[Kimberly]

in reply to: New to Methimazole #1070619

Hello – I have heard that many Graves patients already have elevated liver enzymes…it has something to do with our metabolic rate being out of whack. The reason they run a baseline test is to see if your levels get *worse* while taking the drug.

On the weight issue, yep, that’s definitly a challenge. I don’t know if it’s the Graves, the drugs, or what, but I find that if I get a little off track with my food plan, I put on weight about 5 times more quickly than I used to…and it’s 10 times harder to get rid of.

Your #1 priority for now is to get your thyroid levels in balance…but keeping a journal to track your food intake can be helpful in minimizing any weight gain. You will definitly have to eat less than you did when you were hyper…and you may even find that you have to eat less than you did BEFORE all this started to maintain a specific weight. (Like me ). Also, once your levels are stabilized (NOT while you are still hyper), doing some activity to re-build your lean muscle mass can help as well.

Best of luck!

[Kimberly]

in reply to: Good News/Bad News #1070629

lizlair wrote:Well, the good news is that I had an appointment with the eye specialist last Monday and it appears that my TED has finally entered the "cold" phase. The bad news is that I guess I no longer have any excuses to avoid RAI this summer. After two years on Methimazole with varying degrees of success, my endocrinologist would really like for me to take the next step.

Hello – It doesn’t sound like you are sold on RAI. For those who can maintain their thyroid levels on a lower dose of ATDs, many patients to continue to safely use these drugs past the traditional "2-year mark". If you personally are unhappy with your results from ATDs, then RAI or thyroidectomy are certainly other options…but unless there are complicating factors, the choice should be yours, not your endo’s.

Best of luck!

[Kimberly]

in reply to: Weight gain during Graves disease #1070998

ewmb – Sounds like you are on the right track…keep up the great work!

Brenda – Wow, no wonder you were exhausted! Are you getting your Free T3 and Free T4 tested now? I find that doctors who base dosing solely from TSH don’t reduce our ATD dose quickly enough, as TSH is a lagging indicator. This sends us plummeting towards (or into) hypo territory. While it’s more expensive to test the "Frees", they are MUCH better markers to determine proper dosing. Hopefully, you will start to see your energy rebound without the meds. Keep an eye out for hyper symptoms, though…some folks will see their levels creep up again when the meds are suddenly reduced.

Peggy – You didn’t mention if you were currently hyper or hypo. I *totally* understand about the weight frustrations, but either way, it’s critical that you get your thyroid levels regulated. If you are unhappy with your doctor’s advice, speak up, ask questions, and negotiate until you end up with a treatment plan that you believe in. Once your levels are under control, the weight loss should be at least a little easier.

Michelle – Since you have given yourself a year or so before pursuing the medically assisted weight loss again, you might consider some additional research on whether that is the right approach for you at this point in your life. A few questions I would research (or ask the doctor’s office) are:

1. Graves is not just a thyroid disorder, but an autoimmune disease. We are genetically predisposed to getting an autoimmune disease, but some sort of "trigger" generally sets it off. The "trigger" can be a number of things, including physical injury, emotional stress, or something in the environment. Has the medically assisted weight loss program been used on anyone else with an autoimmune condition? Some of us can speculate on what our "trigger" was, but others will never know for sure. My personal approach is to err on the safe side and try not to bring any extra chemicals into my system (food, meds, etc.) unless it’s absolutely necessary.

2. Does the program assist with habits and emotional/behavioral issues surrounding food? I know people who have had "quick fixes" with a number of different weight loss programs, but if we return to old habits, the weight tends to return as well.

3. Does the program have a maintenance plan to help you switch from "losing" mode to "maintenance" mode — and figure out approximately how much food or how many calories you will need to maintain your weight?

You are 100% correct in focusing first on getting your thyroid levels stabilized…these are just a few more things to think about with everything else on your plate. ” title=”Razz” />

I had another "at goal" weigh in at my Weight Watchers meeting this week. YAY! However, I am heading to Europe soon for a 3 week vacation…so I’m sure I will be fighting the battle again as soon as I get back. I find that I put on weight MUCH quicker now…and I plan to indulge in some gelato, tiramisu, pasta, fish & chips, sachertorte, and strawberries & cream. My goal is to try a little of everything, but NOT eat until I am stuffed…otherwise, I know I will pay dearly when I get back home. ” title=”Very Happy” />

[Kimberly]

in reply to: Help me sleep PLEASE!! #1070654

Great advice so far…one thing I would add is to NOT look at the clock. I find that when I do that, it gets my mind racing even faster. (GAAAA! I have to get up and go to work in 4 hours!!!!! )

[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!

[Author]

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