OT - Please Help - Need Info/Advice re: medical problem

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After having uncontrolled high blood pressure since October 1999, I just had a CT scan in early January that revealed a mass in my left adrenal gland.

After much testing, it has been decided to not do anything further until another CT scan is done March. My blood pressure has remained high and uncontrolled all this time, and during some recent routine blood work, it was discovered that my blood sugar is also elevated at 153. I would like to hear from anyone who has had similar problems, or has information on this condition, as I cannot find out much information and am very worried.

Thanks

-- LongTimeLurker (LongTime@Lurker.me), February 03, 2000

Answers

Be very careful here. In my case, I suffered hearing damage due to shooting w/o hearing protection. As a result I have a condition called tinnitus. After having a number of tests done, an MRI showed a veinus (sp?) malformation in the ponds. The neuro surgeon who ordered the MRI wanted to use the gamma knife (that's Xrays) to deal with this blob which was the size of a quarter. Needless to say there would have been some brain damage done w/ the cure, but hey what the heck - shit happens.

There's a lot more to the story including other visits to surgeons, including sending the MRI info on the the doctor who pulled the bullet out of Regan.

Bottom line, get multiple opinions! Also, go to a university hospital if possible. They are less likely to want to drum up business just for dollars. It sounds incredible that a doctor would cast a ray into your brain just to make a buck, but it is does happen.

-- warren blim (mr_little@yahoo.com), February 03, 2000.


* * * 20000203 Thursday

Get a second opinion! Good grief! Why _here_? Sounds like diabetes? Who knows? I'm not a doctor.

This forum is about Y2K!

Regards, Bob Mangus

* * *

-- Robert Mangus (rmangus1@yahoo.com), February 03, 2000.


Bob, timebomb is y2k related, but I would imagine this person is very worried. I was when the first doctor pointed at the spot on the MRIs, told me about the condition and what COULD happen, and then went into the brain ray tracing procedure which would most certianly have left me a little impaired.

As my SO and I went on to collect other opinions, it was a little like going to Vegas and hoping for the best. Needless to say, the initial doctor did not exaclty encourage other opinions.

Talk about depressing. This person most likely is very stressed.

-- warren blim (mr_little@yahoo.com), February 03, 2000.


learn as much information as you can. www.medscape.com is an top notch web site for information. also might try merck website. sorry don`t have http` for them but can get them for you if needed. i assume you trust your physician. that is THE most important thing for you now, but learn-learn-learn! and don`t be shy with your doc...ask as many questions as YOU feel necessary.

don`t panic though. god bless!

-- mutter (murmur@ya.com), February 03, 2000.


mangus, why do you feel the need to be a SHIT HEAD to this guy? HE isn"t a troll, just a guy looking for some help.If i remember correctly he may not be the first to post a non Y2K related question.

-- pam&bob (p&bprepped@pikespeak.aokay), February 03, 2000.


LongTimeLurker- My suggestion would be to see a first rate endocrinologist at a University Hospital or similar setting ASAP. I am not a medical professional but have had professional exposure to medical settings, and have been a patient in a couple myself. (Endocrine problems included). That this should wait until March seems VERY long. BTW,if you have any way to access a university medical library (maybe as an external or "community" user) that's where you find info on such conditions. This is how I researched mine... Good luck, and best wishes.

-- Swissrose (cellier@azstarnet.com), February 03, 2000.

I am a naturopathic doctor with over 20 years experience and will give you a couple of suggestions. You can e-mail me at the above address. I would encourage anyone else that wishes to contact me to do it through my web site at http://www.herbalhealer.com - You can sign up for a free catalog and membership and when you get your member number you can e-mail me. We are are a private membership organization.

-- Dr. Marijah McCain ND (drherbs@aol.com), February 03, 2000.

long-time--

I am not known for my serious posts, but here is one:

The adrenals sit on top of the kidneys, and make, among other things, substances help regulate blood pressure. When a person has high blood pressure that is way out of control, one of the concerns is that there is a tumor making too much blood pressure-raising hormone. A CT scan of the abdomen is done looking for this kind of tumor, called a pheochromocytoma. It sounds nasty, but they are usually benign (that is, they don't invade the rest of the body and destroy it as they expand). Unfortunately, a lot of times a CT is done and shows a little this thing or that thing, but the thing turns out to be something you've always had, and not really a problem. Few of us are totally free of goofy little anatomic deviations.

