your first priority is to take care of yourself and get your thyroid levels stabilized.

It *is* good to pay attention to weight, though, as excess weight can increase our risk for heart disease, diabetes, stroke, and certain types of cancers. I shaved 100+ points off my cholesterol about 5 years ago by dropping 25 pounds. Also, my blood glucose is consistently in the "high normal" range, and I have two family members who have had severe complications from diabetes. My GP has told me that it’s really critical that I stay at a healthy weight if I don’t want to follow the family tradition.

I really wish that our Endos would take a more active role in helping us manage our weight while we are dealing with Graves. In the meantime, it’s up to us to take charge of our own health. As Ski said, though, the best strategy is to make lifestyle changes that you can live with, rather than following one particular "diet" for a limited period of time.

Good luck!

[Kimberly]

in reply to: Newly Diagnosed W/Graves & Endo. Visit #1070889

jojoransom wrote: My question is if I choose antithyriod meds – will I be monitored by my Dr. and how often will I have to see him? I really can’t afford too many office visits and how much will the meds be? The reason I would prefer anto thyroid meds is that I am a Personal Trainer and don’t want to gain alot of weight- won’t look good for my clients. The Dr. keeps saying "you won’t gain , just go back to the normal you were before"

Hello – I can sympathize, as I lead one meeting a week for Weight Watchers in addition to my "day job." At one point, I was about 8 pounds above my goal weight, which was very frustrating and embarrassing. However, I was honest with people about the extra weight and the fact that I was busting my tail to get it off.

I had to cut my daily POINTS target waaaaaay back to reach my goal weight again. (Which happened a couple of weeks ago – Woo Hoo!) Then I added 2 POINTS a day back to my food plan, since I wanted to maintain, not continue losing…and I packed on about 1.4 pounds the following week. D’OH! Soooooo, what I am discovering is that at least for me, there IS no "normal you were before". It’s a NEW "normal". Is it *possible* to lose or maintain? Yes, absolutely…but in my case, I find that it takes a whole lot more work than it did before.

As for your question on the endo visits, I’m sure that varies by state and by insurance carrier. As a benchmark, my visits are about $160 per visit, which discounted to about $90 on my insurance plan. Early on, I was getting labs and going to the endo every month (to check my thyroid levels, as well as my liver function and white blood cell count), plus one extra visit at a 2-week interval because my levels were falling FAST and I felt miserable. Then for about a year, I went every 3 months. My levels were stable at my last visit, so they said I could stretch it to 4 months before my next appointment.

Hope this helps!

[Kimberly]

in reply to: Newly Diagnosed W/Graves & Endo. Visit #1070885

Hello,

In my earlier post, I did not want to judge without knowing the situation, but I would definitely (1) find a new endo ASAP or at least a GP who will be willing to work with you and (2) file a complaint against the endo who refused to look at your blood work and told you there were no treatment options for Graves.

The best judge of your thyroid levels is Free T3 and Free T4, which you did not list. However, high TSI and low TSH are generally indicative of hypERthyroidism. Most labs say that TSI of <125% is "normal", but this is misleading. "Normal" people have a TSI that is barely detectable. The "normal" marker means that you generally don’t start to see symptoms of hypERthyroidism until the TSI level is more than 125%.

The levo is for patients who are HypOthyroid…so it could actually be aggravating your symptoms!

Please fine someone to test your Free T3 and Free T4 and work with you on an appropriate treatment plan if these levels are out of range. Don’t be afraid to throw an absolute fit to make sure you get the medical care that you need. Sadly, sometimes that’s what we have to do.

Best of luck!

[Kimberly]

in reply to: Newly Diagnosed W/Graves & Endo. Visit #1070879

Hello – It’s difficult to give you any direction without knowing where your labs are, but your doctor’s advice does sound odd. Here are a few scenarios:

If you have Graves’ antibodies, but your thyroid levels are normal, this is sometimes referred to as "euthyroid Graves’ disease". Most doctors will take a "wait and see" approach to euthyroid Graves Disease; however, you will want to be on the lookout for symptoms that you are going hyperthyroid (tremors, sweating, insomnia, weight loss, high heart rate, etc.) or that you are having eye complications (bulging, double vision, dry or gritty sensation in eyes, etc.)

If you have Graves’ antibodies, but your thyroid levels are below normal or hypothyroid (high TSH and low T3/T4 on your labs), you will need a prescription to bring your thyroid levels back up to normal. Levo is one of the drugs used to treat hypothyroidism. However, patients DO usually get regular labs early on to make sure they are on the right dose. Also, most patients are instructed to take the pill consistently every day at a certain time, rather than only when they are having symptoms.

