[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!

[Kimberly]

in reply to: New to this website #1071155

Hello – When we lose weight from hyperthyroidism, it’s often bone and muscle mass, which can cause a whole host of problems…so getting back to our “pre-hyper” weight is not necessarily a bad thing.

From personal experience, I know that gaining weight ABOVE AND BEYOND where we were when we started this journey is very frustrating. However, the priority for now needs to be getting your thyroid levels in check. There are many negative side effects from untreated hyperthyroidism…including thyroid storm, which can potentially be fatal.

Here are a couple of other things to consider, though:

1. How frequently are you having labs run? If you are early on in the process and still trying to get stabilized, hopefully it’s monthly…or perhaps even more frequently.

2. Do you receive copies of your labs at each visit? It’s important to check Free T3 and Free T4 levels, and not just TSH. Because TSH is a lagging indicator, it can remain suppressed long after FT3 and FT4 levels return to a normal range. Unfortunately, some doctors base dosing solely off of TSH, which can send patients into HYPO territory if the FT3 and FT4 aren’t monitored.

3. You might consider keeping a food journal, if you aren’t already. I am a lifetime member of Weight Watchers, so I count POINTS every day. However, for some reason, I still find that it has been a LOT harder to maintain my goal weight since I was diagnosed 18 months ago. I have waaaaaay more cravings these days for “comfort foods”, although I think the journal helps keep things at least somewhat in check.

Best wishes!

[Kimberly]

in reply to: What’s your input on conference speakers? #1071122

Here are a few…

Weight Control – Supposedly, only a “small” percentage of people gain weight while hyper, but it seems from this and other boards that there are a lot of us who are hyper or euthyroid and are still having issues. Our doctors seem to assume that it’s our eating habits that have changed…but I really believe there is more going on. On a related note, it would also be great to hear more about optimizing nutrition while dealing with autoimmune and thyroid disease.

Related to weight issues, but I would love to get nutrition/exercise suggestions that will help with re-building lean muscle mass once euthyroid status is achieved.

Complementary Medicine – Nice breakout session last year…I would like to hear more on this topic.

Stress/Coping Skills – I attended a seminar earlier this year that was sponsored by the American Autoimmune Related Diseases Association. One of the speakers was from Hicksville, NY — he gave a fabulous presentation on "Coping With An Autoimmune Disease". The information was excellent, but he put a humorous spin on the whole issue. I believe I still have his contact info if there is any interest.

ATD dosing, remission, and long-term use – It seems like many endos withdraw meds shortly after a euthyroid state is achieved with ATDs to “see” if remission will occur. Kind of like throwing spaghetti against the wall to see if it sticks. Many doctors and patients seem to be unaware of the importance of bringing antibody levels down before stopping drug therapy. I would be curious to hear from an endo who has successfully used “block and replace” therapy (combining ATDs with thyroid replacement) to reduce antibody levels. Finally, last year, there was an interesting exchange between a presenter and an attendee about long-term use of ATDs…I would be interested to hear more about both sides on this issue.

I’m sure I will think of more as soon as I hit “submit”.

[Kimberly]

in reply to: Hello! #1071145

Welcome – I’m glad you found us…and that you are finally getting appropriate treatment.

I attended a seminar on autoimmune diseases this year, and a study was done showing that it took women an average of 7 different doctors to properly diagnose an autoimmune condition – women complaining of symptoms were often dismissed as hypochondriacs. That’s really disgraceful.

Definitely stick around, ask questions, and learn all you can about your treatment options. It’s really important that we be our own advocates in managing this condition.

[Kimberly]

in reply to: Graves Disease and Dental issues #1071174

I don’t believe we are allowed to post links here, but if you google a combination of graves, hyperthyroid, dental, dentist, etc., you should come up with some good info.

[Kimberly]

in reply to: Graves Disease and Dental issues #1071171

I have read that periodontal disease can set in rapidly with patients who are hyperthyroid, so I have been really careful for the last couple of years to get my checkups/cleanings done at 6-month intervals.

