Hi,
I'm really sorry to post again, but.. over the past few days I've developed what definitely seems to be a spider nevus on my face. I also have other red dots and spider veins on my face, and I'm developing cherry angiomas on my abdomen.
I've got RUQ pain again, and something odd is going on with my toenails which looks like it might be Terry's nails.
I've booked to see a hepatologist in 2 weeks' time. I'm really upset 😢
I read all of your previous posts. You really need to get a fibroscan. Otherwise you are just guessing that’s what it is. I also suggest staying off Google because you seem to be trying to diagnose yourself. Not to mention they give worst case scenarios and stats. I have compensated cirrhosis and I’m only 39. Mostly due to alcohol which I regret but cannot change the past. The more you worry the more symptoms you will have.
Side note, I had gum disease as well, nothing to do with my liver. Deep clean and they are much better.
Hi pushthrough, thanks for replying. I had a fibroscan at the BTL roadshow which was 4.7kpa, but they say they are not done in clinical conditions and are not diagnostic etc. I am totally confused because the tests are not flagging anything major, but yet I seem to have symptoms of advanced liver disease. The dentist ruled out periodontitis - I think the receding gums must be due to the dry mouth. nerd x
Receding gums tend to come with age, sometimes as young as in the 30s but is normal during the the 40s. Dental floss and the little tepee brushes for between the teeth will help to keep the gums healthy especially while we can't get to visit the dental hygienist as often as we did before covid arrived.
4.7k is normal. Even though it wasn’t in a clinical setting I’m glad you finally did it. Congratulate yourself! I wish they did that in the USA. In the meantime I would be optimistic because 4.7kpa is very promising. It could be something other than your liver. Please keep everyone posted after your appt. 👍
After a conversation with Fibro2021 I'm really worried I could have non-cirrhotic portal hypertension. It's just awful & I can't stop crying.
Hi Nerd,
We appreciate you are concerned but we would suggest you think about coming off google and to focus on the initial medical test results you have had which are encouraging.
No one on the forum is a doctor so please be careful who you have a conversation with.
Maybe you can speak with your own GP after the bank holiday and discuss your concerns with them? They have full access to your medical history and can assess any symptoms for you and order additional tests if needed.
Take care.
Hi trust, I know I must seem crazy at this point, but the appearance of spider nevi and white nails on top of my other symptoms really has me worried.
I keep panicking because I know something really is wrong, but the more I panic the more people think it's health anxiety.
I'm going to see a specialist in 2 weeks.
We certainly would not think anyone is crazy, and we appreciate you are concerned and worried.
We hope that your GP and specialist can see you soon and evaluate your symptoms. Do take care & keep us posted
I don’t think you sound crazy, just worried. Worry is something that is very real. I’ve found that when I’m anxious and worried about things that I tend to look at the worst case scenario. It very rarely turns out that way. People are looking at the cold facts here, without the emotional connection that you have to your problem. The cold facts point to no problem. I think it’s very likely that that’s the most likely outcome. Make an appointment to see your GP on Tuesday, they will have more facts and knowledge about your health than either you or we have. If you really can’t wait that long then there are out of hour services like 111 or A&E, but personally I really wouldn’t get too concerned.
Well said Aotea, sometimes just a caring ear helps with the time needed to burn until you can speak to a GP, consultant, etc. It totally helps with anxiety..... Aotea Gave me a kick up my arse the other day (conservative/caring way) which is just what I needed! X
How are you today Aotea? X
Danny x
Didn’t mean to hurt your posterior, sorry! I’m fine thankyou. Xmas and New Year did nothing for my waistline, too much turkey and mince pies. I apologised to my liver in advance, but it’s behaved itself and thanked me for no sherry or red wine. My brother had to make a ‘dry’ trifle!! Am glad to get back to my normal food, although turkey does feature quite highly! Never thought I could enjoy a cirrhosis diet.
Hahahaha, nothing hurts me (yeah right)..... Cirrhosis diet hahahaha 🤣, is that little and often, where you can taste every little bit of salt? Feels good not drinking, I had a laugh without it. I do do like the fact that you gave your liver a heads up. Hahahaha 😆 sorry nerd I hope this little pit stop cheered you up.Stay positive and strong it Goes miles in hour little boat!
