Crohn's Disease Forum » Parents of Kids with IBD » Son has very high LDL level

05-03-2014, 03:47 PM   #1
Join Date: Dec 2012
Location: Utah
Son has very high LDL level

My son with Crohn's has had some raised lines across the back of both knees. Went in to see the GI and the GI ordered a cholesterol test (thinking it could be high level of blood cholesterol finding way out). Anyway, blood was drawn yesterday morning and got a call 3 hours later saying his LDL is 615

GI is consulting a Liptologist and we haven't heard back yet. Thinking my son is not metabolizing cholesterol, but don't know anything yet.

Have any of you had any experience with this? How should I be talking to? Tests needed? He's been on Remicade for almost 2 years and I don't know how that factors in if at all. Just when I thought all was well....... Thanks for listening! I've just been a crazy mess of emotions.

son diagnosed at 11 with Crohn's
Remicade since July 2012
05-03-2014, 04:00 PM   #2
my little penguin
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Join Date: Apr 2012

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A study in the June 2008 Annals of the Rheumatic Diseases suggests the benefit is not long-lasting however and prolonged use of a TNF blockers drug like Remicade may actually lead to an increase in total cholesterol and LDL levels ("bad" cholesterol). Most studies have looked at the effect of Remicade on lipid levels but little is known about the effect of other TNF blockers e.g., Enbrel (etanercept) and Humira (adalimumab), on lipids. More research is needed to further assess the relationship between inflammation and lipoproteins. In the meantime, be sure your doctor is testing your lipid levels periodically


So need to ask my GI about LDL
DS - -Crohn's -Stelara -mtx
05-03-2014, 05:28 PM   #3
Senior Member
Levels that high raise the possibility of a genetic abnormality in cholesterol metabolism. I would certainly redo the blood test to confirm the level was that high, but it does go along with fatty deposits on the knees, called xanthomas.

Does anyone else in the family have high cholesterol? Have others been tested? It is likely to be unrelated to Crohn's; I have no idea if the meds might play a role. In any case, there are effective treatments for hypercholesterolemia. The lipid specialist is the right way to go for answers. Best wishes!
05-03-2014, 08:56 PM   #4
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Join Date: Jun 2011
Location: Ontario

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Amy, I have no advice, just sorry that you have a new concern to worry you. I hope it can be easily treated/resolved.
Tess, mom to S
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-03-2014, 08:57 PM   #5
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
dx Juvenile Arthritis
dx Erthema Nodosum
Bladder and Bowel Dysfunction
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
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EN/EEN- since (1/12/13)
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05-03-2014, 10:30 PM   #6
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
I am so sorry you have to deal with this Amy.

We have no experience with high LDL here, for us it is potentially the opposite problem.

I hope you soon have solid answers and whatever they are it isnít difficult to deal with. Good luck!

Dusty. xxx
Mum of 2 kids with Crohn's.
05-21-2014, 12:40 PM   #7
Senior Member
Have you heard back from the lipid doctor or repeated the test?
05-21-2014, 01:49 PM   #8
Join Date: Dec 2012
Location: Utah
I am waiting to see the specialist. He's out-of-network and we are trying to get it covered since he is the one in the state.

I'll make sure to update once we have some news. Thanks for checking!
05-21-2014, 02:48 PM   #9
Senior Member
If you haven't already, I'd ask the gi and/or family doctor to help cut through the bureaucracy for you.
05-21-2014, 10:13 PM   #10
Join Date: Dec 2012
Location: Utah
I have a health advocate who is handling the insurance side for me. I'm so glad because I have no patience right now!
05-29-2014, 08:14 AM   #11
Join Date: Dec 2012
Location: Utah
Well, now the doctors are trying to work something out. My insurance coverage changed policy this year that their is no "gap" coverage for doctors that are out-of-network, but the only doctor within their specialty in the state. I guess this is going to be commonplace.

Am now looking out-of-state because it would be less expensive to travel and see in-network doctor than pay to see out-of-network here This system is really screwed up.

BTW, the doctors only got involved because when I spoke with my GI's coordinator and she sensed my desperation. The doctors are so far removed from the process and cost. I told her, "I don't have $6,000 to see this specialist and pay 40% after that for further appointments" I really wish in the country we had a list of costs from each facility and/or doctor published for everyone to see. Perhaps this would help bring down costs. Okay- my rant is over

Son with Crohn's on remicade since July 2012
06-17-2014, 07:52 PM   #12
Join Date: Dec 2012
Location: Utah
Well, the entire family had blood drawn today. The lipid specialists are baffled. After meeting with us today, they went a new direction because we weren't what they were expecting. The blood tests are very rare and happening at 4 research labs across the country. Have been told that it will take at least 3 weeks to hear back. I'll keep you posted.

Prayers and good thoughts would be appreciated Can't imagine trying to add statins to our regime, so I'm not thinking about it yet.

06-19-2014, 07:58 PM   #13
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Join Date: Sep 2010
Location: Florida

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Sending prayers his way!!!

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.

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