Been tracking liver health for 7 years, not sure what to do with it

Quantified Self QS newcomers
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Hi all,

Joining from Sydney here. I’m completely new to this community, so don’t hesitate if there are a few things I should know :grinning_face_with_smiling_eyes:

I thought I would give a brief introduction of how I got into self-tracking.

I was diagnosed with Autoimmune Hepatitis about 8 years ago now. In a nutshell, I’ve been tracking my liver enzymes and other biomarkers (CRP, IgG) for about 7 years now. I’ve drawn conclusions as to which foods or which supplements cause my liver enzymes to rise or to drop.

I’ve had 109 blood tests done to this day, most of them linked to a specific intervention to see the effect. With around 20-30 markers at each bloodwork, I have a pretty massive database :smile:

I compiled everything in a complicated Excel format, and made various graphs.

I started this project for my own survival journey, so that I could follow-up all the numbers more easily. (I definitely hit some of the barriers that Steven Keating talks about when it comes to accessing your own medical data…)

I realise I’m in a unique position, I don’t think many or any people with the same illness has tracked that much info. That’s who I am, engineer from background, it’s the only way I know how to understand my health and its progress.

Having had to stop working for a number of years due my health, and with the Sydney living costs, it has been a struggle… That’s when I started to think how I could use the value of my self-tracked data to monetize it maybe? :smile: I tried to reach out to various health gurus or organisations, see if they would be interested in my data. It hasn’t really been successful :sweat_smile:

In the end, I found out about OpenHumans and QuantifiedSelf, which is how I landed here.
I don’t have an agenda. At this stage, I’m just curious what I could do my data that could interest anyone.

Life’s still hard, I work only part-time so still struggling financially and I’m still managing my health everyday.

Keen to see what’s this community is about. Perhaps my own experience could be useful to someone.

And perhaps I could get a few pointers from active members as to what I could and/or where I could go with my own self-quantified data :blush:

Cheers,
OzQuantified

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After a re-read of the original post, I realize I was perhaps too self-pitying.

This wasn’t my intention, sorry about that and the unintended display of feelings. I just wanted to explain the context of how I gathered all these biomarkers on myself.

In any case, I’m still looking for some guidance.

I’m realising now that most topics on this forum are centered around biohacking and self-measuring devices, such as Oura, Whoops etc. And don’t mistake me, I wear one of these too and find the data useful.

I just think that actual blood samples analyzed by a lab, and taken every couple of weeks for over 7 years are a much higher quality type of data.

I think some clear conclusions can be taken from my self-quantified journey. Some food that I reintroduced, or some supplements that I tested, or some vaccines that I took clearly show an improvement or a deterioration of my liver enzymes. A lot of the interventions don’t show major changes, but some are very clear.

Keeping in mind this is still only an N-of-1 experiment, so it’s hard to draw conclusions for a cohort, but isn’t Quantified Self all about N-of-1 trials all of us do separately? :grinning_face_with_smiling_eyes: It doesn’t mean the data isn’t valid.

Anyway, I still don’t know who could benefit from this data. Like, would a lab be interested? an association, a research center, a philantropic group? a health guru with pockets full of money? :laughing:

Maybe what I’m asking is too specific, but hey, I am still new to this forum/community, so any greeting or welcome will be greatly appreciated too! :slightly_smiling_face: It can be a bit daunting to enter a new circle…

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Hello and welcome @OzQuantified! It is good to see another new user on this forum. I think you will find most users here are excited to share and collaborate on various projects.

In regards to your original post seeking advice, I am unable to provide insights into monetization of personal data. But I can assist with advice on how to work with the recorded information.

What data format are your blood test results in? Are they saved in a CSV or PDF file format? Or are they hand written? This information can help others guide you on next steps.

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Thanks mate. Yeah, well, monetization is probably going to be hard. Wishful thinking… :sweat_smile:

But even if I can share to a research center or some place where it’d be useful, I’d be pretty happy.

From year to 1 to 6, they were printed reports. I would get a copy, and enter the numbers into Excel. I take a photo of the report, convert to PDF, and then throw the paper away (I was keeping paper form initially but it started to pile up :laughing: ). Now, they send the report per email in a PDF form directly. So, in short, I do have all reports in PDF format. In my opinion though, the results only make sense if you know what intervention I was doing during that specific period, the reports don’t tell that, only I know. I’m pretty happy with the Excel system I have. It’s not a fancy app or anything but it fulfills its purpose. Although I enter about a dozen markers in the worksheet, the most relevant graphs to keep an eye on for me are the AST and ALT liver enzymes, they speak volumes.

