Should I tell my rheumatologist?

[Mctd]

Morning everyone, after 7 years I eventually got a diagnosis of mctd and secondary Fybromyalgia in November. Things had started to settle, but was feeling quite unwell Xmas week and finally after calling 111 was taken to A n E by paramedics. My blood pressure was through the roof, I couldn't beneath comfortably and a blood test showed some unusual markers. After 11 hours I was sent home with laxatives - I have diverticulitis and it was suggested I was having a flare and toldif I noticed my eyes turning yellow to go straight back. I went home but a week later still didn't feel right and contacted my GP. He was surprised they let me home without further tests as my liver enzymes were double what they should be. I had aother blood test which came back normal and a scan. I got a call saying that the scan was showing fatty liver, but it wasn't urgent and, was given a telephone appointment for 4 weeks time. To be honest, even though she she told me it wasn't urgent, I still feel worried... I do like a drink but don't drink excessively but I am aware that my diet wasn't great. I struggle to get through the day at work due to fatigue, consequently snack on coffee, biscuits, sandwiches (especially cheese). Since the call I have stopped drinking alcohol and been clean eating as much as possible. This week I have noticed thst the inside of my hands look 'shrivelled' , a bit like dried fruit and have also had a rash on my neck, that gets quite angry and stings for about a month. Could these new issues be linked to MCTD, should I tell my rheumatologist, I have an appointment with him this week ?

[PMRpro]

Always report everything - and you do have an appointment soon to do it.

The most likely fatty liver you have is NAFLD - nonalcoholic fatty liver disease.

mayoclinic.org/diseases-con...

nhs.uk/conditions/non-alcoh....

The use of carby snacks often contributes to NAFLD so improving your diet was a good move. If they said it was non-urgent after a scan, they obviously think they have time to explain to you what it means because you are in the early stages which are often never noticed so I wouldn't worry too much. I know it is easy to say! But have a read of the articles I have linked.

[Mctd in reply to PMRpro]

Thank you for your reply, I will definitely discuss it with my consultant and also take a read of the links you sent me. J

[OldTed60]

PMRpro has given a great reply as ever. But yes it’s worth telling your rheumatologist for sure. I replied to someone else’s post on the scleroderma community about this so worth reading but it will be related to your diet including any alcohol consumption that goes beyond occasional once you have NAFLD and can usually be reversed with diet and lifestyle changes.

I don’t know if it’s MCTD related specifically although perhaps those with connective tissue diseases are more prone to this or our bodies are sensitive to hormonal and chemical imbalances I would think. I only know I’ve reversed mine entirely by default due to severe scleroderma GI problems.

I do get rashes and shrivelly palms but mainly due to secondary Raynaud’s and other - likely lichen planus and folliculitis - so my dermatologist thinks. Try not to add 2+2 and make 5 but yes please do report these to your rheumatologist as well.

Good luck with dietary changes. Maybe just take your own snacks in and opt for decaf and a choc coated rice cake initially or some dried fruit, a yoghout and banana smoothie or just some organic dark chocolate instead of the quick fix biscuit fare others are going for at work. With Gastroparesis and SIBO my quick fix is Pure smooth peanut butter and marmite 50/50 on a teaspoon or a rice cake to nibble with decaf coffee or a redbush tea.

[Brackensmum]

Hi Mctd, I've had exactly the same symptoms twice during flare ups. The first time my alt reading, which is supposed to be between 0 and 30 was 1,300 and I was jaundiced. My scans also showed a slightly fatty liver but all the hepatitis blood tests they did came back negative. Gradually over a 3 month period my readings returned to normal and my liver is fine. My rheumatologist assured me that no lasting damage was caused so please try not to worry.

[michaellasmith Administrator]

Good morning Mctd,

We would always advise to report all incidents to your consultant, this ensures they have all the information to provide you appropriate and safe treatment.

Good luck with your next appointment!

If you have any questions, please feel free to send me a private message, email me at [e-mail] or call me in the office on 01708 731251

Warm regards,

Michaella