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Author Topic: Metabolic syndrome not mentioned much  (Read 4957 times)

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Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Metabolic syndrome not mentioned much
« on: February 19, 2009, 11:41:21 PM »
Reading through this thread, I fully understand many people's concerns with lipoatrophy and the like.

But I have never seen the other aspect of this mentioned - metabolic syndrome.

Lipodystrophy is the obvious physical manifestation of this, but an underlying issue involves metabolic issues and their many complications.

I am just curious how many people dealing with either lipoatrophy or lipohypertrophy are also suffering from hyperlipidemia?

I know I am and am just curious if others have had problems with this.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Miss Philicia

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Re: Metabolic syndrome not mentioned much
« Reply #1 on: February 20, 2009, 12:05:33 AM »
I guess it depends on how we're defining it, but yeah my lipid panel is dependably elevated every lab test.  However, mine's only slightly elevated and they've never had me do anything about it other than fish oil.  I only have lab results in my apartment for the past 3 years, but they've been like this for I'd say a decade maybe which is around when I began seeing lipo issues.
"Iíve slept with enough men to know that Iím not gay"

Offline Peter Staley

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Re: Metabolic syndrome not mentioned much
« Reply #2 on: February 21, 2009, 09:13:31 AM »
Lipodystrophy and hyperlipidemia often go hand in hand (but not always).  They have for me.  I talk fish oil caps and the highest dose of Crestor to get my lipids to near normal levels.  Hopefully, once better PK boosters come on the market, I can stop taking Norvir and look at reducing/stopping the Crestor.

Offline aztecan

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Re: Metabolic syndrome not mentioned much
« Reply #3 on: February 21, 2009, 12:23:15 PM »
Unlike you Philly, I am fighting the lipids tooth and nail.

Peter, I am on 20 mgs of Crestor and 6,000 mgs of fish oil, plus 145 mgs of Tricor. I now have to alternate the days I take the Crestor because of problems statins cause with my CPKs.

Now, the doctor is talking about not waiting for PK boosters to be approved. He may be switching me to a new regimen that includes Isentress just because of hyperlipidemia.

Lordy, if it ain't one thing, its another.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Miss Philicia

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Re: Metabolic syndrome not mentioned much
« Reply #4 on: February 21, 2009, 12:31:50 PM »
I know Mark, and I'm always sorry to read about what you're encountering.  Rest easy with switching to Isentress.  It will give you great numbers and not have side effects if your experience is like mine and others I know that switched when it came out.   I wouldn't think twice about that.

I realize that you've done numerous regimen swaps in the past 2 years, and certainly I've had periods like this and they do tend to make one's head spin after a while, but of all the meds I've done Isentress has been the least problematic while being the most effective.

I think of you often.

*smooch*

David
« Last Edit: February 21, 2009, 12:34:00 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline minismom

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Re: Metabolic syndrome not mentioned much
« Reply #5 on: February 22, 2009, 07:47:40 AM »
Is hyperlipidemia something that is specifically tested for, or is it a condition defined by constant elevated lipid panel numbers?  Mini began having lipid panels done, and seeing a lipid specialist, when the lab sent a report to her PID saying that her blood was cloudy - around the age of 2.  She's had high cholesterol (especially her LDL's) and triglyceride numbers ever since.  She has a fasting panel done every 6mths (next one is 3/6).  She's on 1000mg of fishoil /day and a dose of Fibersure 2x/day.  The lipid doc doesn't want to start her cholesterol meds because of the effects it could have on her liver.  In Sept, they wanted us to put her on a fat-free diet.  She's female and 8 - fat-free is NOT a viable option.

She does have lipo. It's very obvious to anyone who's seen her (except to her PID).  Do you know the name of the test for metobolic issues.  Granted, Doc should know, but we all know how that's gone so far. :-\ 

Very good points you bring up, Mark.  I've added it to my list of things to discuss.
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Metabolic syndrome not mentioned much
« Reply #6 on: February 22, 2009, 01:29:51 PM »
Hey David,

Sorry if I sound grouchy. I am a bit nervous about this heart thing. Too much family history to take it too lightly.

I'm sure it will be OK, but until I get it over with I will be a bit fixated on it.

Hey Mum

The doc just does the usual, cholesterol and triglycerides done after a 12-hour fast. He also does a liver panel and nowadays always checks the CPKs.

How amenable would Mini be to cutting down on some of the fat, kinda without her knowing about it? You know, like adding fish or something to her diet?

