28 years old. IBD, Liver dysfunction A... - British Liver Trust

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28 years old. IBD, Liver dysfunction ALT 289, Dr wants me to cut antidepressants to see if it lowers ALT, not sure if this is normal

Yosaron profile image
23 Replies

Hi everyone I’m 28 years old, non drinker. I am not asking for medical advice but know there’s a lot of people on here who have probably been through similar issues

I had an ultrasound about 3 years ago due to ALT hovering around 76 they said liver was fatty and referred me to liver clinic but didn’t go which I regret now.

I have microscopic colitis, inflammatory bowel disease diagnosed in 2018 with colonoscopy, which im not under treatment for either. I have been feeling terrible for years but never got it sorted due to my depression. I had a course of budesonide for my colitis when I was first diagnosed and I felt like a new person again but once it ran out symptoms came back and I’ve been feeling crap for a years.

Fatigue all the time, no appetite, sleeping 12 hours, major digestive problems so dr did blood tests as matter of course and gave me an urgent referral to gastro again to get my microscopic colitis under control. Stool test came back high inflammation. For some reason gastro was insistent on doing another colonoscopy and refusing to give steroids because “lymphocytic colitis should be mild we need to check for crohns or UC” and since steroids would affect the colonoscopy outcome, despite identical symptoms as I had at diagnosis, i now have to wait 3 months now for probably rediagnosis of same issue to get treatment for my IBD while feeling like crap as all tests are showing inflammation is active (high fecal calprotectin, high igA antibodies).

To mine and GPs surprise blood tests also showed ALT 253 which dr was very concerned about, ordered repeat week or so later and it went up to 289. Clotting normal, no hepatitis virus.

Other test showed high igA antibodies but dr said this is likely from bowel disease, not liver, and waiting for coeliac antibodies and smooth muscle antibodies.

Doctor thinks it is my medication stressing my liver as they don’t have another explanation. They want me to cut my Mirtazapine dose in half, which I’ve heard is horrendous to come off, and also want me to stop taking my ADHD medication if possible and doing another test in a week but I’m worried my mental health is going to suffer and I’m already nervous about all this .

The main reason I was able to go to the doctor this time is because the medication made my anxiety bearable. I was in a terrible place and my mental health is primary reason I’ve never followed up on health problems in the past I just didn’t have the energy or mental fortitude to deal with the uncertainty around it.

Feeling bummed out. I understand they want to find out what caused it but we don’t even know if that’s the cause of the problem and I’m concerned about mental consequences of it. I am wondering if they just want to take some pressure of my liver for a bit to see if results normalise but I’ve never heard of anyone being asked to do this on the forum normally it would be more investigation first surely. Part of the problem is I haven’t had blood test since 2018 so we have no baseline to refer to and all medications I am on were started after 2018 blood test.

Got an ultrasound of liver tomorrow due to a cancellation. GP hinted they will probably send me to liver clinic and give me a fibroscan as well and maybe biopsy if it carries on. More bloods next Tuesday.

I’m glad they’re taking it seriously and being pro active but I am concerned about cutting my meds like this. I agreed to it to see if it helps, but a few months ago I was actively suicidal and it’s only when I got to the highest dose of Mirtazapine recently that my mental health started to level out. I was on 30mg dose until about a week ago so 45mg dose probably not settled properly which I am hoping makes things a bit easier in terms of lowering it.

I am worried that my ALT is almost 300 at such a young age but I feel NASH is probably more likely cause than meds and it might be unnecessary to go through all this only to find out it had nothing to do with it! Or it lowers by itself and they say yes it’s because you lowered Mirtazapine, let’s take you off it, when it would have lowered by itself anyway.

I don’t know if I should challenge my doctor a bit more and ask to wait til things are a bit more conclusive? Or is this normal to try and get enzymes down ASAP? I have read reports here of people with ALT above 300 for ages and Drs not really interested whereas mine are acting like it’s an emergency, ultrasound in a week etc when most other liver results appear normal. Bilirubin normal, only bad one was ALT at 253 and then 289 based on 2 tests roughly 2 weeks apart.

