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Anybody got any suggestions

D

DEBBIESCOTT

Well-Known Member
Messages
4,163
Location
Lincolnshire
Type of diabetes
MODY
Treatment type
Tablets (oral)
I was diagnosed with gestational diabetes back in 1997, unfortunately it never went away. Stopped eating any sugar and HBa1C’s have sometimes come back in the diabetic range sometimes not. Not had an HBa1C for a few years as have been doing low carb.
Had test in May 2021 and a1c 128, blood test was 18,nurse panicked and wanted to call an ambulance, told her I felt fine.
Was put on 80mg gliclazide for one week, then told to increase to 160mg the week after & 240mg the week after that.
One tablet reduced my blood sugar from 18 to 6 in 3 hours. Saw a DSN who told me to not increase it and to split it between morning & night & to keep a food diary & email it to get every week, keep being told something isn’t right as blood sugar too low for medication & what I’m eating . Saw doctor at local hospital (go with special interest in diabetes). He doesn’t think it’s actually type 2 but doesn’t know what it is. Explained as something happens and blood sugar goes up, gliclazide gives pancreas a kick and it goes back to normal, told me to eat low carb.
Minutes later dietitian told me to eat the eatwell plate and if blood sugar went up I needed more medication.
Gliclazide stopped beginning of June as blood sugars too low & put on 500mg metformin, 5 weeks later blood sugar started rising again again so put back on 40mg metformin & given a libre, have to fill in food diary on this if everything I eat, by August and many hypos later was taken off gliclazide again. 2 weeks later back on 20mg gliclazide & 2 metformin and having to have some starchy carbs at each meal or I still hypo, just had a1c of 34. Anybody have any idea what’s going on I’m 5ft 4, weigh 48kg and eat about 2,500 calories a day, don’t sleep, never hungry have dizzy spells most days, gad test negative, c-peptide test showed I was making a lot of insulin. DSN has spoken to consultants and both said to put me on insulin
 
I'm no expert by any means so I can't understand the logic of being forced to eat starchy carbs to avoid hypos. Lack of carbs will not cause a hypo but over medication most certainly will.
Could you give us an idea of typical days food? Maybe someone can spot something that is causing your levels to rise. Do you test before and 2 hours after your meals to see what they are doing to your blood sugar ?
 
Reactions: ert
I’ve got a libre so scan all day, on 20mg of gliclazide I hypo if I don’t eat a small amount of starchy carbs, without it blood sugar is all good until something (don’t know what) happens and it starts to climb again, just a case of waiting for it, no hypo awareness, been down to 2.4 on glucose meter & not known
I typically exercise before breakfast, run, swim or gym (weights only)
Breakfast usually black coffee, slice soughdough toast with butter, marmite, whole avocado & 2 poached eggs with blueberries & nuts or
Black coffee scrambled eggs with mozzarella, whole avocado, 25g porridge oats with almond milk, cinnamon, sunflower seeds, blueberries & nuts
Lunch usually a big salad with quinoa or wholegrain rice, source of protein & cheese & nuts
Normally have to have 3 apricots & 5 Brazil nuts (especially if I’ve been on peleton bike) but usually every day just to get blood sugar up to 5 so I can drive home
Dinner either salmon or other source of protein & vegetables, if I have carbs like a bit of wholegrain rice or a sweet potato I have alpro yogurt with nut & seeds for pudding if it’s just protein & veg I have a bodycoach banana, oat & blueberrry muffin with cheese & a handful of nuts.
B/s normally spikes an hour after then 2 hours
later lower than when I started, but can go up again briefly 2-3 hours after that.
Urine c-peptide/creatine ratio 3.34 nmol/mol
Urine creatine level 1.70mmol/1
Had liver ultrasound- normal
 
Do you remember what you ate before all this, and were doing low carb? Because you're carb-loading massive amounts now to accommodate medication, but it'd be helpful to know what was going on before you switched to these meds and this way of eating. Sometimes people think they're low carbing when they're putting away a lot of hidden carbs. Not saying you were, but it'd be nice to be able to rule it out for sure.
 
Hi @DEBBIESCOTT and welcome to the forums.

Unfortunately not everyone fits into a neat box diabetically and it sounds as though you may be one of those people who are a bit special.

