New member, need advice

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daffodil

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Type 2
Hi, I'm new to this forum but not new to diabetes. I was diagnosed in 2014 and for the first 7 years was able to keep my HbA1C in the 40s by diet only (low carb). During 2021-22 it crept up to 52. However, last October I was quite poorly for a few days after my third covid booster. I suffered sudden hearing loss (now resolved) but didn't realise straight away that something else had happened. My glucose readings suddenly shot up and my HbA1C had doubled to 107. I was getting glucose readings in the low 20s and ketones on some days. I had a ct scan which was fine. I was put on glimepiride, gradually increasing to 4mg. To start with things seemed to be improving, but now, 10 months later, my glucose readings are between 14 and 18mmol daily. I feel so tired and fed up with it. I am very careful with carbs, but nothing I do seems to make any difference. I can't get the doctor's surgery to take it seriously. I have pushed for more blood tests and am about to have a GAD test but they don't really seem to think there is any problem. I'm very concerned about the damage being done by these high readings. Any thoughts or ideas appreciated
 
Welcome @daffodil 🙂 Sorry to hear about your high sugars. They must be making you feel really rough. It’s great that you’re having a GAD test. Are you also having a C Peptide test? To me (a non-medical person), it sounds like you were either misdiagnosed and are actually Type 1 (it can come on more slowly in adults) or you’re Type 2 but your own insulin production has declined now and you need insulin.

The GAD test can take a while to come back. I’d be concerned about your high sugars while you’re waiting. Can you push for an appointment with your GP? I know you’ve said they’ve not been helpful, but I wonder who you’ve seen? Perhaps someone there will be more helpful to you.
 
I'm quite new to Diabetes, so can't really give you any advice except to keep pushing the doctor and don't back down.
My current readings are very similar to yours, so I'm going to keep an eye on this. I'm not on medication yet, but I think the time has come to start. I just can't seem to get the readings down lower than 11mmol in the morning and usually they are 11-14mmol so higher during the day I suppose.
 
Hi Both
There is something you can be doing and that is review your diet as many think they are doing the right thing but may not be doing quite enough. Have a look at this link for some ideas and compare to your current strategy and there may be some tweaks that will help. https://lowcarbfreshwell.com/
 
Leadinglights said:
Hi Both
There is something you can be doing and that is review your diet as many think they are doing the right thing but may not be doing quite enough. Have a look at this link for some ideas and compare to your current strategy and there may be some tweaks that will help. https://lowcarbfreshwell.com/
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Thank you for this link, I will certainly take a look. I managed my diabetes by low-carbing for many years. I do have some carbs now and am unable to fast any more due to the nausea I get from the glimepiride, so my daily carbs are around 80 grams now. Going under 50g makes me too weak.
 
Duncan23 said:
I'm quite new to Diabetes, so can't really give you any advice except to keep pushing the doctor and don't back down.
My current readings are very similar to yours, so I'm going to keep an eye on this. I'm not on medication yet, but I think the time has come to start. I just can't seem to get the readings down lower than 11mmol in the morning and usually they are 11-14mmol so higher during the day I suppose.
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Do you have a doctor? Unfortunately the doctors at my surgery don't seem to know much about diabetes, they just refer you to the "diabetes team" which seems to be headed by a nurse who said I should be eating 250 grams carbs a day! Sometimes my review is done by a pharmacist who is unable to answer any of my questions. The diabetes team recently said that I was definitely Type 2 when diagnosed 9 years ago and that is unlikely to have changed. No one will discuss what happened with the vaccine, they just blank me.
 
Inka said:
Welcome @daffodil 🙂 Sorry to hear about your high sugars. They must be making you feel really rough. It’s great that you’re having a GAD test. Are you also having a C Peptide test? To me (a non-medical person), it sounds like you were either misdiagnosed and are actually Type 1 (it can come on more slowly in adults) or you’re Type 2 but your own insulin production has declined now and you need insulin.

