The Big Bad Blue

[cordellia]

my weary endo rang yesterday. she tried unsuccessfully to convince our insurance co

to cover a series of CT's. (chest abdomen and pelvis) they ultimately agreed to cover all but the chest.

i am out of network and out of patience. evidently results from my 24 hour urine testing -- led her to order the CTs

in the course of their refusal--blue cross told her to do a chest Xray first-- if that was abnormal,

then she could order the CT. even i know that the specificity of an Xray vs that of a CT is not comparable;

so now we are forced to pay for a very costly CT scan... although it is most unlikely that a carcinoid tumour will be found,--

we feel that we must rule it out. the endo';s persistence and her willingness to battle the blue goliath impressed me.

am striving to find the goodness and light in all situations. trying to practice gratefulness...i am truly grateful to

have her on my care team... but still i loathe the colour blue. if there are any suggestion to dealing with this

blue monolith please share. bonne weekend to all

[sue1234]

So you had a positive 24-hour urine 5HIAA? If so, I can't imagine why they are denying the chest part of the CT scan, as carcinoids, even though usually in the gut, can be found in the lungs. May I ask your symptoms? I was going to ask my doctor at my next appt. for a script for a 5-HIAA test. Actually, as much as I am flushing, I should just go ahead and measure plasma serotonin!! I might order that if it is cheap enough.

[persephone]

Don't even talk to me about BCBS. I had nightmares with them during my stint in America

People mock the British system because we can't always choose which doctors we see, but at times like this, I see the value in our system: if your doctor said you needed a test, you would get it, no matter how much it cost. And it would cost you nothing.

I wish I could help. I wish your system was more like ours.

Can you appeal it? I know when I was in America I was told BCBS had an appeal procedure - if you pester them enough, and explain what you've explained here, could they just concede defeat?

I met a lady in hospital in the US who had actually lost her house because of her health care costs. I find this truly terrifying. I wish I could change it, and make it better so you could get the care you need. It worries me every day- I still get flashbacks to what happened to me when my pots flared up in the US. I don't think I'll ever forget it. I'm rambling so will shut up!

But, can you let us know you're ok, and whether you get this CT or not?

Hugs

[cordellia]

hello--

thank you for your replies... they are fully appreciated.

i will refrain from comment re: health insurance--no one deserves

my sad treatise.

ponder: hoping that the self pay (CT scan) counts toward our

deductible. not certain how this will work. will start the phone

game again on monday...

best,

cordelia

recent symptoms:

lightheadedness

hypo/hypertension

breathlessness

edema in forearms--slight

heaviness and pain in chest

facial flushing-- a major episode, in office, during an exam, prompted the ordering of tests

weakness

anxiety

exercise intolerance

[sue1234]

Cordelia, you just listed all of my symptoms!! The only slight difference is I get swelling in my hands and they turn very red. Did you have the urine or serum testing?

[cordellia]

hello sue--

initially a 24 urine test was done; endo said 5HAII? 5HIAA ? elevation was minor;

also said she there could have been a dietary component that caused elevation,

she was vague. i was not on a restricted diet prior to the test. lab handout

simply warned to avoid foods containing idoles.

urine was retested-- waiting for results. endo went ahead and scheduled

CT without waiting for results of second urine. i like her proactive stance--

even if BC/BS does not.

my facial flushing is confined to my cheeks-- occurs randomly

it is a dry flushing

swelling in forearms is minor -- began about 1.5--2.0 years ago.

recent bouts of nausea--short lived no vomiting

headaches seem to accompany the hypertensive episodes

seem to have more gastro issues as of late as well.

how does all of this compare to your experience

all of this seems to be rather random-- nothing quite piecing together neatly.

best,

cordelia

[sue1234]

I have been my usual HOT(heat intolerant, that is!) self. I wait with bated breath for winter, and now I am hot this winter! It really got bad after Christmas. I noticed I have been needing to keep my house cooler than usual. All day long I get this wave of heat(dry) that rushes from my chest up my head, and then down to my hands. They, in turn, swell and get hot and red. This will last for up to 30 minutes, but it helps if I can go where it is cooler. Heat sets it of big time. I don't know what I will do when summer approaches.

I do know I ate chocolate at Christmas(quite a bit,actually). I have gone all year not eating sweets or junky food, and someone brought chocolate covered nuts into our house and I had a weak couple of days. Then all this started and I knew then that the chocolate had made my situation worse. I then found out it is on the list of tyramine foods for pheochromocytomas and now a carcinoid trigger. So, I don't know what's up.

Have you been tested for a pheo? I don't have headaches. My b/p goes up and down. When flushing, I need to stay sitting or I feel really "swimmy" headed.

[cordellia]

pheo testing negative (part of the 24 hour testing-i thought)

the heat--- yes any warm environment is a challenge. in addition to the flushing-- i often experience a sensation

of warmth or heat on my face and (rarely) neck. it is distinct from the sensation of warmth that i feel just before the

pre-syncopal episodes.

i know that diet plays a crucial role. hoping to return to a raw foods diet or at least

a few days weekly. caffeine is new to me. just started drinking coffee (decaf) this year.

am going to ween myself from this new addiction. it certainly is not helping things...

sue good luck on your journey. i understand that these sorts of things are notoriously

difficult to diagnose. please update when you have news to share. i am

obviously interested in this as i am still on the discovery path myself.

good night,

cordelia

[Lovebug]

Cordelia,

Please keep us all updated b/c I've noticed that I have a few of the same symptoms. As a matter of fact, some of my worst symptoms are GI (LUQ abdominal pain, diarrhea, GERD, chest pain, etc). But tonight I had an "episode" and towards the end (in trying to deal with all the frustration), I started to cry. This brought on a feeling of fire in my face that I have never felt before. It had flushed earlier but that was gone. But at this time it burned so bad. My husband got me a cool rag and I kept it on my face till the pain subsided in a minute or two. I wonder if this could be related to your symptoms. Isn't this what some on here have called MCAD?

[cordellia]

MCAD-- i agree --this possibility should be explored. will discuss w/ rheumo again.

though if faulty memory serves me correctly--she suggested a consult w/ geneticist.