Recent Type 2 Probable Type 1 Diagnosis

[Val1133]

Hi. I got a phone call 3 weeks ago from the diabetic nurse to come in today as my blood sugar levels were at 20 and the HbA1c levels above 150. I didn't know what a normal level was and was shocked when she said it was 4!

I had gone for a blood check a few days beforehand as I was losing weight without having to try (16 lbs in a month) and was constantly thirsty and drinking lots and peeing lots. I was also tired and sometimes dizzy. I also found at times that I wasn't able to finish my meals - and, believe me, that was not normal for me!

The Diabetic Nurse wasn't sure if it would be Type 1 or Type 2, but she and the Dr are treating it as type 2 just now because of my age (62) and the fact that my brother and father both have Type 2.

I think my weight loss was caused by my body telling me I had to change my eating habits - I had been eating a lot of sugary and processed foods. The last thing I thought about every day was food and often skipped breakfast or lunch. As a result I was reaching for the quickest, easiest options, which were often unhealthy. I started cutting out the rubbish and eating as healthily as possible as I wasn't feeling too good, but didn't know why - hence the weight loss, or so I thought! I was happy with the weight loss, but knew I wasn't really trying.

Now I know why! I was given a blood sugar monitor and told to check my blood sugars every morning before breakfast and before dinner. I am on Glicklazide (2 per day) and Metformin (4 per day). I have been checking my bloods about 4 times a day as I am trying to find out how the food I eat affects the blood sugars. For the first week, my blood sugar levels were all over the place, ranging from 6.5 to17.9. This week they have been below 10.

I have cut out all sugary foods and am trying to eat healthily, but am still losing weight. I don't want to lose much more as I am happy with my weight now. I have been counting calories recently and discovered that I am not eating enough to maintain my current weight, but I don't really know what I should be eating.

 

[Inka]

Welcome @Val1133 Have they actually done the necessary blood tests to rule out Type 1? Type 1 can occur at any age - lots of people are diagnosed with it later in life. Losing weight without trying to and suddenly is one of the symptoms.

I had gone for a blood check a few days beforehand as I was losing weight without having to try (16 lbs in a month) and was constantly thirsty and drinking lots and peeing lots.

This is concerning and sounds very possibly Type 1. Gliclazide isn’t ideal for Type 1 and if there’s any chance your Type 1 that needs ruling out.

 

[everydayupsanddowns]

Welcome to the forum @Val1133

Hope they are running additional checks to confirm your classification. Measuring cPeptide shows how much “home grown” insulin you are producing, and there are GAD antibody checks which can help confirm things too.

Some of the meds you are on encourage beta cells to produce more insulin, which might not help them long-term if your beta cell mass is dwindling?

 

[Val1133]

I have been referred for further tests/screening of the pancreas to rule out anything more serious. I am just hoping I can get an appointment soon.

 

[everydayupsanddowns]

I have been referred for further tests/screening of the pancreas to rule out anything more serious. I am just hoping I can get an appointment soon.

Glad they are keeping a close eye in things Val.

Fingers crossed you get some clarity soon, and an effective plan of action can be put in place 🙂

 

[Val1133]

Hi. I thought I would give an update.

I am still losing approximately 1 lb per week and am starting to look too thin, so I phoned the doctor on Monday and they took bloods for an HbA1c test. My diabetic nurse rang me yesterday and told me it is now down to 68! (It had been 115 and not 150 as I had stated in my first post.) This is just 2 months after diagnosis, so I am delighted 🙂

My blood glucose levels are now averaging between 6 and 8, so are also at a reasonable level.

My cholesterol has come down to 4.3 from 5.7 and my diabetic nurse thinks that's amazing that it went down so far with diet alone.

Since I am still losing weight and am still thirsty, the diabetic nurse called me in again today to give bloods for an antibody test to see if it is type 1 or 2. I should get the results in about 10 days.

I have been red flagged for a scan to see if there is anything more ominous going on, however the time from referral is now at least 10 weeks (originally it was 6 weeks, then 8 weeks, now 10 weeks - it will probably be 12 weeks next time I ring them ). I can't even get a private appointment any sooner.

Anyway, although I am still worried about the red flag referral, I am delighted to be making good progress.

 

[Charlotte DUK]

Hi @Val1133 and welcome to the forum 🙂

So happy to read about the positive changes to your blood glucose levels and your cholesterol. Glad to hear that you are feeling a bit better even with the concerns about the referral.

I hope that you are able to get your scan soon and continue your progress

 

[Leadinglights]

If you don't want to lose more weight then you could introduce more healthy fats into your diet, nuts, avocado, olive oil, eggs and cheese, full fat yoghurt and making sure you have protein.
Hope you get your scan soon. If you say you can accept cancellations at short notice then that could speed things up.

 

[Nx lady]

Hi. I got a phone call 3 weeks ago from the diabetic nurse to come in today as my blood sugar levels were at 20 and the HbA1c levels above 150. I didn't know what a normal level was and was shocked when she said it was 4!

I had gone for a blood check a few days beforehand as I was losing weight without having to try (16 lbs in a month) and was constantly thirsty and drinking lots and peeing lots. I was also tired and sometimes dizzy. I also found at times that I wasn't able to finish my meals - and, believe me, that was not normal for me!

The Diabetic Nurse wasn't sure if it would be Type 1 or Type 2, but she and the Dr are treating it as type 2 just now because of my age (62) and the fact that my brother and father both have Type 2.