The GAD test can take a while to come back. I’d be concerned about your high sugars while you’re waiting. Can you push for an appointment with your GP? I know you’ve said they’ve not been helpful, but I wonder who you’ve seen? Perhaps someone there will be more helpful to you.
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The doctors just refer me to the diabetes team. They don't seem to deal with the diabetes at my practice, it's nurses and pharmacists.
 
daffodil said:
The doctors just refer me to the diabetes team. They don't seem to deal with the diabetes at my practice, it's nurses and pharmacists.
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Well, if the nurse told you you should be eating 250g per day that doesn’t inspire confidence! You could show her/him the blood sugar targets for Type 2 and request a medication review. There’s a flowchart of treatments for Type 2 somewhere as I’ve linked to it before. Let me see if I can find it for you.
 
A possible factor apparently not yet mentioned in this thread is the matter of visceral fat and its relation to weight gain/loss. When first diagnosed were you overweight and did you lose significant weight in the course of getting your A1c down to normal levels? Have you regained weight in the more recent times when the A1c has risen again? Clearing the liver and pancreas of excess fat by weight loss is the key to resolving the T2D pathophysiology. Low carbing has a helpful role to play but is not primary in dealing with the condition at a fundamental level, it is merely desisting from throwing fuel onto the fire. If this were not so then all the science on the subject could be ended with a single one-line publication saying just look at the freshwell website.
 
Glad you have GAD test planned, i would be pushing for medication/insulin to lower those blood sugars
 
Inka said:
Well, if the nurse told you you should be eating 250g per day that doesn’t inspire confidence! You could show her/him the blood sugar targets for Type 2 and request a medication review. There’s a flowchart of treatments for Type 2 somewhere as I’ve linked to it before. Let me see if I can find it for you.
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that would be helpful thank you
 
childofthesea43 said:
A possible factor apparently not yet mentioned in this thread is the matter of visceral fat and its relation to weight gain/loss. When first diagnosed were you overweight and did you lose significant weight in the course of getting your A1c down to normal levels? Have you regained weight in the more recent times when the A1c has risen again? Clearing the liver and pancreas of excess fat by weight loss is the key to resolving the T2D pathophysiology. Low carbing has a helpful role to play but is not primary in dealing with the condition at a fundamental level, it is merely desisting from throwing fuel onto the fire. If this were not so then all the science on the subject could be ended with a single one-line publication saying just look at the freshwell website.
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my weight has remained fairly stable, with a bmi of 25.5. It would be nice to lose some weight but I am unable to do meaningful exercise due to other health problems
 
My BMI was close to that on diagnosis but I reduced it to 21 over 3 months by diet, plus just a little exercise. It’s been established that the beta cells become dysfunctional when the pancreas is insulted by just half a gram of fat, from which they can recover if the fat is soon cleared but not if left unremedied for many years. So my guess is that the rise in A1c indicates pancreatic decline but only clinical tests could determine the matter.
 
Sorry you have seen such a significant rise in your BG levels, despite following a low carbohydrate approach @daffodil :(

Diabetes can change over the years, and different medications can be needed, but it is also possible for people to have been misclassified initially, particularly with things like LADA where autoimmune diabetes can come on more gradually in adulthood, and can look a lot like T2 (and even respond to T2 meds) to begin with. If your insulin production has become impaired, or you have been losing islet cells, it may be that some T2 oral meds (which encourage more insulin to be produced) can’t work effectively because you have too little insulin production capacity to ‘encourage’ :(

As others have suggested, a cPeptide check while eating a regular carby diet can help establish how much home-grown insuoin production you still have available.

Could you ask for referral to a local hospital clinic as an ‘atypical’ case since the meds aren’t working despite low carb?
 
everydayupsanddowns said:
Sorry you have seen such a significant rise in your BG levels, despite following a low carbohydrate approach @daffodil :(

Diabetes can change over the years, and different medications can be needed, but it is also possible for people to have been misclassified initially, particularly with things like LADA where autoimmune diabetes can come on more gradually in adulthood, and can look a lot like T2 (and even respond to T2 meds) to begin with. If your insulin production has become impaired, or you have been losing islet cells, it may be that some T2 oral meds (which encourage more insulin to be produced) can’t work effectively because you have too little insulin production capacity to ‘encourage’ :(

As others have suggested, a cPeptide check while eating a regular carby diet can help establish how much home-grown insuoin production you still have available.

Could you ask for referral to a local hospital clinic as an ‘atypical’ case since the meds aren’t working despite low carb?
Click to expand...
Thank you, this is good advice. I have an appointment with diabetic nurse next week and I think I will push for a referral.
 
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