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    Old 11-30-2004, 02:22 PM   #31
    butterflytrans
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    Re: question for Quincy

    Hey there quincy...the LDH that you have is totally non-specific. In other words, it doesn't point towards anything bad!

    For twisten:
    PSC stands for Primary Sclerosing Cholangitis. It is a disease where there is chronic inflammation in the bile ducts that are inside and outside the liver. These are the pipes the bile runs through. People normally associate bile with the gall bladder, but the truth is, the gall bladder only stores the bile--the liver actually makes it. In PSC, these bile ducts stay inflamed and eventually harden and start to block off (similar to what happens in one's arteries when someone has heart disease). Blocking off of these bile vessels leads to congestion within the liver and causes liver damage. PSC is often associated with Ulcerative Colitis, and it seen in men about three times as much as women.

    ERCP is a term that stands for Endoscopic Retrograde Cholangiopancreaticoduodenography. A camera is put down the esophagus, in to the stomach, then in to the first part of the small intestine (the duodenum) and is then put through the duct through which bile and pancreatic secretions are pumped in. Through this whole dye can be injected backwards in to the biliary tree (hence the term retrograde) and you can visualize the bile ducts/pancreatic ducts and so on. You can also use ERCP to visualize gallstones and even to help remove them!

    As for prednisone being overprescribed, how many people have you seen with CD or UC get it prescribed? What is it about the pattern of prescription that gives you the impression of overprescription. Also, what could be done rather than using prednisone?

    Please don't misinterpret my post--I'm actually asking what you think, because I'm interested.

     
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    Old 11-30-2004, 04:50 PM   #32
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    Re: question for Quincy

    I know 15 people with it I've met since I've been diagnosed and 4 with arthritis. I know with me if I go on fluids for awhile things will sometimes calm down so I ask them to put me on IV for a few days and see but they won't. They have to add the pred immediately. The other people say they have asked to have their asacol and/or imuran or pentasa raised and are told no, we'll try pred. We've all discussed this before how the docs are in such a hurry to rx the pred and won't listen to alternatives.
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    Old 11-30-2004, 05:07 PM   #33
    butterflytrans
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    Re: question for Quincy

    I see what you're saying twisten. Is this happening even in your friends who just have minor flares, or are these people having flares that are interfering with every day activity?

    Additionally, if you want to be in hospital, unless you're really really old, they can't justify keeping you in the hospital for a few days just on IV fluids. That's probably the biggest reason they can't do that for you. I'm not the one with Crohn's, but why do you think that IV fluids would help to reduce your flares? If that's the case, then it's either a placebo effect, or you have ischemic bowel whose symptoms are worsened during periods of dehydration due to lessened blood flow.

    What kind of symptoms do you get when you have a flare?

     
    Old 11-30-2004, 07:11 PM   #34
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    Re: question for Quincy

    Its hard to speak for them but I would say they are usually relatively minor flares. My symptoms are vomitting, nausea, sometimes diarrehea but in a bad flare my bowels don't move anything, not even gas, severe abdominal cramps with burning in some areas, sometimes blood and mucous and I'm probably forgetting some of them. I have a tendency to dehydrate in a flare thats why I mentioned IV but they are always the ones wanting to put me in the hospital, not me wanting to go in. I find sometimes when things are acting up when I'm at home if I go to straight fluids for a few days they may calm down without any extra meds. I know pred has its good points. It has brought me out of really bad flares many times. I just don't think when things are relatively minor that it needs to be taken as seems to be happening more often than not. What is your line of work that you know so much about this without having it? I would never know what I know now if it hadn't happened to me. Thanks by the way for telling me what PSC and ERCP mean. I've never heard of them and didn't realize people with UC were at risk for PSC. Just one other thing for them to worry about.
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    Old 11-30-2004, 11:12 PM   #35
    Harry
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    Post Re: question for Quincy

    Sorry twisten for posting on the thread you started but wanted to write Butterfly--OK

    Quote:
    Originally Posted by butterflytrans
    49 years?!!! Nice...you've been married way longer than I've been alive!! *heehee* Just teasin' Harry

    For harry: you have primary hyperaldosteronism...i.e. Conn's syndrome. There is much more going on in your body than just losing potassium. Potassium loss is actually more of a side-effect of the process which is going on in your body. Did you get your adrenals out, or are you treated with medications to suppress your adrenals, or neither?

