[Stellatum]

Of course I don't know. This is mere speculation. I just offer it for comments in case anyone's interested.

I came down with Graves' Disease 15 years ago after the very complicated birth of my daughter. Graves' runs in my family, and I know that physical stress can set it off, as well as childbirth, which makes the body produce many antibodies to prevent infection.

I did not radiate my thyroid, because I was having babies and nursing them. Instead, I took a thyroid suppressant (propylthiouracil), which sent me into several remissions, each one lasting longer. I had been in remission for about five years (my endo says I was due for a relapse) when I decided to lose weight. I lost 50 pounds in a year. I thought I was being prudent--I stuck to 1500 calories per day, avoided sugar and refined grains, ate lots of vegetables, and limited fat.

I also slowly and gradually started exercising, on an eliptical machine. I worked my way up very gradually to about 20 minutes a day.

All of this sounds very healthy and prudent, but I think it set my thyroid off again. I got a big surge of Graves' antibodies last summer. Then in the fall, my MG symptoms popped up. I speculate that the Graves' set off the MG.

Could I have avoided it? If I had destroyed my thyroid 15 years ago, would this have happened? Did I stress my body by losing weight and exercising?

Of course I don't really know. I don't think I did anything foolish. Obesity has its own dangers. Certainly it would have also been risky, in other ways, to stay out of shape. So this isn't about regrets. I'm just really interested in how all of this works, and trying to put together a coherent picture in my mind.

[Twinkletoes]

Its impossible to know what our body is "thinking", or we could do things differently.

I'm certain that stress brought my MS symptoms to the point where they could not be ignored. I had lost 40 lbs. the previous year by adopting healthy habits, and I was doing alright until experiencing several weeks of stress. Ugh.

Sorry for your MG. Thanks for posting about it -- I hadn't really known much about it until reading your post and then looking it up on the internet. Weird disease!

[AnnieB3]

Abby, It's so hard to say. There are people who are overweight for a long time and never get an autoimmune disease. People who have fluctuations in hormones who never do either. I tend to think it comes down to basic genetics, with a tendency to have a certain set of diseases. Then a trigger, like surgery, or surge in hormones, comes along and then you get a disease.

Could've been that drug. Could've been aging. There are so many things that screw up the immune system. Since I had mine since birth, I have no idea what I was up to in the womb to get it!

I'm not certain that destroying the thyroid gland is the optimum solution to Graves either (my opinion). So it's hard to second guess that decision of yours because there aren't a lot of studies on the pros and cons.

That's actually very perceptive of you, thinking losing weight might stress the body. If you lose too much "fat" too quickly, it can actually clog up the circulatory system. Any dramatic change in the body can stress it out. That stupid B12 deficiency I had in 1997-99 had a huge impact on my body.

I think the most important thing is to keep a balanced life now so that you don't have even more diseases down the road. Can you imagine? I don't want to. I try to keep my immune system as happy as possible. At least we have control over how we treat ourselves, and others, which might be the best medicine.

Annie

Cute pic and signature, Rochelle!

[cricket001]

Stellatum.
OMG! Your post sounds like my situation...and I am so glad to read your story!!!..I am in tears as I write this.....I have been struggling to because I swear somehow that my unresolved thyroid issues has somehow caused this...

In 2006, about 3 months into my pregnancy (third baby--my sweet baby girl) my heart rate when up into the 150's, I was sweating like crazy, hot flashes, hyper, and a bit maniac...thyroid levels were checked and I was diagnosed with moderate to severe hyperthyroidism. I, like you, did not want to eliminate my thyroid because I was a breastfeeding mom, etc...I also chose to take PTU. After about 8 months after her birth, it magically resolved into a mild case of hyperthyroidism. Endocrine doc encouraged me to get off the medication and just watch my levels...we watched them until late 2007...levels were looking good...off medication and was told that I was in remission from Graves Disease....but my thyroid antibodies are very high. (My endocrine doctor only looked at my TSH, T3, T4 levels, etc...and in the past, never ever mentioned my thyroid antibodies...)...


