[mtbikrchick]

#1019901

I’m looking for anyone who has chronic stomach problems with Graves, especially if you did RAI as a treatment. I’ve had Graves since 1993 at the age of 25 and did RAI on March 1, 1994. I’ve been in an over-the-top stressful job situation for about the past three years. In early 2005, I had what was thought to be an episode of peptic ulcers that resolved with meds (PPIs). I had no other significant issues until mid-September 2008 when I started experiencing excruciating burning, nausea, abdominal pain, and zero appetite among other things. After a very aggressive treatment with multiple meds for what my new primary doc thought was another ulcer episode, my symptoms escalated again. After an endoscopy, multiple blood tests, and a nuclear med scan, I’m expecting to get my final diagnosis (I’ve already talked to my superb primary doc) from a gastroenterologist on Monday of autoimmune metaplastic atrophic gastritis. Lucky me! I now have a second autoimmune disease that is apparently more rare than Graves! If anyone out there has experienced anything similar, I would appreciate hearing about your experiences. I’m at least feeling mostly better, but have to be extremely careful about what I eat and pretty much have been doing that on a trial and error basis. Apparently my odds of getting pernicious anemia (B12 deficiency) and/or stomach cancer just increased significantly too with an autoimmune gastritis diagnosis. If anyone has been diagnosed with PA, I’d very, very much appreciate anything you can share about your diagnosis and dealing with that disease. Are there any key early signs that I should look for that will tip me off to get to the doc PDQ to have a blood test for anemia?

Thanks!
Sheila

[elf]

#1074894

Just wanted to give you a ((((hug)))). I’m reading about the conditions you mentioned, I didn’t know about them. What stress does to us.

[kallikat]

#1074895

I had RAI in Sept 2007, and it seems my thyroid has woken up. My dr is slowly bringing me off synthroid and I’ve had diareah since early November. My TSH was .093 two weeks ago, and I’m down to 50mcg of synthroid. In 2 weeks I go in for a full blood workup. I never had the stomach problems before so we’re baffled as to why I have them now. I don’t have the ulcer symptoms you’re talking about, though. I thought this problem was part of GD and the low TSH level, but my Dr isn’t so sure.
Hopefully my tests will show what it is and I’ll be ok. She also says it may be possible that I can stop taking synthroid – although I may go hypo again one day so we’ll have to watch it. I can’t imagine being pill-free again. Is it normal for this to happen? Is the stomach problem normal?

[elf]

#1074896

kallikat – I had RAI in Dec. 2005, and the thyroid was gone 5 months later (I went hypo). No, my thyroid didn’t wake up ever again.

[Ski]

#1074897

I’ve been on this board since early 1998, and I have not heard anyone bring up escalating stomach issues following RAI. Sometimes they talk about being a little nauseous in the first couple of weeks, but not anything like you describe. The fact that you have been diagnosed with another autoimmune disease is telling, however ~ we are slightly more likely to acquire a second autoimmune disease, once we have one. No one has good information on why we get the particular autoimmune diseases we end up with ~ the theory is that we have certain "weak points" in our body (for whatever reason), so the autoimmune diseases are more likely to target those weak points.

Sounds miserable, I really hope there is an effective treatment for your new condition!

[nancym]

#1074898

I had a very similar experience. I was diagnosed with Graves 23+ years ago. Had RAI twice, the most recent 1-1/2 years ago. For some unknown reason, I am an unusual case and my thyroid has regenerated again. I will be having a thyroidectomy in January. I also developed eye disease related to the Graves which is annoying. But this past October, I began having difficulty with my stomach. It escalated until I was literally writhing in pain over the entire right side of my abdomen and back, the entire torso. After many tests, one doctor believes it’s Crohn’s, one thinks it’s not and I’ll be going for a 3rd opinion soon. I am very interested to read more about your diagnosis and whether that may be something I’ve been dealing with.

[Kimberly]

#1074899

Graves patients with stomach issues might consider talking to their physicians about Celiac disease, which is an autoimmune conditions that affects the intestinal lining.

For those who have had stomach issues but have been unable to get a medical diagnosis, another option to consider is food allergies/sensitivities. A naturopath (and some regular physicians) can do blood tests to detect allergies and sensitivities.

The tests are expensive (and not always accurate), but you can also try an elimination diet on your own — check to see if you can get relief by getting rid of common triggers such as wheat, egg, dairy, or nuts.

[mammaw]

#1074900

Sheila,

The most important thing I have to say to you is "It’s not in your head!" No matter what the doctor’s or your family and friends think.

