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Suzi

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Hi All
I was diagnosed a number of years ago but am new to the forum. I have had a very difficult year regarding my treatment and I still don't know what's going on as my doctor is completely useless!
I am Type 2, (my dad is also diabetic type2) and I suffer from severe anxiety which does not help matters. I cannot take Metformin in any form which I have tried and all I end up doing is sitting on the toilet for hours! After arguing with my doctor for a year about the medication side affects they tried me on Sitaglipton, I was delighted when I got no side affects but then after a year of use, I noticed that I was sleeping constantly, which I initially thought was stress, as I was buying and selling a house at the time, however I found out that the pills hadn't been working and then the saga started. I couldn't stop sleeping and was exhausted as my sugar levels were going between my lowest 12.5 and up to my highest 28.7.
My doctor tried me on Gliclazide (it didn't work), so they added Pioglitazone which seemed to kick in a little after a month, then they took me off the Gliclazide and put me on to Empagliflozin which I don't really think is doing anything other than making my skin itch like crazy. My levels have dropped but they seem to fluctuate between 9.1 but can go up quite suddenly to 17.4 like today for example, it very rarely drops below 9.
I have avoided going to the doctor for a few months now as she is unsympathetic and doesn't listen to anything I am saying, I even made a complaint to the practice - which went nowhere, they blamed everything on my anxiety and said that I was being unreasonable and expecting too much. I have my glucose test this week with the nurse and a follow up with the doctor, next week, which I am not looking forward to, as they keep saying its dropped, which it has, but going on all of the readings I have done, I still think the daily readings are too high and when I mentioned this a few months ago to a nurse she agreed that they still sounded a little out of the ordinary.
Can anyone suggest anything? Do the readings still sound too high? If I am sounding a bit neurotic, I apologise, as I feel like I'm banging my head against a wall repeatedly. If any of you can confirm what you think about the readings, that would really help? And if I am just worrying about nothing, this has really taken its toll on me and I feel so isolated, as the doctor is not making me feel very confident with her diagnosis, when I mentioned it could have been another type of diabetes, and could she run some more tests, she told me she had no idea what I was talking about, even though she is supposed to be the diabetic expert in the practice.
I don't like to go on like this but I'm at the end of my rope!
If any of you can help that would be great.
 
Hi Suzi and welcome.
Well your doctor has tried some of the available meds. Not everyone can tolerate Metformin so you're not alone in that. As you are not happy and your body doesn't appear to be responding to the treatments, at least not for long, I would personally suggest the following: Purchas a book called Calorie and Carb Counting, I assume, as you've mentioned daily tests, you are testing just before a meal then two hours after to see the uplift (you may already be doing this) Many on here follow a low carb diet which will help to bring your bg levels into the normal range. Empagliflozin uses the kidneys to extract the sugars in your system and disposes of it in your urine making you more vulnerable to infections as well as many other side effects. I am also a T2 initially put on metformin and gliclazide which helped to bring my levels within normal ranges but after they shot up a few months ago into the 20/30 range I was immediately put on an insulin therapy. This could well be the meds you will eventually need. What are your most recent bg testing results?
There are many members on here who are dissatisfied with their GPs and the level of care they receive so you are not alone in that. Unfortunately the NHS is not in an ideal situation at the moment and as diabetics we have to take more responsibility in dealing with the it 24/7. If you have little confidence in your GP are there any other practices you could register at locally for a different perspective on your treatment? Regarding the anxiety, many of us on here have experienced it and it's not a very pleasant condition to have. Indeed coincidentally I suffered it whilst disposing of a property and it was a wonder my cash buyer didn't walk away! So don't feel isolated, there are many on this forum who will empathise with your situation. Throw that rope away and avoid that brick wall🙂
 
Silly question - have you been given any diet advice? Because often the advice you are given is not ideal.
 
Welcome to the forum Suzi from a fellow T2.
Are you getting 9 (or higher) before eating regularly? I take it you're doing finger prick tests. The numbers in your post sound high to me. Have you kept a food diary, along with your before and after eating levels?
What are you're HbA1c results?
Have you considered chaining GP practice?
 
