low blood sugar

[PopandMo]

Hi, I had an oesophagectomy almost 2 years ago and it’s been a difficult recovery process. I was very slim before the op and am now maintaining my new weight but can’t gain any. Im having frequent small meals but often in the afternoon I get terrible attacks of low blood sugar and sometimes feel I might pass out. I get very shaky and need food quickly. It can take half an hour to recover. Lunch is soup , oatcakes with cheese, hummus or peanut butter and an apple. Also have about 1/3 or a carton of Fresubin. Anyone else experience this and how do you cope? Guess it’s a form of dumping syndrome but it’s making me afraid to go out anywhere.

[Makulit]

Yes, it's dumping syndrome. I'm nine years post Ivor Lewis, celebrated yesterday. I've experienced this to varying degrees over the years, and whatever you do it sometimes just happens. However you can very significantly reduce the frequency and severity by eating small amounts and often.

This is a huge challenge, specially if you dine out or travel, but something that you can get used to and live with.

I always take healthy snacks and Tupperware containers with me, so I can achieve this. It's worth it in the long run and, whilst it significantly increases the planning process it also vastly improves the quality of your life.

Small and often. Avoid sugar, even natural sources.

[PopandMo in reply to Makulit]

Thank you for your advice.. and congratulations on reaching 9 years cancer free!

[purplekey in reply to Makulit]

What snacks do you carry with you? I find trips out etc difficult because of the need to eat. X

[PopandMo in reply to purplekey]

I’m the same, I get very anxious about going out. However as others have mentioned I carry glucose tablets, jelly babies, cereal bars or chocolate to get a quick fix should my sugar levels drop. Obviously it’s wise to then have a proper snack to prevent another drop.

[Makulit in reply to purplekey]

Fruit, crunchy cereal bars, nuts, Snickers just in case.......

[Hidden]

Hi I get this everyday and I take Dextrose tablets and they really work for me. I am 12 years post surgery and it has been a struggle. The low blood sugar has got worse and I often feel faint when out. The dextrose tablets from the chemist help me quickly. Ope this help.

Take care.

[PopandMo in reply to Hidden]

Thank you for your reply. I do always carry something sweet but it seems to take ages to work. I’ll definitely try dextrose tablets.

[Molly14]

hi - I was the same very slim before Ivor Lewis and now struggle to maintain my weight and I’m just over 7 stone - I went through a stage of low blood sugar but now manage it with always having a mini mars bar in my pocket or the doctor told me about glucose sweets from chemist - I make sure I have a mini mars bar every few hours. I also put sugar on my cereal in the morning and sugar in tea and coffee -the episodes are not as bad now - you could try scrambled egg at lunch or baked potato - I have a cheese and tomato toastie - I find soup fills up the tube to quick and doesn’t make me feel good. I’m 8yrs on now and eat pretty normal albeit slightly smaller portions but I went through years of trial and error - I nearly live on curry now which is strange as I’d never had a curry before surgery but taste buds changed so much - all the best

[PopandMo in reply to Molly14]

Hi Molly. Thank you for your advice. I too weight a few pounds over 7 stone. I think it does seem to be trial and error and yes my taste in food has changed! Congratulations on reaching 8 years.

[SurreyGuy]

Hello. Have you tried mapping this against food that you have eaten and the length of time it takes to take effect? I have found most carbohydrate will make me feel strange about 1.5hrs after eating. This is dumping syndrome and I need resolution quickly otherwise I end up getting confused. But I get about 20 minutes warning with early symptoms as the way my eyes processes light changes and i start to sweat…20 minutes to find my glucose tablets. I find if I eat nothing then nothing happens. So, when I go into the office I don't eat anything until I get home. Works just fine and i get enough calories inside to more than maintain my weight. In fact I have to be careful otherwise i can gain weight. So, i suggest you keep a diary of what you ate and the symptoms to see if you can work out the cause. Good luck, i am sure you will be able to work it out.

[PopandMo]

Thanks for your suggestions! Yep I do think it seems to be trial and error. I guess it’s all still a bit of a learning curve at the moment. It’s been a difficult 2 years and things seem to change…

[Cosmobabe]

Hi there!

