My DSN has just told me to accept erratic BG results!

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LorraineP

LorraineP

Well-Known Member
Relationship to Diabetes
Type 1
I’m actually quite distressed about this. I’ve had erratic BG results for the past few years with HbA1C’s ranging from 8.2 to 10. Very high for an obsessive blood tester. So I recently bought a Freestyle Libre to get a better insight of my BG trends and I got a pump 3 months ago in the hope that it would help stabilise my blood sugars.

The pump has improved things only slightly but the problem isn’t the pump, it’s my body. I recently discovered that I have slow digestion which is causing the erratic results and I’m still learning about the condition. I’m also waiting for test results to see if I have coeliac’s disease, but I doubt it.

My BG trends are completely different from one week to the next and this is why I find it so difficult to predict how my body’s going to react to the next meal. I don't expect to get exactly the same results each day but I would like to see the same trends.

My diabetic team is so busy they are becoming quite short and disinterested in problems that aren’t quick or easy to solve. I feel like I’m a nuisance but I really do try not to bother them. I’ve sent in monitoring sheets 4 times in the last 3 months. I don’t think that’s too often?

Today when speaking to the DSN she told me that my results aren’t that bad and I have to accept that I’m one of those people who has an erratic pattern and will probably never have a regular pattern. I was shocked that she was basically washing her hands of the problem. It looks like I’ve got to solve this on my own!!!

My average BG over the past 30 days is 8.5 and I’m in target 45% of the time. Am I being unrealistic in saying that I want better results, especially now that I'm on a pump? If I knew how to bring my BG down further without daily hypos and stabilise my BG pattern I would have done so by now. But my DSN’s seem reluctant to help and I think it’s because they have an ever growing volume of patients and no time to study the huge amount of information that’s now available with pump and CGM software.

Eventually the DSN admitted that she didn’t know how to help me, or as she put it, “how can you expect me to advise you when your BG results are so erratic?” Does anyone else here get the irony of that?

In my head I thought that the diabetic clinic would have experience and knowledge of the reasons for long term erratic BG with advice about foods to eat, timings of meals, tips picked up from other patients etc. But I haven’t had a single piece of advice. Everything I know I’ve picked up online or in books.

Do you think I’ve been expecting too much? Should I be satisfied with these results and just forget about reaching my target HBA1C of 6.0? Is an average BG of 8.5 OK?

I’m confused about the DSN’s laissez faire attitude to accepting imperfect BG results. I just recently found out that a persistent HbA1C of 6.5 means that a patient is diagnosed Type 2 diabetic. Clearly the NHS believes BG at or above this level causes health problems so why am I being told to go away and just accept higher BG levels? I would give my right arm to have an HbA1C of 6.5!

I know that not everyone will have experience of slow digestion so I'm not expecting advice on that, it's more a case that I'm trying to determine if other people would be satisfied with an average BG of 8.5 - 9 and in target less than 50% of time? Am I expecting too much from my diabetic team?

If you reached this point, thank you for taking the time to read my diatribe!🙂
 
Apart from the DAFNE course, everything That I have learned about improving my control has been through forums like these. There are hundreds of years worth of direct experience of living 24 hours a day with this condition on here, I'm sure you will find someone here who can help you.
 
LorraineP said:
I’m actually quite distressed about this. I’ve had erratic BG results for the past few years with HbA1C’s ranging from 8.2 to 10. Very high for an obsessive blood tester. So I recently bought a Freestyle Libre to get a better insight of my BG trends and I got a pump 3 months ago in the hope that it would help stabilise my blood sugars.

The pump has improved things only slightly but the problem isn’t the pump, it’s my body. I recently discovered that I have slow digestion which is causing the erratic results and I’m still learning about the condition. I’m also waiting for test results to see if I have coeliac’s disease, but I doubt it.

My BG trends are completely different from one week to the next and this is why I find it so difficult to predict how my body’s going to react to the next meal. I don't expect to get exactly the same results each day but I would like to see the same trends.

My diabetic team is so busy they are becoming quite short and disinterested in problems that aren’t quick or easy to solve. I feel like I’m a nuisance but I really do try not to bother them. I’ve sent in monitoring sheets 4 times in the last 3 months. I don’t think that’s too often?

Today when speaking to the DSN she told me that my results aren’t that bad and I have to accept that I’m one of those people who has an erratic pattern and will probably never have a regular pattern. I was shocked that she was basically washing her hands of the problem. It looks like I’ve got to solve this on my own!!!