Its a thought.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline minismom

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Re: Metabolic syndrome not mentioned much
« Reply #7 on: February 22, 2009, 06:52:16 PM »
As far as kids go, she has very little fat in her diet.  We don't eat anything fried, including chips.  She eats loads of fresh fruits and veggies.  No sugar - everything is made with Splenda.  Other than the occasional can of soup and Ramen noodles, she doesn't eat processed foods.  Ground meat is 97% fat-free ground meat mixed half and half with ground turkey.  Her bread is a double fiber brand.  We eat lots of chicken and seafood.  I have no idea what else I can cut from her without it doing damage.  According to her lipid doc, fat is needed for brain function. Since she's not real lucky in that aspect, I hate to cut down more.

The lipid panel she has done is fasting.  I'll talk with her lipid doc about the metabolic stuff.

Thanks again, Mark!
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

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Re: Metabolic syndrome not mentioned much
« Reply #8 on: March 05, 2009, 09:55:15 AM »
On Mini's check-out slip / visit summary page for the lipid clinic, there is a blank for the doctor to write the reason the patient was seen in clinic that day.  Next to "Reason", she wrote "hyperlipidemia".  Hmmm, not sure if that's the 1st time she's ever written it or not.  I would have never looked had you not mentioned, though, Mark.  So, thanks.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Metabolic syndrome not mentioned much
« Reply #9 on: March 05, 2009, 10:17:07 AM »
Hey Mum,

It sounds like you are doing everything possible to keep Mim's lipids under control. As a child, she is going to need some fats just to grow properly, or at least that is what my mother told me. ::)

Hang in there.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline HotGreek_STL

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Re: Metabolic syndrome not mentioned much
« Reply #10 on: March 06, 2009, 02:16:21 AM »
As for Metabolic Syndrome,  I was on a drug study using Actos (pioglitazone hydrochloride) for Insulin Resistance Secondary to being on Anti-virals.    It was a really great study through Washington University in Saint Louis, MO!  I had a personal trainer ( I actually learned how to really work out), tons of testing (DEXA Scans, MRI(s), etc)  but the best part was it helped me quickly build up some muscle and improve my ability to metabolize carbs.   I think it helping shrink my super fat neck and fat pad on my back.  I am feeling stronger, have more energy, and I am happier.  My doc is continuing me on Actos and I am even continuing to work out at the gym on my own.    Blood sugars, Lipids, and meds are part of of our metabolic woes but medication strategies along with diet and exercise seem to be part of the solution.

As for Mime,  I hope she is having an active and fun childhood.  It is so important to run and play!  So much of childhood today involves play dates these days.    When I was a child (God I sound old but I am going to turn 50 in October), imagination and a few props made for some terrific games such as pretending to be Captain Kirk, or David Carridine in Kung Fu,  Emma Peel in the Avengers etc.   I hope Mimme gets to see parts of the Old Avengers series when she can appreciate it.  It is dated but it was one of the first series where women were amazingly powerful and equal to any male character.

Peace Out!

Below is my list of medications.  Sometimes I feel like I have enough pills to stock a Walgreen's Pharmacy!

Folic Acid       1 mg TAB      2 TABS BID
Tricor          160 mg TAB      1 TAB at HS
Actos       30 mg TAB      1 TAB at HS

Monopril     10   mg  TAB      1 TAB DAILY
Indapamide     2.5  mg  TAB      1 TAB DAILY
Aspirin       80     mg TAB      1 TAB at HS

Naproxen      500   mg  TAB      1 TAB  BID

Wellbutrin   XL       150    mg  TAB         3 TABS  DAILY

Truvada        200/300   mg   TAB        1 TAB DAILY
Reyataz        300   mg   CAP      1 CAP DAILY
Norvir               100   mg   CAP      1 CAP DAILY
Valtrex        500   mg   TAB      1 TAB at HS   


Claritin       10 mg TAB          1 TAB DAILY
Albuterol        2 PUFFS EVERY 4 HOURS AS NEEDED     

Multivitamin   1 TAB DAILY

"TO SEE WHAT IS IN FRONT OF ONE'S NOSE NEEDS A CONSTANT STRUGGLE!"  GEORGE ORWELL
"TO SEE WHAT IS IN FRONT OF ONE'S NOSE NEEDS A CONSTANT STRUGGLE!"  GEORGE ORWELL

Offline minismom

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Re: Metabolic syndrome not mentioned much
« Reply #11 on: March 10, 2009, 08:52:08 AM »
I've posted these numbers in LW, but I wanted to post her lipid numbers here, too.