I think my weight loss was caused by my body telling me I had to change my eating habits - I had been eating a lot of sugary and processed foods. The last thing I thought about every day was food and often skipped breakfast or lunch. As a result I was reaching for the quickest, easiest options, which were often unhealthy. I started cutting out the rubbish and eating as healthily as possible as I wasn't feeling too good, but didn't know why - hence the weight loss, or so I thought! I was happy with the weight loss, but knew I wasn't really trying.

Now I know why! I was given a blood sugar monitor and told to check my blood sugars every morning before breakfast and before dinner. I am on Glicklazide (2 per day) and Metformin (4 per day). I have been checking my bloods about 4 times a day as I am trying to find out how the food I eat affects the blood sugars. For the first week, my blood sugar levels were all over the place, ranging from 6.5 to17.9. This week they have been below 10.

I have cut out all sugary foods and am trying to eat healthily, but am still losing weight. I don't want to lose much more as I am happy with my weight now. I have been counting calories recently and discovered that I am not eating enough to maintain my current weight, but I don't really know what I should be eating.

 

[Nx lady]

Hi I have the very same problem losing weight without trying.
I’m on 4 metformin a day plus alogliptin once a day. I’m looking very thin atm. Going to ask for pancreas scan to rule anything ominous out.
I have had the blood test to confirm I’m type 2. But before this my Dn put me on insulin and I did gain a stone in weight but as soon as I came off it I lost the weight it’s so frustrating and I don’t know what else to do?

 

[Leadinglights]

Hi I have the very same problem losing weight without trying.
I’m on 4 metformin a day plus alogliptin once a day. I’m looking very thin atm. Going to ask for pancreas scan to rule anything ominous out.
I have had the blood test to confirm I’m type 2. But before this my Dn put me on insulin and I did gain a stone in weight but as soon as I came off it I lost the weight it’s so frustrating and I don’t know what else to do?

It does seem to be a pointer for Type 1 or LADA, did the test definitely rule it out. Did you have both tests C-peptide and GAD antibodies. Interpretation of the results is sometime tricky and needs specialist input.

 

[DouglasXKR]

ask if they’ve tested for diabetic ketoacidosis.

 

[everydayupsanddowns]

Since I am still losing weight and am still thirsty, the diabetic nurse called me in again today to give bloods for an antibody test to see if it is type 1 or 2. I should get the results in about 10 days.

I have been red flagged for a scan to see if there is anything more ominous going on, however the time from referral is now at least 10 weeks (originally it was 6 weeks, then 8 weeks, now 10 weeks - it will probably be 12 weeks next time I ring them ). I can't even get a private appointment any sooner.

Thanks for the update @Val1133

Congrats on your cracking A1c reduction!

Sorry to hear it will be such a long time until you can have that scan after your referral

Hope the antibody tests provide some clarity in the meantime.

 

[Val1133]

Another update.... I have just received the results of my GAD antibody test and it shows 826.0 U/ml. I think it should be between (0-5).

I have also had my scan and am awaiting results. In the meantime, I have had results of a "Se CA19-9 level" test and it came back at 10 U/ml. (0-37) is the range, so I think it is OK.

I have just received these results, so I have to phone my doctor in tomorrow morning's telephone lottery to discuss the results with her.

I am still losing weight, but more slowly now as I have been eating lots of nuts between meals.

 

[everydayupsanddowns]

I have just received the results of my GAD antibody test and it shows 826.0 U/ml. I think it should be between (0-5).

Wowsers! To my untrained eye that looks, um… “A little outside the reference range” 😱

I’ve not heard of CA19-9 - what does that measure?

Hope you manage to luck-out with the GP’s phone system tomorrow!

Let us know what they say 🙂

 

[Bruce Stephens]

I’ve not heard of CA19-9 - what does that measure?

Dr Google says "Carbohydrate antigen (CA) 19-9 is a type of antigen released by pancreatic cancer cells. It can also be referred to as a tumor marker."

 

[everydayupsanddowns]

Dr Google says "Carbohydrate antigen (CA) 19-9 is a type of antigen released by pancreatic cancer cells. It can also be referred to as a tumor marker."

Thanks!

My second-hand experience of pancreatic cancer diagnosis was more of the “straight to CT scan“ variety

 

[Bruce Stephens]

My second-hand experience of pancreatic cancer diagnosis was more of the “straight to CT scan“ variety

I guess this test is cheap and available enough that they decided to add it on, just in case.

 

[Val1133]

I spoke to a doctor Yesterday afternoon (Friday). She was useless! She actually said she didn't know what the results of the GAD antibody test means. I told her it was related to diabetes and that the Diabetic nurse requested it to see if I may have LADA. To be fair, she wasn't the one who signed off the request. It was another doctor in the practice, but she was involved in requesting the other tests that I had to talk to her about. Maybe she doesn't have much experience in the Diabetic field. I will contact the Diabetic nurse next week and see if she knows what to do about the result.

I have had the CT scan, but won't have the results for another few weeks. The hospital requested the Se CA19-9 level test (I had to consult Dr Google about it too) and a test for coeliac disease. They both came back normal, which is good news.

 

[Lucyr]

I think the antibody test tells you it’s type 1, and the other test tells you it’s not something more sinister like pancreatic cancer.

Ask your GP for a referral to a hospital diabetes centre to interpret the results and get you started on the appropriate treatment.