Feel like I’m banging my head against a wall!

[Peckj02]

Hi everyone,

I hope you don’t mind me having a little rant, but thoroughly fed up. I was diagnosed type 2 sept 16 (although had gestational diabetes with youngest son 8years earlier)

I was started on metformin but couldn’t tolerate it or the slow release version. Was so Ill with it. However when I was taking it it worked and brought my hba1c down to 41.

Then went on to glicazide eventually raising to the maximum dose. Hba1c kept going up not down so 6mnths ago was started on alogliptin too. After 3 months on it hba1c went from 62 up to 70 was told that I had to be on it for 6 months before they would change it. Have now had my 6 month check and hba1c has now gone up to 75. Plainly the medication is not working properly.

Made an appointment for yesterday to see them about latest results and hoped to get a medication change only to wait 50mins as they were running late, to be told “I don’t know why they’ve booked you in with me as I can’t prescribe anything” not the nurses fault I know but so frustrating nearly burst into tears in the room. Have now got an appointment with the dr for Monday. I am just so fed up have definitely got burn out from it all. Can’t see a light at the end of the tunnel.

Thanks for letting me have a moan x

 

[Robin101]

Hang in there! Sadly the medical profession are genuinely under so much pressure they seem to have lost sight of the fact they are here to help us, the public! I've found self help to be more reliable for sure. I know T2 is a very personal experience but for me the key is diet. I'm an engineer so tend to focus on technical things (includes medical!).
Exercise is good, but being merciless on cutting carbs is still the best way. I've identified foods that I absolutely can't go near (any pizza, any sausage, any bread) and all other carbs I actively try to do without. The oddity is that I have a spoonful of honey with fresh garlic chopped into it every morning and that doesn't upset my BG at all? Go figure. And Good Luck!

 

[liarsdance]

I can see you are feeling let down by your doctor, but taking a little control over your diabetes can have a really positive effect both physically and emotionally. I'm very new to this myself (only diagnosed this April) but I would also urge you to look very carefully at your diet and cut back as much as possible on your intake of processed foods, grains, sugar and fruit. This approach is working really well for me. There are many other people on the forum with a vast amount of experience and I'm sure they will be coming along to add their support. You're not alone here!

 

[sally and james]

@Peckj02
@Robin101 and @liarsdance have given you excellent advice, ie cut right down on the carbs and sugars in your diet. For many, that brings blood sugar levels down to non-diabetic, without the aid of meds.
If you are eating what passes for a normal diet these days, or following the Eat Well Plate or similar advice handed out by many doctors, you are simply piling more and more sugar into your body and then expecting various drugs to make your body work much, much harder to get rid of the sugars. Of course it doesn't work.
Have a good look at the https://www.dietdoctor.com/ site for good, clear information about low carb diets. There's no need to let it get you down, you just need to take control.
Sally

 

[Robin101]

I think key for me was realising that managing T2 is actually quite hard work BUT succeeding makes other stuff easier, I'm losing weight, moods are better, more useful energy.
You don't have to be fixated and consumed by it - but it's not easy. I eat before I exercise (used to be after), I don't eat after 7pm. Drink yes, eat no. (ps Vodka and diet coke is ok. Seems to give my liver something else to do instead of messing my BG!).
No fruit - it just doesn't work for me.
Working out what does and doesn't work is key, and to start with assume everything is bad, gradually allow stuff that you know is ok.
Be suspicious of food labelling. Low fat usually equals high carb. Low salt likewise. High Protein doesn't mean low carb either.
There isn't a quick fix - but there's a lot you can do to improve.
Robin.

 

[first14808]

Be cautious with drinking alcohol, especially if the medication says don't. It can either negate or increase the effects of medicines and be potentially dangerous.

But like others have said, it takes some trial and error, and some time to find a diet that works for you. So nag your GP for a glucose meter & test strips, and test pre-meal and then 2hrs after. That will give you an idea of what meals work for you, and which spike your glucose levels. Usual suspects are the high carbohydrate foods, so reduce & ideally replace spuds, bread, rice, pasta with greens and other veg. So that starts you on the LCHF way.

Key thing I think is to find low-carb foods and meals that you enjoy eating, and there's loads of suggestions and advice here. Like using lettuce leaves as wraps instead of bread I still like that idea, and tis the season for it now!