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I’ve been thinking about this and although I realize my advice is not very specific, I think it might contain an idea or two that could be useful.

You have three things that are indeed very rare in combination even among people who are into self-tracking.:

  1. An unusually big dataset representing unusually long term self-tracking..
  2. Technical skill to manage your data collection.
  3. Analytic skills to get meaning from your data.

Because your collection of data about your disease is very rare, you think it might have monetary value. This is almost certainly mistaken, but the reason it’s mistaken might lead you to some things that could have value to people who would be willing to pay.

My reason for believing it is mistaken has to do with the highly personal nature of your data collection. Even though many of the metrics you are measuring may be common in clinical practice, the context of your measurement protocol is unique to your own situation. Even were you to find practitioners interested in N-of-one methods (and these are rare), it’s unlikely that a clinical or academic researcher would trust or understand your records. I think you are going to have to give these records meaning by showing how you’ve learned something useful from them, and perhaps by formalizing or abstracting some of the methods you’ve used so that they could be used by others. The value is as much in the methods.

If you had a convincing presentation that allowed people who had problems with liver function to clearly understand what you learned, some of them might be willing to try these methods themselves. I don’t mean interventions, but observational methods. This could translate into a community or some teaching materials that people would pay for. In my conversations with many people who have used self-tracking to troubleshoot chronic issues, I’ve noticed how common it is to try programs, including paid programs, run by people who have developed these “niche” skills.

Perhaps even more than direct teaching, there is perhaps a service that you could provide in helping people use frameworks for analyzing their self-collected data. There are many frameworks for productivity and business development, but very few in health. I think that with the LLMs coming on so strongly, this could be an emerging area.

Good luck with your work, I just thought it might be useful to hear a few roughly sketched out ideas, even though the challenge, as always, is in the execution

three are very common singly, and there are many people who have two out of three.

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Hi @Agaricus ,

Thank you so much for your response. There are some really insightful inputs and thoughts you put out there, thank you so much for that :folded_hands:

Many of your points are spot on, I agree. I did accumulate a rare collection of data, as you point out, but too specific to me…

:thinking:thinking out loud here, but some of it can be generalised though, some supplements clearly showed their beneficial effects on my liver health. Treatment is still in its enfancy for Autoimmune Hepatitis (AIH), with corticosteroids and immusuppressants as the big guns to basically stop inflammation and shut down the immune system. This is a broad “sledgehammer” approach, disrupting healthy immunity, increasing infection risk, with significant side effects with prolonged use and not ideal for maintenance. It’s been the same standard treatment with AIH since the early 1970s​:person_facepalming:, while many of the more “prominent” or common auto-immune illnesses out there (MS, RA, IBD, SLE, etc) garner a lot more attention and benefit from more targeted approaches (e.g. TNF inhibitors, IL-6 blockers, JAK inhibitors, etc). The latter are like snipers, whereas the former is like a flamethrower. With some of the supplements I mentioned earlier, their active ingredients are used as legit drugs and/or effective adjunctive/accompanying AIH treatment in some countries.

Anyway, in the end though, there already exists quite an abundance of papers proving the liver health benefits of some of the ingredients I’m talking about (although some more “unknown” than others) and I don’t think my adding my small brick to the giant edifice will change much.

I note your points about the methods though… :thinking: and the frameworks, that you think some people could benefit from. I will give it more thoughts.

In the end though, I am quite aware that my health journey is quite a unique one. I’ve gathered quite the amount of knowledge around that illness specifically, and many friends and family members have pointed I could probably write a book or become a coach or something for people in a similar situation. This kind of goes back to your suggestion of monetizing this “niche” experience by offering people with chronic issues a framework. It’s a personal decision in the end, and mine is that I just want to go back to my normal work to be honest. I can probably earn more working full-time as an engineer than spending a year writing a book and creating a business that focuses around my health issue… I just want to move on from it to be honest, I can not imagine spending more time making a living out of this. I like my job as an engineer and if I can manage to go back to full-time and slowly recover my lost savings that way, I think I’ll be happy. So I guess it’s a no when it comes to expanding the “business” and investing an unreasonable amount of time just so I can somehow monetize this health journey. But the time I did spend tracking my health markers, it’s already spent… So I was still curious to ask on specialised forums if there was a way that I couldn’t see, for this data to be sent as it and to benefit someone or some organisations.