Thanks Davein, Mark and Ralph I have been doing the diet and exercise since I was diagnosed prediabetic which was about 5 years ago. I lost weight initially but the levels continued to rise which I know can happen.
Maybe I'm not being strict enough. I wasn't given much advice other than, you shouldn't really eat chocolate biscuits! I have taken most of my advice from my parents as they have been dealing with my dad's diabetes for over 20 years and he has been at a really stable rate for about the past 10 years. I did change my GP round about the time I moved house but they seem worse than the last lot. I have to say the diabetic nurses are fantastic so a big thanks to them but to get anything done and prescribed it has to go through my doctor. I will definitely try the book you have suggested. My blood sugar readings tend to be at 9 before most meals and can jump up to it seems about 13 (today was 17 - I don't know where that came from.) I am just a little worried that it has been this way for while, I was under the impression from things I have seen and read, that the level should be from about 6 before eating to about 9 after eating I just don't want to have further complications at a later date because I didn't do anything about it. I mentioned insulin to my doctor and she is very reluctant to start it which I understand but I am sick of feeling so exhausted all the time. I am getting an updated HbA1c on Thursday.
 
Suzi said:
Thanks Davein, Mark and Ralph I have been doing the diet and exercise since I was diagnosed prediabetic which was about 5 years ago. I lost weight initially but the levels continued to rise which I know can happen.
Maybe I'm not being strict enough. I wasn't given much advice other than, you shouldn't really eat chocolate biscuits! I have taken most of my advice from my parents as they have been dealing with my dad's diabetes for over 20 years and he has been at a really stable rate for about the past 10 years. I did change my GP round about the time I moved house but they seem worse than the last lot. I have to say the diabetic nurses are fantastic so a big thanks to them but to get anything done and prescribed it has to go through my doctor. I will definitely try the book you have suggested. My blood sugar readings tend to be at 9 before most meals and can jump up to it seems about 13 (today was 17 - I don't know where that came from.) I am just a little worried that it has been this way for while, I was under the impression from things I have seen and read, that the level should be from about 6 before eating to about 9 after eating I just don't want to have further complications at a later date because I didn't do anything about it. I mentioned insulin to my doctor and she is very reluctant to start it which I understand but I am sick of feeling so exhausted all the time. I am getting an updated HbA1c on Thursday.
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Your levels should be in the region of 5 to 8.5 really and you're quite high. There are many, many things that influence bg levels but I would suggest sorting out your diet preferably low carb. I have felt much better since starting on insulin so may be it's time for you to bite the bullet and try.
 
Ah yes, the usual advice 🙄

The issue is that all dietary carbohydrates turn to glucose. So that's, bread, rice, cereals, potato, etc, etc... Getting a jump from 9 to 13 isn't that horrific (that's a +4). Is that at 2 hours or 1 hour after the meal?

The morning was always my biggest problem. Cereals are a big no-no for me and I can almost get away with a single slice of burgen. Egg's and Bacon are actually much better first thing! What do you have in the morning?

Everyone is different, so what your father can tolerate may be different to you.
 
Eating a low carb diet has been a really effective tool for me - I don't take any medication, but have normal results.
If you can reduce your carb intake then you should see the numbers go down - you might need to stop some medication in order to avoid hypos it is so efficient.
 
Various things affect our levels. Regular testing before and after eating allows you to see general trends in levels from you're diet.
 
I initially was having an egg sandwich but the bread is not a good idea as it seems to hike up the glucose, so I moved on to porridge but that seems to be just as bad if not worse. Last week I tried two boiled eggs, a natural full fat yogurt and a banana which was ok, I'm just trying different things to see what comes out as the lowest. Looks like it will have to be a complete bye bye to carbs - sob! I have cut them down dramatically over the past year in particular but with these readings not changing despite the diet and exercise, I need to do something or I'll go crazy!
I would be happy to start on insulin, anything to make me feel better but I know it can take some time to get used too and the doctor said one of the reasons she didn't want to put me on insulin was because she couldn't fit in an appointment for me that was long enough to show me what to do - again really not confidence inspiring!
I will try to talk to my doctor again next week following the HbA1c, and you never know maybe I might get somewhere.
Thanks to all of you for your advice, I am really grateful for the help.
 
