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At my wits end - running out of ideas

N

notorious_bob

Active Member
Hi all,

I was diagnosed about a year ago and have tried a whole bunch of stuff but can't get my Bg or my DP under control. Last month I had a really bad infection and spent a week in hospital - no doubt the diabetes played a part and I'm getting resigned to the fact that it's slowly killing me.

They took my A1c in hospital and, no surprises, it was 12.1 - my Bg is "always" between 10-12 no matter what I do. Highest 1st thing in the morning as my liver dumps whenever it feels the need to.

The hospital folks put me straight on Lantus - 1st time I'd been on insulin (I've been on metformin and januvia with no success), 15 units before bedtime. Around 3am I would wake up in a pool of sweat, literally needing to towel off, and 1st thing my Bg would still be the same i.e. 10-12.

Typically, I'll start getting symptoms of hypo when my Bg hits 6.5 - ridiculous isn't it :(

Switched the insulin to the morning and I find that I get more and more fatigued as the day goes on, but at least I'm not experiencing a hypo in the middle of the night (at least that's what I assume it is).

I should say that I don't eat sugar, am allergic to wheat, rice etc. so don't eat those, try and keep my carb input below 30g per day aka, sorta Adkins.

I'll be honest, the whole thing and reading these forums of people stressing about readings around 100 mg/dl scares me to death. The anxiety of not being able to bring down my numbers despite efforts is starting to get to me. I also have a young son and I'd really like to see him grow up.

Please, any ideas about what to try next. Friends have suggested alternative therapies, but I firmly believe that even if I became purely carnivorous, I'd still have high blood sugar.

Any thoughts or suggestions would be very, very welcome.

P.
 
Hi. What is your BMI? if you are not overweight and constantly have high blood sugar then suspect being T1 and not T2 (that was my problem). There are two tests that help diagnosis the GAD and c-peptide, the latter can be more useful as it tells you what your insulin production level is and if very low you are T1 and need insulin. If you do need insulin then you may well need to go onto the full Basal/Bolus regime rather than just the Basal (Lantus)
 
Hi notorious bob and welcome to the forum. As this is your first post I’ll tag in @daisy1 for her useful welcome info post. Now I don’t take insulin so will refrain from any advice, however can you give a bit more info on your diet, maybe post a typical days menu. That’ll help people who feel able to help you.
Just to mention also that feeling hypo at 6.5 isn’t ridiculous as your body has been used to running at higher levels so panics when you drop down nearer normal.
 
Daibell said:
Hi. What is your BMI? if you are not overweight and constantly have high blood sugar then suspect being T1 and not T2 (that was my problem). There are two tests that help diagnosis the GAD and c-peptide, the latter can be more useful as it tells you what your insulin production level is and if very low you are T1 and need insulin. If you do need insulin then you may well need to go onto the full Basal/Bolus regime rather than just the Basal (Lantus)
Click to expand...

My BMI is 26.5 - my GP has referred to me as a "skinny diabetic". Sure 20 years ago when I was 140lbs I was skinny but not so much now :/

I'm maybe 10lbs over a "normal BMI"
 
Rachox said:
Hi notorious bob and welcome to the forum. As this is your first post I’ll tag in @daisy1 for her useful welcome info post. Now I don’t take insulin so will refrain from any advice, however can you give a bit more info on your diet, maybe post a typical days menu. That’ll help people who feel able to help you.
Just to mention also that feeling hypo at 6.5 isn’t ridiculous as your body has been used to running at higher levels so panics when you drop down nearer normal.
Click to expand...

Hi there, OK, normal days diet....

Breakfast - I make a frittata (eggs, ham, shrooms, cheese, onion) and have a piece of that. I make one in a frying pan and it lasts me a week. I drink tea, white, sweeteners, no sugar, although I still use full fat cows milk - it's my guilty pleasure.

Lunch - Pure Protein bar or shake (shake made with almond milk)

Dinner - stuff like meat with salad (I'll make my own kebab meat) or fish tacos without the tacos. I'll treat myself to zero sugar chocolate pudding from time to time.

Bedtime snack - low carb, high fiber wrap (tinkering with quantity between 1/4 and a full one which is 8g of carbs) with deli meat and a little cheese.