Since these tumors are not usually dangerous by themselves, and since, contrary to one of the above posts, physicians are not just there to "make a buck", it seems like your doc thinks it's prudent to follow this for now and control your BP in the interim. There are some hormone-level tests that can help sort this out, both blood and urine.

As for your glucose of 153; by itself it doesn't mean anything. There are better blood tests to figure out if you have diabetes, such as a HbA1-C (your doc will know) that will give you a sort of average blood sugar over the prior few weeks and help your doc figure out with you whether or not you have diabetes requiring treatment, (diet or exercise or pills or insulin). In general, a non-fasting sugar of 153 is not especially worrisome.

A second opinion from a university center is always a good idea for rare stuff, and pheos are very rare. I wouldn't be rushing off too far quite yet, though. I think you are going to be OK.

Regards, and best to you.

Do not let the rest of the board know I put up a serious post, as this will affect my reputation here.

-- I'mSo (lame@prepped.com), February 03, 2000.


Dear Longtimelurker Just like with y2k you need to steady your nerves and take a good long lok at this thing. The differential diagnosis ( all the things it could be) is long and complicated. Leave that to your Drs. what youneed to do is question them, consider other opinions, keep a file, consult other Dr.s, perhaps get a University opinion. The twwo thing you mention may wwell be unrelated, or they could be related. It will just take time, thoughtfulness, and testing to figure out what the trouble is. then too many times without being callous, much of medicine is really watch wait, observe, track things over time, see how something evolves. This is a very powerful method which yeilds rich rewards in terms of true understanding. The TV shows that show complicate surgery, complicated surgical equipment, CT scans, instant understanding do a diservice to the observational approach. Adrenal masses can bevaried and sometimes produce metabolic byproducts thatcan be measured in the blood or urine. Again medical evaluation of allthis is essential.Keep asking questions of your Dr. and Iam sure the truth aboutwhat all this is will come out.Best of Luck! Charlie

-- Charlie (cstewart@ime.net), February 03, 2000.

Uncontrolled HBP and marginally controlled Glucose Management are a recipe for kidney destruction. HOPEFULLY your doc has you on BP controlling meds (there are lots, if one causes ahem, "negative social side effects" (or as shoe said on Monday reptile disfunction) there are LOTS of others).

Hopefully he/she is considering glucose management drugs. A second opinion on the shadows on the CT and perhaps an MRI (and if you are claustrophobic make it an OPEN MRI) might be useful to all of your caregivers.

Chuck

Uh, PS if you are Afro-American, there is a steadily increasing body of info suggesting that High BP is ESPECIALLY a problem for Afro- American Males in terms of kidney failure and necrosis (tissue death).

-- Chuck, a night driver (rienzoo@en.com), February 03, 2000.



Don't be afraid...think positive things about your condition, "you are what you think". I'm in no way conhnected with the medical profession but I do practice alternative medicines for myself and children with success. Eating fresh chopped garlic daily will help lower the colestoral as will onions. Oatmeal helps rid the body of it as well, eat it daily with yogurt...the kind with acidolphilis. this will keep the good bacteria in your stomach when you're on antibiotics.

Message your feet and hands paying attention to the sore spots for the adrenals. If you're at all interrested, email me and I'll give you the spots. Find a good masseuse and go at least once weekly.

LongTime, although I have not had your specific difficulties, I have avoided major surgery twice in 8 years thanks to massage, a holistic doctor and a chiropractor/kinesioligist and acupuncture. We do what feels right for ourselves and i suspect you have never tried alternative care so I would suggest for you that you follow the above suggestions until March and continue even while you're under a specific medical program. E me if you want more information. sorry about the spelling, I'm in a rush right now!

Crow

-- crow (suzan@monad.net), February 03, 2000.


If you are not already seeing an endoctrinologist, ask for a referral to one. In any event, insist on a second opinion. Remember, you are in control, not your doctor. You have many rights as a patient. All of the previous suggestions are excellent. Just be sure you educate yourself thoroughly and ask inquiring questions. If your doctor resents that, find another one who will listen and answer you in a way you can comprehend. You are entitled to all the information that's available pertaining to your symptoms. Also, an MRI will show much more than a CT scan. Ask for one. Best wishes

-- Nightshifter (Lpn@home.now), February 03, 2000.

Dear LongTimeLurker:

-- TrollStomper (DoomersUnited@TB2000.Net), February 03, 2000.

(Sorry for the above glitch. Fingers not Y2K compliant)

Dear LongTimeLurker:

Sounds like the previous posters have given you a good start in finding information for your medical problems. Sending you good wishes for a positive outcome.

