[mtbikrchick]

in reply to: Really Dry Eyes Starting Restasis #1064478

I’m a long time user of Restasis. I have been using it twice a day for at least 4 years now…maybe longer…time flies. I’ve had GD since 1993. I did RAI on March 1, 1994. I never had really severe eye symptoms other than some lid lag and sandy feelings. I started noticing pain in my eyes probably 6 or 7 years ago. For two years, I complained to several doctors and even saw an opthalmologist who has a lot of knowledge about GD, but was told repeatedly that I had seasonal allergies. I tried a couple of different allergy meds, but nothing seemed to help. So, I went to an allergist/immunologist who tested me for allergies. Lo and behold, I wasn’t allergic to anything, so I went to see another opthalmologist. He started down the allergy road again and I put the brakes on quick when I told him I had been recently tested by an allergist with no reactions. Viola! He started developing another theory and quickly settled on Graves Disease as the culprit. He did a the test where they put lithmus paper in your eye to see how much tear production you have. I had as close to zero as you can get without having ulcerations on the cornea!

At first I had to use OTC drops during the day between Restasis doses and I also used an ointment at night. It was slow progress, but I eventually noticed that I was having to use the OTC drops less and less then I finally was able to quit using the ointment at night. I have been using Restasis only for at least 3 years. I’ve heard many people talk about side effects and that it did not work for them, but I think I’ve had pretty good success with it. Regarding the side effects, one person I know developed night blindness and had to stop using it. Another lady had constant burning sensations in her eyes while using it. The only thing I’ve experienced is some short-lived burning sensations and some sensativity to really bright light right after I put it in my eyes. Those effects usually last 30 or 45 minutes tops. One tip that several docs have given me is to put your box of medicine in the refrigerator. It seems to help with the initial burning sensation. My eyes have now recovered enough that my opthalmologist told me that I can go see him every two years instead of annually. I have to consider that a success and I’m still not allergic to pollen etc. (thank goodness!).

Good luck!
Sheila

[mtbikrchick]

in reply to: The conference #1067686

I wanted to echo what everyone else has said about the conference. Although I was diagnosed with GD in 1993, this was my first conference and I’m already planning on going to the next one! I encourage others to go if you have the chance because it was very informative plus great to be among a group of folks that fully understood the trials and tribulations of this disease.

Many thanks to Nancy and Peter and the many others that put in the long hours of work to make it all happen! Also, I very much appreciated everyone making this conference newbie feel welcome and an especially loud shout-out to Dianne and Ken for everything! What can I say? You folks are special!!!

All the best,
Sheila H.

[mtbikrchick]

in reply to: Endo asked about Charlie Horses?? #1072304

This is just a guess, although charlie horses are more associated with hypo symptoms, I could conceivably understand how they could happen during hyperthyroidism too. I’ve had GD since 1993, so I don’t remember leg muscle cramps, but I do remember muscle atrophy. Cells are being built up and destroyed super fast when your hyperthyroid which usually leads to some muscle atrophy (or at least it did in me). I don’t know the exact connection to muscle cramps, but logically I could see the possibility…

Good luck!
Sheila

[mtbikrchick]

in reply to: Eye plugs????? #1073094

I had punctal plugs put in my lower lid tear ducts at least three years ago (maybe longer). The ones the doc used were not the dissolving kind and were sort of fitted to my ducts. Apparently they came in different sizes and the ophthalmologist made a guess at the size of my ducts. The plugs felt really weird at first. The best I can describe it is itchy and scratchy. The right side one fell out in a week or two. I went back to the ophthal. and they put another larger size in the right side. After about it week, it fell out again, so back to the ophthal. I went. The entire time, the left side plug stayed in but because it didn’t really make much improvement in my dry eyes, we decided to not try to put another plug in or cauterize the right side duct permanently. We hoped that prescription eye drops would do the job. The drops worked (thankfully) and I still use them twice a day. One crazy note though, the left side punctal plug is *still* hanging tight in there! I don’t even think about it now unless I rub my eye a little and feel it.

Good luck!
Sheila

[mtbikrchick]

in reply to: Autoimmune Disorders #1073358

Regarding your question about seeing a rheumatologist instead of an Endo to be treated for Graves Disease…based on what I was told by a rheumatologist this week, an endocrinologist is the better way to go for Graves. The rheum doc I saw could not answer very specific questions about Graves disease and stated that thyroid disease was not his area of expertise, although he knew a significant amount about many other autoimmune diseases (e.g., lupus, rheumatoid arthritis, MCTD, etc.). I have no idea whether the occasional rheumatologist might know some about Graves if said doc was interested in that particular autoimmune disease though…

Hope this helps…good luck!
Sheila

[mtbikrchick]

in reply to: Thyroid pain anyone? #1073411

I have to agree with Dianne, call your doc and see if there is anything you can do about the pain. I had radioactive iodine on March 1, 1994. Over the 15 years since, I occasionally have experienced a throbbing/achy pain from my thyroid off and on with no obvious pattern. I have never been able to explain this. It usually lasts two or three days then disappears. Although, about 4 or 5 years ago, the pain remained for several weeks. Palpating the area made me totally nauseated. I finally went to my doctor and inquired about possible thyroiditis. My doctor’s exam of the area made me *really* want to throw up. Doc was at a loss to explain it. He did some research and decided it wasn’t thyroiditis, but he never did have a real explanation. After about a month, it went away. Also, since doing RAI, I have real difficulty with anything touching my neck. While it doesn’t hurt, the area just seems to be super sensitive to just about everything. Again, there has never been a real explanation for this sensation either.

I personally believe that the RAI did not kill all of my thyroid tissue and I still have Graves antibodies attacking whatever remaining thyroid tissue exists. So, the occasional pain or ache is either from the antibody attack or from the remaining tissue continuing to die off. But, that is just my theory. I have nothing that backs it up.

Good luck!
Sheila

[mtbikrchick]

in reply to: Autoimmune Disorders #1073350

I have Graves (diagnosed Aug 1993) and Autoimmune Atrophic Metaplastic Gastritis (diagnosed Oct 2008). I’m hoping that two is my limit.

Sheila

[mtbikrchick]

in reply to: Post-RAI Gastroparesis, Anyone? #1073544

I was tested for gastroparesis a couple of months ago, but my final diagnosis is autoimmune atrophic gastritis. I’ve been researching through many medical textbooks and quality websites (NIH, Mayo etc.) and have read one single sentence a couple of places that alludes to the possibility that RAI treatment may increase a predisposition to atrophic gastritis which can eventually lead to hypochlorhydra (not enough stomach acid production) and pernicious anemia (inability to absorb B-12 in the intestines). I have to assume that your gastroenterologist has tested you for this stuff too?

I’m in no way saying that RAI treatment contributes to any of these other issues, because I have been unable to locate any research on the subject and my gastroenterologist had no idea how to even approach an answer when I asked the question. Apparently autoimmune atrophic gastritis is pretty rare. Most of the doctors I’ve seen have confessed that they had to look it up, but my blood test results confirm the diagnosis due to those ol’ immune system buddies….antibodies. Although my gastroparesis test was normal, I still feel like it takes a long time to digest stuff now. I’m just at the beginning of the road for this particular autoimmune disease though, so I’m still stumbling along towards understanding. I hope you find some answers or treatments that get your digestion back to something more normal!

Good luck!
Sheila

[mtbikrchick]

in reply to: Graves and Stomach Issues? #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

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