Is it worth paying to see a Diabetologist/endocrinologist?

[JayType 1]

diabetologist/endocrinologist**
Good evening everyone, this is my first posting. If I have posted in the wrong forum, please tell me.
I would be grateful for some guidance and advice.

Male : 50 Type 2 diabetes, for around 4 years.

I have lost around 20kg (44Lbs) in the past 18 months, leaving me frightfully emaciated. My frame can carry 80-83kg comfortably and not be or appear overweight.
Height 1.83m (5’11”)
Weight 65kg (10st 3lbs)

Tablets on their own have had no positive effect. Since April 2017 I have been injecting insulin.
This is what I take;

Gliclazide 80mg x 4 daily
Metformin+ Sitagliptin 1000mg/50mg tablets x 2
Humulin KwikPen 19 units daily (taken at bed-time)

Initially I was taking the pills then the insulin was added since April. Is it unusual to take both and what is the opinion about the Metformin+ Sitagliptin combination pill?

I have been taking the above tablets and insulin since early April, the units of Humulin has been adjusted several times, starting at 8, going up to 24 down to 18 and now 19 for the past 4 weeks.

2 weeks ago, a HbA1c result was 84.
I eat very well, fresh fish, vegetables, porridge, fruit. I don’t have a sweet tooth and I don’t like junk food or takeout food, therefore to maintain a healthy diet isn’t a problem for me.

Despite healthy living, I can’t get my blood sugar levels under control. Therefore I
I am thinking of paying to make a private appointment to see a consultant Dialectologist/endocrinologist. Has anyone else been down this route? I have a diabetes nurse but feel it's time to get a second opinion.

My quality of life is very poor as I suffer from terrible memory problems since starting on the insulin. In fact, I now have neuropathy. I am constantly hungry, I still go to the bathroom during the night several times. I can’t gain weight, I have lost in excess of 20kg 44Lbs. Is it normal to take so many tablets on top of the insulin?


Many thanks in advance.

Jay

 

[Amigo]

diabetologist/endocrinologist**
Good evening everyone, this is my first posting. If I have posted in the wrong forum, please tell me.
I would be grateful for some guidance and advice.

Male : 50 Type 2 diabetes, for around 4 years.

I have lost around 20kg (44Lbs) in the past 18 months, leaving me frightfully emaciated. My frame can carry 80-83kg comfortably and not be or appear overweight.
Height 1.83m (5’11”)
Weight 65kg (10st 3lbs)

Tablets on their own have had no positive effect. Since April 2017 I have been injecting insulin.
This is what I take;

Gliclazide 80mg x 4 daily
Metformin+ Sitagliptin 1000mg/50mg tablets x 2
Humulin KwikPen 19 units daily (taken at bed-time)

Initially I was taking the pills then the insulin was added since April. Is it unusual to take both and what is the opinion about the Metformin+ Sitagliptin combination pill?

I have been taking the above tablets and insulin since early April, the units of Humulin has been adjusted several times, starting at 8, going up to 24 down to 18 and now 19 for the past 4 weeks.

2 weeks ago, a HbA1c result was 84.
I eat very well, fresh fish, vegetables, porridge, fruit. I don’t have a sweet tooth and I don’t like junk food or takeout food, therefore to maintain a healthy diet isn’t a problem for me.

Despite healthy living, I can’t get my blood sugar levels under control. Therefore I
I am thinking of paying to make a private appointment to see a consultant Dialectologist/endocrinologist. Has anyone else been down this route? I have a diabetes nurse but feel it's time to get a second opinion.

My quality of life is very poor as I suffer from terrible memory problems since starting on the insulin. In fact, I now have neuropathy. I am constantly hungry, I still go to the bathroom during the night several times. I can’t gain weight, I have lost in excess of 20kg 44Lbs. Is it normal to take so many tablets on top of the insulin?


Many thanks in advance.

Jay

I'm so shocked that you should need to pay privately in your circumstances Jay. Why on earth aren't the public health services addressing your ongoing problems?
Frankly I would pay to see a Consultant in your situation and I wish you well. This shouldn't be happening.

 

[Robin]

Hello, jay, and welcome. Yes, this is exactly the right place to post. Firstly, a question. Is the nurse you see attached to your GP surgery, rather than a specialist diabetic nurse at a hospital? I am wondering, because of your history and continuing symptoms, whether you could actually be Type 1 not type 2. Many GP nurses are unaware that this is a possibility for someone your age. I ask this because I was 50 when I developed diabetes, and it turned out to be type 1. What are your daily Blood Glucose levels like? Do you have huge spikes?
Really, your GP should be prepared to refer you to a consultant ( on the NHS, if you are in the UK), and with some urgency. As Amigo says, this is what should be happening.

 

[Martin Canty]

I'm with Robin on this one, particularly if your A1c is high & you have not particularly been trying to lose weight. Check with your GP...

