Ivor lewis

[Ollies12345]

hi everyone, we had an appointment with the diabetes team today, we are trying to get dad a blood sugar monitor as his levels go as low as 2 and he nearly passes out he is 86 and lives alone we are funding the monitors ourselves as the doctor won’t prescribe them the diabetes team won’t either am at a loss where to go from here even the dietitian won’t , it is a prevention as 6 months ago we ended up in hospital the blood sugars went so low he ended up being so ill. This can be controlled with a blood sugar monitor nobody will listen to us would be grateful for any ideas many thanks xx

[Judley]

I'm so sorry to hear this Ollie and that doesn't sound right to me denying a blood sugar monitor when his levels are so low. I would be inclined to book him in with the practice Diabetic nurse, go with him. Tell them you've sought advice, they don't need to know where and say that you know it's his right to have one and it's his health! If they refuse in any way, just say "So you're denying my father a monitor that could literally save his life?" If they still won't budge just state that you will be taking it further. You can also request a referral to a specialist, or a diabetic clinic and if necessary, file a formal complaint with your local NHS complaints service or Patient Advice and Liaison Services (PALS). Hope this helps. Sorry can't be more helpful. I had no trouble getting mine but I'm sure they seem to care less the older you are! Very sad

[Ollies12345 in reply to Judley]

We had an appointment yesterday with the diabetic consultant and I printed of the reply’s on this forum that this is a common problem and he didn’t seem to comprehend. That’s a really good idea about palls, dad had a turn only last night and if it wasn’t for us buying these he would have been bad. Thanks again for your help

[liz_crisp]

Hi Ollie, its probably Dumping my levels drop to below 2 very quickly when it happens. Its quite normal after the op and you need to learn to recognise the start. Its a bit different for all of us. I find i feel light headed get very clammy, things sort of echo. I always have dextrose tablets in my pocket in a tin as i cant always open the packet when it drops. I eat as many as i need to balance it out. Others have boiled sweets, bananas, sugary drinks, whatever works best for them Its quite worrying for people with me as apparently i go grey and sweaty, my focus wanders and i get vague. It happens mostly after eating for me and i will fall asleep for a couple of hours if im at home alone rather than take aload of sugar. Ask the CNS or search on here. I am nearly 15 years on from the op and it still happens. I do have a pin prick monitor which i used to use to see if i was recognising the signs right. Some people do develop diabetes but as you are discovering it is not something the diabetes team are used to dealing with. It can happen after any food or drink not just sugary ones. Take care lizzy

[Ollies12345 in reply to liz_crisp]

Hi liz thanks very much for your message most helpful, last night dad had a turn and it happened when he was asleep went down to 2 bit of a worry as he lives alone but the monitor we buy sends an alarm to us so we can call him to eat something. Thanks again

[Bblue]

hello Ollie, sorry to hear about your dad.

I had this problem 10 years ago, all I had then was the pin prick method. I would go into grand mall seizures, I was referred to the diabetic consultant. He had to put a case together to fund the sensors. The case was the times I had to call out an ambulance would out way the cost of the sensors. I had my partner to call out the ambulances.However your farther lives on his own so if he did not have these sensors he could have a seizure or go into a coma. If you were unable to fund these sensors?

If you still have a problem, I would contact the

I C B (integrated care board) and they would look into any complaints.

I have not had a seizure since being on these sensors. It tells me when my blood sugars are going low and I take 4jelly babies and there is no spike with this method and just wait till it comes back up

Best off luck

[Cosmobabe]

Hi there!Has either your gp or the diabetic clinic offered any information as to the reason and their thoughts to why your dad's sugar levels dip.

We - the members of this group know why but have they offered any explanations or what they plan to do in order to determine the reason.

I also suffer from low blood sugars - I eat Acrobase tablets daily in order to keep my sugars at normal levels. This was prescribed by the endocrinology department as I suffer from reactive hypoglycemia and dumping. Periodically even after eating these tablets my sugars still go low but as everyone else has stated you begin to see the signs and you then take something to bring them back up.

I would go back to the gp for help.

Take care

Cosmobabe

[CelloNorth]

Hi Ollie -- some quick and hopefully helpful thoughts.

I had an IL in July 2023 for adenocarcinoma at the gastro-esophageal junction -- importantly, I had a pyloroplasty (they open the valve out of the stomach to the intestines). This accelerates food travel into the intestines with no feedback to the stomach to hang on to it longer.

I had pre-existing type 2 diabetes managed through diet and metformin (and jardiance for a bit). Post surgery I had significant issues with dumping (both early and late) and it took quite a while to work out how to deal with it. After my first serious drop to 2.2 my son (family doc) pointed me at the article below, and I've since confirmed the approach with my endocrinologist. At first it was mostly early dumping -- sudden bouts of diarrhea within 45 mins of eating. I got that under control / things got better, however I continue to have occasional issues with late dumping (1.5 to 3 hours after) where my blood sugar goes low. I find I am particularly sensitive to the hyperglycaemia symptoms as well (feeling quite stodgy, tired, sometimes nausea), which means I then am on the lookout an hour later for hypoglycaemia symptoms.

Like other posts, I've developed a strong sense of when hypoglycaemia is coming on, usually do a pin prick to confirm, and use the "15" rule -- take 5 dextrose tablets (15 gm), wait 15 min, see if things are getting better. You can use other things with sugar (the goal is rapid absorption, so simple sugars is key) but I like the dextrose tablets because it's a controlled dose with rapid absorption. I find taking 5 dextrose tablets usually fixes it.