I am also one of the "lucky" ones to have more than one autoimmune disease. When they can’t find a definitive answer with test results it becomes "psychological" to the doctors. The latest GP told me it is in my head after I had an episode with my heart and offered me an antidepressant, AFTER he had told me to up my Toprol for A-fib. Most GP’s just don’t have the answers. My Rheumatologist, who is the only one that believes anything is wrong with me, has treated me for RA from what she could see, not from test results. She did have to take me off NSAID’s because it was causing so much stomach upset. So, I don’t take anything for pain now. I’m not about to take the narcotics prescribed. I’m not going there.

I don’t like to be a downer, but I am a realist. It’s the only way to live with multiple autoimmune diseases. You truly have to live one moment at a time. My neighbor was just diagnosed with "schlederma", which is a bad one. I feel blessed with my problems.

Let God be your comforter,

Mammaw

[Diane94]

#1074901

I’m sorry to hear about the added issue. I’ve lived with stomach issues most of my life. When I was little they thought I was allergic to milk and eventually out grew that but when I was about 7 or 8 I was diagnosed with colitis and have had to watch what I eat pretty much my whole live, then a few years back I had to have my gallbladder removed and that’s just made things even more touchy. I’ve grown up with severe stomach cramping, the nausea, and the diarehha, and just the plain uncomfortable feeling that comes with stomach issues and it’s not a picnic. So when I was diagnosed with graves it seemed to be just one more thing that I’ve got to deal with. I just started on Tapazole about 3 weeks ago so I’m new to this but I can totally realate to the stomach issues. Good luck with everything.

[mtbikrchick]

#1074902

Thanks for everyone’s input! I really appreciate your willingness to share your experiences. I’ve been hanging around this board since late 1996 although I’ve been more off of it in the past several years dealing with my job and not wanting to do anything that required a computer in the evenings. I am very grateful for the dedication of the folks that have kept this up and running though. It has always been very helpful and I’m glad it’s still here when I have questions.

Anyway, I went to the gastroenterologist (GE) last Monday to see what she thought of the results of the last blood tests. My primary care physician had already told me that one was abnormal, but he didn’t know where to go from there. Although with his admitted limited knowledge on the subject, my PCP was pretty sure that the diagnosis had to be autoimmune atrophic gastritis. Well, during the Monday appointment, the GE never said autoimmune gastritis but jumped directly to a "very early case of pernicious anemia (PA)." So, she ordered a bunch more blood tests to check various other antibody and stomach acid/enzyme levels to verify. Now the question is whether I’m actually still able to absorb B-12 or if my liver is busy emptying itself of B-12, which apparently can take several years sometimes. The answer to this question will decide if I have to start taking B-12 shots on a regular basis to make up for an imminent B-12 deficiency.

I don’t blame a PA diagnosis on Graves or radioactive iodine. I’ve just read a couple of places that PA is more common in Graves patients who had radioactive iodine as a treatment. Unfortunately, there was no additional information in both of the places I read it that would suggest why or if the RAI was thought to have anything at all to do with the atrophic gastritis. I would have liked to know more as to why the authors of the information made the statement, but I suspect that there would be a whole lot more cases of PA popping up if RAI had any kind of impact on it…but that’s just my opinion.

I’ve been very vigilant since my Graves diagnosis to listen to what my body is telling me in case another autoimmune disease decided to pop up, since having one increases a person’s likelihood of developing another. This stomach problem was anything but quiet! This has baffled my PCP and GE though, because PA is an insidiously quiet disease that typically causes no acute symptoms until it has progressed to the B-12 deficiency stage and then causes various neurological issues. As a result, my docs have tested me, through blood and biopsy, since late September for H. pylori bacteria, stomach cancer, B-12 deficiency, folate deficiency, liver function, pancreas function, celiac (sprue) disease, intrinsic factor antibodies, parietal cell antibodies, homocystene levels, gastrin levels, and a few others I don’t remember. The only thing abnormal so far is the parietal cell antibodies which points a huge arrow straight at autoimmune atrophic gastritis and pernicious anemia. We’ve also talked about food allergies because my twin sister has several. I haven’t inherited the same issues with food though and she apparently didn’t get the same immune system problems I have or hopefully she didn’t, at least not yet.

I’m happy to report that my stomach is feeling much, much better but my GE is sending me for a gallbladder work-up just to make absolutely sure. If my gallbladder is fine, I guess she’ll chalk it up to the autoimmune problems and we’ll move forward from there. If it is indeed a super early stage of pernicious anemia, I’m massively thankful that it has been caught early before any significant neurological problems could develop all due simply to some really bad stomach symptoms.

I wish you all good health! Thanks again for your input and I’ll keep everyone posted if there is an interest.

Sheila

[TaraPetit]

#1074903

My only treatment for Grave’s has been tamazole. I definately have been having an upset, cranky stomach and heartburn, which I’ve never really suffered from before GD. I’ve found taking the med after a really big breakfast and increasing my fluid intake helps my stomach upset, although not the heartburn.

I have always been anemic, even before being diagnosed with GD, and low in vitamin D and B12

TP

[Author]

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