Getting Tested For Neuroendocrine Tumor At Nw-New Endo

[sue1234]

I just have to say that I eat gluten free. My house is gluten free in the sense that I don't have any gluten ingredients. Any guests are welcome to bring in their food that they are snacking on that has gluten in it, but I don't cook anything with gluten. My kids are all in their 20s and live out of the home.

With that said, when I cook family meals, I make everything gluten free. Most of the time all I hear is how GOOD the meal was. Going gluten free is not giving up good food, it's just substituting ingredients here and there. I've made chocolate chip cookies that taste really similar to the regular ones. I don't do dessert very often as I try and stay low sugar.

I buy the gluten free bread, but occasionally bake mine from scratch. I make a large batch of muffins that we store in the freezer, and they are only a 1-minute microwave turn away from eating.

I just want to say all this to let you know it is not a sacrifice. I'll admit it is difficult when you travel, but I have learned to know what places I can eat what. And, I bring food with me anyway in case I can't find somewhere to eat(that is more due to eating frequently due to low blood sugar). It has improved my intestinal issues tremendously.

I hope y'all try it to see if it helps your intestinal issues. Just having that working normal is worth all the learning curve needed to do gluten free!

[Kris4444]

Sue,

I feel like if I had a grocery check list to start with that maybe I could figure it out. Gluten free has been suggested to me on more than one occasion. It just seems so overwhelming.

[Kris4444]

Not to mention that with my GP and colonic inertia, I don't digest fruits and veggies well so what would I eat Lol?

[sue1234]

I can't do hardly any fruit due to the sugar issues, and veggies I had to slowly build up. But, going gluten free doesn't necessarily change what you eat, just swapping out a different flour for the wheat flour in baking. Of course, finding the correct bottled ingredients is a search, but once you learn the brands, it gets easier(for instance, Heinz makes their condiments gluten free).

You just eat what you eat now, just with altered ingredients. If all you eat is bread and chicken(just an example) now due to the intestinal issues, you can still eat gluten free bread and chicken!

My bloating was bad for about 13 years. I would reach kind of critically bad levels, as I had trouble breathing. I went gluten free and *POOF*, I am 95% better. I am thinking my last 5% is related to milk products.

[Kris4444]

I got rid of most dairy and that helped a lot with the bloating. I love almond milk.

I guess I'll just have to bite the bullet and do it.

Thanks for the support and advice.

[Mydoggielovesme2]

Hi All, I have been reading with interest this thread since it started. But I couldn't help but jump in on this gluten bit. I was diagnosed with celiac in march, and have been gluten free since April. It really is not as hard as you may think. And the benifits so outweigh the hassles of being strict with your self! My family is also now gluten free and feeling so much better also, even though they do not have celiac. Please consider this as something to help your body heal itself. Gluten is good for no one.

[kayjay]

Hi All, I have been reading with interest this thread since it started. But I couldn't help but jump in on this gluten bit. I was diagnosed with celiac in march, and have been gluten free since April. It really is not as hard as you may think. And the benifits so outweigh the hassles of being strict with your self! My family is also now gluten free and feeling so much better also, even though they do not have celiac. Please consider this as something to help your body heal itself. Gluten is good for no one.

+1

It's intimidating at first but gets much easier

[cberau]

This stuff parallels my story so closely, especially you Kris. I am still very confused right now about my situation. I am waiting on word back about my latest testing battery at Mayo AZ with Dr. Goodman.

My story started (after feeling really crappy since about 2002 but not complaining about it) about 1 year ago at my PCP office, she checked my BP and it was through the roof. She started asking me a bunch of questions (because she knows my BP is usually normal/low) and after about an hour with her, her expression started looking very concerned, she said she thought I could have a pheo, but it's very rare, and she had never personally seen one.

