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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

NHS test results - what would you do?

40 replies

GreenLightRedLight2 · 15/11/2024 14:15

TW: Bit Graphic and long (apologies!)

Earlier this year, I became very unwell. One morning, I woke up and was violently sick—both ends (I know, yuck). Initially, I thought it was just a stomach bug. However, my symptoms quickly became concerning:

•	My stools turned white—not pale, but completely white like chalk.
•	This progressed to diarrhea that was unlike anything I’d ever experienced: clear liquid, like water, with absolutely no substance.
•	This went on for four days.

I felt terrible, looked deathly pale, and visibly aged. A pregnancy test came back negative.

I contacted my GP and got an appointment with the paramedic at my practice. It was actually the most thorough check-up I’ve ever had. During the consultation, I shared my family’s cancer history, which includes multiple cancers. Most recently, my mother passed away. Her diagnosis came so late that cancer had spread throughout her body (stomach, liver, pancreas, and more), making treatment impossible. We don't know where the primary cancer was located.

The paramedic ordered a range of tests:

•	Bloodwork: Full blood count, liver function tests, CA125, celiac, and diabetes tests.
•	Urine and stool samples (stool collection was particularly challenging).
• FIT test (for blood in the stool) 

When the results came back, everything was within normal ranges except for:

•	ALT (liver enzyme): 105 u/L (normal range: 0.0–35.0).
•	Serum total protein: 78 u/L (close to the upper limit of 80.0 but still within range).

I'm in my early 30s, and given my healthy lifestyle (occasional wine, good diet, regular exercise, normal weight), the high ALT result alarmed me.

At my follow-up, the GP initially said my results were normal. I pointed out that I've seen my results in the NHS app, and I know I have elevated ALT, I expressed my concerns given my family history. Only then did the GP perform a physical exam, finding:

•	Extremely tender stomach
•	Back pain

The GP ordered repeat liver function tests, adding AST this time. Results:

•	ALT: 60 u/L (improved but still above normal).
•	AST: 31 u/L (normal range: 0.0–35.0).

The GP told me everything was fine because the ALT had decreased. By this point, my gastrointestinal symptoms had subsided, but I still didn’t feel reassured. I pushed for further investigation and was referred for an ultrasound (internal and external).

The scan showed no issues with my liver, stomach, or pancreas. However, they found a 3cm hemorrhaging ovarian cyst.

When I returned to the GP (was seen by different doctor this time), I was told the cyst was “normal” and to come back only if I experienced pain.

Although my symptoms have improved, I can’t shake the feeling that something was missed. Every time I have abdominal pain or a change in bowel movements, my anxiety flares up. I admit my mother’s illness has made me hyperaware of missed opportunities. She was twice sent home from A&E and told to wait for the letter for the CT scan, despite already having sepsis, which ultimately caused her death. I nursed her at the end of her life in my 20s. Watching her go through that left me terrified of missed diagnoses.

AIBU to think something was overlooked earlier this year? Should I push for more investigations, or is it truly a “wait and see” situation now?

OP posts:
Orangesandlemons77 · 15/11/2024 17:58

I've had a routine blood test come back with slightly high ALT too (around 55) GP told me likely natural fluctuations but will do another in a month. So it seems it can rise and fall.

Turmerictolly · 15/11/2024 18:14

Hall bladder checked?

Turmerictolly · 15/11/2024 18:14

Gallbladder

jacks11 · 15/11/2024 18:54

thatsawhopperthatlemon · 15/11/2024 17:14

Yes, well. My mother died because her GP thought she was a hypochondriac, so when it comes to persistent symptoms and feeling like you aren't being taken seriously enough, then my view is to keep going back and badgering them until you get to the bottom of it. Don't be fobbed off.

But in this case- a marginally elevated ALT in the context of a gastrointestinal infection, with the ALT now falling and a normal abdominal ultrasound- she can badger all she likes but she probably will never get an absolute 100% cast iron guarantee of exactly what caused the issue. The most likely cause is a viral gastrointestinal viral infection causing a transient marginal rise in ALT. She has had a normal qfit and Ca125- strongly suggesting no serious bowel pathology, Ca125 is somewhat reassuring with regards to the haemorrhagic ovarian cyst (which is likely an incidental, benign finding). It’s not being fobbed off in this case.

Letitgoe · 15/11/2024 19:00

I had high ALTs after covid and the GP did a repeat blood test and they came down slowly. It quite common after some illnesses they said.

I also have had very similar symptoms OP and they never found anything.

ThatTidyCrab · 15/11/2024 19:33

Have you had any investigations for endometriosis OP (you mentioned ovarian cyst plus continuing abdominal pain).

thatsawhopperthatlemon · 15/11/2024 19:44

jacks11 · 15/11/2024 18:54

But in this case- a marginally elevated ALT in the context of a gastrointestinal infection, with the ALT now falling and a normal abdominal ultrasound- she can badger all she likes but she probably will never get an absolute 100% cast iron guarantee of exactly what caused the issue. The most likely cause is a viral gastrointestinal viral infection causing a transient marginal rise in ALT. She has had a normal qfit and Ca125- strongly suggesting no serious bowel pathology, Ca125 is somewhat reassuring with regards to the haemorrhagic ovarian cyst (which is likely an incidental, benign finding). It’s not being fobbed off in this case.

The thing is, that if the OP does develop symptoms of something else, they could be missed under the fog of all the rest of it. I would always say that if you have concerns, pursue it - no matter how much of a nuisance the doctor thinks you are being. It could save your life.

Don't be my mum, who listened to the doctor telling her she was constipated, and who sent her away with Fybogel and told to eat bran flakes. She followed the doctor's instructions religiously.

