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


05-03-2014, 03:47 PM   #1
MomRocksOut
 
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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.

~Amy
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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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

From:
http://arthritis.about.com/b/2008/06...s-patients.htm

So need to ask my GI about LDL
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05-03-2014, 05:28 PM   #3
xmdmom
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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
Tesscorm
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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.
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05-03-2014, 08:57 PM   #5
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05-03-2014, 10:30 PM   #6
DustyKat
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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
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05-21-2014, 12:40 PM   #7
xmdmom
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Have you heard back from the lipid doctor or repeated the test?
05-21-2014, 01:49 PM   #8
MomRocksOut
 
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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
xmdmom
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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
MomRocksOut
 
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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
MomRocksOut
 
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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

~Amy
Son with Crohn's on remicade since July 2012
06-17-2014, 07:52 PM   #12
MomRocksOut
 
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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.

Amy
06-19-2014, 07:58 PM   #13
kimmidwife
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Sending prayers his way!!!
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