I generally don't snack or eat between meals but if I do it's cashews or sugar free sweets but not a regular thing.

That's it. I know I probably don't drink enough water.

Howsat?!

BTW, I'm an exiled Brit living in the USA :)
 
notorious_bob said:
Hi there, OK, normal days diet....

Breakfast - I make a frittata (eggs, ham, shrooms, cheese, onion) and have a piece of that. I make one in a frying pan and it lasts me a week. I drink tea, white, sweeteners, no sugar, although I still use full fat cows milk - it's my guilty pleasure.

Lunch - Pure Protein bar or shake (shake made with almond milk)

Dinner - stuff like meat with salad (I'll make my own kebab meat) or fish tacos without the tacos. I'll treat myself to zero sugar chocolate pudding from time to time.

Bedtime snack - low carb, high fiber wrap (tinkering with quantity between 1/4 and a full one which is 8g of carbs) with deli meat and a little cheese.

I generally don't snack or eat between meals but if I do it's cashews or sugar free sweets but not a regular thing.

That's it. I know I probably don't drink enough water.

Howsat?!

BTW, I'm an exiled Brit living in the USA :)
Click to expand...

Thanks for posting that, I hope it’ll help Insulin users to make some suggestions for you.
 
If you really are eating 30g of carbs a day, (I made mistakes sometimes in my own calculations) and still seeing numbers like that, I'm not too sure you're a T2... Really need to get that checked out. T1, mody, lada, they're all options and require different treatment. Also, 6,5 isn't a hypo. But if you're high all the time, your body will respond as if it is. It's called a false hypo. (Once your body gets used to being lower, those'll go away.). Right now I'm more concerned about whether they got the diagnosis right. Because you should be seeing lower numbers than that on your diet... Good luck!
 
JoKalsbeek said:
If you really are eating 30g of carbs a day, (I made mistakes sometimes in my own calculations) and still seeing numbers like that, I'm not too sure you're a T2... Really need to get that checked out. T1, mody, lada, they're all options and require different treatment. Also, 6,5 isn't a hypo. But if you're high all the time, your body will respond as if it is. It's called a false hypo. (Once your body gets used to being lower, those'll go away.). Right now I'm more concerned about whether they got the diagnosis right. Because you should be seeing lower numbers than that on your diet... Good luck!
Click to expand...

Sortof sounds like my GPs response at the beginning - disbelief until I drag out my food log or Bg log and prove it. For a while I went full on < 20g Adkins. Lost some weight, didn't do much of anything to my Bg. Running a bit higher these days coz my evening snack adds between 2-8g. But hey-ho.

I realise that 6.5 isn't hypo, never said it was. But as a false hypo it's doing a **** good impression. I try to avoid those especially during the day because I can't think straight when they happen. Typically my Bg responds normally after a meal, although my Bg always runs high. 4 hours after eating though, my Bg starts to climb - DP during the day. I got tired of sticking my fingers 10 times a day just to prove it to my GP... got a nice Excel graph out of it though.

As for being T1 and not T2, well the docs never suggested that one...

As I said, when yiu GP basically says "******** if I know" then it gets a bit disconcerting. Seems like I need a 3rd opinion and I'll be off to an endocrinologist.

Anyone have an opinion of naturopathic medicine?

P.
 
notorious_bob said:
Sortof sounds like my GPs response at the beginning - disbelief until I drag out my food log or Bg log and prove it. For a while I went full on < 20g Adkins. Lost some weight, didn't do much of anything to my Bg. Running a bit higher these days coz my evening snack adds between 2-8g. But hey-ho.

I realise that 6.5 isn't hypo, never said it was. But as a false hypo it's doing a **** good impression. I try to avoid those especially during the day because I can't think straight when they happen. Typically my Bg responds normally after a meal, although my Bg always runs high. 4 hours after eating though, my Bg starts to climb - DP during the day. I got tired of sticking my fingers 10 times a day just to prove it to my GP... got a nice Excel graph out of it though.

As for being T1 and not T2, well the docs never suggested that one...

As I said, when yiu GP basically says "******** if I know" then it gets a bit disconcerting. Seems like I need a 3rd opinion and I'll be off to an endocrinologist.

Anyone have an opinion of naturopathic medicine?