If you are hyperthyroid (low TSH and high T3/T4 on your labs) there ARE treatment options, and you DO need to be treated. Untreated hyperthyroidism can lead to a host of complications including loss of bone/muscle mass, heart issues, and thyroid storm, which can potentially be fatal without immediate medical treatment. The choices for getting hyperthyroidism under control are Anti-Thyroid Drugs (which block iodine from being converted into thyroid hormone) and Radioactive Iodine or Thyroidectomy (which removes or destroys the thyroid gland to stop production of thyroid hormone). All 3 options have pros and cons, so patients need do a lot of research and select the option that they are most comfortable with.

Hope this helps!
Kimberly

[Kimberly]

in reply to: Weight gain during Graves disease #1070981

Hello,

If you use the search function on this web site and type in "weight", you can see that a lot of Graves patients are struggling with the same issue.

I am a Lifetime member of Weight Watchers and I had my first "at goal" weigh-in this week in almost a year. (Yeah, FINALLY!) My levels are stable, so I have been working on re-building my lean muscle mass. I also had to drop my POINTS well below where they used to be.

While I can’t cite any scientific evidence to back this up, I personally believe that once our thyroids go out of whack, our metabolism is never quite the same again. It definitely is still possible to lose weight…but the degree of difficulty seems to go up.

Best of luck!

[Kimberly]

in reply to: radioactive iodine treatment #1070963

Just a thought, but if the PTU was working, have you spoken to her doctor about Methimazole, which is another anti-thyroid drug? While you still have to carefully monitor liver function with Methimazole, I believe it was only PTU that is no longer being recommended for treatment in children.

The important thing is for your daughter and you to be comfortable with your choice. All of the treatment options (antithyroid drugs, thyroidectomy, RAI) have their pros and cons.

Best of luck!

[Kimberly]

in reply to: What’s your input on conference speakers? #1071127

Nancy Patterson wrote:Here is what I see so far:

Complementary therapies (I may need some clarification) This usually means meditation, exercise, massage, yoga, etc.)

Yes, that is what I was thinking…also there are certain herbal supplements that some people claim can treat hyperthyroidism. Although these results have not been supported with large-scale research, it would be interesting to know what these herbs can/can’t do for Graves.

Nancy Patterson wrote:Stress (Management, and/or what is it actually?)

All of the above, but mostly management. ” title=”Very Happy” />

Nancy Patterson wrote:Coping skills (where did they go, and how can I find them again?) Send NY address, please

Just sent you a PM…if it doesn’t come through, let me know.

Thanks!
Kimberly

[Kimberly]

in reply to: Help! #1071016

I don’t believe we are allowed to post links, but try an internet search for "low iodine" and "thyroid cancer".

Thyroid cancer survivors use a low-iodine diet prior to getting periodic scans, so there is a cancer support group that offers low-iodine tips as well as a free cookbook in PDF format that you can download.

I have actually heard different stories as to whether the low-iodine diet is necessary prior to a scan, but my endo had me follow one for 2 weeks. The free cookbook was a huge help…I also bought an additional one from Amazon that I found by searching for "low iodine".

Best of luck!
Kimberly

[Kimberly]

in reply to: Hello Out There…What Kind of Diet is Healthy for GD? #1071078

I haven’t heard of a diet specifically for Graves, but here are a few thoughts:

Eliminate or limit iodized salt while hyper…your body will use the the iodine to make MORE thyroid hormone…which you don’t need right now!

Also limit kelp (i.e. sushi rolls), as it is extremely high in iodine. I would say "eliminate", but personally, I’ve just *gotta* have a sushi fix every couple of weeks. ” title=”Very Happy” />

Consider adding goitrogens to your diet, which can block the production of thyroid hormone: broccoli, carrots, cauliflower, soy. (I’m sure there are others, but I can’t remember them all).

Limit/eliminate stimulants such as caffeine…even certain daytime cold meds.

Minimize the use of processed foods and focus on whole foods. I read the label on everything I buy now, and if I can’t pronounce one or more of the ingredients, it (usually) goes back on the shelf. ” title=”Smile” />

I have heard some patients completely eliminate gluten from their diet (wheat, rye, barley), but that was waaaay too high maintenance for me. However, I find that my stomach is happier if I somewhat limit dairy, wheat, and eggs.

Good luck!
Kimberly

[Kimberly]

in reply to: I need some advice please. #1071088

Hello – I see an Endo, but only because my GP referred me to one when my labs showed that I was hyperthyroid.

I assume that the levels that you mentioned were for TSH…is your doctor also testing Free T3 and Free T4? Since these tests measure the actual level of available thyroid hormone in your body, they are actually better benchmarks for making dosing changes. Many doctors (including endos) determine dosing solely off of TSH…but TSH can remain supressed long after FT3 and FT4 have fallen into a "normal" range.

Best of luck!

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