Am not a doctor and forum rules wouldn't allow me to diagnose even if I was but I have a few thoughts.

Firstly, are you continuing to see diabetic consultants/specialists? There are a few tests for weird diabetes types (eg MODY which is genetically linked) which they can do if you don't fit into any obvious patterns. And occasionally people post on here with even weirder types that I can't even remember the names of, but which your specialists would know.

Some people get reactive hypoglycemia along with T2. @Lamont D is very knowledgeable on this. He goes lower carb to avoid insulin spikes.
 
On the diet side, I would stick to either high carb or low carb and not mix both, although on the face of it for a metabolically healthy individual the make-up of the diet looks fine. My bias is towards low carb and higher protein, but maybe low carb and higher fat might work better for you; in either case by having a flatter overall dietary hit on your system, I think you will be in a better place to understand and manage, or at least provide a safer position to get medium to long analysis.

I would swap the following:
  • soughdough toast - protein bread toast (Maria Emmerich, you can add psyllium husk)
  • Porridge oats - toasted coconut flakes (6 grams per 100 of carbs)
  • apricots - raspberries and strawberries
  • wholegrain rice - cauliflower rice / bean sprouts / mushrooms
  • sweet potato - butternut squash
  • bodycoach banana - I would drop this not sure for what
The above will lower your starch / glucose load, whilst being mostly a similar item. I believe insulin would be the wrong move based on your ability to clear glucose.

You might want to consider working out after your meals, and seeing if this possibly along with the other changes makes a difference. As you clear glucose so readily you are going to have to be extra vigilant; maybe it is time to seek the help of Trudi Deakin at Expert Health -but do keep extensive diaries and cross references to everything you do, so that if you do get professional help, they have real documentation to go on.
 

Wow your medical team appear to be completely clueless..

You are taking medication that is causing you to hypo yet rather than stop that they want you to eat carbs to counteract the drug side effects.

If you are a classic T2 insulin over producer (which they know is the case according to your c-peptide) then the last thing you need are more carbs or insulin (or by the looks of things gliclazide).
 
Reactions: ert
Hi, @DEBBIESCOTT,

Have they given you an oral glucose test, if they have, was it 2 hours or longer?
Have they given you a c-peptide test?
Are you on other meds for other conditions which could effect your BS?
Have they given you a insulin test to see how much insulin you have circulating?

I have Reactive Hypoglycaemia.. My condition is because of my insulin response is not balanced enough to allow me to eat carbs.
It is carbs and sugar that raises B.S. levels and if your hormonal response (insulin) triggers an excess of insulin, then the likelihood of Hypoglycaemia is causing the symptoms.
In my initial response carbs, it is not enough, so my BS rises quickly, then depending on how much carbs, I need a second insulin response. This response is called an overshoot. This happens between 45 minutes and an hour. Then slowly but surely my B.S. goes down into hypo levels because there is too much insulin.
Now, that happens because I'm I got a referral and a true diagnosis.
Having hypos, is not fun. What doctors don't understand is you can get high BS numbers and be misdiagnosed as T2. Because lever time, you lose all sensitivity to hyperspace and hypos. The insulin resistance builds up so more insulin is created, but it doesn't matter because of insulin resistance, your Hba1c will go up, your insulin resistance goes up, your insulin levels go up. And the roller coaster ride of high and low B.S. levels goes up and down all day.
I was really ill and being told to eat complex carbs. And eat something every three hours to prevent hypos, but it doesn't because of the excess insulin and low initial insulin response.

Because of control, I am now non diabetic, and I can fast and it will stay in normal levels, my hba1c is 37 (3 years now).

I believe that there is more than T2, going on here and a referral to a specialist endocrinologist who has experience of Hypoglycaemia

If you do have Hypoglycaemia, you may need to alter your fitness regime, as exercise can if you do too much, can trigger the Hypoglycaemia.

Best wishes.
 
