Liver function tests abnormal

[Razbry]

Diana thank you for posting this passage in your medical life. I think the more we share, the more we learn. Most important of all, it is a good thing to have a community that will listen, support us and help calm our nerves.

 

[DianaCox]

After not taking vitamins A and D for two weeks, I did my repeat bloodwork (including tests for various hepatitis viruses, which I expect to be negative, and autoimmune markers). I'm hoping they come back normal and that the high liver enzymes were the result of taking too much vitamins. I don't actually expect that to be what happens, though, since I've been taking the same level of vitamins for at least a couple of years, and both of my vitamin A and D levels were at the tip-top of the normal range, well below the toxic thresholds. I will report back when I get the results.

I am sharing this little side journey because we're all going to face medical issues that MIGHT be related to the DS, or might not - but we will all end up dealing with doctors who assume it MUST be related to the DS, so we have to be proactive in getting them to look past our DS to other potential issues.

 

[Susan in Tennessee]

After not taking vitamins A and D for two weeks, I did my repeat bloodwork (including tests for various hepatitis viruses, which I expect to be negative, and autoimmune markers). I'm hoping they come back normal and that the high liver enzymes were the result of taking too much vitamins. I don't actually expect that to be what happens, though, since I've been taking the same level of vitamins for at least a couple of years, and both of my vitamin A and D levels were at the tip-top of the normal range, well below the toxic thresholds. I will report back when I get the results.

I am sharing this little side journey because we're all going to face medical issues that MIGHT be related to the DS, or might not - but we will all end up dealing with doctors who assume it MUST be related to the DS, so we have to be proactive in getting them to look past our DS to other potential issues.

I, too, hope it comes back normal this time , after the adjustments. You're so right, we need to be able to know what is DS related and what isn't and to push the doctors if necessary. Thanks for sharing.

 

[Jbandmmomma]

Thank you for continuing to share -

 

[DianaCox]

Test results are in - and they are better!

My elevated liver enzymes from 1/27 and 1/9:
ALT (SGPT) 274 (was 162 on 1/9) 0-32 IU/L Above High Normal
AST (SGOT) 126 (was 136 1/9) 0-40 IU/L Above High Normal

This time:

LIVER ENZYMES
ALT (SGPT) 145 0-32 IU/L Above High Normal
AST (SGOT) 74 0-40 IU/L Above High Normal

So at least they are going in the right direction!!

And all the rest of the tests were negative. I've send the numbers to the liver doc and asked him what should I do next? Stay off the vitamins A and D for a while longer and retest? Including retesting my vitamin levels?

HEPATITIS
HEP A AB, IGM NEGATIVE
HBSAG SCREEN NEGATIVE
HEP B CORE AB, IGM NEGATIVE
HEP C VIRUS AB <0.1 0.0-0.9 S/CO RATIO

NEGATIVE: < 0.8
INDETERMINATE: 0.8 - 0.9
POSITIVE: > 0.9​

THE CDC RECOMMENDS THAT A POSITIVE HCV ANTIBODY RESULT
BE FOLLOWED UP WITH A HCV NUCLEIC ACID AMPLIFICATION
TEST (550713).​

BILIRUBIN
BILIRUBIN, DIRECT 0.29 0.00-0.40 MG/DL
**PLEASE NOTE REFERENCE INTERVAL CHANGE**

BILIRUBIN, INDIRECT 0.71 0.10-0.80 MG/DL

ANTI-SMOOTH MUSCLE/MITOCHOND.
ACTIN (SMOOTH MUSCLE) ANTIBODY 15 0-19 UNITS

NEGATIVE 0 - 19
WEAK POSITIVE 20 - 30
MODERATE TO STRONG POSITIVE >30​

ACTIN ANTIBODIES ARE FOUND IN 52-85% OF PATIENTS WITH
AUTOIMMUNE HEPATITIS OR CHRONIC ACTIVE HEPATITIS AND
IN 22% OF PATIENTS WITH PRIMARY BILIARY CIRRHOSIS.​

MITOCHONDRIAL (M2) ANTIBODY 4.4 0.0-20.0 UNITS

NEGATIVE 0.0 - 20.0
EQUIVOCAL 20.1 - 24.9
POSITIVE >24.9​

MITOCHONDRIAL (M2) ANTIBODIES ARE FOUND IN 90-96% OF
PATIENTS WITH PRIMARY BILIARY CIRRHOSIS.​

ANA (ANTINUCLEAR ANTIBODIES) SCREEN
ANA DIRECT NEGATIVE

 

[Razbry]

Hooray!

 

[southernlady]

Glad you are heading in the right direction but it concerns me that the vitamins you need to avoid blindness and osteoporosis are required. Maybe a case of causation versus correlation?

