Howdy. I've just come back from my doctor and been advised that I have an inflamed liver. Doc doesn't know what's causing it or if it is related to MS at this stage. So I thought I would put it out there to the wonderful brain's trust of the forum to see if anyone else has heard of MS affecting the liver.
For the past 6 weeks I have had three blood tests and even an ultrasound on my liver, gallbladder, kidneys and pancrease. The ultrasound was all clear but the blood tests have revealed elevated levels of ALT (nearly double the normal at 99), AST (elevated but bang on highest normal level).
Today, further blood work has revealed high iron with elevated levels of Ferritin (341, normal max is 300) and normal level of Transferrin 2.22 but elevated compared to 2 years ago at 2.08.
So, I are going to repeat the test again in another 2 weeks with the possibility of referred to gastroenterologist. Possibilities may be liver disease ( but unlikely given only slightly elevated levels) or something called hemochromatosis.
Anyway, I've used alcohol very sparingly over the last 6 weeks, gone vegetarian, taking handfull of vitamens each day (minimal iron dose) and still feel like $#$%!
Ok, Alex, .... I am reading your post and everything that you wrote about Iron, Ferritin, and Transferrin are on the script for my bloodwork. I know what Iron is but what the heck is Ferritin, transferrin?? LOL I have no clue and I am being tested for it. I have never ever had that written on a script before
Are you still taking vitamin D? When I first started the medicine, I was concerned that it would cause increase in liver enzymes.
I've had an increase in liver enzymes before, but it was once several years ago. I was worried it was hepatitis at the time, but the doctor told me that it could be from drinking a glass of wine and taking Tylenol and it was not hepatitis (he sent my blood to an additional lab for this screening). I was getting lots of headaches, and I think the Tylenol is what did it to me before. I never had a problem since.
Yes, I am taking the Vitamen D but that has only been in the last couple of weeks so wouldn't have thought it would be the cause of my body storing high levels of iron.
I chose Copaxone because my liver function was already increased and only started last Friday.
My liver seemed to go pear shaped back in May when I was in hospital with my first MS attack. My wife said I looked yellow back then. The fortnightly blood tests over the last 6 weeks have been to monitor the situation but it doesn't look like it's going away. And I even tried a bottle of liver cleanse tablets over the past 3 weeks.
Have you researched autoimmune hepatitis? Maybe your doctor can see if you have antibodies that attack your liver: anti-liver kidney microsome type 1 antibody (anti LKM-1). Have you had an ANA test, too?
I guess when dealing with autoimmune diseases like MS, it is not unheard of to have other diseases. I have hypothyroidism and possible ulcerative colitis caused by autoimmunity.
A friend of mine has hemachromotosis. It does cause her liver enzymes to elevate. Some of the symptoms are similar to MS, eg: fatigue, weakness. However this is due to a genetic issue and is a very different disease process than MS. Her treatment includes have blood removed on a regular basis and being careful not to eat too much iron.
When my liver enzymes elevated due to being on Rebif, my neuro had me stop everything including the Rebif, all supplements, OTC pain killers, and alcohol. My liver enzymes returned to normal, the I started Rebif and only Rebif, and they shot up again. That was how we were sure it was the Rebif and nothing else. I'm surprised your doc didn't have you stop all supplements and all alcohol in order to rule out all possible culprits. Something to consider.
I have hemachromotosis due to a hereditary blood disease called spherocytosis. I have had my spleen removed to help with anemia and symptom relief. My ferritin levels and iron serum levels are abnormally high in addition to some other levels. Due to my splenectomy I also have high platets and other counts. All normal for me.
I was counseled on how to take care of this at a young age. No iron supplements. Iron rich foods are eliminated. I do not eat much red meat. I have a glass of wine maybe three times a week. I have to be very careful in taking OTC medications. I react to them differently than most people. If I take tylenol or ibuprophen for an extended period of time my liver levels will go crazy.
I do not tend to feel like crap (well, aside from this last year) so I'm concerned that there is something else going on with you. Are you in a flare? I'd wonder if you had lupus as well but I would have thought they ran a ANA panel on you when dxing MS. It's one of the first mimics considered (or Lymes it seems.) I would be shocked if they didn't run these blood panels on you.
This is just a theory but since illnesses can trigger a flare is it possible you have Mono or Ebstein Barr? In my experience, those two illnesses can flare up and cause havoc on your body especially your liver. Ebstein Barr has been known to attack different organs similiar to Lupus. I'd ask to run a panel and check those two things if they have not.
Please keep us informed.
Dv, come to think of it yes, I too am a bit surprised that I wasn't told to give up all vitamins (potentially I would never have visited the iridologist witch doctor and coughed up $110 bucks if he had've told me). I will phone to see if I should be doing this in the next two weeks before next test.
Ss that is amazing to find you as a resource with Hemo etc. I go for a couple of days of feeling well then slide into fatigue, limping, headache, tremors at night,plus the usual numbness/tingling/parathesia that never goes away. I have never felt like this before in my life so I had assumed it is all MS related. They told me I don't have Ebstein B but I'm not sure about the Mono.
Thanks, I will do some more research and call the doc and let you all know what the dickens else I've developed,contracted, inherited.
I am not sure if I have the hemochomatosis that is noted on the internet. I've never been told that it could create issues for me or that it is a concern to watch. They just told me to eliminate all iron supplements and watch OTC's. I do. It makes it easy that I seem to be intolerant of them.
One thing; every single one of your complaints above are typical from my flare ups and how I've felt for nearly a year. I've had good days/weeks but I've had chronic issues for 10 months.