So we do the plasma metanephrines and 24 hour catecholamines...negative. Still, she is very concerned, because my BP would fluctuate without provocation rapidly between 80/45 to 220/120, and she said I was a walking stroke. She somehow talked my insurance into paying for a I-123 MIBG at Yavapai Regional Medical Center in Prescott Valley, AZ before we got the catecholamines results back. I also got a CgA, which was falsely elevated because of being on Prilosec, when accounting for the average increase on prilosec, my number was dead normal. Anyway, I knew it would be negative, but I did it anyway, despite the radiation exposure, although the I-123 is nowhere near as bad as I-131. A few days later I called YRMC to see what the results were, and I said I'm sure they're negative anyway, but I wanted to get results to take to Mayo because I had an appointment with an endo, Dr. Cook. My PCP has been such an advocate because she knows me so well, she knows I'm not malingering or making any of my problems up. Well, the lady at YRMC told me that I shouldn't be so sure the result of the MIBG was negative, and that the final report isn't signed off but I was welcome to come and pick up the CD images and see for myself. So I get the CD home, and sure enough there is a bright spot on my right adrenal gland about 5cmx5cm marked out on about 40 different images. Later that day, I get a call from the radiologist, who said he had 3 more opinions on the image because it was borderline conclusive, but given the lab results, he thinks it's just an incedentaloma. However, he said in general, my MIBG scan was very "sparkly" and he had never seen anything like it before, and agreed with the fact of me going to an endo at Mayo because he thinks something odd is definitely going on in my body.

Next day, I have an MRI at Prescott Medical Imaging, with and without contrast, they see nothing.

Go to Dr. Cook, an endo at Mayo on May 21st, he says he doesn't think I have a pheo, but he did think I had POTS of some sort, he said he didn't expect to find anything on his specialized endocrine labs, and he didn't, all were normal. He referred me to Dr. Goodman. Dr. Cook ordered a 5-HIAA 24hr urine, but I never did it because I was too lazy, I ******* hate 24hr urine tests.

Driving back up the hill to Prescott from Phoenix, I get a call from Mayo saying the next available appointment with Dr. Goodman was August 29th, which was just way too far away for me, so I requested an appointment with Dr. Barboi at Rush University Medical Center back home in Chicago, he called me personally that day and gave me an appointment on June 6th. So I fly back, unexpectedly to me he did all the autonomic tests (but no blood, urine, or standing catecholamines test, it was just technically a consultation). Dr. Barboi was a great doctor, best I've had so far, nicest guy ever, and you can tell he's incredibly smart. Anyway, during the TTT, he was feeling my hands, looking at the color of my hands etc, and said I was profoundly hyper pots, and he would definitely try treating me further if/when I move back to Chicago (which could be soon).

August 29th was my consult with Dr. Goodman, I told him everything, but I couldn't tell if he either didn't believe me or what, he was hard to read, but he was taking a lot of notes. He ordered up autonomic reflex testing, standing catecholamines, a few other labs, 24 hour holter, ECG for Sep 11th and 12th.

Some of the results are coming online now and holter indicated POTS as suspected, morning cortisol was very low, which I wasn't expecting, sitting norepinephrine was 475, standing 1690. Calcium was slightly high, sodium is normal I guess, although I'll wait for his word, urine volume was high, chloride low, lactate low.

I expect in a few days I'll have more to report, but judging by my 1690 standing norepinephrine I've got a rather nasty case of hyper-pots. Like you, Kris, I was also hoping for a pheo. I am totally out of energy for living with this syndrome/disease, and with the dx of hyper-pots there really isn't any reason to be optimistic for me, as I have tried all the most common meds, clonidine, beta blockers, SNRI, tetracyclic (mirtazapine), midodrine, allegra, prevacid, lisinopril and more. Bad side effects from most, no net improvement from any. The only med that has worked on keeping my BP under control was 6 times the max recommended daily dose of lisinopril, but it didn't improve any of my somatic symptoms, just kept my PCP more at ease.

Sorry for the super long post, but I don't know how to make my crazy story any shorter.

