TPN and Blood Tests (update)

I’m sorry it’s been so long since I’ve updated my blog. I’ve had a busy year, but May is Ehlers-Danlos Syndrome Awareness Month and there are two health issues I really should write about. Unfortunately, the first story isn’t very nice and I’ve been reluctant to sit down and write about it.

In March 2023 I wrote a blog post called ‘TPN and blood tests’ (click to view), which explains how people like me who are fed by TPN (intravenous nutrition) need regular blood tests, and how my blood test results were usually abnormal. Since 2010 many blood tests showed I had a low red and white blood cell count, and usually low platelets. In 2021 I also started getting odd liver function results. TPN can cause disturbances in your liver function, so the results weren’t a shock and actually weren’t too bad. A liver hormone called ALT was 81 (normal range 1-50 U/L) and ferretin, which is a sign of inflammation and possible liver damage was 871 (normal range 25-200 ug/L).

Over the next two years my ALT and ferretin levels were usually a bit abnormal, then in May 2023 they jumped quite a lot higher (ferretin 1473). I was referred for a liver ultrasound scan which I was told was precautionary and not really a concern. Due to Ehlers-Danlos Syndrome (EDS) I get quite bad joint pain throughout my body and have to organise my schedule carefully to manage my pain levels. I was given a date for the liver scan which was unfortunately the day after another hospital appointment in London. I can’t attend two appointments in two days and the London appointment in my view was more important. I had to postpone the liver scan, and a second date I was given as it also clashed with another hospital appointment (I do have quite a few!)

I was given a third scan date, but woke up on the day with very bad joint pain and couldn’t attend. A routine blood test showed my ALT level was normal (47). I wasn’t sure if I still needed the liver scan but it finally happened in January 2024. It showed a 17mm mass described as ‘likely a hepatic cyst’, which sounds grim but is apparently very common. My GP recommended a follow up blood test which showed my ALT level was 306 (normal is 1-50) and ferretin was 2072 (normal is 25-200). My GP phoned to inform me of the results and told me she was so worried that she had gone into work on a Sunday to research what could cause such high liver function results. She said it was possible two medications I take could be the cause of the problem, but she was clearly concerned it was something much worse.

I contacted the consultant at The Royal London Hospital who prescribes my TPN hoping for reassurance. He’s a man I really trust, however he thought it was unlikely the liver results were caused by medications, or by TPN. He referred me for a liver MRI test and a fibroscan. I made the mistake of consulting Dr Google which showed me very concerning predictions for the life expectancy of people with a liver mass and abnormal liver blood test results. I was told the MRI and fibroscan tests were likely to be about 8 weeks away, which felt like a really long time to wait as I’d become very concerned about the problem and postponing the liver scan three times had wasted 6 months.

I’m very lucky as I have a supportive family who can help me financially when it’s really necessary, and I managed to arrange a private fibroscan test just four days later. I was quite stressed on the journey to the test as I was pretty much expecting bad news, but the result was …normal. Given how high my ALT and ferretin levels were that was surprising, but a big relief! The consultant commented ‘There’s not much fat in your liver and the level of scarring is non-existent.’ My result was 6.1 kPA. Normal is 2 – 7 kPA. Over 15 is a bad result.

I had another blood test a week later – ALT 169 & Ferretin 1237, which were better results but still worryingly high so I had the MRI test as soon as I could. It’s a much more detailed test as it looks at your liver, bile ducts and surrounding organs. I had to wait 5 days for the result, which was… normal!

The MRI result was another big relief, however the very high liver blood test results remained unexplained. The consultant at The Royal London Hospital suggested I see a rheumatologist to ‘hunt down the cause of the high ferretin’. I found a rheumatologist experienced with hypermobility who recommended a very long list of blood tests. It took about 3 months to get all the results back as some of the tests were unusual, such as ‘double stranded DNA antibody’, and the results were all …normal!

I had an appointment with the nutrition team at The Royal London Hospital to discuss all the results. They offered a biopsy of my liver, which would be the only way to get a definitive answer to what is wrong. The consultant’s view was I have some inflammation in my liver and perhaps some fatty deposits as a result of 12 years of intravenous nutrition (TPN), but nothing really sinister wrong. He advised against a liver biopsy as it involves putting a needle through your skin and stomach wall all the way into your liver, and has a relatively high complication rate. I agreed with his advice, partly because I was sick of hospitals and tests 🙂

I’d never experienced a cancer scare before and I have to say they are not fun! I did get quite worried about the problem and it took 7 months to fully resolve. The private medical bills were over £2000, but thankfully the cause turned out to be the mildest of the possible outcomes. Finding out I have liver damage from TPN is bad news, but it’s not serious, and if I hadn’t been given TPN back in 2013 I would likely have died of malnutrition. An inflamed liver is quite a small price to pay for 12 years of extra life, and counting…

My latest blood test showed ALT 29 and ferretin 842, so the problem persists but at a lower level. There’s a very good and healthy reason why the liver results have improved, which I’ll share in my next post. After this article it will be really nice to share a positive story with you!

Thanks for reading and a very big thanks to my family for all their support, Ceri.