I think those are very much symptoms of MS. The headache I had (over the eye that is most symptomatic) SLOWLYy got better. Now, it just seems to start when I've been in the heat/sun/exercise but I can now take something sporadically for it. They may say they are atypical but I had issues with all of those steadily and I've heard similar complaints from others.
I wonder if your flare was bad enough that you are still having residual issues from it. It took me awhile to figure out when I was in a flare and what my new normal was. I am still figuring it out but with each flare I've had new symptoms.
That said, I truly felt sick up until just about a week ago and there are several here who said they felt pretty sick for longer when they were first dx'd. I think I just noticed that the days I felt better slowly increased as time went on. When I relapsed, I felt really crummy again. I have a couple symptoms that I use as indicators now.
The last few days, I feel nearly normal. Nearly. Better than I have for some time. :) That was for 10 months after what I call my "full system melt down." ) It sounds like some issues are overlapping for you but the ones you mentioned above do sound more like MS to me.
I did pull up this article. http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1775
Thank you for the article showing there is a relationship between MS and the liver - the study was done on people who didn't take beta interferons so very interesting. I will show the doc.
I suspected that I was having a second flare about a month ago because I went down hill and a new numbness and tingling sensation started in my left hand that never goes away. Latest MRI recently revealed that I had one new lesion in spine at C4 to C5 in addition to the existing T5 and one in brain on right temporal lobe.
Yes, I guess I am just discovering what a flare is. That sounds gruelling what you've gone through for 10months. There is a risk that because I have two lesions in spine and only one in brain plus the fact that my symptoms don't seem to go away that I will be PRMS, I don't think I'm PPMS but only time will tell.
Anyway, my beautiful wife is away galavanting with her girlfriends for the weekend and I'm playing Mr Mom to our three little beasties. I'm so tired this morning but they bleated for me to make pancakes for breakfast. In my muddle I used self raising flour instead off plain. I laughed because they all said the pancakes were better than mummy's.
Yikes! Are/were you on any other meds over the years long-term?
Glad you are not stressing over this - but I would not go overboard w/the vitees, and the new diet. Keep a list of all you are taking, by chance there is something that can (or has) contribute to this..... -shell
Nope, I've been drug free and fancy footed before May this year. I have always been very active with golf, tennis, running and weights. I even wrote a diet book which focussed on the mental side of losing weight - I called it My way weight loss and sold a couple of dozen books.
I certainly think that if the naturopaths had the cure then I would be getting better but sadly it is all a big fat crock!
No stress really because I am in His hands and his plans are good for me. Of course I do have my down moments adjusting but hey that's where you guys are so important to me. Just to know that there are other human beings experiencing these same weird symptoms. Normal people cannot relate.
I must say that I am enjoying the vego diet. My wife stuffed slices of eggplant with all sorts of things and baked in oven and even the kids went mad for it.
Thought I would give an update on my liver situation. Boy, alot has changed since I last posted. Medhelp has new format, I had my first fall breaking my toe and giving my self a huge corked thigh, and I started a new diet.
I say my doctor yesterday and very little change from the latest blood results. Liver AST, ALT & Ferritin levels all abnormal so doctor gave me a referral to see a gastroenterologist for further assessment.He also gave me a treatment plan to enable me to access 5 freeish session with a physiotherapist. But strangely couldn't justify giving me 5 sessions to see a psychologist as I'm too optimistic apparently. I would have thought being diagnosed with a chronic disease and trying to adjust to the new life would have been enough. Guess I'll just have to act less happy.
I'm over stressing about all this as I now have the answer!! Well, in 3 years I'll be able to tell you if it works or not. If it doesn't then I have not lost anything. I am now on a low saturated fat, no dairy diet as per professor George Jelinek who has managed to stay relapse free for the past 10 years.
Anyway, I am trying to get my head around this new format. It does seem a bit impersonal at first look but as they say try, try again.
I have finally saw the extremely busy Gastroenterologist this afternoon and it appears that , from the latest blood test, my elevated AST and ALT levels since May this year have finally gone back to normal. Whoo hooo!! Champagne anyone.
I apologise in advance for the following negative comments about the said medical professional but I need a winge. The highly paid doctor unfortunately didn't have any clue about what had caused the raised levels or that I even had MS (this was clearly stated in the referral). He didn't seem to think it was related to MS when I asked him but I'm not sure he really knew what MS was either. He babbled on three times about the fact that it wasn't Hemochromatosis to which I replied 'Yes, I know'. Then he asked as I was leaving 'have you hurt your back?', to which I replied 'no, that's one of the effects that MS has on me.' Funny, because today was a good walking day.
I know this is a big call but I do think I may be able to attribute this positive liver result to low fat diet over the last two months. But, no one really knows and I am so very happy not to have to pay this smuck anymore hard earned dollars.
Afterwards, to celebrate I went from the doctor to my massage therapist who gave me the most exquisite hot rock massage in the universe. I'm pretty happy tonight folks and wish you all a manageable, relaxing weekend.
Hot Rock Massage!! What a way to celebrate good news. I am glad to hear that your liver enzyme levels resolved. I am wondering why they didn't do a lipase test to make sure your pancreas wasn't the culprit.
I had pancreatitis recently and the only way we were able to catch it quickly was because I was already in hospital and blood work had been ordered that day showing my very high levels. Next step they checked my lipase and that sealed the deal.
It was a great idea that you did the low fat diet. You are very likely right that the diet got your numbers to go down Keep doing what you are doing.
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