And be patient, and don't expect miracles. Switching to low carb eating usually results in both weight loss and healthier HbA1c results, but it takes some time to adjust.

 

[Peckj02]

Thanks everyone for your replies and advice. I do have a test kit and have been checking regularly so have a pretty good idea which foods tend to give me a spike.

I do try my best with keeping my carbs as low as possible but do have the odd blip (emotional eater) I very rarely drink alcohol either.

Even the nurse said she couldn’t understand why my results are just going up and up. She suggested the dr might refer me to an endocrinologist.

My father in law passed away in November from complications related to his diabetes. He’d previously lost 3 toes too. I think this is probably making it play on my mind more than it normally would.

When I last saw the nurse practitioner he said “well 70 isn’t really that high” I felt he wasn’t really taking my fears seriously so I’m hoping Monday’s appointment goes a lot better

 

[Robin101]

Ha! Yes I should have mentioned/cautioned if you DO want a drink then Vodka and a diet fizz mixer is probably best. Doesn't mean you HAVE to drink
I tried cutting down on the high carb food stuff but as I lack will power I my portion sizes and control gradually drifted back up.
So last 6mths I just found it easier (eventually) to say no. It is almost as hard as when I gave up smoking (but that was 22 years ago!). I'm only on Metformin but with 'average' diet control Hb was around 60s. With same Metformin and strict diet around 40.
I agree, testing is key so you absolutely know what's happening. I've now cut down to testing 1st thing when I wake up, and then early evening before tea. I am controlling the food part of the equation so I am now more focussed on what sugar my pesky liver is dumping into my system. Slow process indeed.

 

[alf_Josiah]

I'm not an expert, but can I suggest you keep a food diary.
As others have said more people will step in to offer perhaps more relevant advice.
Good luck and don't give up.

 

[Robin101]

I'm not an expert, but can I suggest you keep a food diary.
As others have said more people will step in to offer perhaps more relevant advice.
Good luck and don't give up.

I am not promoting in any way but I use a free app from Medivo called On Track. Allows me to keep track, look back at visible history and take notes aka Diary. I've tried a few but for Android this is best I've found.

 

[Mbaker]

A lot of good advice has been provided. You might want to consider very simple meals for a week, literally doing the same things to be consistent e.g.

Breakfast
Bacon, Eggs, Mushrooms, small salad or spinach

Lunch
Seabass, Asparagus, Mushrooms, Tomatoes
or
Raspberries, Blackberries, Blueberries, Strawberries, Macadamia Nuts, Almonds, 2 scoops of full fat Greek Yogurt or Fromage Frais, Sprinkled with Flax Seeds

Dinner
Salmon or Meat, Cauliflower or Broccoli, Courgette, Radish

These are just some ideas for consistency. I would roast a chicken, cut this up and freeze in case of cravings.

 

[DavidGrahamJones]

Was so Ill with it. However when I was taking it it worked and brought my hba1c down to 41.

Sorry to hear you're fed up. This disease isn't as straight forward as some might think.

It's interesting that the Metformin worked and the Gliclazide didn't. The way these drugs work is different.

Metformin lowers the amount of sugar produced in the liver, and also increases the sensitivity of muscle cells to insulin.
Gliclazide is used when dietary changes, exercise, and weight loss are not enough and works mainly by stimulating the cells in the pancreas that produce insulin to produce more insulin.

Your GP could add yet another drug, but as forum members have already mentioned lowering the carb content in your diet will help tremendously. It can even help managing Metformin, at least it made a difference to my tolerance of a drug that initially made life hell.

 

[Jenny15]

When I last saw the nurse practitioner he said “well 70 isn’t really that high” I felt he wasn’t really taking my fears seriously so I’m hoping Monday’s appointment goes a lot better

In my opinion this nurse practitioner is just plain incorrect. The guidelines she is meant to be following disagree with her.

If I were you, I would ask my GP what level of HbA1c is going to be the agreed target to get below. It might be 48, or 55 for example.

I would also say I want to be under that target within 3 months, having waited quite a long time already.

It is possible to get from 75 to 55 within 3 months using just food changes, or food changes and one or more of the many blood glucose lowering drugs available.

I hope when your GP reviews your A1c levels since diagnosis he is of the same mind as me, that you need to start a treatment plan right now that will get your BGs out of the danger zone within 3 months.

