# Reaction to contrast? CT scan, swollen lymph glands



## LovesMyDunnBoy

Some of you may have read in my previous posts about my health issues, but I'll summarize it again here.

I'm 17 years old. I'm diagnosed with hypothyroidism, and eosinophilic esophagitis, as well as tons of allergies to tons of fruit. The only exceptions are pinnapple, oranges, and grapefruit. (they make my esophagus burn and swell, other foods are always very slow to go down if I eat fruit first) I have lots of issues with nausea, heartburn, stomach pain (like I've been kicked in the stomach) for the last couple years, continually getting worse over the years. I also have migranes.

I had my gallbladder removed on July 11th, and so far all it's done is limit what I can eat even further. They removed it because my common bile duct was too small, I didn't have stones. I also get pain in my right kidney (I think, in my back area.) I also have had reoccuring UTIs.

I got a CT scan last Friday and it was miserable. She said I'd feel warm, etc. Once she injected the contrast (iodine) I felt like I had been set on fire inside my body. The celling (sp?) was spinning and warped (like a photo editer, stretching and pinching the image) and I was very sick to my stomach. I was close to tears because I felt like I was being smothered. I've had 3 MRIs and the first part of the CT scan was without contrast and I was fine. So I'm sure I wasn't just panicing. It passed, but I was still sick to my stomach the following day and I missed school. Has anyone else had iodine, and what was your experience?

The results showed that the lymph glands in my bowel were swollen. The doctor said it's usually caused by an infection (or in some cases cancer) and can cause stomach pain. He thought I might have had a stomach virus maybe. Well, that doesn't explain why my stomach has been hurting for at least 2 years, and even since surgery. I don't get it!
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## aubie

I can't offer anything the doctors cant, but wanted you to know that was thinking of you. I went straight to my knees and prayed for you. I dont to it often, most would say not often enough, but your struggles moved me. I hope you find some relief from your symptoms, and take some comfort in knowing folks here from all over are thinking of you.


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## LovesMyDunnBoy

aubie said:


> I can't offer anything the doctors cant, but wanted you to know that was thinking of you. I went straight to my knees and prayed for you. I dont to it often, most would say not often enough, but your struggles moved me. I hope you find some relief from your symptoms, and take some comfort in knowing folks here from all over are thinking of you.


Wow, this means so much to me! Thank you very much. I'm struggling lately with school because I feel so bad, and I'm planning on going to college to be a vet. I'm worried about being too sick to handle 8 more years of school. I feel like a hypochondriac because no real answers have been found yet I feel horrible. I really do appreciate this though!
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## boots

I'll join with aubie in prayer for you.

But, I'd like to add to not panic over your reaction. There is no way know if part of the reaction, even getting a virus or bacterial infection is because of already having a weakened immune system before the contrast dye was introduced or what.

Keep on keeping on. Do what you can. One of my kids has cyclical vomiting syndrome and really struggles to maintain work and school (college). She's had to restart more than once, but knows that she'll make it.


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## LovesMyDunnBoy

boots said:


> I'll join with aubie in prayer for you.
> 
> But, I'd like to add to not panic over your reaction. There is no way know if part of the reaction, even getting a virus or bacterial infection is because of already having a weakened immune system before the contrast dye was introduced or what.
> 
> Keep on keeping on. Do what you can. One of my kids has cyclical vomiting syndrome and really struggles to maintain work and school (college). She's had to restart more than once, but knows that she'll make it.


Thank you very much. That must be very difficult for her, I couldn't imagine. I'm probably getting another CT which I'm worried about (a few months from now) which I'm a bit worried about. But we'll see. I'm really working my butt off on the days I feel good, so I should be out of highschool by the end of October 
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## 4horses

I think you need a full work up by a GI doctor. You could have mastocytosis or a mast cell disorder.

If your doctors can't treat you, go to a big hospital like Mayo clinic or John Hopkins. 

If you are in chronic pain, this needs to be looked into further. 

There is also a test for chronic enterovirus infections (the enterovirus foundation). But what you mention sounds more like a mast cell disorder than anything else. 

Mayo Clinic Program for the Study of Mast Cell and Eosinophil Disorders


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## Endiku

Loves, I think whatever it is that we have (if indeed, they are correlated...) may play a part in that iodine reaction. I felt the same thing when I had my CT scan, and actually threw up because I felt so dizzy/hot from it. The doctors didn't seem to worried about it though. I'm sorry that happened!

Strange about the lymph glands though...I wonder why they're swollen. Have they already ruled out the cancer?


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## LovesMyDunnBoy

I'll look into those things. I have a GI doctor, along with an endocrinologist, a neurologist, and an allergist. They're okay, but I feel like they're just trying to satisfy me with these tests. I feel like they see me as a hypochondriac. My bone and joint doctor, he trys hard and really wants to know what's wrong with my hip, but these issues aren't exactly his area of expertise obviously. 