    About the pancreatic mass: how did they get the needle biopsy of the mass in the first place? Was it just ultrasound guided? Sometimes the needle biopsy of a mass doesn't get the best sample, so it is often advantageous to get an ERCP after that. So don't fault your doctor for that. Especially considering he was following up on a pancreatic mass. You should understand how lucky you are that the mass was benign, because pancreatic masses usually aren't. I do see YOUR point though about not wanting to get the mass out if it is benign.
    Hi butterflytrans,

    I have been reading some of your posts and I am very impressed and I am not easily impressed with your knowledge and answers even your typing is good--Gee no errors. I am a retired Electronic Engineer and type with one finger. And, have been posting on Healthboards over 5 years and it is rear that a person with your knowledge & education takes the time to answer some of these questions in such helpful and beneficial ways.

    Conn's syndrome is so rear that it has only been mentioned several times on all of Healthboards.

    In 1993 the Gastro Doctor was trying to eliminate MEN-1 from a diagnoses so I guess an ERCP may have been justified but I had no pancreus symptoms and chances of pancreatitis was about 25% back then-- I don't think the definition of ultrasound was developed to what it is today.

    The needle biopsy of the pancreatic mass(determined to be a pancreatic psudocyst) was X-ray guided. May not be the best now but 11 years ago -- I think it was-- who know??

    I have adenal hyperplasis-- no adenomas or any adenalectomies.
    The Hyperaldo is being treated by an Endocrinologist with a potassium sparing diuretic (Amiloride) plus some additional KCL liquid. Spironolactone produced breast problem with me. I have K+ tested now bi-weekly when needed adjusted by me as necessary to keep K+ above 4.0

    As you said I also have other problems that are associate with CONN's as well as my age--- B/P and mgus that are being treated and followed by a B/P Specialist, 2 Nephrologist and a Hematologist/Oncologist + 2 Alternative Care MDs.

    By the way I have also been using Homeopathic medicine for about 35 years and use good sound nutrition -- well most of the time..

    God Bless---Harry

    PS-- Any suggestions??

    Last edited by Harry; 11-30-2004 at 11:41 PM.

     
    Old 12-01-2004, 09:01 AM   #36
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    Re: question for Quincy

    Not a problem Harry. That's what the boards are for, for all of us to share and learn from.
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    Old 12-01-2004, 03:47 PM   #37
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    Re: question for Quincy

    Quote:
    Originally Posted by twisten
    Its hard to speak for them but I would say they are usually relatively minor flares. My symptoms are vomitting, nausea, sometimes diarrehea but in a bad flare my bowels don't move anything, not even gas, severe abdominal cramps with burning in some areas, sometimes blood and mucous and I'm probably forgetting some of them. I have a tendency to dehydrate in a flare thats why I mentioned IV but they are always the ones wanting to put me in the hospital, not me wanting to go in. I find sometimes when things are acting up when I'm at home if I go to straight fluids for a few days they may calm down without any extra meds. I know pred has its good points. It has brought me out of really bad flares many times. I just don't think when things are relatively minor that it needs to be taken as seems to be happening more often than not. What is your line of work that you know so much about this without having it? I would never know what I know now if it hadn't happened to me. Thanks by the way for telling me what PSC and ERCP mean. I've never heard of them and didn't realize people with UC were at risk for PSC. Just one other thing for them to worry about.
    Thanks again for sharing your story with us twisten. So as a final comment to this whole thing, I totally agree with you that prednisone shouldn't be used for minor flares.

