Advice

[LittleSunflower]

Hello all, hope you’re all keeping well.
I am in need of a little advice from you; over the past few months I have been unintentionally losing weight. I am part of the NDPP (NHS Diabetes Prevention Programme) for Type 2 which requires me to weigh myself before every session (roughly every 4 weeks). I have lost 9lbs over the course of what I believe is 2-4 months. If you’ve read my previous posts, you know my result came back as 50-51 (when tested twice) which puts me in the diabetic range. There is a history of type 1 but also thyroid issues that run in my family. I was not fully tested for this, this year. I was only tested for Diabetes with one tube of blood (whereas I believe a HBA1C is 3 tubes normally.) I was referred to the Diabetic clinic at the hospital but the wait is 14 weeks. I do not know my diagnosis and it’s quite honestly making me stressed and anxious too.
I feel silly ringing places over and over again as I know they’re busy but I’m just not getting any answers and am becoming increasingly concerned about my weight loss. I have felt hungry, daily headaches (especially in the evening) and very thirsty within the past week.
I have tested myself this morning upon waking and it was 11.5/mmol.
Any advice on what to do next? Thank you.

 

[rebrascora]

Hi. Can you explain what NDPP is please. I am not familiar with that abbreviation and others may not be too.

As regards your weight loss, do you have obvious weight to lose or are you already at a normal or low BMI. The weight loss you mention is not excessive in my opinion, so it will depend if you have modified your diet and if so in what way. I know I was losing a steady 2-3lbs a week for 6 weeks in the early days of my diagnosis, and I was about 2st down by the time I was started on insulin.

HbA1c only needs one phial of blood but other phials are sometimes taken to check other things like Lipids and Liver/kidney function etc. An HbA1c of 50-51 is only just over the diabetes threshold so I would be surprised if you would experience symptoms at that level, but obviously things can change so it would depend when that test was. If it was over 6 months ago then you could ask for another HbA1c as you are seeing higher BG levels. 11.5 is certainly higher than ideal but not a huge cause for concern as a one off. What are your daytime readings like pre and 2 hours post meal?
Have you had your Covid Vaccine recently as that is causing BG upheaval for quite a few of us and I am still seeing consistently higher BG levels 7 weeks later.

If you can supply more information in response to the above questions then it might give us a greater insight into your situation.

 

[LittleSunflower]

Hello, sorry about that. I have clarified it. (NHS Diabetes Prevention Programme).

No, I do not have weight to lose. If anything, I was trying to gain weight!
I was borderline underweight when I had my bloods done so now I am definitely in the underweight category, so you can see my concern. (BMI is around 17.5 whereas it was 18.5). I have upped my fruit and veg intake, have been trying to watch how many carbs I am eating, increasing my exercise and cutting out the junk but it hasn’t been a dramatic change in diet as of yet, honestly.

The blood test for my 50-51 result was only done 2 months ago so it hasn’t really been that long since and I have not had a vaccination.

In regards to at home testing, I have only just managed to get a monitor so this is my second reading but first test for upon waking. I will have to update you on the before and after a meal results.

 

[rebrascora]

Thanks for that additional info. It paints a lot clearer picture and I can see how the weight loss is a big concern.
Testing immediately before food and then 2 hours after is the strategy that we recommend along with keeping a food diary. You are looking for a rise of no more than 3 mmols. Don't worry too much about the pre meal reading. It is the difference between the before and after which is more important initially and what you ate. That will show how you are responding to carbohydrates in your diet.
If it is a slower developing Type 1 (which it sounds like) and your levels are steadily rising then your GP or perhaps a specially trained practice nurse can start you on insulin if you need it before you get your clinic appointment or they could perhaps contact the clinic to bump your appointment. I would keep a food diary for a few days/week or so along with your readings and then get back to your GP if things are clearly escalating.

 

[Ljc]

Hi .Tbh I think they need to contact the diabetes specialists to get your appointment bumped up.
I too am wondering if you might have a slower onset T1 like myself, it’s called , diabetes LADA ( latent auto immune disease in adults or 1.5 ) its actually quite rare so your practice nurse or Gp may not have heard of it . It’s very often mistaken for T2 as it usually initially responds to T2 medications, in my case for years and years , then insulin is needed.

The tests for T1 ie the C -peptide and or the GAD antibody test is what you need to determine if you have T1 or LADA .

