Hello everyone. I am wondering if anyone with widespread cirrhosis such as I have, experiences symptoms of hypoglycaemia? I was diagnosed at 38 with PBC ( liver biopsy revealed stage 1-2) and am now 51. Liver biopsy plus bloods and other imaging confirmed progression to cirrhosis 4 years ago. I am busy working as a nurse and running my large family/house but lately have feelings of extreme hunger and headaches that are most uncomfortable and point to hypoglycaemia. My reading of chronic liver disease states that the mechanism for glycogen release to glucose is interfered with. I have not read of others experiencing this however and would be keen to hear from anyone who does in fact experience something similar. Irritatingly, eating does not always solve it! I am seeing my consultant in a few weeks but thought I would put feelers out to the PBC community.
Many thanks in advance
Karaliz from Australia
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Karaliz
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I have extreme hunger episodes, to the point of nauseated feeling Until I can eat something, I have been worked up for diabetes and endocrine disorders but nothing shows up, I think it is the PBC interfering in the glucose because I never had this until this past year and I got diagnosed last year. I have learned to eat more frequent smaller meals/snacks through out the day and this seems to help some but not always, let me know what you find out.
Thanks michiganpbc. Do you have cirrhosis though? I have been diagnosed for nearly 14 years and only started experiencing these symptoms of late. I believe it is the damage wrought by cirrhosis that causes the problems associated with hypoglycaemia.
I have stage 2 PBC no mention of cirrhosis on the pathology report but that was a year ago the liver biopsy.
Hi there Karaliz,
I'm stage 4 as well, and also get the symptoms you are experiencing - I don't always get the "headaches" though. For me it usually begins with the sudden onslaught of hunger, then the shakes, the sweating, the nausea and then the vomiting (if I don't eat something quick enough). Thinking back, the onset of these symptoms correspond to my moving into cirrhosis stage.
Interestingly, I never actually linked this to having cirrhosis - I just thought it was due to me having gastritis of the stomach. After reading your post I did a 'search' and found a few articles that explained the link ;-(
Hi Di. Great to hear from you - we communicated maybe 18 months ago - I'm from Melbourne.
Thank you so much for your response - your symptoms are quite severe and sound very much like hypoglycaemia, don't they? Would you agree that it is the cirrhosis that is the probable cause? From the reading I've done of late the medical advice seems to be to have the hypoglycaemia formally diagnosed with a plan in place. Do you carry around carbohydrate snacks when you are out Di?
I have portal hypertensive gastropathy which is not the same as gastritis and like you originally thought this was the culprit. Apart from my specialist telling me PHG does not cause symptoms I now believe what you and I are both experiencing is low blood sugar. Sigh !!
How are you keeping otherwise Di? I see from the time of your response that you are still waking very early.
Thanks again for responding - it was most helpful and enlightening.
Yes I remember our chats - I'm doing okay, how about you?
Hm.... wonder how they diagnose hypoglycemia? I guess it would be a blood test taken at a certain time of day - I noticed my GP has added a check of my glucose level on my monthly blood tests recently (I have low iron levels) and I usually wander off to the pathologist's an hour or so after breakfast, maybe next time I should do it just before lunch time 😉
I'm on my tablet now so can't paste the web address of the article I found this morning (if i remember I'll post it tomorrow), but it did suggest that as the liver becomes more damaged less glucose is produced - so yes, I would agree that the cirrhosis could well be causing our low blood sugar.
I'm thinking this PBC caper is becoming a bit of a bore, if it's not one thing it's another........
Thanks Di - I would be interested to read the article.
Could not agree more with your take on PBC !!.... Interestingly, I went to see an endocrinologist today ( another issue) but asked her about this correlation. She said that with cirrhosis, glycogen is unable to be stored properly which causes all sorts of problems with swings of insulin release that do not match up with glucose ,requirements. She said a 24/24 glucose monitor will track blood glucose levels that can then be interpreted by my liver consultant. Sounds similar to a holter monitor for cardiac problems.
She seemed concerned about my symptoms....in light of this, have you ever discussed your symptoms with your Dr ?
I am ok thank you although fatigue is my constant companion - most annoying as I work 3 days/week.
Anyway, will see what my consultant says when I see him next week.
The below quote is not from the one I spoke of yesterday, but I found this one this morning while looking for it:
"Defects in Carbohydrate Metabolism
The hepatocyte actively stores glucose by converting it to the longchain starch, glycogen. Glycogen can then be later broken down to release glucose into the general circulation. The factors that control this insulin, epinephrine, growth hormone (STH), glucagon and the thyroid hormonestend to counterbalance each other so that the hepatocytes store glycogen as the blood sugar rises and break it back down into glucose as blood sugar level falls. Again, this is a critical function, an impairment of which produces some of
the more serious manifestations of liver disease hyperglycemia and hypoglycemia. In fact, patients with severe liver disease often have glucose tolerance curves very much like those seen in diabetes mellitus. That is to say, with food ingestion, they tend to become hyperglycemic because the hepatocytes cannot store glycogen while, as dietary intake is decreased or absent, the hepatocytes are not well able to mobilize glucose from what little stored glycogen there is, and so these patients have episodes of hypoglycemia. This phenomenon is sometimes called "hepatic diabetes."
Thank you Di - this is so helpful and interesting. I will quote it when I see my Dr next week ! The lovely endocrinologist I saw yesterday thinks I should have the 24/24 glucose monitoring so will see what he ( my Dr) thinks. Do you find your symptoms dissipate once you have eaten and if so, how long before they reappear ? My issue is that eating only momentarily relieves the feeling !
Yes, my symptoms do usually dissipate soon after eating something, but they come back as soon as I begin to feel hungry again. One thing I've noticed recently though (it's only happened a couple of times so far), is that even if I eat straight away I will still experience the full sequence of the symptoms. ;-(
I'd be interested to know if you are finding that the 'hunger' feeling comes on very suddenly - it seems that I am fine one minute but then the next minute I have the gnawing hunger feeling, none of the usual lead up to feeling hungry.
Karen, I would really be interested in what your doctor suggests doing about these unpleasant events - I suspect though, it will be 'just eat something' as I've been told when I have mentioned it to my doctor.
Must admit, I do function better when I have an 'official' diagnosis, or information, of these types of things. "Just eat something" didn't do it for me - whereas the article above has.
Hi again Di ( at work today so apologies for late reply). I do find the "hunger" feeling comes on very suddenly as you describe.... I have had it off and on for a year or so but almost constantly for the past 6-8 weeks. It is so peculiar to eat and then not long after, feel that strange, empty feeling - most unpleasant. So if I understand it , in simple terms, we cannot access glucose efficiently - regardless of what/how much we eat. Have you lost weight Di?
I will definitely let you know what my consultant thinks when I see him in 2 weeks. The endocrinologist I saw on Monday seemed to think I should have the glucose monitoring for 24/24 so we will see.
So sorry to hear you are suffering from these symptoms....it does sound as if it needs to be thoroughly investigated - as you would be aware having hypoglycaemic episodes can be quite a concern depending where you are when they occur. The 24 hour glucose monitoring sounds like a great way of finding out what exactly is going on! The liver is an integral part of blood glucose control in the body so it would seem very possible that cirrhosis could interfere with the complex systems that usually keep our glucose level where it should be. I hope your specialist can help get some answers, take care,
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biopsy said early stage, elastography says stage four which is cirrhosis?
Primary biliary cirrhosis
Confusion , is it PBC or not?