So it's not just me where everything tastes extra salty. I didn't know that was a thing. I definitely notice it A lot these days.
Hi, I’d echo what others have said. I know it’s not easy to stop worrying. But honestly, I’ve got liver disease and have had spider veins and funny toe nails for years. I’ve also had excellent treatment from the NHS and my liver is functioning fine. None of the things you’ve described have set alarm bells ringing. You’ve had a fibroscan that was OK. Go to your appointment with a list of you questions and hopefully you’ll come away reassured. My Mum lived for 20 years with liver disease and lived 7 years longer than my Dad who didn’t have any health issues. I’d also suggest taking someone with you if Covid permits, or ask the doctor if it’s OK to record the session because you won’t remember everything and I think you might need the reassurance of listening again. Good luck tomorrow 😊
Hi, thanks for your responses everyone. If I could just try to clarify my symptoms & explain why I'm so worried (hope you don't mind):
- Started in late Feb with a 2 day episode of jaundice, mainly around the eyes. Didn't have bloods done until 8 weeks later.
- At the same time a bad taste in mouth developed into a coated & fissured tongue with a strong sweet musty odor which seemed to be coming up from oesophagus.
- March onwards started having irregular periods & substantial hair loss from head.
- Approx 2 weeks after stopping drinking I started having very bad myoclonic jerks at night which were like an epileptic fit.
- Symptoms abated a bit but then returned in June, when the jerks started happening during the day as well. The jerks coincided with the smell from oesophagus & dry throat getting worse. Jerks stopped again July onwards.
- ENT doctor did a nasoendoscopy but couldn't see an infection.
- Now have coated tongue, spider nevi and odd toenails, also joint pain in knees & some abdominal pain.
- Platelets have reduced every three months, from 416 to 407 to 398. Urea is low (dr said could be due to overhydration)
- Ultrasound person said spleen was larger than the average but still within the normal range.
Thanks for reading & I'm sorry for the essay.
Sorry, forgot to mention constantly pruned/wrinkled fingertips. I think that's everything.
No it's not - I also had blood in my nose a few times when symptoms first started. Not bad nose bleeds but unusual.
Hi, I cried to the practice manager & she agreed to book me a face to face appointment with a GP for next week. Over the past few days the jerks have returned, especially in my arms, and also abdominal & hip pain. It can't be withdrawal symptoms at this stage. Feeling very upset.
Hi nerd1
Sorry you are going through all this distress and worry, I’m afraid I can’t offer much help as to what might be going on but I could literally have written your posts myself, I am going through a virtually identical set of symptoms.
I to have had normal blood tests and an ultrasound which didn’t flag up any issues, I have a fibroscan booked in for later this month.
I’m honestly not someone who suffers with health anxiety but not knowing what is wrong is awful so I totally understand how you are feeling.
Feel free to get in touch if you need a chat.
Sam
Thanks Sam, it's awful isn't it, suspecting a liver problem but not knowing for sure. Hopefully we'll both get to an answer soon x
Hi BlueYear, the conclusion I have very tentatively arrived at is that I have a bad case of long covid, although obviously it is extremely hard to stop worrying with Terry's nails on my fingers & toes & spider veins popping up all over my body (these are both also reported with long covid).
I suspect that quite a few people currently worrying about liver problems actually have long covid. Check out the covidlonghaulers thread on reddit and see how many of your symptoms match up..
Thank you for replying nerd 1. I did have covid but back on March time and seemed to recover fine, but that's interesting. Thank you again.
Unfortunately many people are developing problems even after mild Covid.. my initial infection in November 2020 was fairly mild, only for all hell to break loose 3 months later.
There have definitely been people on here with seemingly serious liver-specific symptoms but inexplicably clear tests.
No-one knows anything for sure though & I'm still worried about my liver
😔
Hi nerd1 (or anyone else with experience in this). I'm wondering if you're still there/ might be able to advise. Did you get any further and did you work out if symptoms were covid related? On Tuesday I noticed several broken veins on my nose. Yesterday Spider Nevi on my boob. Today tested positive for Covid. Can't get in (telephone appointment) with GP until mid May and am freaking out, to say the least. I know these CAN appear in healthy individuals, but I do also have palmar erythema. Thank you.
Did you find anything out? Really scared myself about this.
Worried about my ultrasound and lft reports with some symptoms!
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