I was doing low carb, but got to the point where I was eating from getting home from work to going to bed everyday as nothing quite hit the spot, think that’s why a1c was 128
 
 
Saw doctor in August who said I shouldn’t be eating up to the gliclazide so took me off it again and said I wasn’t technically diabetic anymore, but if blood sugar went up to 12 I could panic and have 20mg a day
 
I have to have carbs on gliclazide, when I’m taken off it I cut all the starchy carbs only have homemade no grain bread and have more fat, butter on vegetables and coconut oil in tea & coffee, blood sugar always rises again at some point and the gliclazide returns,
 
DSN had spoken to 2 consultants this summer (I can’t get to see one) and the response from both of them has been just put her on insulin, she thinks they look at my BMI (around18) and think I must be type 2 or lada
 
I had an oral glucose test in 1997 and diagnosed with gestational diabetes, no other medication, c-peptide test done in May this year
Itinerary c-peptide/creatine ratio 3.34 nmol/mol
Urine creatine level 1.70mmol/l
 
DEBBIESCOTT said:
I was doing low carb, but got to the point where I was eating from getting home from work to going to bed everyday as nothing quite hit the spot, think that’s why a1c was 128
Click to expand...

The combination is Low Carb High Fat.
The high fat is supposed to stop you feeling hungry.

If you increase the proteins and fats and reduce the carbs you might be able to strike a balance.

From what you have said, gliclazide doesn't seem to be the most helpful choice and insulin is not normally prescribes as a cure for hypos.

As others have said, you need to see a specialist endocrinologist who has expertise in Reactive Hypoglycemia if only to rule it out.

It might be worth (with your health care team) having a dietary reset and cutting out almost all the carbs and adding in protein/fats.
Cutting the gliclazide at least until you have a baseline.

As you are very active you might increase your portion sizes.
A simple example would be to have 3 or 4 eggs instead of 2.
It isn't clear to me if you eat meat ("other source of protein").
You don't mention portion sizes, so it is difficult to work out the balance of your eating plan.
Avocado is good. Perhaps add mayo?
Your food list looks balanced but I can't see a lot of fats unless you eat a lot of cheese.
 
I’m going to try & speak to my DSN next week, yes I do eat meat, lots of steak, pork steak, chicken, turkey, sausages & I do eat a lot of cheese, nuts, butter & coconut & coconut oil, but it is really hard to eat enough calories when you’re never hungry
 
I eat on average about 2,500 calories a day to maintain my weight
 
Your c-peptide is within the normal range but it is quite close to the edge.
This means you are producing insulin, so looking at the result, why would they want to have you on insulin? Doesn't make sense.
The other thing that doesn't make sense and I did mean to ask in my previous post, is the glicizide. It is a B.S.lowering drug and is designed to help with insulin production but clearly that is not the case. I would have thought a Gliptin or another diabetic drug could be more beneficial or no meds and a carb free diet. Ditch the glic!
I would ask for an extended oral glucose tolerance test (5 hours), so it would show wether it is a reaction to the glucose you have Hypoglycaemia.

I have just reread your posts. A food diary is important, it will help your team, see the results of carbs on your B.S.. again I do believe that if your fasting and Hba1c levels are in normal levels before you eat, then you spike higher than normal, then you hypo, it is Hypoglycaemia. And ask your consultants if they have considered Hypoglycaemia as a consequence of carbs such as RH!
There are quite a few different Hypoglycaemic conditions.

If you haven't read the RH forum, there is some great information there. And it might convince you to get yourself sorted and get on to your endocrinologist about considering RH!

I wish I had this resource when I was going through what you are going through now!
I battled over a decade and numerous doctors and dsns and even one specialist that didn't have a clue.

Best wishes.
 

I have never counted calories!
I am never hungry, I fast most of the day, have a window of food from mid afternoon to 7pm. I've got a nice fresh salad for this afternoon and home made curry later.

If you think about how much food we eat, the portion size is too big, the amount of meals is too much, the obsession since childhood is to have four square meals and snacks, at certain times of the day. It's ridiculous! Five fruit and vegetables! No way!
You could eat some fresh meat with the fat on and that is enough. Maybe a little something with the meal. Why do you need to stuff yourself if you don't have hunger?
If you are ill with a fever, you don't stuff yourself with food (chicken soup), it is more important to drink water and add a few nutrients from something like diahorlite.
 
Totally agree, I have 3 meals a day and fast from 7pm until 10am, only have a snack in the afternoon If blood sugar too low to drive home, always eat the fat on meat also, it’s the best bit.
Only downside is I’m 5ft 4 and weigh 48kg, I have no weight to lose. If I’m Ill I can lose half a stone in a matter of days, people already think I’m too thin and don’t eat
 
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