P.
Click to expand...
Don't get me wrong, it's not disbelief! It's just that sometimes (okay, often) people say they're low carbing, but when asked eat pasta, rice, bread and potatoes... Because half the time the advice they originally got was faulty, or they're just guessing with EatWell in mind. So it's more a "just checking", to get my own advice to you right. If your doc's doing the Hell-if-I-know, you shouldn't have to ask to see an endo; they should have suggested it themselves! Because you do need help with this, and right now, you're not getting it. Ask for a referral to one as soon as possible. Because to me, this just really doesn't sound like T2. Late onset T1 maybe? I'm not a doctor, obviously... But you need help with this. (GP's aren't usually specialised in diabetes, so getting a second opinion from a GP instead of going straight to an Endo might just mean you have no answers for longer). Far as naturopathic goes, CBD-oil mitigated my insulin resistance some, but that's about all I have on offer. Diet worked for me, so I haven't explored other avenues... Sorry.
 
As mentioned and apparently since moving to the US, I've developed an allergy to all "grasses" - probably down to Mr Monsanto or whatever they do to "enrich" stuff. So no wheat - bread, pasta, cereals, grains. Potato I avoid at home as I just dont have time to prepare them most of the time although I could kill for roasties sometimes!

Seriously though, being in the USA makes me sick! Literally!
 
I take Lantus, and have a similar problem with it. It seems to have a peak at 4 hours, which would explain your night time hypos. It always does that for me as well, blood sugar goes too low after 4 hours, and then zooms up. So increasing the dose to deal with the morning high is impossible.

I suspect you have shifted that problem from the night time to the morning. That peak can be reduced by splitting the dose, half morning, half evening. But there is no perfect long acting insulin, they all have their weird quirks.
 
@notorious_bob

Hello Bob and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it useful and interesting. Ask as many questions as you want and someone will help.


BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:
  • Reduce your carbohydrate intake
  • Choose ‘better’ carbohydrates
Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 8.5 mmol/l
Blood glucose ranges for type 1 diabetes (adults)
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 9 mmol/l
Blood glucose ranges for type 1 diabetes (children)
  • Before meals: 4 to 8 mmol/l
  • 2 hours after meals: under 10 mmol/l
However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:
  • structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
  • self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.
Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

  • Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why

  • Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
 
Alison54321 said:
I take Lantus, and have a similar problem with it. It seems to have a peak at 4 hours, which would explain your night time hypos. It always does that for me as well, blood sugar goes too low after 4 hours, and then zooms up. So increasing the dose to deal with the morning high is impossible.

I suspect you have shifted that problem from the night time to the morning. That peak can be reduced by splitting the dose, half morning, half evening. But there is no perfect long acting insulin, they all have their weird quirks.
Click to expand...

Today is a good example of why I'm stressed out...

Woke up, Bg at 6:30am - 191 (10.6) - zero carbs since 5pm the previous day
Took my 15 units of Lantus
Breakfast maybe trace carbs from the onion in the frittata. Cup of tea with 1/2 tsp of raw cane sugar as my treat.
Nothing else
Bg at noon 201 (11.1)

Anyone would think that I was sucking on sugar sticks all morning! :( :( :(
 
notorious_bob said:
Today is a good example of why I'm stressed out...

Woke up, Bg at 6:30am - 191 (10.6) - zero carbs since 5pm the previous day
Took my 15 units of Lantus
Breakfast maybe trace carbs from the onion in the frittata. Cup of tea with 1/2 tsp of raw cane sugar as my treat.
Nothing else
Bg at noon 201 (11.1)

Anyone would think that I was sucking on sugar sticks all morning! :( :( :(
Click to expand...

If the DP is pushing your blood glucose up over night it may be better to eat a small amount of carbs in the morning. I have discovered a weird thing recently. Since I got Freestyle Libre I wait, after I've injected, before eating breakfast, until there's a small drop in my blood sugar, to make sure the insulin has started working.

The other day I had breakfast late, and I sat there for ages waiting for a small drop, and there wasn't one. Then I gave up and decided to eat anywhere, and about ten minutes later my blood sugar started going down.

I think eating affects the cortisol that causes the dawn phenomenon, so though it's counter intuitive actually eating a small amount of carbs might be better.
 
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