This approach to treatment decisions is what is required by the official UK diabetes treatment guidelines. (I'm assuming you are in the UK).

One last thing... you mentioned you almost burst into tears. Many times in the last 30 years I have found that letting this happen has made my doctor or nurse realize how bad things are for me. It is even more effective if you don't have tissues on you, because then they feel a need to pass you theirs. I've never deliberately used tears as a tactic; it's just that on each occasion I really was so upset that I couldn't stop it happening.

Trust your instincts. You know the doctor/nurses need to offer more options for you to consider. My 9 years of experience with diabetes tells me your instincts are right. It's not their eyesight, kidneys and legs that are at risk from high BGs over time. Fight for what you need.

Good luck.

 

[pollensa]

Hang in there! Sadly the medical profession are genuinely under so much pressure they seem to have lost sight of the fact they are here to help us, the public! I've found self help to be more reliable for sure. I know T2 is a very personal experience but for me the key is diet. I'm an engineer so tend to focus on technical things (includes medical!).
Exercise is good, but being merciless on cutting carbs is still the best way. I've identified foods that I absolutely can't go near (any pizza, any sausage, any bread) and all other carbs I actively try to do without. The oddity is that I have a spoonful of honey with fresh garlic chopped into it every morning and that doesn't upset my BG at all? Go figure. And Good Luck!

An excellent help reply. Could not agree more in points you raised, i.e. T2 personal all individual different, key is Diet, exactly, after all it seems Diabetes as I understand a "dietary disease"? hence diet to be focused and targetted. Self help more reliable, good point, have found out by own experience, my taking charge of my own body, has gained more positive beneficial results when doing so, as required when all other fails. Exercise good, absolutely, and imperative, totally agree, also helps, to be combined with diet changes, in order, for the two combinations to work to ones best advantage, and best resuls, you hit the nail on the head regards help comments,

what is interesting, is honey and garlic, that indicates, from your experience, works fine for your body,

Super post/reply valid guidance given.

 

[SimonCrox]

Sorry that you are having such a difficult time, despite the effort that you are putting in.
So, it was 3 months ago that your HbA1c had gone up further to 70 new units, ie about 8.5% old units (sorry - still old fashioned me). So several points, but agree with everything above.
1: If you HbA1c on a new treatment has gone up at three months, rather than down, the treatment is not working adequately, and being told to come back in 3 months does not address the question. 70 mmol/mol is OK for an 80 year old with short life expectency, but not for a younger person like you.
2: In terms of oral agents, alogliptin might not be as strong as the other gliptins (or rather Takeda might not have decided on a big enough dose for top dose). So, one could try a different gliptin which would drop your HbA1c a bit, but not enough, so one could add in another tablet also, which on everage would drop the HbA1c 0.6-1.0% ie about 10 mmol/mol. So the tablets might not get you where you want to be.
3: It would be useful to know if you are still making enough of your own insulin by getting a urinary C-peptide test done; also what is your BMI and is your weight going up or down?
In other words, I think you need to see someone other than the nurse that you have been seeing for the last two visits. If you can manage gestational diabetes (treated by insulin?) along with pregnancy then you can manage this with a bit of help.
IMHO you are not moaning, but just stating your experience,
best wishes

 

[Jenny15]

An excellent help reply. Could not agree more in points you raised, i.e. T2 personal all individual different, key is Diet, exactly, after all it seems Diabetes as I understand a "dietary disease"? hence diet to be focused and targetted. .

Not in all cases. I think it over-simplifies things to call it a dietary disease, given that for many people there is a lot of influence from genes and other medical conditions. I agree that dietary changes are almost always the place to start, and they remain the mainstay for most T2s. For some people they are not enough.

You may find this info interesting:
http://www.phlaunt.com/diabetes/47101698.php

 

[dbr10]