I am 5 years cancer free. I would advise you to go to the gp and tell them about your symptoms.

I found that I was experiencing low blood sugar after eating breakfast every day.

I got an appointment with the endocrinology department at the hospital and now I eat 2 Acrobase tablets at breakfast (it should be 4 tablets per day but I am managing my symptoms with the 2) and this helps me avoid having situations like this.

Sometimes even eating the 2 tablets does not prevent the low blood sugar but my situation has got better after eating 2 tablets in the morning.

The explanation I was given, was that the body would experience a sugar rush with the meal that had been eaten and the body would try to compensate it by over producing insulin which would then cause the sugar levels to decrease. This is called delayed hypoglycemia.

This was happening daily to me and now I just experience it on the odd occasion. I also don't tend to go out due to this as my symptoms vary and I still can not get it quite right. Symptoms could vary from severe confusion with dizziness to a hot flush.

My sugar levels would dip down to 2.5 on the sugar machine. I was told that these sometimes give inaccurate results when levels are really low.

If I feel my sugar is about to dip then I take a couple of glasses of fresh orange juice or eat anything to bring my levels back up. It is not a very nice feeling as I tend to have no energy to move or do anything so I need help from the family to help resolve it quickly.

Please talk to your gp in the first instance.

Kind regards,

Cosmobabe

[PopandMo in reply to Cosmobabe]

Hi there and thanks for your advice. I did mention it to the surgeon on my last check up a couple of weeks ago and he just said he didn’t think it was true dumping syndrome and to eat every 2 hours. I do that anyway and it still happens! I see a dietitian in a couple of weeks so hopefully they will be more clued up. ☺️

[Cosmobabe in reply to PopandMo]

I had an appointment with the dietician - I didn't find them helpful. Spoken to two over the last 5 years. The dietician needs to be from the gastroenterology team for them to be helpful otherwise I found that they didn't understand they issues that I was experiencing and could not offer any solution.

It ended up both couldn't offer me a solution and I just tend to manage my symptoms.

[PopandMo in reply to Cosmobabe]

Hmm sounds a bit like the gps. They don’t quite get it. Maybe it’ll be a case of trying to see what works best! It’s scary at the time though and stops me going out.

[Lab1]

Yes it horrible I am 10 years on now asked the consultant and he said it’s the new plumbing as food goes through the system much faster. I have crisps and chocolate in all my bags. May try dextrose tablets as they would be handy. Good luck

[PopandMo]

it sure seems to be a common thing. Really horrible at the time and I feel it limits my life. I’m with you in the snacks-always make sure I have cereal bars or chocolate with me. Thank you!

[052517]

I agree with Surrey, map it out. Everyone post op is different and I think that is why the medical community struggles to have answers. For me: I eat a protein with every meal and almost no carbohydrates, milk, and fruit. I avoid liquids 1/2 hour before, during, and after meals, therefore soup is off my list. If I move around after a meal this will also trigger a low sugar event. I carry dextrose tablets everywhere I go. The diet is limiting but otherwise I live a pretty full life, 6.5 years post op. Best wishes

[PopandMo]

yes it seems trial and error is the way forward. It didn’t used to happen but is a newer thing , but that seems to be the way. Thank you!

[FKM100]

Hi, it does sound like something you are eating for lunch is causing dumping - ie, it is sending your food too quickly through your stomach (or what is left of it). One of the consequences of this is that your body produces too much insulin - hence the hypoglycaemia.

The triggers of dumping are many and varied (and may be different for each of us) so it is hard to pinpoint the most likely culprit(s), but it could be the Fresubin. Not that there is necessarily anything wrong with Fresubin as such (I don't think), but drinking any kind of liquid with food tends to act as a 'chaser'. Maybe try having it on its own at some other time of day, rather than with lunch, and see what happens?

Best wishes and good luck.

[PopandMo]

I did ask a dietitian about that at one point, and she said she didn’t think so as it also has a high fat content. It’s quite hard to know as some days it’s bad and some days I’m ok! Thank you!

[Cygnet11]

Hi, I’m three and a half years post surgery and like you have found it a struggle at times. After a few serious bouts of dumping syndrome I was determined to find a solution.