Edited September 16, 2013 by corina

[sue1234]

cbakl, maybe your high calcium is a clue. That can cause high blood pressure in itself, on top of all the POTS mess.

Curious, what was your urine volume for them to label it high?

One more thing, you said an area 5 cm x 5 cm on your adrenal, and they called it an incidentaloma. They actually remove things that get up in the 5 cm range, as that's kind of large. Did you mean 5 mm x 5 mm? If not, they need to take that thing more seriously.

[cberau]

it might have been 5mmx5mm, I'm not terribly concerned about it, as my symptoms are much closer to hyper-pots than a pheo. My urine volumes are ALWAYS above 2.9liters, usually 3.5-4 liters. I do drink quite a bit of water because I am always so thirsty, dry mouth, dry eyes (which I know is an indicator of Sjoegren's, but I'm doubtful that's what it is). Creatinine levels, and other kidney tests have been done, such as albumen because I usually have frothy urine, however the doctors summed it up to the type of water here, no kidney problems found. I only only only drink water, I avoid caffeine a lot, but if I have caffeine, it causes no discernible difference in volume, nor do I really have any bad side effects from it in normal doses. Generally, I have nothing that is a diuretic in my system.

Edit, however, the spot was clearly visible, and I could relate it in size to a vertebra as it was basically touching my spine, and it looked much bigger than 5mmx5mm (I grew up metric lol).

Here's a link to the photo of it

"https://www.dropbox.com/s/kcqy4sauhk68vmt/MIBG.png"

[sue1234]

I'm with you on the urine volumes. Mine are usually around 3500 average. I also am thirsty and drink alot, but I do drink some caffeine to help me wake up. I'm sure the caffeine contributes some to the volume, but I've been through bouts of being caffeine-free and still had the large volume.

I am similar to y'alls presentation in that I seem to have alot of adrenaline that takes the smallest of things to ramp up for. It is like when I release, it is just way over the top.

I myself have a 1 cm adenoma on each adrenal. My tests don't come back for them functioning, when tested for a pheo, cushing's or an aldosterone-secreting tumor. But, as someone once told me on another forum years ago, the adenoma may sound small, but think about the fact that the adrenal gland is the size of a thumb. If you indeed have something 5 cm, it is nearly as big as the adrenal itself!

Let us know what you find out with your results coming in.

[cberau]

You know upon further looking at the image, the size seems to be on there, it's just not obvious...from what I can surmise it is 2.55cm by 1.28cm

[Kris4444]

Cbakl,

Our stories do sound alike. What were some of your symptoms? Flushing?

I'm doing another 24 hr urine today. This one to look for 5-HIAA which I'm sure I've done before. I'm sure it will be normal. I drop it off tomorrow at the lab and then I will do a glucose tolerance test.the glucose test will be interesting for me as I've been having bouts of hyperglycemia after eating.

I'm still waiting for the results of the cortisol salvia tests.

please let me know what your results are as I am interested since our stories are so much alike. Good luck. I hope they figure this out for you.

[Racer]

You know upon further looking at the image, the size seems to be on there, it's just not obvious...from what I can surmise it is 2.55cm by 1.28cm

Just want to point out that the "w:255 l:128" is usually the whole image size, not sure if that is the size of the markers

[SarahA33]

Kris,

How are you feeling? I've been thinking of you but have had a really, really bad week. Hoping you are doing well.

Fingers crossed you get some answers with the glucose testing and the 5h.

Take care,

Sarah

[Kris4444]

Hi Sarah. Sorry to hear you've had a bad week. What's going on?

I'm ok. I was outside in the sun all day at my daughter's horse show. I got sunburnt and so I'm very swollen and have a major headache and joint pain. Gotta love autoimmune disease.

I hope things get better for you. Hang in there!

-Kris

[kayjay]

Have you completely ruled out Lupus? I was misdiagnosed with that years ago. I don't not have a rash, sun sensitivity, or joint pain.

I have a good friend with lupus and she has those three symptoms.

