[Ski]

#1073543

I don’t know anything about Gastroparesis, but I’ll start looking into it. It hasn’t come up here, that I know of, but we may both be surprised to see responses.

[dewdrops]

#1019704

I was diagnosed for GD in (2004) and Gastroparesis last year (2008). My Gastroparesis is pretty awful : even liquids take a long time to empty into my bowels.

My Gastroenterologist told me that it might be due to Hypothyroidism following my RAI treatment in 2006. But my thyroid blood levels normalized in late 2007.

In response, my Endocrinologist increased my thyroid replacement hormone (Synthroid, 125 mcg) until my thyroid bloodwork showed up on the upper normal range (January 2009). However, I still have Gastroparesis until now.

I am curious to know if anyone else here been diagnosed with Gastroparesis, how their experience was like, and if it went away.

Thank you.

[mtbikrchick]

#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

[Ski]

#1073545

It is slightly more likely for us to end up with a second autoimmune disease, once we’ve already got one, so perhaps that’s the connection with those two.

[dewdrops]

#1073546

Thank you very much for all your replies.

mtbikrchick wrote: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?

My tests turned out negative for hypochlorydia, and my stomach lining is normal. The doctors said there’s nothing "structurally" wrong with my GI tract. Thankfully, my stomach is responding to medication now, otherwise I won’t even be able to eat a thing. My endocrinologist did mention something similar to what you have, and he said it’s even rarer than gastroparesis. He also had to consult a book to look up my symptoms, and admitted that he hasn’t come by anyone else with my set of problems. We’re a bunch of overachievers, aren’t we? Anyway, I will continue to do more research on my condition. Good luck to both of us.

[Sherta]

#1073547

Hi,

Both, hypochlorhydra and pernicious anemia are common to Hashimoto’s Thyroiditis. Although you probably already know that once your thyroid has been ablated by RAI you become hypO where everything slows down — including digestion. Also, you may want to seriously consider eliminating gluten as gluten intolerance or Celiac disease is common for a HypO person. (That is, if you want to regain any significant quality of life back.) Gastroparesis can be a symptom of Gluten Intolerance. These problems are NOT unique. Surprised? My doctor never warned either I found out by researching. ALWAYS, again, "always" check out anything you are told. It may very well SAVE your life.

Good luck,
Sherta

[Ski]

#1073548

We do become hypothyroid after RAI, but once we are regulated on replacement thyroid hormone, we are again euthyroid.

[DianneW]

#1073549

Sherta wrote:Hi,

Both, hypochlorhydra and pernicious anemia are common to Hashimoto’s Thyroiditis. Although you probably already know that once your thyroid has been ablated by RAI you become hypO where everything slows down — including digestion. Also, you may want to seriously consider eliminating gluten as gluten intolerance or Celiac disease is common for a HypO person. (That is, if you want to regain any significant quality of life back.) Gastroparesis can be a symptom of Gluten Intolerance. These problems are NOT unique. Surprised? My doctor never warned either I found out by researching. ALWAYS, again, "always" check out anything you are told. It may very well SAVE your life.

While it may be true that Celiac disease (gluten intolerance) is associated with Hashimoto’s Thyroiditis, it’s not because of the hypothyroidism per se, but because of the immune dysfunction common to both conditions (and which also is higher with GD patients). Therefore, making a person hypothyroid by RAI would not create a higher risk, whether or not the patient was made euthyroid later. Perhaps this is the reason your doctor didn’t warn you of the risk. There’s an autoimmune connection, but not specifically to being hypothyroid, and not everyone has it. The connection is simply that a slightly higher percentage are affected than without autoimmune thyroid disease.

Be careful when doing your own researching. Doctors aren’t gods, but they have training we don’t have, and it’s important to get their opinion and make sure your information is coming from reliable sources; especially if the "research" you’re doing is on the internet. A lot of what you find out there borders on laughable, if it wasn’t so scary.

It would be premature for everyone to eliminate gluten when only a small percentage have Celiac Disease. If there are reasons to suspect it, by all means get tested. It’s not that easy to live with a completely gluten-free diet, so a person needs to be committed to make that work. There needs to be a compelling reason to muster that kind of commitment, don’t you think?