My average BG over the past 30 days is 8.5 and I’m in target 45% of the time. Am I being unrealistic in saying that I want better results, especially now that I'm on a pump? If I knew how to bring my BG down further without daily hypos and stabilise my BG pattern I would have done so by now. But my DSN’s seem reluctant to help and I think it’s because they have an ever growing volume of patients and no time to study the huge amount of information that’s now available with pump and CGM software.

Eventually the DSN admitted that she didn’t know how to help me, or as she put it, “how can you expect me to advise you when your BG results are so erratic?” Does anyone else here get the irony of that?

In my head I thought that the diabetic clinic would have experience and knowledge of the reasons for long term erratic BG with advice about foods to eat, timings of meals, tips picked up from other patients etc. But I haven’t had a single piece of advice. Everything I know I’ve picked up online or in books.

Do you think I’ve been expecting too much? Should I be satisfied with these results and just forget about reaching my target HBA1C of 6.0? Is an average BG of 8.5 OK?

I’m confused about the DSN’s laissez faire attitude to accepting imperfect BG results. I just recently found out that a persistent HbA1C of 6.5 means that a patient is diagnosed Type 2 diabetic. Clearly the NHS believes BG at or above this level causes health problems so why am I being told to go away and just accept higher BG levels? I would give my right arm to have an HbA1C of 6.5!

I know that not everyone will have experience of slow digestion so I'm not expecting advice on that, it's more a case that I'm trying to determine if other people would be satisfied with an average BG of 8.5 - 9 and in target less than 50% of time? Am I expecting too much from my diabetic team?

If you reached this point, thank you for taking the time to read my diatribe!🙂
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I have had strip everything back and start again. Testing my blood at 1, 2, 3 and 4 hours. I peak between 3 and 4hours.

So slow digestion is worse with certain fats, cheese especially. I took carbohydrate back to zero for few days so that I could sort my basal rate. Then started adding the carbohydrate back in with small amounts of bolus.

Voilà, I have stable bg. The bonus is that now my food is digesting quicker, less reflux, less abdominal pain.

I was also told not to stress if I was under 10mmol
 
The first step is to discover the reason for the slow digestion. In my case it's gastroenteropathy and there's not a lot to be done about it beyond avoiding too much stuff that's hard for me to digest. Plus, I have to take a fibre supplement three times a week, glad it's not daily as the stuff is horrible (s'not -hint- the taste it's the texture, yeuch!). My last 4 HbAs have been 5.5 and the one before that was 5.2 (I have four done per year). It is possible to reduce your HbA with this kind of problem, but it really depends on establishing what the problem is, only then will you be able to work out how to deal with it. So, see your GP, insist on referral to the Gastric clinic and take it from there.
 
Alison I'm glad you were able to reduce your HBA's to 5.5. I'm very envious but how did you do it? Did you have erratic BG too? Did you do what Owen suggested and start all over again then reintroduce carbs? Is gastroenteropathy the same as gastroparesis?

I had an endoscopy last week and the doctor told me I have gastritis as well as gastroparesis but no treatment was suggested other than Omezaprole to protect the stomach. I'm already cutting out high fibre and high fat foods and taking other measures to improve digestion but sometimes it works, more often it doesn't? I'm sorry about all the questions but I'd really like to know how you managed to get down to 5.5 🙂

Owen I have already retested my basal rate which seems OK so it's matching the bolus delivery to the digestion which seems to be the problem. I just tested my BG before bed and it's suddenly jumped up to 13.8 during the past hour. It's now after midnight and I last ate at 7pm with a Combo bolus which is now extinct. A few nights ago I was battling to bring my BG up to a safe level before bed!

I'll try your suggestion and go carb free or v low carb for a couple of days to see what happens. Thanks for your suggestions
 
LorraineP said:
Alison I'm glad you were able to reduce your HBA's to 5.5. I'm very envious but how did you do it? Did you have erratic BG too? Did you do what Owen suggested and start all over again then reintroduce carbs? Is gastroenteropathy the same as gastroparesis?