Suzi said:
Hi All
I was diagnosed a number of years ago but am new to the forum. I have had a very difficult year regarding my treatment and I still don't know what's going on as my doctor is completely useless!
I am Type 2, (my dad is also diabetic type2) and I suffer from severe anxiety which does not help matters. I cannot take Metformin in any form which I have tried and all I end up doing is sitting on the toilet for hours! After arguing with my doctor for a year about the medication side affects they tried me on Sitaglipton, I was delighted when I got no side affects but then after a year of use, I noticed that I was sleeping constantly, which I initially thought was stress, as I was buying and selling a house at the time, however I found out that the pills hadn't been working and then the saga started. I couldn't stop sleeping and was exhausted as my sugar levels were going between my lowest 12.5 and up to my highest 28.7.
My doctor tried me on Gliclazide (it didn't work), so they added Pioglitazone which seemed to kick in a little after a month, then they took me off the Gliclazide and put me on to Empagliflozin which I don't really think is doing anything other than making my skin itch like crazy. My levels have dropped but they seem to fluctuate between 9.1 but can go up quite suddenly to 17.4 like today for example, it very rarely drops below 9.
I have avoided going to the doctor for a few months now as she is unsympathetic and doesn't listen to anything I am saying, I even made a complaint to the practice - which went nowhere, they blamed everything on my anxiety and said that I was being unreasonable and expecting too much. I have my glucose test this week with the nurse and a follow up with the doctor, next week, which I am not looking forward to, as they keep saying its dropped, which it has, but going on all of the readings I have done, I still think the daily readings are too high and when I mentioned this a few months ago to a nurse she agreed that they still sounded a little out of the ordinary.
Can anyone suggest anything? Do the readings still sound too high? If I am sounding a bit neurotic, I apologise, as I feel like I'm banging my head against a wall repeatedly. If any of you can confirm what you think about the readings, that would really help? And if I am just worrying about nothing, this has really taken its toll on me and I feel so isolated, as the doctor is not making me feel very confident with her diagnosis, when I mentioned it could have been another type of diabetes, and could she run some more tests, she told me she had no idea what I was talking about, even though she is supposed to be the diabetic expert in the practice.
I don't like to go on like this but I'm at the end of my rope!
If any of you can help that would be great.
Click to expand...
So sorry to hear about your struggles Suzi ~ you really shouldn't be going through all this. Have you thought of changing to another GP practice?

If its any help you can obtain a copy of the book CARB & CALORIE COUNTER from www.amazon.co £10.19. It's a must-have book for people living with diabetes ~ most folk here wouldn't be without this very helpful book re: carborhydrates we consume. Good luck.
WL
 
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Suzi said:
I initially was having an egg sandwich but the bread is not a good idea as it seems to hike up the glucose, so I moved on to porridge but that seems to be just as bad if not worse. Last week I tried two boiled eggs, a natural full fat yogurt and a banana which was ok, I'm just trying different things to see what comes out as the lowest.
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Already doing what I was suggesting. And sounds like it is working. 🙂
 
Hi Suzi - looks like you've stirred up some fellow sufferers! Loads of advice above - it's just a matter of finding out what's best for you. If you see my earlier posts you'll see I was diag type 2 at Christmas after 2-3 years as borderline. Now I'm on a 5/2 diet and that seems to work as far as losing weight is concerned - and most people can afford to slim down. I exercise more and feel better generally for that. That's the plus side.
I'm glad you said that about Metformin, as that's precisely the reason I have a batch of unopened tablets that the doc prescribed. I want to beat it by diet and fitness. A homoeopathy specialist I know recommended "anything rather than Metformin!" She says if you're just over the border - as I am - then it has been known for people to knock out carbs entirely, knock down their calories to 500 or 600 per day for 6 weeks and actually CURE themselves of diabetes. Tough going but shows what can be done.
That may be a bit extreme, which is why I'm doing the 5/2. The 5/2 has the knock-on effect of making you look at all your intake, so the weight falls off quicker and you start thinking about what you're putting inside yourself.
Obviously, sugar etc is a no-no, and I can now walk into a petrol station and totally ignore the shelves and shelves of chocolate! Hooray!
Finally, I have a theory about GPs and diabetes. They're useless at it. Just stick with the nurse - they are the specialists and I have heaps more faith in them than the GPs. GPs are only any use in signing the prescriptions and referring you to specialists.
 