 

[JayType 1]

Hello Robin,

Thanks for your reply and warm welcome. The nurse is a diabetes specialist nurse who covers several health centres within the Scottish health authority where I live. Recent blood glucose readings over the past week have been, 14.3,15.7,11.7,10.5,6.4,10.1,15.1,12.8,20.1,6.4,9.4,12.3. The nurse consults periodically with a diabetes consultant at the hospital. Consultation by proxy, to save money I guess.

 

[Robin]

Hello Robin,

Thanks for your reply and warm welcome. The nurse is a diabetes specialist nurse who covers several health centres within the Scottish health authority where I live. Recent blood glucose readings over the past week have been, 14.3,15.7,11.7,10.5,6.4,10.1,15.1,12.8,20.1,6.4,9.4,12.3. The nurse consults periodically with a diabetes consultant at the hospital. Consultation by proxy, to save money I guess.

Well, whatever she's doing isn't working for you, so I'd press for a face to face consultation. Those numbers, while not being 'get to hospital,fast' levels, are a lot higher than you'd want them to be for any length of time.

 

[Derek Stubbs]

I'm no expert, but not trying to loose weight & still having high levels & eating well, could be Type 1 or could be an underlying health problem, not related to Diabetes, needs checking out. I know Type 2's can need insulin as it's all down to the pancreas not producing enough insulin, like you, I am underweight. What's your stools like ? A quick test would be to just eat high fats for a week or two & cut everything else out, & see what colour your stools are. When I eat mainly fats, I get yellowish stools which is a sign your pancreas is not digesting fats. I am booked in to see about my pancreas. I used to drink a lot many years ago, Alcohol causes a lot of pancreas problems. Most type 2's tend to be insulin resistant, but some , might not produce enough (then need insulin like yourself) due to Pancreas wear & tear or damage sometime in the past. Either way, you need more testing for sure.

 

[Northerner]

My quality of life is very poor as I suffer from terrible memory problems since starting on the insulin. In fact, I now have neuropathy. I am constantly hungry, I still go to the bathroom during the night several times. I can’t gain weight, I have lost in excess of 20kg 44Lbs. Is it normal to take so many tablets on top of the insulin?

Jay, I would ask for a direct referral to see a consultant. This is sounding awfully like a slow-onset Type 1, given your lack of response to oral medication and currently insufficient insulin doses, and your significant weight loss. We don't all fit into simple categories of Type 1 and Type 2, but often healthcare professionals fail to recognise this and work off stereotypes like age, weight etc. As things stand I would say you are not on an appropriate regime for your diabetes - you are unable to benefit from the food you eat and are losing weight with constant elevated blood sugar levels. I would treat this as a matter of some urgency because what is currently happening is that your body is burning body fat (what little remains) and muscle fibre and not using the glucose provided in your food. This situation can develop very slowly for some people, so is often mistaken for Type 2. However, I was similar - losing weight and with symptoms for about 18 months prior to diagnosis (admitted as an emergency) at the age of 49.

Please make an appointment as soon as possible - you shouldn't need to pay privately, your situation is screaming out for a face-to-face consultation with an expert. Your nurse may not have encountered situations like this before, it is relatively rare in the population.

Good luck, and please let us know how you get on! 🙂

 

[JayType 1]

Thank you for all the feedback. I have taken your advice on board and I have managed to make a telephone appointment with my GP this afternoon. Sadly, in my health centre for a face to face appointment the patient doesn't get to choose which doctor to see, also the telephone appointment was the most expedient.

I will post an update as soon as I can.

 

[Northerner]

Good to hear Jay, don't take no for an answer, it's your health at stake, not theirs.

 

[DaveB]

Hi. As others have said you sound like a late onset Type 1 and not T2 as you have lost a lot of weight and can't control your blood sugar - that's a big pointer to T1. If you can find a medic who will listen ask for the two tests c-peptide and GAD. The former is more important as it will indicate how much insulin you have. Yes, it's unusual to take the full set of tablets and insulin. From what you say you might want to ask for the Basal/Bolus insulin regime and to stop the Gliclazide and Sitaglitpin. As you are very likely to be a T1 then ideally just Basal/Bolus insulin perhaps with Metformin is a typical treatment plan for T1 (same as mine). Obviously you should discuss all this with the DN/GP before seeking other opinions but the NHS ideally should be doing it's job. I did hit various obstacles in my surgery due to ignorance but got there in the end. BTW you can have the two tests done privately as I did.

 

[JayType 1]

Good evening, armed with all the invaluable advice from here I had the telephone appointment with my GP. He has referred me to see a NHS consultant. I had never heard of c-peptide and GAD tests before, so now come the consultation I will be better prepared. Enjoy the weekend and I will keep you all updated. Thanks

 

[Northerner]

Good evening, armed with all the invaluable advice from here I had the telephone appointment with my GP. He has referred me to see a NHS consultant. I had never heard of c-peptide and GAD tests before, so now come the consultation I will be better prepared. Enjoy the weekend and I will keep you all updated. Thanks

Great to hear Jay 🙂 I hope they can get you sorted out with the right medication/insulin for your needs and it's not too long before you start feeling better and enjoying life again 🙂

 

[Ljc]

That's good to hear.