Anyway,...after a very stressful divorce (hubby left me for a friend) in late 2007...I start to notice that I am having blurred vision, eyes acting funny--seems like I am having to hold my eyebrows up more, headaches, wobby gait, and slurred speech....numb hands that just won't act right after I work all day...especially after typing on computer or needlepointing....A physician saw me one day at work and pulled me aside asking me if I was okay...she sent me for a MRI and arranged for me to see an adult neurologist that next day...he diagnosed me with MG right away...even though all my tests came back negative...CT scan even showed normal thymus...I was in denial especially since all tests were negative, I was chalking it all up to "stress"...so I also did the losing weight game...got a little better...than boom beginning of 2009...My symptoms got worse and I was starting to "fall" too....By this time, I just got married again to a awesome, very understanding, concerned hubby....but I didn't know what to do...I went back to my neurologist explained that I was in denial but that I really needed his help again to get me straightened out...he put me back on the mestinon..and IVIG every 8 weeks. I was getting worse and worse....so I snuck out in 7/2009..and got a second opinion in Baltimore....and the neurologist there was awesome too and she identified me right away as also having MG even though test results were negative....she changed up my mestinon, had me do IVIG every 4 weeks, added cellcept,....told me to follow her advice in order to get my body under better control from the MG. (I also went back to my endocrine doc during this time and he told me that he did not need to follow me anymore because my Graves was in remission)...My neuro back home has been great to allow her(baltimore doc) to call the shots...he just lets me do whatever she says...(he really does not have many patients with MG...and the ones that he has are older than 65..he was also not encouraging in the beginning of me having a thymectomy--he said "it was a painful surgery that would cause a terrible scar...for no reason because it was not going to help anyway"...but he even admits that he is learning from my experiences...)...so, anyway..I have been following the doc in Baltimore's advice....and I have just had the thymectomy....I am a little scared...I know that I am just shy of being 2 weeks post op....but my symptoms feel worse instead of better....the Baltimore docs told me that it would probably be 6-9 months before I go into remission...and that I would need to continue all my current treatments...but I was secretly praying for instant miracle, I guess....

Sorry for the LONG story....but I have been wondering over and over... if there is a correlation between " my graves disease remission" and My "MG". Did I have MG all along...or did the remission of graves and life stress cause it..... I am completely out of denial now...especially with experiencing a scary MG crisis during my thymectomy...I know that I have MG...even with the MG tests that they tested me for are all negative....I know that with all my heart--we ( 2 docs and me) have the right diagnosis.... I just wish I knew what lies ahead for me...if indeed my high thyroid antibodies are causing this...I wonder do all antibodies that they test for and those that they do not test for......cause the same harm in MG patients...should I also ask someone if I also need have my thyroid removed to increase my chance of remission...but all of my thyroid levels are within normal limits now...just my thyroid antibodies are extremely high...

I am just so happy to hear that someone might be in my same boat....I am a yo-yo dieter myself...I lose the same 30-40 pounds about every 2 years...I am on the losing side of the weight at this point in time...and going to do my best to keep it off!!

MG is a very interesting disease....and so frustrating too!!!

[Stellatum]

I'm in way over my head here. My understanding is that the PTU doesn't do anything about the antibodies; it simply shuts down the over-producing thryoid gland by not allowing it to absorb the iodine it needs to function. So when we're in Graves' remission, doesn't it just mean we're not producing too much thyroid hormone? And that the antibodies are still there? I don't know.

And what about the people who do have their thyroid glands destroyed by radiation: does that somehow stop their immune systems from producing the antibodies?

I'm not knowledgeable enough to say, and just barely smart enough to realize I shouldn't make any assumptions!

Abby

[cricket001]

Abby,
I know...I am way over my head too....I keep coming up with more and more questions...and no real answers....just speculations too! I was never even aware of my having high thyroid antibodies until recently with all of my MG diagnosis...Endocrine doc never mentioned these back in the day...and my family doc justs says..."wow...I wonder if we will ever get this number down?"....I will talk to my neuro doc soon for followup and I will ask her if she can shed some more light on this subject...in the past...the only answers that I can find...is that yes, MG and Graves Disease have been linked...just not quite sure of the relationship.

[Stellatum]

As long as I'm speculating wildly, I just remembered that my first MG symptoms hit me when my five youngest kids all had the swine flu at the same time. I never got it, but I was exhausted taking care of them. Maybe my immune system's response to the virus set off my MG, and it had nothing to do with my thyroid.

Anyway, I just read something I hadn't known: that the Graves' antibodies attack the receptor cells in the thyroid that bind to the thyroid stimulating hormone. Sound familiar?

Abby

[allen L]

Im 100% convinced, my mg was the direct result of stress.
Had shingles in sept of 2007, ended up in emergency room in march of 2008 with diverticulitis, and diagnosed with MG in march of 2009........and Im certain the stress I couldnt get rid of in my life destroyed my health in all three cases. No proof, but all three diseases came right in a row, in the most stressful time of my life, and all three seem to flourish with stress.

[neutro]

In my case, I'm balancing between stress and effort.
Beginning of May 2007, we (my wife and I) were heading to a long awaited Mediterranean cruise and I remember having to put a lot of effort to store our 2 big suitcases in the train overhead compartment.
Two days later, while we were jogging, my wife slipped on the wet deck, fall on her bad knee (previously injured during skiing) and was sent to the ship infirmary. For a couple of hours, while in pain and stress for her condition and for the rest of the cruise, we waited for the X-ray results which finally came up OK...
Five days later, my first MG symptoms appeared...
Maurice.