Coping with liver test results - GAD and nosophobia (title edited by MNHQ at request of OP)

[Whatagooddog]

Three months ago, my blood results showed high levels for GGT (62 U/L) and Serum alkaline phosphatase (170).

I am due to have them repeated next week.

I am absolutely terrified and it's consuming me. I'm completely convinced I have liver cancer/failure/disease.

This is all made worse by having GAD and nosophobia - as well as cPTSD and a host of other medical conditions.

I stopped drinking alcohol two months before the last tests - although the GP told me that I wasn't drinking enough to affect my liver anyway.

I'm obese (was 14st 10lbs) but have lost a bit (13st 13lbs) - the weight loss is ongoing, I was told to not do it too fast as that can affect your liver too.

I've tried all calming techniques - I have a psychologist too. Nothing works.

I can barely function, crying and shaking all the time. Has anyone ever had these levels and been OK? I can't think that's even possible but maybe there's a liver specialist out there?

Thank you so much for reading.

The alanine aminotransferase (ALT) test is the most frequently used test for liver disease in primary care. An ALT test result of >100 IU/l is a clear indicator of serious liver disease, but a mildly elevated ALT result (30–100 IU/l) is often ascribed to the use of medication (for example statins) or alcohol, obesity, or, for lower ALT levels (<50 IU/l), considered as part of the normal distribution of test results. As a consequence, abnormal ALT levels are frequently accepted without adequate diagnostic follow-up.12

sounds like your weight is much more likely to be the cause of your slightly elevated IU/I (also known as U/L or units per litre).

https://pmc.ncbi.nlm.nih.gov/articles/PMC3289828/#:~:text=An%20ALT%20test%20result%20of,normal%20distribution%20of%20test%20results.

https://redcliffelabs.com/myhealth/liver/a-comprehensive-guide-to-what-level-of-alp-is-dangerous/#:~:text=When%20the%20ALP%20levels%20go,failure%2C%20or%20severe%20bone%20loss.

This says worrying levels of ALP is 300+. Yours are mildly elevated, which might point to a problem with your diet amongst other things.

https://my.clevelandclinic.org/health/diagnostics/22029-alkaline-phosphatase-alp

I’ve suffered GAD, OCD and depression my whole adult life, as well as having suspected ADHD. the only thing that has really stopped the GAD and OCD (as this is what health anxiety is really, endless rumination on one topic to the point of debilitating anxiety, AKA OCD) has been Sertraline. I started taking half a pill per day two years ago and have never looked back. I really urge you to look into it before you ruin your mental health and waste the healthy years you have x

Hotmess101 I can't thank you enough for replying.

I know that my weight could be a factor, and I'd be delighted if it was that, but as someone who suffers from GAD, you'll know that it's the dark things that hit so much more.

Looking at my results (yet again), I also see that my serum urea level is out of range at 1.4mmol. That increases my thoughts of liver or kidney cancer/disease/failure.

You mention statins - I am actually on atorvastatin (I'm Type 1 diabetic and they're advised for everyone over a certain age).

I did try sertraline last year but the side effects made it impossible to continue. I did feel a bit of a difference with anxiety - I moved from thinking that all these awful things would happen, to still thinking they would but that I was completely powerless anyway. There are a lot of meds I can't take as I have a QT prolongation (I have a lot of things!).

Your last comment is the crux of it - I have lost so many years to this as well as to other poor mental health issues, and I can't see a way out.

I'm really glad that sertraline has made such a difference for you and I hope it continues to do so. Thank you again.

How long did you try the Sertraline for? I could only manage half a pill per day (so half the recommended therapeutic dose) and even then my eyes were like saucers and I felt almost suicidal. I persevered and 10 days in, I woke up suddenly feeling like a new woman. I could never have managed the recommended dose of a whole pill per day! Is that what you tried? Would you consider trying the half pill dose/citalopram or another SSRI?