Hi Peckj02
Diabetic for over 16 years (T2) started off on Metformin, never really got on with it. gave me such terrible stomach upsets. then onto the icazides... helped for a while then had to go onto insulin injections (Humalog 50) been on it for the last 6 years. and it's the best help since sliced bread .... but my intake slowly crept up and also the weight gain. the thing with insulin is it aids fat storage , and the more you take the more weight gain, like a steroid. a horrible vicious circle. alas i was getting pretty depressed not seeing any light at the end of the tunnel. i cut down on my food intake, to no avail..... i kept gaining weight albeit very slowly. i researched more and more into this condition (T2 Diabetes) and found many doctors advocating (Low Carb High Fat) LCHF......... i read more and more on the subject and decided to try it, like fighting fire with fire.... fight FAT WITH FAT !!! ........ Noooo ! surely not. NOW at first i got great results, weight started to drop off even in the first few weeks and my insulin intake i regulated myself i went from 200 units a day sometimes more, to around 80 units a day 2 x 40 unit injections. i had to self diagnose as i was starting to get Hypos if i took more than i needed. BUT after a couple of months i found the high fat low carb very boring at the lack of choice... I was being bombarded (as we all are..always) with delicious mouth watering adverts for all this wonderful sugary high carb food. and i soon fell by the wayside and reverted back to my old ways of eating. (proper fell off the wagon) and so this went on for a couple of years ... yo-yo up and down and not really getting anywhere. the Neuropathy in my feet was the wake up call....... i could barely walk without slippers or comfy footwear, so painful. i decided to completely change my way of eating again. and this time i have been on it for over 3 months........ and the results speak for themselves lost over 1 and a half stone and decreasing, feeling stronger ... don't fall asleep at the drop of a hat. getting DIY jobs done around home and garden. and walking not running to get myself right again. don't care now if it takes a couple of years, to get where i want to be. just need to keep that perspective of not feeling sick and tired. in essence sick and tired of feeling sick and tired. as a younger man, the thought of eating any fat, like the trim on pork chops or steak, repulsed me. NOW i absolutely love it. never thought i would say that. i have become fat converted. I am NOT saying it's the holy grail of treating type 2 diabetes. but i know it helps me. and by talking to a lot of people on different forums, it has helped thousands of other people too. I am convinced that my diabetes was inevitable, as a direct result in believing all the **** that was thrown at me by advertisements. to eat more and more processed food. that just my assessment to this diabetic explosion, that is now affecting much of the civilised countries today, NOT just the UK but worldwide. all i know is i EAT REAL FOOD, i am committed to eating this way. it has taken a long time to get there for me. but i now know i can reverse this condition. by eating natural real food. their may not be much of a choice as to the processed packets and tins of rubbish packed with chemicals and god knows what. and my very last point by eating high fat. i no longer feel hungry and eat so much less. i apologise if i have bored you to death, but just my twopenneth of lifes experience from me to you. be lucky and good health ........ regards Gaz

No. Not bored to death at all. It's an inspirational post. Good luck.

 

[Robin101]

I'm glad it isn't just me! There are so many accounts of what goes right and wrong and the fact that underneath all of it are real human beings struggling to get it right. All sorts of diets, all sorts of responses.
Couple of things that oddly work for me. Honey with fresh garlic chopped into it. One tablespoon every morning. No spike, steady energy release.

Snack or rather appetite suppressor, 1 tablespoon of peanut butter midday or so. The fats work wonders on keeping me away from all the other stuff I could eat.

Favourite dinner currently is cheese and salad stuff and any sort of dressing that doesn't have sugar.

I'm lucky in so far as I can do moderate exercise although my knees are on their last legs and I have been working through the 1965 Royal Canadian Air Force exercise plan 5BX. Look it up sometime. It's genuine exercise. It's not on DVD, it doesn't showcase a TV celebrity, it isn't performed by impossibly fit athletes. But it does work.

 

[Terrytiddy]

H @Peckj02 welcome to the forum. Nothing wrong with a good rant to get things off your chest! I will tag @daisy1 for welcome info. Some great advice been given. so you just need to see what suits you. I found the Low Carb High Fat (LCHF) way of eating was great for me in many ways. I have a lot of weight to loose so I gave it a go and its real food! I do 18/6 fasting no food after 20.00 till 14.00 next day, only black tea, coffee, water and vitamin water during fast. Aim for 15 -20% carbs a day. First month lost 8.4 kg and got Bg down from 16.6 to 7.0, (currently running between 4 and 5 at the moment) There is a thread in forum Called Low Carb Diet, also one "What have you eaten today" for great food ideas. I would also invest in a Blood Glucose meter so you can keep an eye on things @Bluetit1802 has a link I'm sure she will post it. You are in the right place for help, advice and support. What ever path you take we are here for you. Good luck

 

[daisy1]

@Peckj02

Hello Peckj02 and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it useful. Ask as many questions as you want and someone will be able to help you.


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.