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Yosaron
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23 Replies

Why did depression stop you finding out why you felt so terrible for years? It seems to me you only seek help when your depression and anxiety kicks in. Wouldn't it have been more sensible to have addressed your physical illnesses at the time, you would have been tested and treated and recovering and would have been prior to the pandemic. You wouldn't now have to wait 3 months to see specialists and you wouldn't now be suffering mentally. It is your responsibility to address physical symptoms as and when they occur. Seeing your doc about mental health issues as a priority is usually faced with medication which yes, has a detrimental effect on your internal organs. I think your doc is doing a good job for you. The rest is down to you.

Yosaron profile image
Yosaron in reply to

It stopped me seeking help because I didn’t have the motivation to. Once the depression was treated I decided right I need to address these issues because they’re a big factor in why I feel like crap all the time and I actually had the self esteem to think I deserve treatment like everyone else. I wouldn’t go to the doctor when I am in the midst of a depressive episode because by the time I’m out of bed I have used up all my energy for the day, so even eating a few meals and trying to hold down my job would take everything out of me. In fact part of my mindset would probably be that I deserve to suffer this physical illness as it's some sort of punishment for being a terrible person. It sounds ridiculous to me now but having been in that place just a few months ago it's not really that remote of a possibility that the depression would resurface if we go messing about with my meds and I really don't want to end up back in that position mentally.

in reply to Yosaron

Thanks for the explanation

Anxiety anonymous 03444 775 774

Kristian profile image
Kristian

Hi Yosaron,

It can be common for medications to have an adverse effect on the liver, especially if you are taking relatively high doses. Its therefore pretty standard for doctors to suggest you stop or lower any medication you are on to see if this could be the cause of your abnormal test results. Diagnosing liver disease can very much be a case of check all the possibilities to exclude all the more common and obvious causes. So your doctor is just following the normal practice here.

It does look like your doctor really has your back with this one. I'm sure if you explain your concerns with them he will be able to take those into account. I think in a way he is already doing this by only asking you to reduce your meds rather than stop them. But do let him know your concerns.

Good luck

Yosaron profile image
Yosaron in reply to Kristian

Thanks, you were right.ALT came down from 289 to 208 in about a week by cutting the dose in half, we are reducing Mirtazapine further and keeping an eye on it. It's going in the right direction at least.

I also had an ultrasound and I have a severe fatty liver, they are going to refer me to the liver clinic for that and I've already changed my diet. Started walking to the shops every day for the days ingredients, which kills 2 birds with 1 stone in terms of exercise and cooking fresh food with lots of vegetables. I was eating takeaways or oven pizzas pretty much every night.

Kristian profile image
Kristian in reply to Yosaron

👍👍

AyrshireK profile image
AyrshireK

You absolutely must go through with all physical tests and follow up when they are arranged. There could be something going on here that hasn't yet been identified because of the failure to attend clinics and tests. I understand that you've had a rocky road with mental health but you seem to be in a cycle just now of docs sending you for follow up and by not going you are never getting the answers required to start treatment or stop you feeling so ill. Doctors can only do so much and you need to play your part.One thing that potentially jumps out is the auto immune marker together with potential issues with bowel colitis. There is an auto immune liver disease (PSC) that often goes side by side with ulcerative colitis. You need to get the tests done - the ultrasound will be a first step.

Other than the tablets do you have any form of mental health support (CPN or similar) who could help you with coping mechanisms for the mental health side of your life. Obviously if tablets are exacerbating physical illness that's not a long term path you want to go down.

Go through with the tests, get answers, get started on a path of treatment and hopefully feeling better phyically will help you feel better mentally too.