[dewdrops]

#1073550

Hi. I’m back. Unfortunately, I don’t have any good news about my condition; it has only progressively worsened. I still suffer from related symptoms such as nausea and constipation.

My GE doctor checked my stomach via endoscopy and found scar tissue in the antrum of my stomach. I came out diagnosed with antral gastritis. He then checked for H. Pylori, but it came out negative. Early this year, I developed acid reflux.

I am still taking Domperidone, at 10mg 3 times daily. Liquids still refuse to drain from my stomach without the Domperidone.

I developed neuropathies. I limped in my left leg, had pounding pains in my palms and the soles of my feet, and burning nerve pain along my limbs. I experience twitches, cramps and muscle spasms all over my body including my face. I am now taking a large dose of B-12 together with my other B-vitamins. The B-vitamins have reduced the various nerve pains.

I also developed heart symptoms. PVC’s are a constant companion – especially when it gets hot like 29 deg Centigrade and above, or when I brisk walk. I always feel like I’m out of breath because of my abnormal heart rhythm. And I feel light-headed My heart feels very weak now. The Inderal I was made to take only exacerbated the heart symptoms – I felt like I was suffocating and I’d have fluid build-up in my lungs, and my joints would start to ache.

I still suffer from heat intolerance and slightly elevated blood calcium despite my normal TSH, my low normal FT3, and my mid-range normal FT4. I am still on 125 mcg of Synthroid daily, plus 100 mcg of Selenium to aid FT4 conversion to FT3.

I’m always tired, and sleepy, but I can’t get any rest at night, and I always wake up past midnight with a throbbing headache, PVC’s and high blood pressure. I now suffer from a 140/90 blood pressure. I vomit because of the nausea. I experience hot flashes in my chest, but feel like my feet are on blocks of ice. My estradiol, estrogen, progesterone were checked – but they were all normal in the mid-range. Recently, I’ve had a parathyroid hormone test with slightly elevated results, and then underwent a parathyroid scan – but that turned out negative for tumors.

I still suffer from brain fog. My short-term memory is pretty useless. I am unable to work in this state.

It’s been six years since I was diagnosed with GD, and four years since I underwent RAI. Shouldn’t I be feeling better by now?

Anyone here still struggling for as long as I have?

[Kimberly]

#1073551

Wow, you have certainly had more than your share of difficulties over the last few years. ” title=”Sad” /> Since we are not doctors on this site, we can’t offer you any insight to what is going on, but here are a couple of thoughts…

As Ski mentioned in a previous post, once we are diagnosed with an autoimmune condition, we are statistically more likely than the rest of the population to get a *second* autoimmune conditions. I actually know of patients who have more than two, and semi-joke that they "collect" autoimmune conditions. Since you are feeling so poorly, it would be great if you could find a doctor who could help you rule out whether a totally different condition might be causing your symptoms.

Also, are your thyroid levels stable? The reason I ask is that high blood pressure is often associated with being hypER…so that is at least worth checking out.

Hopefully, you will find a doctor who will work with you to get to the bottom of your symptoms and get you back on the road to good health again.

[dewdrops]

#1073552

Thanks for the reply, Kimberly. Good golly, I can’t imagine having more than two AD’s – one can be disabling enough. It’s such a mystery how these Autoimmune Diseases just show up and attack different organs of the body. And to make matters worse, it generally affects women of child-bearing age, so if you’re a mom with two AD’s – hats off to you for not giving up.

My doctor has added another test for pheocytochroma (affecting the adrenals) to find out why my BP is elevated. I hope it isn’t another disease, but if it is pheo, then there’s a solution. I had my cortisol and estradiol levels checked too – but they all came out normal.

My thyroid levels have been slowly and steadily decreasing over the past two years that I’ve been on 125 mcg of synthroid. My TSH is now at 1.68 which is very normal, and my FT3 is low normal, while my FT4 is normal, in the mid-range. At these levels, I actually feel hypothyroid. I’m very sluggish and sleepy all the time. I’m gaining weight despite the gastroparesis. And, oh, the brain fog!

[Kimberly]

#1073553

Hello – Keep in mind that the “normal” range for FT3 is pretty wide. So even though your FT3 is “normal”, it might not be at the *optimal* point for you. Hopefully, your doctor is someone who will listen to your symptoms instead of just looking at the labs…and will work with you until you are feeling good again!