[Kimberly]

in reply to: New to this website #1071149

brendacoble wrote: She did mention that if "this" has happened I might not be able to do the RAI and would probably have to have surgery but Idon’t remember what the "this" was, my terrible memory shut down on me right then. She also didn’t want to talk too much about which treatment to do until they have all my readings back.

Hello – I know this is an extremely frustruating process, but definitely ask questions and understand the pros & cons of all the options before making a final decision.

Some patients do have success keeping their thyroid levels in check through long-term use of Anti-Thyroid Drugs. So you might press a little further as to why your doctor doesn’t want you to do another round of Tapazole. If you have issues with liver function or white blood cell count, those would definitely be reasons to NOT continue on the ATDs…but other than that, it should be your choice as to which of the 3 treatment options you want to pursue.

Best of luck!

[Kimberly]

in reply to: quivering #1071287

ely2009 wrote:OK, I’ve been trying to pay attention to when it’s happening and I think it’s because I’ve been doing a little stregthening exercises. (Doc said I could) Apparently I was just overdoing it. I’ve been taking it a little easier and haven’t noticed it since.
Emily

I used to get the shakes *really* bad before I was diagnosed when I used to do an hour of weightlifting…but I always assumed it was too much stress or caffeine.

I am trying to work up slowly to doing some more strength training now that my levels are back in range. I still notice the shakes, but not nearly as bad as before. It would be interesting to know what causes it!

[Kimberly]

in reply to: anti-inflammatory diet? #1071209

elisebeary wrote:Hi,

For the diet, basically cutting out all processed foods, fried foods, any fatty animal products, sweeteners, etc…

EB

Yep, my GP also said to add lots of organic fruits and veggies.

[Kimberly]

in reply to: And so it begins… #1071558

Ski wrote:Even on meds, stress can have an effect on your levels.

Yep, I’m a good example of this. (Or bad example, depending on how you look at it).

My thyroid levels were normalized within about 3 months of starting ATDs. Then I went through a hugely stressful situation at work and went slightly hyper again for about 6 months.

I have really worked hard lately on how I respond to situations (and people) that would normally cause an immediate anger/stress reaction. I’ve also been doing weekly Reiki sessions, which is a Japanese energy healing practice. I feel that has really helped me get my head in the right place — and I now have a set of mid-range labs to show for it. ” title=”Very Happy” />

[Kimberly]

in reply to: depression and GD #1071501

ely2009 wrote:Kimberly – Interesting that you say you felt worse after your Dx during your first 10 weeks of treatment. That’s how I feel – although I did have some improvement after about week 3. Now it seems to be down hill again. It is frustrating to continue to take meds when you don’t feel progress.

Emily

Hi Emily – I was actually overdosed by an endo who was solely relying on TSH at the time I was diagnosed. I think I would have turned the corner a lot sooner in terms of feeling better if my dose had been reduced in accordance with my Free T4 and Free T3.

That’s why it’s so important for us to stay on top of our bloodwork and ask questions if the doctor’s advice doesn’t seem right. In fact, that’s probably a good excuse for "concerned mama" to sit in on her daughter’s doctor’s appointments.

It does get better. I wouldn’t say I’m 100%, but I did test yesterday for a Green Belt in Youn Wha Ryu (and passed). A year and a half ago, I was spending my Saturdays sleeping all day. ” title=”Smile” />

[Kimberly]

in reply to: depression and GD #1071498

Hello,

I don’t have kids, but I think the key is to get to the root cause of your daughter’s non-compliance. Others have mentioned simple forgetfulness and have suggested solutions.

Another option might be that your daughter isn’t compliant because she believes the treatment is making her feel WORSE. My Graves was caught at a fairly early stage about 18 months ago. My levels fell FAST once I started ATDs — and the worst that I’ve felt during this whole experience (even pre-diagnosis) was the first 10 weeks after I started the meds, while my levels were falling.

Maybe it would be helpful if you could have someone (doctor, another Graves patient, etc.) explain to your daughter (1) the serious consequences of remaining hyperthyroid and (2) that things eventually *will* get better.

Best of luck!

[Author]

Posts