Test                                           Sept. 08                                            March 09
Cholesterol                                  183                                                     195
HDL (good stuff)                          44                                                       43
LDL (bad stuff)                             115                                                     122
Triglycerides                                 119                                                     152

These were fasting results - more than 14hrs for the last ones.  Nothing changed as far as her meds and diet, but everything went to pot.  I know these numbers aren't as alarming as other's, but remember, Mim is only 8yrs old.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline GSOgymrat

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Re: Metabolic syndrome not mentioned much
« Reply #12 on: March 10, 2009, 09:32:41 AM »
My last total cholesterol was 183 and triglycerides 238, which for me is good. When I was on Kaletra my cholesterol was over 300 and triglycerides over 1600. I'm on Tricor and fish oil.

Offline Miss Philicia

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Re: Metabolic syndrome not mentioned much
« Reply #13 on: March 10, 2009, 11:20:50 AM »
Mine are usually around this:

Triglycerides - 227
HDL - 29
LDL - 45

All I'm on is 2400 mg of mercury free fish oil.  I've asked my doctor a couple of times if these numbers should concern me and he said not so much.  I was also on Kaletra for five years but I don't have my labs from that, but I would assume my lipid panel was much higher.  Still, it was never high enough where I was put on anything like Tricor, etc.

I've also had 4 HIV specialists during a span of the past decade and not one has ever freaked out about these numbers, though they've always been out of range.  I guess that makes for a surplus of second opinions.
« Last Edit: March 10, 2009, 11:22:52 AM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline minismom

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Re: Metabolic syndrome not mentioned much
« Reply #14 on: March 10, 2009, 01:16:31 PM »
Philly, first, welcome back!  I hope you had a good trip.

Mim's PID never seems to be too worried about them, but her lipid doctor (who'll be dumped as soon as we get an appointment with her new ID) isn't real happy.  When Mim was on Susteva, her numbers were much higher.  Currently, her LDLs are nearly 3x her HDL which is a concern. Her tris took a big swing up and I'm not sure why.

Still, I'm not overly concerned.  She takes her fishoil, she's on as low fat of a diet as I'm willing to put her on, she's on a sugar-free diet, she's outside playing and dances.  There's never going to be anything we can do to make her numbers chart-normal. 

Mum

www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Miss Philicia

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Re: Metabolic syndrome not mentioned much
« Reply #15 on: March 10, 2009, 01:38:56 PM »
I suppose that's where context comes into play -- everyone here posting has some form of lipo, and as a metabolic dysfunction its a given that such patients have an out-of-range lipid panel, so it's a matter of degrees.  My question would be how many HIV+ patients does this lipid specialist treat and whether or not they're looking at the issue in that context.

Outside of the fish oil I take I have to say I don't make any hardcore dietary considerations.  I eat probably better than the average patient, but I still eat things like a cheeseburger if I want to.  I just don't do it that often.
"Iíve slept with enough men to know that Iím not gay"

Offline minismom

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Re: Metabolic syndrome not mentioned much
« Reply #16 on: March 10, 2009, 01:56:18 PM »
You have just raised an very good question, Philly.  Without being able to swear to it 100%, I will go out on a limb and say that I'm 99.9% sure that Mim is the only HIV+ patient she sees and is most likely the only peds. patient she sees as well.  I can tell you that when we're there, I have NEVER seen any other child in the lipid clinic at all. 

This last visit (last week), she insisted we talk to a dietician (who has NO experience working with HIV+ people or has any type of understanding about Mim's meds or thier side-effects).  I told the dietician what types of foods she ate, how often she eats, etc.  The lady closed her book, stood up, and said that she couldn't think of anything else we could do, then left.  The lipid doctor blew a gasket, but oh, well. Lately I tend to have that effect on people.
 
mum

edited because I just couldn't figure out how to make something look the way I wanted it to sound.
« Last Edit: March 10, 2009, 08:08:08 PM by minismom »
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline aztecan

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Re: Metabolic syndrome not mentioned much
« Reply #17 on: March 11, 2009, 01:00:32 AM »
Hey Mum,

Like I said in the other LW thread, Mim's numbers aren't that bad. OK, maybe not perfect, But I would be happy to have them.

As for the doctors you are dealing with, you have more patience than I.

HUGS,

Mark

"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline minismom

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Re: Metabolic syndrome not mentioned much
« Reply #18 on: March 11, 2009, 07:44:21 AM »
Mark, you made me smile.  It's not so much an abundance of patience as it is a lack of choices.  1 PID doctor in the state, no one covering her patients.  I tried getting into the adult ID clinic, but they won't see Mim. 

The lipid doc was most concerned that her LDLs were almost 3x her HDL and that her tris took a huge jump.  They want her tris down to 100.  We were almost there at 119, then they jumped to 152 in 6mths.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

 


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