Dear ImSo:

Praise be to God, you have restored my faith in humanity. You are a troll with a soul. Looks like there's hope for you after all. Keep up the good work.

-- TrollStomper (DoomersUnited@TB2000.Net), February 03, 2000.


Of the answers given, I must agree most with the reply from "I'mSo (lame@prepped.com), February 03, 2000".

One of the several reasons for getting the CT imaging study was to look for a "pheo"; while it is quite a rare tumor, it is a "classic" (i.e., the kind of rare thing taught to medical students) reason for new, hard-to-control high blood pressure. Having found something odd on your adrenal, the next logical step is usually lab studies (such as blood, and 24- or 72-hour urine) to look for chemical evidence of excess hormones being pumped out by a possible "pheo." The excess hormones would be the cause for the high blood pressure, if you indeed do have a pheochromocytoma. You mention in your post that "After much testing, it has been decided to not do anything further"; it is unfair to your doctors for a bunch of strangers, uninformed about the facts here, to guess about what has happened and what should be done next--I suspect the "much testing" included the appropriate tests for chemical evidence of a pheochromocytoma. (That would be a logical next step in this situation--hard-to-control high blood pressure with a possible adrenal mass on CT.) If such lab tests were negative, waiting a few months might be a perfectly reasonable thing to do.

You will no doubt wonder what the treatment is for a "pheo." The answer is surgery, but the good news is it almost always 100% curative. Don't leap to conclusions here: it's very very far from certain you have a "pheo," it is just one possibility, and a rare one at that. As correctly noted by "I'mSo (lame@prepped.com)" the CT finding might be an innocent normal variation.

As noted by others, this forum is surely not the best place to seek medical advice. Nonetheless, as a community of sorts, I hope the various answers have given you a little more information and perhaps peace of mind. (Or not.)

I suggest you print out the discussion here on pheochromocytoma and show it to your doctors. It is possible that what you need is more detailed explanation from your doctors as to what they are thinking and why. And of course a second opinion, or possibly a repeat *now* of the most relevant laboratory tests, is an alternative rather than just waiting a couple or three months. But I would not leap to the conclusion that waiting is wrong, either.

--Andre in southcentral Pennsylvania

public health physician (which means that until this morning, I haven't even thought about pheochromocytomas since I held a retractor during surgery on one in medical school a decade ago)

-- Andre Weltman (72320.1066@compuserve.com), February 03, 2000.



LongTime-- One last thing. If it IS a pheo, it is amenable to surgery, and you would be one of the fortunate few with a curable cause of high blood pressure.

The fact that your doc is even looking implies you are in careful hands.

-- ImSo (lame@prepped.com), February 03, 2000.


I'm not a doctor but for me when medical conditions happen, exercise always helps. Go for long walks and if you can work up a sweat, its a good way for the body to clean out toxins via the skin. God Bless, don't panic, God doesn't send you a test you can't handle, but it may take awhile, be patient. Justthinkin

-- justthinkin com (justthinkin@health.com), February 03, 2000.

I have a tumor on my right adrenal gland that is about the size of a tennis ball. I would suggest, as have others, that you get a referral to an endocrinologist, and get an appointment set up as soon as possible.

In my situation, after the initial discovery and tests, I get it checked/re-scanned yearly. I keep getting told it's stable, even though the measurements they give for it seems to increase a smidgen every year.

It's supposed to be benign, and they classed it as a myelolipoma, or fatty tumor. And I think when it was found it probably did give my doctor of the time a bit of a scare. Not for me, but for being at risk of malpractice since he had pooh-poohed my symptoms for the previous 2+ years.

Get an appointment to see an endocrinologist. The one in my hmo had a 3 to 4 month waiting period to be seen, so try to get something set-up as soon as you can.

ITMV :-) (Individual tumors may vary...)

Best wishes.

-- winter wondering (winterwondering@yahoo.com), February 03, 2000.


ImSo--Aha, a decent fellow, after all--good post.

LongTime, Everyone has said the right thing. Calm down. It does sound as if your doctors are cometent, but do try an endocrinologist. In the meantime, are you trying dietary means to control the blood pressure and blood sugar?

Check out both types of diets online, but increase veggies, decrease salt and carbohydrates eaten alone. Eat more fish and SKINLESS chicken than red meat. We all have to go on a similar diet eventually. Since you're so worried, now's a good time. Do exercise, too, but build up. Start by walking half an hour a day with maybe some stomach crunches after.

God bless. Feel well

-- Mara (MaraWayne@aol.com), February 03, 2000.


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