[snelsen]

#1073554

I was diagnosed with gastro paresis a couple months ago after a gastric emptying study, which is a very long diagnostic test, where you eat nuclear tagged egg whites, then have sequential xrays for the next seven hours to determine when/how much gastric emptying occurs.
My gastro paresis began as my Synthroid was being reduced. I have had a long standing history of low TSH, between .02-,04. Felt fine, but agreed to slowly (over the past year plus, reduce Synthroid (was taking 125mcg) to get TSH in normal range. My TSH did not budge over that time, and T3 T4 were normal range. But, despited being hypER by the labs, I became a zombie with every symptom of hyPO, except weight gain. Sluggish, always pathologically cold, wanted to go to bed six times a day. About three months ago, I began complaining of a mass under my right ribs. The first thought of all docs and myself was that my breast cancer has metastasized to liver or pancreas. All tests negative. I just could not eat very much at all, began to lose weight. Endo referred me to GI, first had endoscopy, then the gastric emptying study. I flunked flat. All food sitting there 7 hours later. Endo, GI doc, oncologist and myself all realize that when hypo, constipation does increase. There is not much about the upper GI tract. But I told the endo I have given it the good college try, and I wanted my Synthroid gradually increased, and the increased risk of atrial fib and osteoporosis be damned, for my life was close to a dead end, not being able to eat. Increased the Synthroid, problem gone. At 100mcg I am back to feeling fine, despite that my TSH and other labs do not wiggle an inch with the changes from 150mcg down to 77mcg.
Noone can explain it. My heart goes out to you, experience gastro paresis. It is terrible. Eating is a very social thing, as well as being necessary. I am familiar with domperidone, it sounds like you have a good doc, and if it helps your gastric emptying, that is good, for there are not many options for this situation. The other one, as I am sure you know, can be taken for a short period of time.

It seems you have a good team of docs, and that you have a complex set of issues at this time. Lots of stuff has been ruled out, and that is good. I sure hope you arrive at a resolution which explains your symptoms.

Have a question. I don’t see anything about taking selenium to enhance thyroid, except anecdotal thoughts by health food companies. Maybe Kimberly and Bobbi can comment on that. I just want to be sure it is not a confounding variable in your history, or something that might be contraindicated to take.

[Kimberly]

#1073555

I have heard stories that selenium supposedly helps with T4 to T3 "conversion" issues; however, I have not seen any specific studies that support this claim.

One thing to keep in mind with any vitamin supplement is to make sure that our docs know exactly what we are taking. Some nutrients can actually be toxic at extremely high levels. Other supplements need to be taken in the right combination with another nutrient. So unless we are under an experienced doctor’s care, we can sometimes do more harm than good if we take in excessive amounts of one vitamin.

[maryfran33]

#1073556

Hi!

I’m new to this group. Here is my brief story.

Nine months ago I had scheduled surgery to remove a parathyroid adenoma. When I awoke, I learned that the surgeon not only took out 2 1/2 parathyroids but did a total thyroidectomy as well. There was no cancer, but he had trouble finding the adenoma and said that my thryoid was small and friable. Yet, according to my thyroid levels, it had been functioning just fine.

My parathyroid function has not returned, so I take lots of calcium and Vitamin d.

Am having trouble getting the right dose of Synthroid. Began on 112 mg and eventually was down to 75 mg. Big mistake as I became hypothryoid. No appetite, nausea, fatigued. Went back to 100 mg and felt fine but TSH tested too low. Am now taking 88 mg and not feeling well again.

Years ago I was diagnosed as probably having slow gastric emptying, though I never had the actual test. I was put on Propulsid, which helped; but then it was taken off the market. The symptoms would come and go and up until the hypothyroidism I wasn’t bothered with it very much….maybe once or twice a year.

I’m beginning to think that Synthroid in the right dosage helps alleviates the symptoms of gastroparesis (slow gastric emptying) but can’t find much information.

I would very much like to continue this discussion with any of you. I would like to convince my endocrinologist that a higher dosage would be better for me. Could any of you tell me how long it took to feel better after your dosage was increased?
How often are you tested?

Thanks,
Mary

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