Listen, two years ago I was spending hundreds on private scans, went to A&E a dozen times in a year sobbing and shaking, convinced I had every type of cancer under the sun. I had a doctor casually mention an incidental finding on an x-ray and ended up hiding in bed for weeks until it was resolved. Ruined birthdays, Christmases, had an unnecessary breast biopsy ffs ‘just in case!’. One of the worst things about this is you start to convince the doctors around you, such is your wide eyed terror! I was sent for loads of tests because I could ‘feel something wasn’t right’ , or because of a tiny aberration in results, much like yours. I made consultants second-guess themselves by asking if they were 100% sure that I was well. It was such a dark time. I can look back in disbelief now but my DH has admitted since that he was close to getting me sectioned (Peep Show style 😂).

Anyway, my point is - this is a miserable way to live @Whatagooddog and I feel so so sympathetic towards you. But please do explore every avenue open to you to beat it. I had years of therapy, and did manage to make a link between the onset of my HA and the serious illness of my baby DD and DH in the space of two years, plus bullying from my boss at work. The total loss of control and panic I felt at these things pushed my mind into a dark place, and I irrationally tried to find control by pre-empting any possible illness in myself. Unfortunately that knowledge wasn’t enough, and I took that final step towards medication, and as I said, I’ve never looked back x

Re long QT, Fluoxetine seems to be a good choice of SSRI btw x

Also re your urea serum results, they are not hugely out of range and could suggest a low protein diet as the cause, as well as slight malnutrition in general (which doesn’t mean stick thin, just means lacking in necessary vitamins and minerals). Anyway, you and I both know you’ll just start obsessing over something else and my reassurance is merely prolonging your HA!

Hotmess101 - again, thank you so much - I'd quite like you to come round my house now and talk some sense into me!

I started on 25mg of sertraline and went up to 150mg in stages, but it actually made me faint (broke my ribs at one point), and the stomach issues were beyond belief. I seem to always be in that bit of the warning leaflet that says 'very unlikely side effects'! I'll look into fluoxetine though.

What you say about how you were resonates so much. I have a fantastic GP but there's only so much she can do, and only so much time she has to hear me say the same things over and over again. Psychiatrist that I've had for past three years has damaged me a lot (the ones before that were a mixture), psychologist is lovely but I feel that it doesn't look at what I can do now, when I'm in it.

You're also absolutely right that it's all linked to a loss of control and powerlessness, sheer panic. I don't even recgnise myself at the moment, well for years really. CBT hasn't worked, nor has EMDR, nor have lots of medications, lots of talking therapies. I have diazepam and zopiclone but that's not the answer for the rest of my life.

From the outside looking in, I have a perfect life - but this colours everything.

I really am so grateful to you. It's oddly comforting to hear you describe how you were and definitely to hear that you're on the other side. I hope your DC and DH are well now.

If you live anywhere near the Welsh borders @Whatagooddog I’ll jump in my car 😂 there’s more sheep than people round here though so I’m guessing not…!

DD and DH both well now thank goodness, thank you for asking. Ironically I’ve had a sore throat for the past 10 days, and while admittedly I have been googling (I’m only human!), I’m actually willing to believe that it’s a bad cold/tonsillitis/acid reflux from too much ibuprofen and not oesophageal cancer. This is such a humongous step for me, only people who have suffered HA can really comprehend what it means not to be paralysed with fear 24/7.

Have you tried exposure therapy? It’s revolutionary in treating OCD, well it was when I first started treatment for it back in 2008! You ‘pretend’ or ‘admit to yourself’ that you COULD have the fatal disease or whatever it is that you’re scared of. And then you just live with that uncertainty without getting the necessary tests or pursuing a diagnosis:

ERP exposes patients to situations related to their intrusive thoughts that cause them anxiety. The goal of this treatment is for the patient to prevent himself or herself from completing their compulsive behaviors when triggered by intrusive thoughts. The situations that are confronted will intensify over time, until the patient can face and overcome their most feared scenario. Once they are able to stop themselves from responding to their intrusive thoughts with compulsive behaviors, they can experience tremendous relief from the symptoms of OCD.

Obviously in your case you have some results that you are concerned about and so leaving that unresolved as your first taste of ERP is probably a trigger too far, but next time you feel that irrational niggle of worry, maybe you could try the exposure techniques?

Also even though this is majorly contrary to the teachings of ERP 😂 I’ve consulted with our old friend Dr Google and he says that statins commonly cause short-term, totally reversible liver damage… did the doctor mention this at all?