    Don't worry about PSC...usually you see that in really really bad cases of UC, which I don't think you have...wait..you have CD right? Man! I'm already getting people here mixed up. No, you're right, I do not have Inflammatory Bowel Disease. And no problem about telling you about PSC!

    There are what we call "extraenteral" manifestations of IBD....this refers to symptoms OUTSIDE of the GI tract that patients can often get. These include:

    Rashes: erythema nodosum (hard, raised, 1-2cm diameter, non-painful bumps on the shins), pyoderma gangrenosum (pus discharging sores that appear on soles of feet), circinate balanitis (inflammation of the penile head).

    Joint pain: An inflammatory arthritis which presents as pain and stiffness in the morning, and gets better with use. Often in the large joints such as the sacroiliac joint (lower back), hips. but also shoulders knees etc.

    Eye problems: usually inflammation of portions of the eye: episcleritis (inflammation of the white part of the eye immediately surrounding the iris), uveitis (inflammation of the iris and the ciliary body), iritis (inflammation of the iris)

    Other: UC can be associated with PBC, CD can be associated with perianal fistulas/abscesses and fissures, both can present with oral ulcers.

     
    Old 12-01-2004, 04:07 PM   #38
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    Re: question for Quincy

    Quote:
    Originally Posted by Harry
    Sorry twisten for posting on the thread you started but wanted to write Butterfly--OK



    Hi butterflytrans,

    I have been reading some of your posts and I am very impressed and I am not easily impressed with your knowledge and answers even your typing is good--Gee no errors. I am a retired Electronic Engineer and type with one finger. And, have been posting on Healthboards over 5 years and it is rear that a person with your knowledge & education takes the time to answer some of these questions in such helpful and beneficial ways.

    Conn's syndrome is so rear that it has only been mentioned several times on all of Healthboards.

    In 1993 the Gastro Doctor was trying to eliminate MEN-1 from a diagnoses so I guess an ERCP may have been justified but I had no pancreus symptoms and chances of pancreatitis was about 25% back then-- I don't think the definition of ultrasound was developed to what it is today.
    Hey Harry. Thanks so much for the kind words. You're actually the first person who has complimented my knowledge. Usually I get attacked by other members on the boards for what I know. Anyway, again thanks.

    Ahhhh, MEN 1 eh? I see what you mean about not having any pancreatitc symptoms. If your gastro was suspicious of MEN-1, then you actually may have had symptoms of something that might have been coming from the pancreas, but was not a symptom of pain.

    For those of you who don't know: MEN stands for Multiple Endocrine Neoplasia..this is a syndrome where a person can often have more than one tumour simultaneously in more than one endocrine gland. An endocrine gland secretes hormones in to the body without the use of ducts..i.e. the substance goes straight in to the blood. Some examples are: insulin, testosterone, gastrin etc. etc. etc.

    So MEN-1 is a combination of tumours in any of: adrenals, pituitary (secreting or non-secreting), pancreas (gastrinoma, insulinoma, VIPoma, parathyroid etc). The doctor thought you might have had a pancreatic tumour which can be a tumour secreting any one of the many things that the endocrine portion of the pancreas secretes. A common one is a gastrinoma which secretes something called gastrin. Gastrin normally causes the stomach to secrete acid, and overproduction of gastrin from a tumour can cause hypersecretion of acid. This is manifested by horrible heartburn and stomach pain. Did you have that? This is known as Zollinger-Ellison syndrome.

    MEN 2A consists of tumours in: thyroid (medullary carcinoma of the thyroid), parathyroid carcinoma, pheochromocytoma (a tumour of the adrenals which over produces a hormone which is like adrenaline). When the doctors didn't have a diagnosis, they might have seen your adrenals and thought that you had a pheochromocytoma. Additionally, with evidence of the pancreatic mass, the diagnosis of MEN-I, I can see now, was totally reasonable to consider.

    MEN 2b consists of tumours in the: thyroid (MCT), pheochromocytoma, and also has Marfanoid features (this is hard to explain, but if you want me to explain it, ask).