Eating foods with a high glycemic index is a trigger for me, although it's a bit more complicated because it also matters how much protein and fat you take in at the same time. It's best to eat some protein first (or some fat) and mix in some complex carbohydrates -- sadly that means avoiding potatoes, lots of breads, pastas, rice, and other surprising popular foods with a high GI (which means rapid increase in blood sugar after ingestion). I start the day with oatmeal (cooked) as it has a good GI, is "sticky" and doesn't race through, etc. Moderate amounts of fruit work fine with it. Nuts have been a real life-saver for me as I struggle to get in the daily calories (complete change from when I used to try to lose weight). I also find too much fat can cause unpleasant responses, probably from it getting to the intestines too fast (nausea, vomiting, diarrhea).

I find in the evening my body is more tolerant of carbs, probably because of the dinner that is in the "pipe" ahead of it, i.e. slowing absorption down. Lunch seems to be the hardest, although one recent discovery is that what I might be experiencing is the long "tail" response of breakfast. That's been a recent surprise -- that late dumping from an earlier meal might appear after eating the next meal.

I wore a continuous glucose monitor for a while (Libre) as I was trying to get it under control, and it definitely helped. Our equivalent to NHS (OHIP / Ontario drug benefit plan) is a little stingy on what they will support -- typically targeted at Type 1 diabetes. My private insurance was more supportive. After getting things under control my endocrinologist advised that I didn't need it so I stopped, however I do rely on pin picks on a daily basis as things continue to change (I also had autoimmune hepatitis from my immunotherapy which required high doses of prednisone for a while, which really messes with blood sugar).

I've had wonderful care, but I really find that there is a gap for treating early / late dumping in people in our condition (IL). My dieticians were more versed in other issues (diabetes, etc.) but didn't have the specifics related to our situation (e.g. drink boost / ensure during recovery to get the extra calories in, but they are loaded in sugar / carbs and really exacerbated things). There is some good overlap with people who have had bariatric surgery (stomach reductions etc.) and I think they suffer similarly, although they may not have the issues that I have from my pyloroplasty (straight through flow of food).

I also try to stop eating at least 2 hours before bed (paradoxically I am most interested in food in the evening, probably because my food system is most normal at that time). This is important to avoid reflux (I sleep on an inclined bed), but equally ensures that I don't get sugar lows in the middle of the night (I read on a diabetes website that if you wake up with a headache in the morning it can be a sign of hypoglycaemia overnight).

I have found that volume of food eaten really matters -- I'm very sensitive to overeating (usually a the top end of the system) but I think it also results in faster movement of food into the intestines which can increase trouble. I work hard to not eat too much at a sitting and it seems to help.

One extra note of caution for alcohol -- I didn't drink anything for 1.5 years around my cancer diagnosis / chemo / radiation / surgery), and now allow myself a small amount of wine at special occasions. It can mess with blood sugar / hypoglycaemia so some caution is needed (particularly at night).

I have found the following 10 points to be helpful -- low GI foods, no more than 30gm of carb at a "meal" (I'm supposed to eat 6 times a day), don't drink fluids with the meal (stop 30 mins before and then wait 30 mins after, although I need fluids to wash things down but only drink a little), etc.

There are food apps out there that can tell you GI of foods, also the University of Sydney has a site as well -- glycemicindex.com/gi-search/ . Tapping into the plentiful diabetic support out there can help, although you really have to adapt it to your specific situation (i.e. it's an over-response of insulin to simple carbs in your intestines that then results in over-correction and low blood sugar as a result). Some foods I've learned to substitute -- oatmeal, oat flour (although usually mixed with wheat flour in breads which doesn't help that much), buckwheat (not really a wheat), kasi (or kasa -- buckwheat grouts), lentils / pulses (complex carbs, protein, really helps, including hummus), chickpea pastas, nuts.

I hope this is helpful, and wish your dad (and you) the very best in managing it.

ncbi.nlm.nih.gov/pmc/articl...

summary points from the article (which has some useful but technical explanations -- the time graph is interesting to see the different waves of response which may shed insight).

Control portions of carbohydrate – 30 grams/meal, 15 grams/snack.

Choose low-glycemic carbohydrates.

Avoid high-glycemic carbohydrates.

Include (heart-healthy) fats in each meal or snack – 15 grams/meal, 5 grams/snack.

Emphasize optimal protein intake.

Space meals/snacks 3–4 hours apart.

Avoid consuming liquids with meals.

Avoid alcohol.

Avoid caffeine.

Maintain post-bariatric vitamin and mineral intake.

[Ollies12345 in reply to CelloNorth]

Thank you so much for your very informative reply , it’s been really helpful you seem to be managing really well. I will have another read when I’ve finished work today thank you again and best wishes to you.

[Magicwands in reply to CelloNorth]

I had an IL about the same time as you, and also had a pyloroplasty.

Interestingly, I seldom get early dumping; late dumping seems to be more of an issue. I try to be very aware of my carb intake, like you, and most of the time I'm fine. However I have found two particular triggers for me.

1) two carby meals in a row (for example oats for breakfast, followed by pasta for lunch) even if I make sure to add protein and fat.

2) eating something carby on an empty stomach. I could eat a piece of chocolate cake after a meal but couldn't eat it as a snack (try not to do that too often anyway!)

I found keeping a food diary really helped to establish connections and I also noted when I got the symptoms. Before that, it felt quite random.

Ollies12345 do you think your dad would manage a food diary to see if you can work out what's triggering his hypos? I noted down everything - meals, snacks, drinks - every day and also what symptoms I had and when. I really hope you get to the bottom of it and also manage to get some help for him.

Jules