Katie

Yosaron profile image
Yosaron in reply to AyrshireK

Thanks AyrshireK I totally understand and I'm going to see it through this time. One of my concerns is that my depression would resurface and that could make me feel like these health conditions are something I deserve which was one of the main reason I never went to follow ups in the past. It is a ridiculous way to think and I can't relate to it now but it's only recently that my self esteem has got to the point where I feel I deserve medical help like everyone else and don't deserve to suffer. I don't know why I felt like that to be honest. You couldn't convince me otherwise at the time, until my meds got to a certain point and suddenly I snapped out of it, the fog lifted which is when I started tackling the physical health problems again because I didn't want to suffer any more and felt like I deserve the doctors time etc.

I have had mental health support but it's never made a difference for me, unfortunately, the only thing that has is medication. Understand this is the liver forum not the mental health forum but for me I feel it's somewhat intertwined at the moment, as this lowering of meds could bring that back and cause me to suddenly disengage from the health service and feel like I don't deserve their help any more. I'm going through a referall for possible bipolar disorder but that's another story entirely and a lot of hoops to jump through in itself.

This original post was written from a good place mentally believe it or not. I wouldn't even make a post like this 2 months ago because I'd feel like I was wasting everyone's time on here. It's weird how your perspective can be warped like that .

I've considered PSC as a possibility, got ultrasound this morning so hopefully all goes well, I don't think they would see that on there however. I'll update how it goes

Hope you are doing alright yourself

Yosaron profile image
Yosaron in reply to Yosaron

ALT came down from 289 to 208 in about a week by cutting the dose in half, we are reducing Mirtazapine further and keeping an eye on it. It's going in the right direction at least.

I also had an ultrasound and I have a severe fatty liver, they are going to refer me to the liver clinic for that and I've already changed my diet. Started walking to the shops every day for the days ingredients, which kills 2 birds with 1 stone in terms of exercise and cooking fresh food with lots of vegetables. I was eating takeaways or oven pizzas pretty much every night.

bleeny profile image
bleeny

I really get what you're saying. When depression is that bad you feel you haven't got the energy or impetus to sort out physical health issues, also feeling undeserving of care.

My GP thought my raised ALT could be due to my psychiatric meds but fortunately didn't interfere with them and referred me to a hepatologist. After much testing it turned out that I had Autoimmune Hepatitis - nothing to do with my meds at all! I would be very frightened of coming off my medication as it keeps me on an even keel, so I do empathise with how you feel.

Have a chat with your GP before rushing into anything - mental health is just as important as physical. Do attend your appointments though - feeling unwell will drag you down mentally. Good luck and please look after yourself in all ways.

Yosaron profile image
Yosaron in reply to bleeny

Thanks, had ultrasound this morning but got a technician who said nothing so won't know anything until GP gets back to me. Was your smooth muscle antibodies raised? Mine was normal so GP seems to have ruled out autoimmune, if ALT doesn't go down will end up with a referral to hepatologist who can do further investigation. It seems unusual for it to go that high from medication, my GP even said the pharmacist commented that it's very unlikely to be anything I'm taking but regardless they wanted to try lowering my medication. Hoping it's the right choice.

Given that I had fatty liver on ultrasound 3-4 years ago I feel like it more likely that it could have progressed to NASH, In that case major lifestyle changes required which is a bit problematic given the depression, like how do I explain to my doctor that it's a victory day if I manage to eat 2 or 3 bowls of cereal? If they think its meds causing it, okay what if it is.

Without ADHD meds I accumulated almost 20k of debt over the years, which I've managed to get down significantly since starting treatment, but without have no impulse control whatsoever, and have had about 90 days off sick from work in the past year due to depression so could be at risk losing my job. If you said to me do you want to be mentally healthy but die in 15 years, or live another 60 without that I would choose the former in an instant, I am probably catastrophising a bit here but for me the meds have literally been lifesaving. It's not a case of being a bit "down in the dumps" for a bit while they investigate, I feel it's much more serious than that and could start a severe downward spiral, so perhaps I should talk to doctor about whether this is really necessary to do right now.

I did explain to her that my diet is probably the bottom 1% in terms of healthfulness, but she said you could eat only crisps for 20 years and still not have this issue. Should have more info soon.

bleeny profile image
bleeny in reply to Yosaron

Yes, my anti smooth muscle antibodies were raised along with immunoglobulins.