Dextrose tablets were a must and I wouldn’t go anywhere without them. I would take them as soon as I woke up and again before bed. During the day if I started to crash I would take 3 or 4 which normally helped. I had blurred vision, confusion and terrible sweats and if I was really unlucky I’d have terrible diarrhoea.

I felt that I was living on a knife edge but although the dextrose helped this wasn’t really enough for me because I felt I was dealing with the symptoms as opposed to the cause of the issue. I researched ways to stabilise the spikes in blood sugar level and obviously sugar diabetes was the area that I needed to look at. Eventually I found a link that suggested that cinnamon supplements would help the spikes in sugar levels. Hey presto! Two cinnamon tablets each day and my problem was 95% cured.

I know this won’t help everyone and there is no “one size, fits all” remedy but this has made a huge impact on my dumping syndrome. Obviously you still need to follow all the other advice regarding, meal size/frequency, sugar intake, etc.

I do hope you give it a try along with others that read this post and perhaps it will just help ease you back into a more normal way of life. Good luck.

[PopandMo in reply to Cygnet11]

hi there, thank you for your reply! That’s a totally new one to me, and I’ll definitely have a look and give it a go. Anything is worth trying as I feel my life is being controlled by working around possible times of low sugar.

[kiddy]

Hi there,

I am 7 years post surgery.

Make sure you only sip water with food allow 1/2 hr to 1hr after to drink anything like tea coffee etc. Eat small portions. What you say you have for lunch is like 3 meals (snacks)leave a gap.

High fat also causes dumping although encouraged to have this by hospital when you leave to get your calories up. Eat by the clock if like me you don’t get hungry feeling.

Carry Dextrose , digestive biscuits and the best fruit Banana with you.

Yes I still get dumping but go out ,I only had 1 severe attack after eating cake with coffee that nearly sent me to hospital when collapsing.

They also say to eat a little sweet after you’ve had savoury rather than eat sweet on its own.

I also take creon that helps

Wishing you well.

Debbie

[PopandMo]

thank you for your advice! It’s a learning curve I think trying to find what works best.

[zerodrudge]

Try and avoid grease it helps me.

[cobaltgal]

Yes I get low sugar, I just drink a glass of orange juice

[Copyap]

I normally get this only in hot climate mostly within 2 hours after eating, if i eat rice, or heavy food with some sweet. I normally eat salted peanuts,piece of cheese, lemon juice with lots of sugar and ice, if no juice then i drink little bit of coca cola. Dates can be very helpful. I normally take between 30 to 120 minutes to recover.. 5 years since i had my ivor lewis.

[PopandMo]

Thank you for your reply. I also get it about 2 hours after eating lunch. I think Coke or juice seem a good idea to get that start sugar rise, then a longer lasting snack as soon as possible to prevent another rise and fall in sugar levels. It’s horrible but I hope it becomes more manageable!

[Westerlyway]

it’s reactive hypoglycemia - related to late dumping syndrome but has its own causes and solutions. Gosh I’ve learned so much in past several months with my dad who has this. I can share a few things, but we also have unresolved questions

1. Try to reduce your carbs, especially anything not low glycemic glycemic index or low glycemic load.

2 a protein, first and fats with your meals lots of fibre veggies great, but watch overall carbs these things will all help slow the digestion of carbs

3 limit fluid intake before and after meals by 30+ minutes

4 If you are starting to have a low you can try and catch it first by taking in a smaller amount low G.I. carb Yes dextrose will get you out of a low quickly but with this condition dextrose will also send you back down about 1-2hours later always recover after taking dextrose by having a high protein, healthy snack like some peanut butter or cheese or nuts and follow later with a healthy low G.I. carb with protein and fat in your snack or meal

We cannot get him back into a G.I. specialist due to a shortage in our region and the Endocrinologist we saw was not very knowledgable dad is still taking creon from post surgery 6 years ago but more recently started a Acarbose to try to help with hypoglycemia. We’re not sure the creon is still necessary and wonder in someways if it’s making things worse. He doesn’t have dumping syndrome symptoms anymore, but given that his new diet has to taking so many protein and fat I wonder if the creon is still needed

Anyone have any good advice on this?? Thank you!