 

[DianaCox]

Well, my blood levels of A and D were at the absolute tip-top of normal, and I didn't even take D for the first 5 years, and didn't start taking A until 2 years ago, so I imagine it will be a while before my levels drop too much.

I just talked to the liver doc. We agreed to the following:

• Switch to Aciphex - the Dexilant didn't work so I went back on my Protonix, which I've been on for years, but wasn't working well enough.
• Stay off the Adderall - it really wasn't helping much anyway, and obtaining the scripts for it here in AZ is a PITA - have to get a NEW script every 30 days.
• Start back on my A and D but at about half the amount I was taking (10-> 5 50K/week of D; 3-> 2 25K of A), retest liver enzymes in 3 weeks or so, and also test for vitamin A and D levels.

Sounds like a plan, Stan.

 

[aaa]

I'm glad you two have a plan. I've had to change some vitamin levels as well, recently, due to some unwanted results. I'm waiting to post about them till I have a long enough test period to be sure it was them.

As long as you're being re-tested soon, this sounds like a good idea.

 

[DSRIGGS]

Glad to hear things are moving in the right direction.

 

[writegirl]

What a journey you've been on with this @DianaCox--I'm just catching up on reading this thread now. Thank you for sharing all of this. I'm glad things are improving!

 

[DianaCox]

OK, I stayed on the half dosage of vitamins for a while (cut back on the K1 and K2 as well), and finally retested:
Date AST (0-40) ALT (0-32) Comments
1/9/17 136 162 Initial appointment

1/27/17 126 274 Recheck

2/20/17 74 145 After stopping Vit A, D, K1, K2

5/18/17 48 184 After resuming ½ dose of Vit A, D, K1, K2


My GI doc doesn't think a liver biopsy is necessary. However, he wants me to lose 20 lbs. I'm at about 168 now. I will try to get more exercise, and if weight loss happens, it happens.

I'm not too worried. The Aciphex is working about as well as the Protonix did - I still wake up in the early morning hours and barf occasionally (~twice/month), with nothing in my stomach and it doesn't feel particularly acidy - I'm just nauseated for some reason. I hate it - but I'm not sure it's an issue worth investigating much further. However, sometime in the next couple of months (since I've met my deductible and the new plan year starts Sept. 1st and what else is fun to do during the summer in Phoenix?), I'm going to have that UGI I was supposed to get a couple of years ago and never did - it's what you do when you take high doses of PPIs.

I had even talked the GI doc into doing both a UGI and colonoscopy in the same "sitting" (and I made him promise to do the UGI first!), but it turns out I had badly misremembered when my last colonoscopy was - I'm on the 10 year plan, and it was in 2012. Nevermind - just the upper thankyouverymuch.

I just discovered, however, in looking up in our old records when I was due, that it's Charles who is due for another colonoscopy. He's going through some other shit right now (har har har), but I am going to get on him soon to git 'er done. He's not going to be happy about it (he had polyps, so he's on the 5 year plan).

 

[Charris]

well you guys know the first time I was malnourished they put me in the liver transplant list. IF it would not have been for @Spiky Bugger I'd be dead or still waiting on a liver. Dr. K involved and explained whatever was going on

 

[Millie]

FWIW, I was hospitalized beginning of January with severe colicky abdominal pain. My AST was 400 on admission and 900 the next day. The only abnormality found after extensive blood work, MRCP and triphasic CT scan was biliary duct dilatation/Sphincter of Oddi dysfunction/possible paroxysmal "bowel slipping" (can't remember the medical term he used). Labs eventually returned to normal, after I lived every worst case scenario in my head. I am fortune enough to have my DS surgeon on staff at my local hospital, who oversaw my care. I am following up with serial labs and MRCPs.

 

[Spiky Bugger]

well you guys know the first time I was malnourished they put me in the liver transplant list. IF it would not have been for @Spiky Bugger I'd be dead or still waiting on a liver. Dr. K involved and explained whatever was going on

I just wanted to be in charge of something...and you were too sick to make any sense, so I figured the facility would think
I knew SOMETHING. AND, it probably helped that I told them that their diet was going to kill you. (Also, you're a woman...a short woman...and a short woman of color at that...so you are WAY near the top of the list of people who are going to be ignored by people who don't even realize that they routinely ignore short women of color.)

A few years back, on another board, a woman kept insisting that she couldn't take time off work to get treatment she obviously needed. A couple of us kept nagging and nagging and then she disappeared. We were afraid she died. No, she FINALLY went to the doctor and he threw her ass in the hospital so fast...and kept her there like a week or something.

Often, when we most need care, we are too sick to go get the care we need.