[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!

[Kimberly]

in reply to: GDF Conference Info #1072229

Update: Just got my room booked through the link on the home page. Kudos to whoever snagged the conference room rate: $150 vs. $450 per night. Score! ” title=”Very Happy” />

[Kimberly]

in reply to: And so it begins… #1071551

Blessed wrote: Kimberly, did you have RAI? Or are your trying for a remission?

Hi Leah,

Right now, I am trying for remission with ATDs. After 18 months, I’m now taking 5 mg of MMI per day, and my Free T3 and Free T4 are right in the middle of the "normal" range, although my TSH is still suppressed.

My plan is to stay the course with the ATDs, unless I am forced to discontinue at some point in the future due to liver or WBC issues. I get this checked every 3 months to make sure everything is OK.

My energy is pretty good, although I don’t feel I’m 100%. I take a tennis lesson for an hour once a week and do pretty well with that, although I tried to play 90 minutes of singles a few weeks ago, which was a HUGE mistake! I wanted to crawl in bed and sleep for a week.
While I know I might have to think about RAI or Thyroidectomy at some point, I guess my motto for now is, "if it ain’t (too horribly) broke, don’t fix it." ” title=”Wink” />

[Kimberly]

in reply to: And so it begins… #1071548

Blessed wrote: He told me that if I had high blood pressure, he’d want to cure it not just treat it, same goes with my thyroid. He made me feel comfortable about the RAI but still not sure if that’s what I want to do.

Hi Blessed – I would echo those who have suggested that you start back on ATDs at least temporarily while you make your decision.

Also, to clarify, RAI will "cure" your hyperthyroidism, but *not* your autoimmunity issues. Having RAI doesn’t make the disease itself go away…you will still need to be on the lookout for potential eye complications due to Graves.

Best of luck…I know you are probably suffering from information overload right now!

[Kimberly]

in reply to: Problems with keeping food inside me #1071614

Hello,

As others have said, this should subside once your thyroid levels are under control.

If it does not, you might consider a food allergy — specific foods could be upsetting your system. There are companies that do blood testing for food allergies, although it’s expensive and not 100% accurate. I’ve used Immunolabs and Meridian Valley in the past. I’ve found that my digestive system is a lot happier if I don’t overload on gluten, dairy, and eggs. (I tried eliminating them completely for a while, but that was WAY too high-maintenance. )

You can also try an elimination diet on your own. The Allergy Self-Help Cookbook by marjorie Hurt Jones has some good info if you are interested.

Best of luck!

[Author]

Posts