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Date of last update: 10/15/2017.
Forum Name: Liver Diseases
|Hanging_in_there - Sun Jan 11, 2009 7:22 pm|
(preface: I'd rather give too much as too little)
I am a 46 year old male with a personal and family history of high cholesterol, BMI of 31 and slightly pre-diabetic. I have a history of migraines, IBS but BP is always good and overall don't feel too bad.
However, having a lifetime of total cholesterol 235 - 285 range and I have tried a number of the statins all of which I react terribly to by developing nodules and tenderness armpit/breast, neck, inside of the elbows and my arms and legs get where they feel as if I ran a marathon. Even under the best statin 10-15% drop was the maximum improvement seen.
I have tried a recent drug that was advertised to work in the digestive tract with little observable result. That too was discontinued.
Colestid as you know is an old drug and not without side effects but has been tried. The most common side effect is constipation, not a problem for an IBS sufferer. I never observed that particular side effect but at the first blood draw after about 3 months Alk Phosphatase was 60 and GGT was 243. The dose was 2g once or twice a day.
I get results emailed ahead of the followup and ask at the time of the possibility of biliary tract obstruction. Caregiver seemed quite annoyed I asked. I was told not to worry. Three months later 75 and 391 respectively. Again I asked and a different caregiver reviewed my medications list and was told they all flush through the liver - not to worry at these levels. Again I asked about bile obstructions. "Not to worry" was the advise. Two months later an unexplained fever resulted (flu season - I had taken the shot well ahead of this) in another round of blood draws where the levels rose to 142 and 525.
ALT and SGOT have always been steady at about 100 and 38. CBC, BP, nutritional and kidney functions all in the normal range. A week or so later they repeated after the seasonal fever broke and levels were to 146 and 517. They ran a Hep series - all neg. The GGT drop is easily explained with by fever related NSAID use discontinued after it went away.
I have had an abdominal ultrasound and will be finally going for a GI consult in about two weeks. My questions are largely in preparation for this upcoming consult.
I get a little twinge under the right ribcage but nothing severe. This may not be related to cholestid at all but for my satisfaction, these numbers have never been prior to and are clearly escalating hereafter.
1) Do you know how often bile blockages occur with Cholestid?
2) Is it even a rational or logical possibility of consideration?
3) Is it possible to have gallbladder or bile obstructions in an absence of described "gut wrenching pain"?
4) And lastly, I'm running out of options for cholesterol management, I've tried niacin, no-flush niacin, red yeast rice, diet exercise - nothing much budges it. Do you have any safer suggestions than Cholestid?
Thank you in advance.
|Hanging_in_there - Fri Jan 16, 2009 1:51 pm|
data update: good news and bad as they say.
Abdominal ultrasound was clean as a whistle, no obstructions, sludge, stones, enlargement, fattiness, spots, dots… all organs of correct size, shape and found just where God put them.
|Hanging_in_there - Sun Feb 01, 2009 5:29 pm|
The appointment was kept but no paperwork made the trip ahead of me. Many invasive questions were asked at the initial interview, IV drug use, tattoos, history of hep, Epst-bar, etc. - all the typical.
Blood retaken, (sometimes I think they just re-run as much to charge and liability as anything else). I asked specifically asked again about Colestipol and elevated GGT/ALT PHOS. Once again seemed to be discounted.
Even after a clear ultrasound (we know they are not an absolute conclusive test for many issues) but logic (to me) seemed to dictate if the drug had the potential to obstruct the common bile duct, which is of some size, then could it not then obstruct (potentially) the minor ducts and structures as well?
The point of that particular drug was it has a reputation as non-liver involving.
The bottom line for me is these (his tests) were run 2-3 weeks after discontinuing Colestipol and alkaline phosphatase had dropped to roughly to half. GGT was not yet available.
|Hanging_in_there - Mon Feb 02, 2009 6:13 pm|
I went to the GI consult and low and behold, no records made the trip. This was somewhere 2-3 weeks after discontinuing Colestipol/Colestid. The typical battery of GI questions followed in the initial interview, gay sex, iv drug use, alcoholism, tattoos, hepatitis, etc... all answered in the negative.
The discussion did encompass Colestipol/Colestid and bile complications. The doctor seemed to discount this as "...it [Colestipol/Colestid] from what I remember, doesn't work that high in the liver. I works in the digestive tract by blocking the re-absorption of cholesterol."
It only seemed logical that if it could cause blockages in the common bile duct (a fairly large structure established clear by ultrasound), it might bind to bile acids in the minor structures within the liver and be responsible for Elevated GGT and ALT PHOSPHATASE. The doctor seemed to discount this in favor of something viral. I am no doctor and may be following false hope/bad lead but I know I never had irregularities of this nature prior to starting on this drug.
His tests did show a recent exposure to the Epstein-Barr virus and that I tested negative for the hepatitis series. Neither of which were surprising since I informed him of the same having been tested 2-3 weeks prior.