I understand what you are saying about living with mental illness and quality of life - my medication has most definitely been a lifesaver for me and that is no exaggeration. I think sometimes other people don't understand the difference between major depression and mild depression. After all you wouldn't tell a person with paranoid schizophrenia not to take their meds would you? That said, I am a great believer in CBT and mindfulness as well.

Good luck whatever you and the doctor decide upon. I would be interested to know how you get on.

Yosaron profile image
Yosaron in reply to bleeny

It turned out to be severe fatty liver. Not great at my age. They said there is bile duct dilatation but that probably coincidental. Doctor still wants to see if lowering the meds bring numbers down but it sounds like my liver is having a bad time due to the fatty infiltration mainly. I'm being referred to liver clinic where I can find out more in terms of staging.

Hi,

If you are in the UK and would like to discuss this, our nurse led helpline is open 10am to 3pm on 0800 652 7330

best wishes.

Dotyy profile image
Dotyy

Hello Yosaron, I really hear your fear of your medication being withdrawn. I wonder if you would look at ways you can take control of your depression. Believe me there are other ways other than medication to learn to resolve and live with depression. Mindfulness can give you a choice after practice to steer your mind away from depression. It might sound far fetched but it really helps more than you can imagine. Both Adhd medication and some anti depressants can be very harsh on the liver. Instead of worrying about them being withdrawn maybe you could try reducing the dose and working on your depression. ie meditation and reading good books about it. I’d recommend Jon Kabat Zin’s books and Cd. Ted talks. I found finding ways to help myself from reading and the mental discipline of meditation was a far better treatment than any pill. Your at a good place to change things it may not feel like it. All the very best to you.

Yosaron profile image
Yosaron in reply to Dotyy

Sound advice I think DotyyI have actually tried this about a decade ago, the exact one you recommended Mindfulness Finding Peace in a Frantic World by John Zabat-Kinn. I started seeing the world differently after a few weeks, it was like being reborn but then I stopped the practice and thing spiralled again. I think a part of me is self sabotaging, and thought I don't deserve to feel that kind of peace! I don't really know why there is this being in me that is my absolute worse enemy, it tries to trip me up everything I do, every time I find something helpful it will cut me off from it, it bullies me, makes me feel worthless, but at the same time, it's me... how do you love yourself when you are the one causing yourself such distress?

I am one that suffers from thought spirals... incessant ones, so I think there's wise words here. I have always thought of my mind as like a car with a V8 engine but no steering wheel, it doesn't take much for it to go full pelt into a downward spiral for no reason whatsoever and crash into a brick wall.

I have had therapy, CBT, everything NHS can offer but it doesn't really make any difference for me. I got autism diagnosis at 25 which explained a lot in my life, I think this may be one cause of being prone to obsessive thought spirals, and therapy and such is designed for people who are neurotypical because they have different priorities and such from ones on spectrum. To me therapy was talking about irrelevant things, or making me do things totally irrelevant to what would make me feel fulfilled or happy. Mindfulness definitely helps, but the cycle of self punishment, I'll be honest it's very difficult to break for me. It makes me do things that are totally against my best interests, and the mental health system is designed for people with different kind of brain structure than mine I have had many therapist who are just baffled by what I say and have no idea how to deal with me. It is what it is.

I hope you are alright yourself Dotyy, and I would advise anyone to listen to this advice because it's not "new age" rubbish it really works and gives you a fresh perspective. Having the patience to just sit with thoughts and not buy into them, is really a skill many people would benefit from

AyrshireK profile image
AyrshireK in reply to Yosaron

I see MIND has some information and sign posts to other agencies and help for people who are on the autistic spectrum and who have mental health issues on top of that. mind.org.uk/about-us/our-po...

I do hope you can get some support and work your way through all your issues. You deserve a happy life and appropriate health care as much as any other person.