As it turned out, Fybogel and bran flakes were not the treatment she should have had for her bowel cancer.

holjam · 15/11/2024 19:46

Has your gallbladder been checked?

DamnUserName21 · 15/11/2024 20:21

As PP said, get GP to provide a letter for private gastroenterologist via your insurance. Always seek a specialist opinion where you can.

jacks11 · 15/11/2024 20:40

thatsawhopperthatlemon · 15/11/2024 19:44

The thing is, that if the OP does develop symptoms of something else, they could be missed under the fog of all the rest of it. I would always say that if you have concerns, pursue it - no matter how much of a nuisance the doctor thinks you are being. It could save your life.

Don't be my mum, who listened to the doctor telling her she was constipated, and who sent her away with Fybogel and told to eat bran flakes. She followed the doctor's instructions religiously.

As it turned out, Fybogel and bran flakes were not the treatment she should have had for her bowel cancer.

And where does that end? Absolutely, if symptoms don’t resolve with the treatment given, or resolve and return or new symptoms occur, then go back to see your Dr.

But, in this case the patients symptoms are improving, blood tests are improving (now virtually normal), scan shows nothing overly concerning. Tests looking for bowel pathology (a test which is viewed as being quite sensitive for any pathology) is very reassuring. Where do you draw the line? Full body CT scan? What if that shows nothing concerning, where do you go then? You are beginning to stray into over investigation territory, which carries risk of harm in itself (and issues with misuse of resources).

we are seeing this more often- I’m not a GP, but I can see it in our referrals and in patients who attend clinic- patients are concerned about results that they can access (which I don’t have a problem with, in and of itself) but do not understand/do not fully understand the results they see (or misunderstand them in the context of their case). They read all sorts of things, are told things by well meaning friends or relatives or online- and then cannot be reassured. This leads to pushing for unnecessary investigations- which is problematic on both an individual level and at a service level. I get that if someone you know has had a serious diagnosis missed/misdiagnosed, it is natural to be cautious- but at some point you do have to stop investigating based on clinical findings and results, not just going in “feelings”.

in this case, I think the concern arises from lack of understanding of what is a concerning ALT rise, and why that might happen. This has lead to anxiety, now ongoing, despite thorough investigation. It’s time to wait and see how things go. At most, a further blood test in a few weeks to ensure trend with ALT continues. And if you were being absolutely belt and braces, possibly consider a further scan to check resolution of haemorrhagic cyst (depending on size of this, and local protocol).

thatsawhopperthatlemon · 16/11/2024 10:22

"And where does that end? Absolutely, if symptoms don't resolve with the treatment given, or resolve and return or new symptoms occur, then go back to see your Dr."

Where can it end? In my mother's case, in her premature death, that's where.

Your're still not getting it, are you?

Doctors do not always listen to people with health anxiety, or a complex medical history when new symptoms appear. They can assume that the patient is making a fuss, and it is the same old problem as before. Let's face it, those patients are no less likely to be suffering from an undiagnosed serious condition than anyone else. But they are labelled as a hypochondriac and a worrier, and are not taken seriously enough. Which is why, as I already stated, people should keep going back, and going back, until their concerns are properly investigated.

This is not specifically in relation to the OP's situation, but there could be other people reading this whose lives might be saved if they stick to their guns and refuse to be fobbed off.

owlexpress · 16/11/2024 10:48

@thats
@thatsawhopperthatlemon PP already said people should go back where symptoms persist or worsen. That's not the same thing as constantly asking for investigations where your symptoms have actually resolved or improved. She does get it. Obviously your past experiences are colouring your judgement, understandably. But as a HCP, and also as a patient who suffers from anxiety and OCD, that underlying 'something is wrong' feeling very often is a symptom of anxiety rather than a physical issue. Not always, before someone corrects me and starts talking about feeling of impending doom, etc. That's different.

thatsawhopperthatlemon · 17/11/2024 14:03

owlexpress · 16/11/2024 10:48

@thats
@thatsawhopperthatlemon PP already said people should go back where symptoms persist or worsen. That's not the same thing as constantly asking for investigations where your symptoms have actually resolved or improved. She does get it. Obviously your past experiences are colouring your judgement, understandably. But as a HCP, and also as a patient who suffers from anxiety and OCD, that underlying 'something is wrong' feeling very often is a symptom of anxiety rather than a physical issue. Not always, before someone corrects me and starts talking about feeling of impending doom, etc. That's different.

The point I am still trying to make is that sometimes, when a person develops some new symptoms, they go back to their GP and the doctor assumes the patient is making a fuss, it is the same issue as before, and treats it as such. The sad truth is that sometimes the GP overlooks the fact that the new symptoms, although presenting in a similar way, are actually something else much more serious, and they are not properly looked at or investigated. Sometimes with ultimately fatal consequences.

Orangesandlemons77 · 17/11/2024 14:51

thatsawhopperthatlemon · 17/11/2024 14:03

The point I am still trying to make is that sometimes, when a person develops some new symptoms, they go back to their GP and the doctor assumes the patient is making a fuss, it is the same issue as before, and treats it as such. The sad truth is that sometimes the GP overlooks the fact that the new symptoms, although presenting in a similar way, are actually something else much more serious, and they are not properly looked at or investigated. Sometimes with ultimately fatal consequences.

Yes, I have had this before. I know what you mean.

I find the new e-consult system quite helpful, to explain symptoms etc. I also find it works quite well if you do what they say and follow up with that, e.g. if the person has been told to see how it goes for a week or so and thren go back to mention that.

Floralnomad · 17/11/2024 14:57

The fact that your ALT has dropped so much would say to me that it’s nothing to worry about . I have raised liver enzymes and have been diagnosed with NAFLD but that would have shown up on your scan .

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