Interestingly though, his tests showed ALT PHOSP had dropped to roughly half (74) in these 2-3 weeks since halting Colestipol/Colestid therapy. GGT values have not been made available.
|Hanging_in_there - Wed Feb 11, 2009 6:10 pm|
1 month after discontinuing Colestipol and ALT is 69 and GGT is 231. GI appointment will be kept.
|S.WILLIAMS,RN - Thu Feb 12, 2009 8:13 pm|
Hey Hanging in there,
You have been so patient in waiting for a reply and so diligent in your informative posts. . You have some information here that Im not sure if I understand.
First, when you ask if colestid could cause a biliary obstruction...I don't think so. When they refer to gastrointestinal obstruction for colestid I believe they refer to the pill itself lodging somewhere where there may be a stricture because of the size of the pill before it breaks down. The pill itself doesn't go up into your common bile duct. The biles salts bind to particles and somehow lower the receptors for the bad cholesterol in your blood thereby lowering your level. The makers of the medication say that a large number of patients had elevations in liver enzymes after taking the medication. This is not uncommon at all.
If you cant take any statins because of the side effects and they are trying you on this then you and your health care provider have to weigh the benefits of medicine related to your family and personal history for cardiovascular disease against the risk of elevated liver enzymes and choose the lesser of two evils. Anytime you take a medication your liver has to process it, It handles every good and bad molecule
you put in your body. If you're exercising and following diet guidelines in addition to the colestid then in a few months you shoul see some results. You mention numerous GGt and alt levels during your time on colestid but not your cholesterol numbers. When these two are elevated together they may indicate biliary involvement but perhaps you're GGt is chronically elevated because of family history and your pre diabetic status. I'm sure you know that alcohol and certain drugs and give a high GGT, but some people always have a high one and they say it can be indicative of future problems. If your ALT dropped by half after stopping the colestid then that was problably the reason for that. So, together they can say one thing and seperately they can say something else. I hope that makes sense to you.
If you had an ultra sound of your liver and gallbladder and you say it was clear and you don't have any nausea, vomiting , pain, intolerance of fatty foods, jaundice, itching then perhaps this was partially drug related and you can see if things continue to stabalize without the meidcation in your system. Are you taking a fish oil supplement and vitamin D? Since You have a BMI of 31 I'm assuming that you're healthy weight. Have you ever had a CT scan to look at your liver, do you have a family history of fatty liver?
Lastly, and this is highly unorthidox...I know of a drug that is not a statin but a DMARD, a (disease modifying antirhematic drug) that is actually an anti-malarial called Plaquenil, one of the side effects that is good is that it can substantially lower total cholesterol. I don't know that any doctor would ever prescribe it for this purpose but it can really drop the numbers. Mind you Plaquenil has it's own side effects and risks , one rare one that it can damage your eyes , so you have to have frequent check ups with an opthamologist. It's an interesting point anyway.
Please let us know what the doctor says and again thank you for your patience.
|Hanging_in_there - Tue Feb 24, 2009 7:04 pm|
Fish oil, yes. Is that a bad thing? I believe it reduces likelihood of heart attack having seen a recount of a study where cardiovascular disease was monitored over an extended period of time, the groups were 1) American men 2) Japanese American men and 3) indigenous Japanese men. Cardiovascular disease and death rates were similar among groups 1 and 2 and lower compared to the latter. I have taken fish oil for years now. Regularly consume olive oil just in cooking and maintain a normal BP.
I am virtually the sole family member older or younger that does not have hypertension. The youngest brother has even had cholesterol test(s) fail due to the triglycerides being too high to even measure. For a fat old man, I'm hanging in there ;-)
My last values were in December of Tot:256, LDL:173, r:5.4 Tri:178, and you mentioned the pre-diabetes, I monitor/keep and eye on things daily A1C has slowly crept up to a whopping lifetime high of 5.9. But there is weight gain (not sudden but steady to BMI 33). That could have some effect.
GGT is sensitive to alcohol and I do have a beer occasionally but quite honestly, its hard to keep a eyeball on carbs and drink beer too - so it is very moderated if at all. It isn't the carbs but the alcoholic that bangs on the GGT I understand, it is just they are a package deal.
I'm due back at the GI in a week and will see what he has to say.
Thanks for the reply. It just may be he has to either find something else for cholesterol management, we accept as is or he finds something else hinky.
|Hanging_in_there - Sat Mar 28, 2009 10:33 am|
I'm not sure if this thread has any value but I am posting at least this one more time. Perhaps it serves beneficial to patients who may fear the worst upon utterance of the subject of potential liver disease.
Discontinuing the Colestipol halted the steady linear ramp in elevating GGT/ALT PHOS and after apx 4 weeks both flattened. Focusing on GGT it settled in 240-250 over a few more samples.
I finally conceded to a CT guided biopsy. No matter how much mental prep was done, nothing could ready me for the "simple" procedure. I did check out the core, quite nice by the naked eye - uniform in color is no guarantee but it is always a good sign. No black or white in it nor did it break after extraction. Time will tell.
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