I need to spend more time checking what OpenHumans.org is about, I’m not sure if I can share my data there… :thinking: or if there are other initiatives out there, which would welcome an N-of-1 dataset study on liver health :grinning_face_with_smiling_eyes:

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As someone managing quite different but often times complicated health issues, I had been meaning to comment on your post. From the human side … someone less analytical and less diligent with this disease, and perhaps even not able to tolerate the standard treatment for it, could be thrilled to hear of your experience. I have seen individuals create basic websites upon which they discuss their journey and methods (stating clearly it is not medical advice and so forth)–ones that the medical community is not providing but have worked. I don’t know if using affiliate links to the related supplements could support the website cost over time. There is always significant social value to health data that works. I don’t know a thing about the patient demographics for your disease, but especially if it’s rare there are people suffering who might find inspiration in methods or approaches.

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I’m actually developing an app right now, and maybe not your data itself, but your experience while tracking it could really help me. Especially around the gap between tracking and understanding. Did you ever feel like the tools you used (Excel, graphs, etc.) weren’t enough to uncover the full story behind your biomarkers? And were you also using any analogue methods like keeping notes in a notebook alongside your digital tracking? I would love to hear about your experience!

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Hi mate :waving_hand:

Of course, there weren’t enough.

I mean, the markers itself tell a story. Like, AST and ALT enzymes are released in the bloodstream when liver cells die. So, it’s a good biomarker to follow how the liver is doing. Similarly, ESR and CRP are inflammation markers. Etc.

But they mention nothing of the why it evolved the way it did.

From the lab reports, I only get the values, the numbers, which I then entered into Excel and that would create trends/graphs over time.

The story of why the values were increasing or decreasing had to be interpreted though. In some cases, that story could be pretty straight-forward: I start taking Milk Thistle supplements (Silymarin as the main bioactive ingredient) and two weeks later my LFTs (liver function tests) are drastically improved. Well, the story is easy to interpret then.

In many cases though, it required hundreds of hours of reseach and reading on the Internet (research papers etc) to understand the illness and how to approach it and what could have an effect etc.

Essentially, that’s pretty much why you normally need a doctor to interpret results! :grinning_face_with_smiling_eyes: You need that deep knowledge to understand what ‘s going on.

Nowadays though, I fill like AI could fill the gap on many aspects. I used to spend so many hours reading papers, first to understand how the liver works, how the immune system works, what the common triggers of autoimmune illnesses are, etc. Then, for each food or supplement or intervention I would hear or read about, I would research that specific topic in depth. Many “popular” remedies were “snake oils”, like health trends but not supported by peer-studies and such. Some though, sometimes, were extremely promising and supported by many studies.

Had I had AI at the time, I think my research would have drastically sped up.

Nowadays, I’m still testing but I take supplements in combination, not just testing them separately. And I do use AI a lot to interpret the results. Because some supplements that I knew for sure improved my liver when taken individually, when combining them with other supplements, the results were different… And using AI definitely helps me understand the interactions at play better. It’s a great tool in speeding up research.

So, for your app, I would suggest adding AI to interpret the results. That could greatly help.

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Thank you so much for sharing this so openly and in such detail! What you describe actually highlights the exact gap I’m trying to focus on: the fact that the numbers alone are never the full story. There are usually far more influencing factors than we realize, and the “why” behind changes is often much more complex. Even doctors can sometimes miss these correlations due to time constraints, fragmented data, or simply because not everything is visible at once.

This is also where I completely agree with you about AI. As you said, when you ask the right questions, AI can surface factors you may not have even considered. Things like weather and air quality, humidity, sleep quality, stress levels, travel, daily activity, caffeine or alcohol consumption, hormonal cycles, and even timing of meals are often overlooked, but they can have real relationships with biomarkers. When these are analyzed together, the insights become much more meaningful.

Your experience actually reinforces why I believe this approach is so important. This kind of real-life insight is very valuable to me and my project. Thank you again for taking the time to share your experience!