Hello, I'm new to the forum also still trying to figure out what's going on. I'm 29 years old male with low BMI.
Since the age 14 I have a lot of spider naevi on my chest, shoulders, upper back and upper arms. It was checked by doctors a lot of times but I didn't get any answer for a long time. Around 1 month ago I went back to a specialist and he told me this can be Hereditary Haemorrhagic Telangiectasia so I'm currently waiting for the genetic blood test result (which takes around 3 months, 2 more to go...)
I literally spent "hundreds" of hours reading things on google also my older diagnoses and I found out that at age 12 my alkaline phosphatase was high, and my IgA and IgM was low at the same time.
Not sure if relevant but my eosinophil level was always high, around 8-13%. (0-4% is normal). This maybe can be because of allergic rhinitis. The symptoms what I have and maybe related: unable to gain weight, pale skin, fatigue, diarrhea... idk what else, if I remember something else I'll comment it
Can this be related to some liver problems? Maybe caused by HHT, which can affect the liver if I know it well.
Thank you!
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Avdx
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Hello, a high level of alkaline phosphatase is also detected during puberty. The higher level of alkaline phosphatase in young men is explained by a more pronounced process of bone tissue growth compared to girls. You ought to probably check your current level of alkaline phosphatase and other LFT values.
Hi, thank you for the comment! The results in the post were fixed, maybe I can't share them, so sorry for that. What bothers me, is that the ALP was around doubled of the acceptable amount. If I get the blood test result, probably I should have to check it again, depending on if it's positive, which genes are affected. The most common in HHT is the gene that affects the liver, so i'm a bit nervous
Hereditary Hemorrhagic Telangiectasia (HTT) may be associated with Non-Cirrhotic Portal Hypertension (NCPH) and Nodular Regenerative liver Hyperplasia (NRH). I think your doctors should undertake a diagnostic search in this direction as well.
Thank you!! Until I get the result I can't do anything else, just wait and this "kills" me. I'll tell this to my doctor, if the genetic test is positive.
Hi. I'm guessing you have not had a liver biopsy. I also have a lot of the same symptoms and spider naevi and these symptoms do sound liver related. I only received a diagnosis of Nodular Regenerative Hyperplasia when I had the biopsy. Do you have any other symptoms? Any breathing issues? Bloated? Can you eat normally?
Hello! No, I didn't have liver biopsy yet. I can eat normally, but most of the times, I only eat like twice a day because of lack of appetite. Even when I tried to eat 4 times a day to gain weight and exercise, I only could get 5 kgs within 6 months which is pretty small upgrade compared to how low BMI i have. I don't really have any breathing issue, but until like age 6 I had to go to hospital with upper respiratory tract infections (like 4 times) and croup. I had ultrasound for liver in 2019 and it showed that the size of my liver was at upper limit.
The anxiety thing is the same for me unfortunately but sometimes these liver symptoms can manifest as anxiety. My eosinophil level is also high by the way
Today I got my results - or basically I did not. I have waited 4 months for this, full of stress every day - the amount of blood they took from me wasn't enough for the test, and out of 3 genes that plays role in HHT, they only tested 1. Yes, 1, which - not surprisingly - was negative. So at least 2 more months until I will know something useful.
The more I read and the more they are trying to tell me it's gonna be HHT, I doubt this will be it. My doc said he doesn't think it's liver related, because it's "different". Another 2+ months incoming when I can't do anything useful to make a diagnosis finally.
Just wanted to do an update if anyone is in the same boat.
Almost 100% that I have CVID based on blood test. Immunologist mentioned a very possible ITP as well because of low thrombocytes. No answer on the spider nevi yet, osler-rendu came out negative. Docs don't think it's liver related only because every liver test normal.
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