PBC and hypoglycemia: Hi, everyone, Does... - PBC Foundation

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PBC and hypoglycemia

tinypixie profile image
31 Replies

Hi, everyone,

Does anyone have PBC and hypoglycaemia WITHOUT having diabetes?

Thank you

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tinypixie profile image
tinypixie
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31 Replies
liver-bird profile image
liver-bird

Yes I have raised blood sugars and was told, after tests, that I have impaired glucose tolerance. I was told to lose weight before it turned into type 2 diabetes. I am struggling to lose the weight now. All the best

tinypixie profile image
tinypixie in reply to liver-bird

Hi, Liver-bird (love your pink hat). I'm actually referring to low, not raised blood sugars (hypo, not hyperglycemia) but thank you so much for writing. Good luck with your weight loss. My husband had a very simple solution to weight loss: he just gave up sugar and cut down on bread and potatoes and has lost a stone. Maybe this could work for you.

KarenLeslie profile image
KarenLeslie in reply to tinypixie

Hi Pixieblake

I have PBC, lupus, RA and hypoglycemia.

Always have had the last 3 but was diagnosed with PBC 5 years ago. My hypoglycemia is worse now.

tinypixie profile image
tinypixie in reply to KarenLeslie

Dear Karen,

Thanks for telling me about your PBC and hypoglycemia. I'm sorry yours is also worse now. I am seeing a new consultant some time soon (sooner rather than later, I hope) and I will discuss the hypoglycemia situation and get back to you.

Pixie

Did you mean hypo or hyper.

I have hypoglycaemic attacks and I am not diabetic, this causes a noticeable drop in blood sugar and can make you feel weak, dizzy, shaky. Which I keep under control by eating little and often. If I go out I always carry a snack bar or something with me.

However hyperglycaemia is high blood sugar levels as described by liver-bird.

tinypixie profile image
tinypixie in reply to

Dear candy12,

Yes, I mean hypo, not hyper. I do feel very weak, dizzy and shaky with the attacks. I've had to give up all sweet things and I can't even eat fruit on its own. I was wondering if this is related to PBC because I have never been able to find a cause for it. I'm now taking Urso and I wonder if this will make a difference.

in reply to tinypixie

I also had this years before diagnosis of PBC, so medication being the cause is out, however could it have been the start of PBC that i can't say, and I have never seen it listed anywhere as being a symptom either.

However I did speak to my gastro, but she neither confirmed or denied it being related, she only said eat healthy and little and often to help keep the levels balanced so exactly what I,ve had to do for years.

tinypixie profile image
tinypixie in reply to

Candy, thanks for telling me this. It is a comfort to know that someone else had hypoglycemia years before the diagnosis.

Do you feel that your blood-sugar levels are well-balanced? Do you have any particular suggestions? Despite cutting way down on sugar, I still have problems.

Thanks,

Pixie

in reply to tinypixie

Hi, I don't think my blood levels are very well balanced. However I don't really follow any spacific diet but I think over the years I'am quite tuned into when to eat to stave off an attack and i never miss my 11am snack.

I don't know why but I seem to be more prone to attacks in the morning /early afternoon, so for me a good breakfast is key and I try to have a little protien at breakfast and lunch and this does seem to help.

I snack throughout the day but try to choose healthy options and I don't have a problem with fruit so that's when I would normally have my fruit, hand full of nuts or even yoghurt.

Just recently I do have a couple of crackers near bed time as I wondered if my morning headaches were to do with blood sugar dropping during the night but the jury still out on that one.

tinypixie profile image
tinypixie in reply to

Candy, thanks again. I also feel much worse in the morning at about 11 am, even after a good breakfast with protein. I often don't feel like snacking but I'll force myself to do it now. Hope your morning headaches get better!

teddybear7 profile image
teddybear7

I have hyper! & not diabetic. Not over weight low BMI. Can't overload on fat sugar or alcohol. They've called it burn out as in an athlete who overdoes it. Basically all my energy used up fighting p b c nothing left for daily stuff. Body's response is to off load sugar to help hence more than normal in bloods. Have to eat good carbs whole meal stuff brown rice high fiber etc. I have to read everything. Doing ones head in .x

tinypixie profile image
tinypixie in reply to teddybear7

Dear teddybear7,

Thanks for your thoughts. I really like your theory that the body is overloaded in fighting PBC and has no energy to deal with sugar and offloads more into the blood.

I'm trying to eat just the good carbs and cut down on fruit and it does help although sometime I dream about ice cream with hot fudge.

I read everything, too, and I think it is making me crazy. Is it better to keep reading and investigating or is it better to try to forget about it all and just live your life?

Best wishes,

Pixie

teddybear7 profile image
teddybear7 in reply to tinypixie

Hi pixie I bought an ice cream maker. Do a low fat version now cravings sorted lol. X although not a diabetic it was the diabetic nurse that first told me about the energy thing & the Dr has just confirmed it. So it seems a bit more than a theory.

tinypixie profile image
tinypixie in reply to teddybear7

Dear Teddybear,

The ice cream maker is a fabulous idea. What do you use for sweetness? I find I can't handle more than a teaspoon of sugar at any one time.