Suzi said:
I initially was having an egg sandwich but the bread is not a good idea as it seems to hike up the glucose, so I moved on to porridge but that seems to be just as bad if not worse. Last week I tried two boiled eggs, a natural full fat yogurt and a banana which was ok, I'm just trying different things to see what comes out as the lowest. Looks like it will have to be a complete bye bye to carbs - sob! I have cut them down dramatically over the past year in particular but with these readings not changing despite the diet and exercise, I need to do something or I'll go crazy!
I would be happy to start on insulin, anything to make me feel better but I know it can take some time to get used too and the doctor said one of the reasons she didn't want to put me on insulin was because she couldn't fit in an appointment for me that was long enough to show me what to do - again really not confidence inspiring!
I will try to talk to my doctor again next week following the HbA1c, and you never know maybe I might get somewhere.
Thanks to all of you for your advice, I am really grateful for the help.
Click to expand...
Hi again Suzi
I can only tell you of my experience with insulin. I was put on insulin simply because nothing else was working sufficiently to reduce my high bg levels. It sounds as if you have tried the oral medications and they are not doing their job. Whilst on oral meds I self financed a meter and test strips and was able to show conclusive daily readings showing my bg levels were far higher than they should be. So I suggest if you're not already doing so, keep a daily record. Show that to the GP as evidence of high levels. within 24 hours of showing my record a prescription was ready for me to pick up the meds for insulin therapy. Within a couple of days I had a 20minute appointment with the practice diabetes nurse and she went through all the basics. I started on a very low dose of 8 units and over the following weeks I gradually increased those doses, obviously paying attention to the regular testing results. The needles these days are so small they do not hurt, the insulin can sometimes sting but that's as dramatic as it gets. I felt miles better almost straightaway. In the five months I've been injecting, I've had two mild hypos and that I reasoned being as a result of doing more physical work during the day. The insulin is provided in easy to use Kwikpens and it's a simple matter of dialling up the correct dose. I'm not on MDI, multiple daily injections as a recent beta cell test confirmed my pancreas is still producing limited insulin. I would say your main priority is to get a satisfactory meds regime that reduces your bg levels as soon as possible and insulin therapy could be the solution. I have now been prescribed a flozine by one of my consultants although I'm reluctant to proceed with them. I would obviously have to reduce my insulin doses but he reckons that it is possible to stop using insulin if the flozine is effective but I have yet to be convinced on that one.
Anyway, what ever is decided at your appointment I hope it improves your situation. Dave
 
The banana is in the high carb range - I get frozen berries as they are right down - 6 to 7 percent I think and I can have a small serving of them no problem.
I have just been down to the Polish grocery store and found protein bread which although not as low as the Lidl protein rolls which have been discontinued, do seem to offer the possibility of cheese on toast.
If you go low carb then, by avoiding the densely carb foods you do have quite a range of things to eat - and still be down at 40 to 50 gm of carbs a day.
I like doing a stir fry of mushrooms courgettes and sweet peppers, or cauliflower to have where rice or mashed potato might be the 'normal' option. I have huge salads, and I do mean huge, and still have normal readings. I was absolutely astonished at my results - down from 91 to 47 in 80 days, down to 41 in 6 months - I think that it was more emotional as both times I was just out of the range, down to prediabetic and then just at the top edge of normal - I didn't know if I should laugh or cry so I did both at once.
 
Hi Suzi, I'm sorry to hear about the difficulties you have been experiencing :( I'd recommend reading Maggie Davey's letter and see whether what you have been told fits in with her recommendations. This letter has been around for many years and gives a very good overview of how to set about improving your control. I'd also suggest reading Test,Review, Adjust by Alan S which explains how to set about discovering your tolerances for your food choices - important, as these tolerances can be quite different from person to person.

The diet and exercise can work extremely well for many people, but it doesn't work 100% for everyone. Modifying your diet to suit your tolerances is always a very good idea, as is trying to get in some regular daily exercise. Both these should help reduce your medication needs, but for some people they do remain requiring some help and should never feel they have failed if they are unable to get off the medications completely, it's simply that their pancreas can't produce sufficient insulin to keep their levels under good control. As @Davein suggests, this may be what you need now if the other meds aren't helping, and you may need insulin. But do look at the letter and see if it helps, as well as learning from all the others here who have developed a strategy that works 🙂

If you don't feel supported by your current GP, would it be possible to find a new one? You might like to contact the Diabetes UK Helpline to see if they can help you find a solution to the poor care - details here:

https://www.diabetes.org.uk/How_we_help/Helpline

Good luck and please let us know how things go, or if you have any questions 🙂
 
Hi Again, Thank you to everyone for responding previously and all for all of the advice you have given me, it turns out my HbA1c is at 61, it was over 100 a few months ago, so it has been a large drop, but am I right that it still seems to be on the high side? Particularly while I'm on medication? I have a funny feeling the medication isn't working again. I've ordered the books suggested on carb and calorie counting which I'm hoping will help me with amounts and suggestions but I think the doctor may have to help on the medication side of things. I am currently taking 1 x 45mg of Pioglitazone and 1 x 10mg Empagliflozin daily, do you know if these can be increased? Or is this likely to be another medication change again?😱:(
 
While a HbA1c of 61 is still high, you are well down from 100. So if you can keep going, you could see lower figures. Maybe an initial target of 58.

I don't know that medication.
 
Yeah I am still being careful with the food and I have lost another half stone which is heading in the right direction and can only be a good thing! But I'm hoping the doctor may be able to shed some light on Thursday at my appointment but I suppose I'm just expecting to be fobbed off again as she seems to think I'm worrying about nothing.
I'm just still concerned that its been so high for so long (over a year and half) that damage is being done, the last thing I want are complications.
 
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