I had an endoscopy last week and the doctor told me I have gastritis as well as gastroparesis but no treatment was suggested other than Omezaprole to protect the stomach. I'm already cutting out high fibre and high fat foods and taking other measures to improve digestion but sometimes it works, more often it doesn't? I'm sorry about all the questions but I'd really like to know how you managed to get down to 5.5 🙂

Owen I have already retested my basal rate which seems OK so it's matching the bolus delivery to the digestion which seems to be the problem. I just tested my BG before bed and it's suddenly jumped up to 13.8 during the past hour. It's now after midnight and I last ate at 7pm with a Combo bolus which is now extinct. A few nights ago I was battling to bring my BG up to a safe level before bed!

I'll try your suggestion and go carb free or v low carb for a couple of days to see what happens. Thanks for your suggestions
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The two sources of fat that oi seem to be okay with are yoghurt and pistachios. I make sure that the nuts are fully chewed. I was scoped both ends, gastritis was found.
I missed that you are you are pumping, do don't fully understand pumps. I object my novorapid just after eating and this seems to generally match my digestion rate. I have gastric pain for over two and a half years, but this is now improving.
 
Thanks Owen for the links. I hadn't heard of FODMAP before but I see I've already excluded a lot of the "baddie" foods. I understand exactly what they mean about food fermenting in the stomach and that awful taste in the mouth (oh the bloating!). I'm happy to say that since I cut out high fibre foods the nausea, sickness, devil breath and bloating have gone. However the rate at which I digest food still varies quite a bit which is screwing up the blood sugars. Last night at this time I was heading towards 13.8 before bed, tonight my latest reading (2 minutes ago) was 4! I ate exactly the same food as last night and at the same time (deliberately so to check digestion rate) My DSN doesn't think this is a problem!

Having been diagnosed with gastritis last week I know nothing about this condition. But I've just googled it and found that gastritis can also delay stomach emptying. I'm about to start Omezaprole tomorrow so I really hope that it will help my digestion get back to some sort of normal and stop interfering with my BG!
 
LorraineP said:
Thanks Owen for the links. I hadn't heard of FODMAP before but I see I've already excluded a lot of the "baddie" foods. I understand exactly what they mean about food fermenting in the stomach and that awful taste in the mouth (oh the bloating!). I'm happy to say that since I cut out high fibre foods the nausea, sickness, devil breath and bloating have gone. However the rate at which I digest food still varies quite a bit which is screwing up the blood sugars. Last night at this time I was heading towards 13.8 before bed, tonight my latest reading (2 minutes ago) was 4! I ate exactly the same food as last night and at the same time (deliberately so to check digestion rate) My DSN doesn't think this is a problem!

Having been diagnosed with gastritis last week I know nothing about this condition. But I've just googled it and found that gastritis can also delay stomach emptying. I'm about to start Omezaprole tomorrow so I really hope that it will help my digestion get back to some sort of normal and stop interfering with my BG!
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Omeprazole will help with reflux, I now have lansoprazole at a larger dose. Gastritis is inflammation within the upper GI tract. Depending on the amount can cause upper abdominal pain, reflux and slow emptying.
 
Hi Lorraine there is treatment for Gastroparesis dependent upon your symptoms. I'm on Domperidone and erythromycin. I've been on them for five years but in April my consultant asked me to try stopping. This was for two reasons. Firstly in certain people Domperidone can suddenly stop the heart working and it is now only recommended for VERY limited use. Erythromycin is an antibiotic but with long-term use can lose its effectiveness. With a lot of insulin changes and dietary changes I got my HBA1C down to 6 but it was very hard work. Since stopping the medication my HBA1C has gone up to 7.7. I'm about to run out of battery charge on my IPad so sorry for short message but I'm happy to answer any questions that you have.
 
Hi Lorraine
I don't think that I can help you with specific advice about slow digest ions but know that others are on the case. Just to say it is perfectly understandable that you want better results. If the DSNs thwt you are with do not know how to help you, would you consider registering with a different hospital?

Just to check- is it a DSN that you are in touch with or is it a nurse at your GP practice who specialises in Diabetes. Very different.
 
I'm not sure its just slow digestion that is always the cause of erratic results, I do so relate to your problems. My BG trends also vary daily, as beautifully shown by the Libre, eg identical breakfast every day, no change in activity but one day massive spike, next day virtually none. (Spike makes me think slow digestion isn't a problem for me!)

Sorry, can't help, but just to say you're not alone!

Mostly the pump and Libre do help, but I'm going through a really bad patch at the moment, not looking forward to next HbA1c result. Also, I have rarely ever got above 50% in target (4-8), this bothers me more than the HbA1c.

Best of luck with the drugs for the digestion anyway!
 
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