All the best, Katie :)

Dotyy profile image
Dotyy

Hi again Yosaron. I’m so glad you have found for yourself the benefits of using mindfulness as a tool for dealing with what can be I have found an insidious depressive way of seeing things. I too know what it’s like to stop practicing meditation and know how quickly my skewed perspective of seeing my life in the world returned to a wholly negative one. Sometimes different therapies aren’t helpful to everyone and it’s not you that are at fault. You have said about being diagnosed with autism and I think you mentioned Adhd. I wonder if you looked into seeing a therapist who is skilled in that area. The Maudsley in London have a department for helping people with those 2 conditions. I think it’s really important, I have a very close friend who suffers with Adhd and I understand what you mean by you not responding to typical therapy. As far as you were saying about your sabotaging behaviour, I know it’s so common with depression that there’s part of your mind always waiting to pull apart and undermine yourself in many different guises. I think rather than trying to irradicate those thoughts it seems more helpful to me to allow them space but to start to view them as a habitual pattern of thought. Along with practicing calm and focus they can begin to feel more like a choice of thoughts as your self becomes stronger. They say it’s like a muscle laying down new ways of thinking and feeling I reckon it’s true. Well thanks for your wishes, I too have struggled with self discipline and practice even though I have felt the liberation and benefits of mindfulness. It’s a daily decision. All the very best to you.

Yosaron profile image
Yosaron in reply to Dotyy

ALT came down from 289 to 208 in about a week by cutting the dose in half, we are reducing Mirtazapine further and keeping an eye on it. It's going in the right direction at least.

I also had an ultrasound and I have a severe fatty liver, they are going to refer me to the liver clinic for that and I've already changed my diet. Started walking to the shops every day for the days ingredients, which kills 2 birds with 1 stone in terms of exercise and cooking fresh food with lots of vegetables. I was eating takeaways or oven pizzas pretty much every night.

I don't know if it's a placebo but I have a lot more energy already after a few days of eating vegetables and fresh cooked food. I think getting out of the house helps too, having been working from home for over a year and not going out much.

I found cooking has put me in a "flow" state and when the meal came out tasting good, with healthy ingredients it gave my self esteem a boost. So maybe for me cooking will be my meditation :)

99problem profile image
99problem

I was diagnosed with an enlarged fatty liver at 28 as well. Still on the road to a definitive diagnosis but I will tell you that the first thing my doc told me to do was diet and exercise. He then took me off of lexapro which I was on for about a year . It’s best if you focus on natural ways of healing over chemicals and medicines. They are usually short term answers with long term negative effects. I’m not trying to diminish any anxiety or depression you may have , just offering an alternative that will surely work better for you . I still get depressive and anxious episodes but people with health problems tend to deal with that from time to time . Do yourself a favour and be more mindful of getting in some fresh air daily and drinking plenty of water. Sorry if this seems like a generic answer but this stuff works . Best of luck

Yosaron profile image
Yosaron in reply to 99problem

ALT came down from 289 to 208 in about a week by cutting the dose in half, we are reducing Mirtazapine further and keeping an eye on it. It's going in the right direction at least.

I actually feel better at the lower dose of the medication now. It was making me feel fatigued all the time.

I also had an ultrasound and I have a severe fatty liver, I'm 28 like you, they are going to refer me to the liver clinic for that and I've already changed my diet. Started walking to the shops every day for the days ingredients, which kills 2 birds with 1 stone in terms of exercise and cooking fresh food with lots of vegetables. I was eating takeaways or oven pizzas pretty much every night.

I don't know if it's a placebo but I have a lot more energy already after a few days of eating vegetables and fresh cooked food. I think getting out of the house helps too, having been working from home for over a year and not going out much.

I found cooking has put me in a "flow" state and when the meal came out tasting good, with healthy ingredients it gave my self esteem a boost and I felt pretty happy for the rest of the day that I'd achieved something. So maybe for me cooking will be my therapy.

99problem profile image
99problem in reply to Yosaron

Beautiful news that you are feeling more energy and eating better . Placebo or otherwise , what matters is how you feel . Happy to hear you are moving in a good direction .

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