Endiku, I'm fairly sure our issues are related. As far as the cancer, I've had blood tests done a lot and nothing has come back abnormal. But they weren't exactly looking for cancer either. My doctor didn't seem concerned, he thinks I just had a stomach virus. But he's also told me I don't need anything done about the Eosinophilic Esophagitis which I think I should be doing something about it? I'm glad someone had a reaction like me, I'm less worried. Although I'm not happy it made you sick!
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## 4horses

There are treatments for the eosinophilic esophagitis. I would look into them. 

Have you had a gastric emptying test? Abnormal Gastric emptying can cause stomach pain (usually with weight loss).


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## MsLady

I am so sorry you are going through this and not feeling well. I will be adding you to my prayer list of fighters 😉, we all could use a little extra prayer here and there. Believe me I know, I have been struggling with Lupus(my immune system atacts my joints and nervous system) for 7 years and not always winning the fight, but I think I'm finally on a down hill fight now.
My husband was diagnosed with Hodgkin's lymphoma 2 years ago (cancer of the lymph nodes) one of the signs is enlarged lymph nodes on a CT scan or MRI. I don't tell you this to scare you or alarm you but to inform and educate you, it sounds like you are pretty sick and need all your bases covered. If your lymph nodes are swollen you need them biopsed.
Also he has to have a CT scan every 3 months to make sure the chemo and radiation did their job and the contrast makes him sick every time! He dreads it to a point that it causes him anexity.
Hang in there and know people are thinking and praying for you!
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## LovesMyDunnBoy

4horses, no I haven't had a gastric emptying test. Although I don't have any weight loss, I have weight gain if anything. I'm currently 200 lbs, which is barely overweight for my height. I'm usually 160, in good health. 

MsLady, my mom is actually suspicious that she has Lupus or something similar. But she can't get a diagnoses either. I'll press getting another CT scan in a couple months, then another scope if they are still swollen. Are his swollen in his bowel too? Or somewhere else?
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## LovesMyDunnBoy

Here's an update:

The past couple days once been having heart palpitations. My blood pressure was as low as 90/35 and 140/90.. Last night it was 143/92. My heart rate was 140 this morning before school but I had an appointment tomorrow for a work up so I brushed it off. As the day went on my heart felt racey and fluttery. I was real light headed and losing balance, short of breath, and my eyes kept going out of focus. Then I felt like I had a phone vibrating in my chest and I felt like I was about to pass out. I took my blood pressure 15 minutes later, and it was 160/110. I went to the ER and they ended up giving me a 48 hour heart moniter (which was the plan from my primary doctor already) 

I just thought I'd let you guys know what's going on. I'm hoping I'll have results Tuesday.
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## LovesMyDunnBoy

Another update: The heart moniter results came back. My rhythm and such is fine, but I do have tachycardia. My heart rate gets up to 140/145 when I'm resting. I'm being sent to a cardiologist at Cook's in Ft. Worth for a work up to try to find a cause. That appointment is November 8th I believe. I've been told by my primary doctor to avoid exercise, caffine, fatty/greasy foods until my appointment. 

I'm still struggling with migranes. And the stomach pain has gotten out of hand, all night I wake up in pain. It feels like I've been kicked -HARD- in the stomach. The only relief if to take a very deep breath, (the kind where your stomach rises, not your chest) and it gives me a moment of relief.

Does anyone else have any comments about anything? 
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## 4horses

I wish you luck. I have been fighting my mystery illness for 4 years with no real "diagnosis". This past year I've started getting migraines and having my legs collapse randomly.

I recently had my heart checked and everything looked good.

Is it possible you are malnurished? My potassium got too low once and caused me to have a seizure and my heart rate jumped way up to 140.


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## LovesMyDunnBoy

I don't think so, my vitamin D is a bit low. But all my levels have been checked and come back normal so far. My knees will buckle a lot, but I think I have an alignment issue.
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## LovesMyDunnBoy

Update: I'm seeing a cardiologist on Friday. I went back to see my GI doctor yesterday, because I'm having flank pain (my back). So they're doing a urinary analysis, and I noticed that there was almost no color to my urine. Sorry if that's to much information lol. And I haven't drank much today, so I'm a bit worried. I'm also getting another CT in a month to check if my lymph glands are still swollen. If they increased in size, he's sending me to a cancer specialist :/
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## Cherie

I have battled immune problems, asthma, severe allergies and what has been labeled as 'multiple sensitivities' all of my life. This all led to serious migraines, eczema (so severe that I was asked one time if I could possibly have Leprosy), I have Rheumatoid Arthritis, another immune disorder and on and on and on. 

You can, indeed, have a severe reaction to contrast dye. The first time I had contrast dye used on me was when I was 27. I got sick, threw up and was sick (like with the flu) for 3 days. The second time I had contrast dye used was about 10 years later. I DIED! I had an anaphylactic reaction and went into cardiac arrest, received CPR, had 3 Epinephrine / Adrenaline injections and they finally re-started my heart. 

I found a Dr., quite by accident, that probably saved my life. Instead of trying to knock out my immune responses with steroids and other drugs that had nearly killed me, he went to the cause and identified the things that triggered my extreme immune responses and 'desensitized' me to them gradually like other allergists do with ordinary allergies.

I will PM you with his name and contact information a little later in the day when I get back in. 

Cherie


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