[Kris4444]

Lupus is one of the 3 connective tissue diseases that are part of my UCTD (undifferentiated connective tissue disease). I get the butterfly rash, sun sensitivity and joint pain.

The Raynaud's phenomenon and GI issues point to Scleroderma. The dry mouth and eyes, Sjogren's.

I have had repeated negative ANA except one time in which it was a very low positive nucleolear pattern. It was years ago and I've been negative since.

[kayjay]

I have the raynaulds, gi, dry eyes, trouble swallowing. I also now have negative Ana's.

I wonder if you would test positive for "flare" after being in the sun. I don't know what I'm talking about- its just a though. My friend with lupus was diagnosed after a long episode in the sun.

[Kris4444]

Lol. I often feel like I don't know what I'm talking about too. I've been on plaquinel for years to treat whatever this is. Most if the autoimmune diseases are treated the same. I've tried a lot of different prescriptions but now I'd like to get off of everything for a while.

I don't know what would happen if they tested me after sun exposure. It's so weird, I used to tan beautifully. I was outside as long as everyone else. No one else is burned or even pink. Just me. When I woke up this morning the tops of my hands were bright red and very swollen. My lips as well. My face had the malar rash and my neck is very red. My headache is unbearable. 800 mg ibruprophin hasn't touched it. I've slept most of the day.

I'd give anything to get my life back.

[cberau]

You know upon further looking at the image, the size seems to be on there, it's just not obvious...from what I can surmise it is 2.55cm by 1.28cm

Just want to point out that the "w:255 l:128" is usually the whole image size, not sure if that is the size of the markers

Those numbers are only marked on the images on the CD that have the red hash marks pointing out the spot, I guess that's what I thought it was. On my computer screen, that whole image is certainly larger than 255pixels by 128 pixels, not expanded or pixellated.

[cberau]

Cbakl,

Our stories do sound alike. What were some of your symptoms? Flushing?

I'm doing another 24 hr urine today. This one to look for 5-HIAA which I'm sure I've done before. I'm sure it will be normal. I drop it off tomorrow at the lab and then I will do a glucose tolerance test.the glucose test will be interesting for me as I've been having bouts of hyperglycemia after eating.

I'm still waiting for the results of the cortisol salvia tests.

please let me know what your results are as I am interested since our stories are so much alike. Good luck. I hope they figure this out for you.

And Kris, yeah I will let you know. 5-HIAA for me was normal, I've never had a problem with glucose that I've seen. Been tested rather regularly for that. My cortisol in May was normal, I'm thinking it could be a fluke result because I was so exhausted when I got the test done, hadn't slept that night before. I have only had cortisol pulled via blood twice, no saliva test.

[Racer]

Those numbers are only marked on the images on the CD that have the red hash marks pointing out the spot, I guess that's what I thought it was. On my computer screen, that whole image is certainly larger than 255pixels by 128 pixels, not expanded or pixellated.

If you are referring to the "w:255 l:128" at the bottom in white text, it is the image size, 255x128 mm(?) at .89x magnification. In most dicom programs you can turn that image info overlay on/off. It is part of the image metadata. The tech/dr who interpreted the test results should have noted in the report what that measurement was.

[cberau]

Those numbers are only marked on the images on the CD that have the red hash marks pointing out the spot, I guess that's what I thought it was. On my computer screen, that whole image is certainly larger than 255pixels by 128 pixels, not expanded or pixellated.

If you are referring to the "w:255 l:128" at the bottom in white text, it is the image size, 255x128 mm(?) at .89x magnification. In most dicom programs you can turn that image info overlay on/off. It is part of the image metadata. The tech/dr who interpreted the test results should have noted in the report what that measurement was.

Oh, yeah I'm not sure. All the report said was small incentaloma. No size. However talking to the radiologist he told me the size of it, and it was at least over 1cm by 1cm, if only slightly.

[badhbt]

Cbakl

How high was your calcium level?