Thanks for letting me know that the energy thing is not a theory, but a reality. It does make a lot of sense.

teddybear7 profile image
teddybear7 in reply to tinypixie

I honey I use splenda but not the one near the tea & coffee the special baking blend ( there's two types). & crème fraiche. Instead of cream. The books called the skinny ice cream maker by cooknation. Xx

June9961 profile image
June9961

I have hypoglycemia too. I just make sure I eat something a little sweet when I am feeling dizzy, shaky and sick. I also find that I get a headache and get a wee bit confused too. Is this the medication or the PBC? 😏

tinypixie profile image
tinypixie in reply to June9961

Dear June,

Do you think your hypoglycemia is caused by the medication or the PBC? I've had hypoglycemia long (eg, decades) before I was diagnosed so for me the medication (which I've just started) has not caused it.

jrobertson1 profile image
jrobertson1

Like Liver-bird, I have been told that my blood sugar is a bit high but had a glucose test which seemed to rule out diabetes. However, I was told to lose weight although I am not actually overweight. I eat healthily but enjoy the odd cake or chocolate bar. Have often wondered if it is linked to the PBC or the medication. Perhaps we don't break down our food properly?

tinypixie profile image
tinypixie in reply to jrobertson1

Dear jrobertson,

That's my question exactly! Does PBC stop the liver from breaking down the food properly and causing big sugar highs and lows?

Cheers,

Pixie

Karaliz profile image
Karaliz

Pixie if you have chronic hypoglycemia why have you removed all sweet items from your diet ? Surely this will exacerbate the problem ? The symptoms you describe all sound related to how one feels with diabetes when blood glucose drops which are rectified with the consumption of high glucose food/drink. I realise you don't have diagnosed diabetes but it sounds as though your blood glucose needs to be raised with the consumption of a high energy diet..... Have you seen a Dr/dietician about this ?

Karaliz

tinypixie profile image
tinypixie in reply to Karaliz

Hi, Karaliz,

I understood that you should remove sugar from your diet in order to avoid blood sugar spikes and to keep the blood sugar level all day long. Complex carbohydrates are supposed to be OK; however, I can't eat anything like a sweet potato without having a hypo. I have seen a dietician but she really had nothing to offer.

Many thanks,

Pixie

Karaliz profile image
Karaliz in reply to tinypixie

If you can't eat a sweet potato without having a hypo then that should surely be investigated by a Dr, Pixie? Have you had discussions with your Dr about your pancreas and had the appropriate blood tests ?

It sounds as though you need real attention to get to the bottom of this.

Best of luck

Karaliz

tinypixie profile image
tinypixie in reply to Karaliz

Karaliz, I've just been diagnosed with PBC so I haven't had a discussion yet about this but I agree that it does seem ridiculous that I can't eat a sweet potato. I did have the 5 hour glucose tolerance a few years ago and my blood sugar after it was .9 (point 9)! The endocrinologist then sent me off to some registrars who just said look on the internet to see what to eat! I will definitely follow up on this when I next see a consultant. Thanks for all your support.

Chrisprio profile image
Chrisprio

Hi,

Re whether hypo or hyperglycemia linked to PBC or meds - I've recently seen a new consultant, after not being too happy with the gastroenterologist I first saw. He was so knowledgeable and informative and supportive. Anyway, he mentioned that the pancreas can be affected in PBC and when I was surprised saying I hadn't heard of this or read it anywhere he said it's quite new. I'll ask more when I see him next.

tinypixie profile image
tinypixie in reply to Chrisprio

Chrisprio, thanks for writing. I'm going to follow up on this with a well-recommended gastroenterologist. So far no one has said to me that the pancreas could be affected in PBC so I will follow up on this ASAP.

Many thanks for your help.

gizocsi profile image
gizocsi

I knew for decades, that I'm hypo, but this year I began to have terrible attacks. It was because I couldn't always eat in my own rythm. The strong type is helped by liver demage, as it regulate and spare the sugar. I've read too, that only at the time of attack they can mesure lower blood sugar, and eating something sweet can immediatly help. (water with sugar) Often small portions, always having some snacks help, and also avoid headaches.

tinypixie profile image
tinypixie in reply to gizocsi

Gizocsi, thanks for writing. I've been having terrible attacks recently, too, despite knowing for decades that I've had hypoglycemia. I've decided that I've got to discuss this with my new consultant because it's really out of hand now. I'm struggling despite snacks and small portions.

Good luck to you!

gizocsi profile image
gizocsi

I found a good page (where 1 of possible causes is liver problem)

drugs.com/cg/non-diabetic-h...

Have a nice sunday!

tinypixie profile image
tinypixie

Hi, thanks for this. I'm chilling out this Sunday. Hope you are, too!

thats really helpful as I find if I do more exercise than I an cope with or miss a meal then I need to eat a lot of sugar to get me started. That was a symptom long before the pbc got diagnosed. I have realised if I start the day slow with porridge and not too much sweet stuff I get less lows. Protein with most meals as well helps.

Thanks.

Jessica1975 profile image
Jessica1975

I am a nurse with PBC. I started having Hypoglycemia about 10 years ago, after my gastric bypass surgery. If I eat too many sweets, usually over 13g without protein, my blood sugar silently spikes for a minute and then crashes from 30s-60s. I feel foggy, sleepy, hungry, get the shakes and sweats, and I act like I'm drunk until I can drink oj or eat peanut butter crackers and the like.

Hypoglycemia is more common in patients with a history of gastric bypass surgery. I'm curious to know how many people with pbc also had gastric bypass surgery.

Also, the doctor who diagnosed me with low blood sugar said that low blood sugar is common in people with liver cancer so he rushed me off to be tested (it was negative). Likewise liver cancer is more common in folks with pbc, hence why we have so many ultrsounds.

Please get your regular checkups and notify your doctor of low blood sugar concerns. Besides the possibility of liver cancer, low blood sugar over a sustained time can cause memory problems.

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