    I can see if someone is suspicious of this diagnosis, why s/he might want to do an ERCP. Whatever the result, I'm glad you're okay Harry.
    Quote:
    Originally Posted by Harry
    The needle biopsy of the pancreatic mass(determined to be a pancreatic psudocyst) was X-ray guided. May not be the best now but 11 years ago -- I think it was-- who know??
    A pseudocyst eh? Have you EVER had pancreatitis? This is usually a remnant from an old bout with pancreatic inflammation.
    Quote:
    Originally Posted by Harry
    I have adenal hyperplasis-- no adenomas or any adenalectomies.
    The Hyperaldo is being treated by an Endocrinologist with a potassium sparing diuretic (Amiloride) plus some additional KCL liquid. Spironolactone produced breast problem with me. I have K+ tested now bi-weekly when needed adjusted by me as necessary to keep K+ above 4.0
    Very interesting Harry! This is a really cool endocrine case. Once again, for those reading: Conn's syndrome a disease where the adrenal glands oversecrete aldosterone. This is a hormone which works on the kidneys to tell them to reabsorb sodium and water. While this is happening, potassium is being spit out in to the urine and you pee it out. If you overproduce aldosterone, you will have a low blood potassium, and you will start getting high blood pressure because of the extra salt and water being reabsorbed in to the blood by the kidney. Spironolactone is a good medication for this because it inhibits aldosterone directly. The only problem with this drug is that, in men, it can cause a side-effect known as "gynecomastia" where breast tissue can actually develop. Amiloride is a good alternative because it can help you pee out the extra salt and water you are reabsorbing, but you don't end up peeing out too much potassium. You have to watch it with amiloride (and spironolactone for that matter) because your potassium can actually get TOO high.
    Quote:
    As you said I also have other problems that are associate with CONN's as well as my age--- B/P and mgus that are being treated and followed by a B/P Specialist, 2 Nephrologist and a Hematologist/Oncologist + 2 Alternative Care MDs.
    You have MGUS too eh? That's strange. I'm racking my head right now for an association with MGUS and Conn's, though I know that MGUS can be associated with other cancers including multiple myeloma.

    Explanations:

    MGUS stands for: Monoclonal Gammopathy of Undetermined Significance. This is a condition where someone has noticed that one particular antibody producing B-cell in Harry's blood has made a LOT of extra copies of itself that the body doesn't necessarily need because it's not fighting an infection; however, Harry most likely has no symptoms. MGUS CAN be associated with a disease called Multiple Myeloma where the renegade B-cell makes a RIDICULOUS amount of extra copies of itself which can wreak havoc around the body. MGUS also increases the risk of cancers in the upper nasal cavities (nasopharynx). But again, this is exceedingly rare, and is more likely seen in patients of oriental descent.

    Quote:
    Originally Posted by Harry
    By the way I have also been using Homeopathic medicine for about 35 years and use good sound nutrition -- well most of the time..

    God Bless---Harry

    PS-- Any suggestions??
    Yes...for your Conn's syndrome, you should have a relatively low salt diet. It's a myth that all people need to eat a diet low in salt to stay healthy. If you have working kidneys, you don't need to avoid salt because any excess salt you eat will be peed out. HOWEVER, there are exceptions and you are one of them. You are a person whose kidneys take up TOO much salt, and are thus salt-sensitive. If you eat too much salt, you can give yourself pretty high blood pressure. Just be careful of that.

    Out of curiosity, which homeopathic medication do you take?

    Last edited by butterflytrans; 12-01-2004 at 04:09 PM.

     
    Old 12-01-2004, 06:11 PM   #39
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    Re: question for Quincy

    Butterfly, I think its great to have more people with incredible knowledge such as you have and feel ashamed that others would attack you for it. I especially like the way you explain things to those of us (definitely me) who don't understand it all. So thanks and I hope to see you stick around.
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