Hotmess101 - sounds quite similar to me but I'm in Scotland!

No, the statin link hasn't been mentioned to me at all - I've been on them for about 8 years now I think, so not sure whether that would be relevant? Will definitely not be Googling that all night . . .

No one has ever mentioned ERP either - have you had that?

That's fantastic that you've managed to do so well with your sore throat, I really mean that. Your posts have been such a great help to me, I wish you all the very best 😊

Step away from Google 🚨 you know you won’t rest until someone with exactly the same results as you comes forward and says they’re 100% well… and then you’ll just start Googling all over again five minutes later!!

I honestly will say with such minor aberrations in your test results, it’s extremely unlikely for you to have liver cancer or failure (and definitely not kidney as your urea would be high not low), your results would be 100s if not 1000s out of range and you would be feeling very very unwell. But away from this, I hope so much you find something that works for you and draws a line under you HA for good. Keep me posted and feel free to PM if you ever need a friend x

Oh sorry just saw your question about me having ERP - I did a lot of research on it when I had an OCD- induced breakdown in 2007/8, and tried some of the techniques on myself, as well as exploring forums on the topic. If I’d had the guts to see it through and sought professional help (rather than crap, free on the NHS, CBT), I can totally see how it could’ve helped me. You really have to push past the need for reassurance though, as that’s the part you’re not allowed to seek, as ultimately it feeds the obsession. You have to get to the point where the problem ceases to mean enough to you to warrant reassurance. Only then can you combat the OCD as you simply don’t feel that same level of dread about living in uncertainty. It’s the whole ‘control’ element again. I find myself utilising the principles here and there now (like with my sore throat this week), but the SSRIs give me that added layer of mental fortitude I was missing before to really see it through x

That's so interesting - I'll definitely look into it. I think I've worn everyone down so much that they'll give me any treatment that might help!

You've been incredibly kind and patient - I might just take you up on that PM offer x

Anytime x

This has been such a heartwarming exchange to read, it's sending me off to sleep feeling comforted that with all the negative stuff we often have on Mumsnet, here we have genuine kindness, empathy and understanding from a poster to the OP, who also acknowledges the patient advice with gratitude. Lovely! I hope you feel more reassured , OP 💐

maimeo - I don't know who Hotmess101 is, but I now want her in my life forever 😂

She's given such fantastic advice and in such a lovely way. There are some really practical suggestions in there, such as the therapy I'd never heard of, and everything was wrapped up in kindness.

Thank you for the flowers and I'm glad you got something out of it too!

@Whatagooddog how are you doing this week? X

Not too good I'm afraid. Blood tests yesterday and results tomorrow.

Have had quite a few panic attacks in amongst the constant crying and shaking. Yesterday, I genuinely wondered if I was going into shock.

I know that I can't predict the future but I am 100% convinced that the call I'll get tomorrow will change my life forever.

Thank you for asking ❤

@Whatagooddog oh sorry I had a busy evening and forgot to check back in. So sorry to hear you’ve been feeling bad 💙

Ok let’s look at this logically - your test results were only marginally out of range three months ago, and the statins you are on are known for causing short-term damage to your liver which can cause these results. Why is it more likely that you have a life-threatening illness or incurable disease? It’s not!

Also would the docs really have been so laissez faire and asked you to repeat tests three months later if they thought something was seriously wrong? No way! They would’ve been doing repeat tests immediately and scan to boot.

Practical advice - two short breaths in whilst pushing your stomach out and one long breath out whilst drawing your stomach back in. Five things you can see, three you can hear and one you can smell. Ground yourself in the present xx

Also are you trying to do that thing where if you think the worst you can somehow ward off bad things? And if you think positively you are ‘tempting fate’? Cos that’s bollocks and doesn’t work so forget that right now!! X

Also maybe think about asking your GP for some propranolol or diazepam for when the anxiety gets too much. I really do understand and empathise, it’s so awful to feel so terrified day in, day out 💙

Absolutely! Someone else gets it!

I do have diazepam thankfully, my GP is very good about that.

I just saw the thing you mentioned about two short breaths, one long, online and have been trying that. These things all help when I'm doing them, but as soon as I stop, boom, I'm right back in it. Absolute wuss.