I know you are worried and I understand why .
If you should suddenly start to feel unwell, then get to A&E , don’t drive yourself ok.

 

[Inka]

Hello again @LittleSunflower I can see why this is worrying you. I responded to you before about your uncertain diagnosis. It’s the uncertainty that’s causing worry - and I can see why, especially with the weight loss and your low BMI.

As you’ve lost weight, I’d go back to your doctor and tell them this. But first I’d be eating a meal with a normal amount of carbs, testing before you eat and then testing again at 2hrs after your first bite of food.

 

[LittleSunflower]

Hello again @LittleSunflower I can see why this is worrying you. I responded to you before about your uncertain diagnosis. It’s the uncertainty that’s causing worry - and I can see why, especially with the weight loss and your low BMI.

As you’ve lost weight, I’d go back to your doctor and tell them this. But first I’d be eating a meal with a normal amount of carbs, testing before you eat and then testing again at 2hrs after your first bite of food.

Hello @Inka, yes I remember, thank you. I have just tested before dinner and my result was 16.2 mmol. I’ve never seen a reading this high before. What does this mean, do you know?

 

[Inka]

Hello @Inka, yes I remember, thank you. I have just tested before dinner and my result was 16.2 mmol. I’ve never seen a reading this high before. What does this mean, do you know?

16.2 is well above the normal range but not ‘awful’ so don’t panic. It will be interesting to see your 2hr result.
Your blood sugar has probably gone up during the day simply because you ate. Obviously you need to eat!

If you can get a few readings like this, it will be good information for your doctor. If you’re near a chemist tomorrow, you could also get some Ketostix to test for ketones in your urine. I think they’re fairly cheap.

 

[LittleSunflower]

16.2 is well above the normal range but not ‘awful’ so don’t panic. It will be interesting to see your 2hr result.
Your blood sugar has probably gone up during the day simply because you ate. Obviously you need to eat!

If you can get a few readings like this, it will be good information for your doctor. If you’re near a chemist tomorrow, you could also get some Ketostix to test for ketones in your urine. I think they’re fairly cheap.

My 2 hour result has come back as 16.4?

Yes, after having tested today I am much more comfortable with the testing. Worked myself up about the first one, now I hardly feel it.
I will check the chemist for those thank you

 

[Inka]

You started the meal high but that’s not a big rise at all @LittleSunflower What did you eat?

 

[LittleSunflower]

You started the meal high but that’s not a big rise at all @LittleSunflower What did you eat?

@Inka surprisingly a high carb meal (around 50g in total) which I was worried would make the result higher. It was a chicken and mushroom pie and a handful of chips (not the healthiest I know).

 

[Inka]

That’s certainly an ‘enough carbs’ meal so that’s very interesting. I think I’d be tempted to eat the same again and test at 1, 2 and 3 hours (in case the fat delayed a rise).

 

[LittleSunflower]

That’s certainly an ‘enough carbs’ meal so that’s very interesting. I think I’d be tempted to eat the same again and test at 1, 2 and 3 hours (in case the fat delayed a rise).

If my levels continue to be high, as they were yesterday, what exactly does this mean and how can I bring them down? I’ve read people have medication to help but obviously I’m awaiting the specifications around the help I receive in relation to my diabetes. It doesn’t help my anxiety at all, not knowing which type I am or what’s causing the weight loss and now seeing a high reading when checking levels.

 

[Inka]

I’m not in any way a medical professional @LittleSunflower so I can’t say. I would have expected your blood sugar to go up after a carby meal so your result is surprising to me as a person with Type 1. That does not mean it’s wrong or anything bad.

We have the long weekend now so don’t worry about any more experiments for a few days. Enjoy the Easter break. If you’re ok about it keep testing, but leave it till next week if you prefer.

I don’t think your results above can determine your type by themselves. They will be clues that will help, not an automatic answer. When I was diagnosed as Type 1 many years ago, the consultant didn’t do any blood tests. She said I was young, slim and had excellent insulin sensitivity so it was Type 1. It was only many years later that I had the tests to confirm that. Although we think of just the three basic types of diabetes, we can present in different ways and that can complicate diagnosis.

 

[everydayupsanddowns]

Sorry to hear that the uncertainty over your diabetes type is causing you so much anxiety and upset @LittleSunflower

Diabetes can be a tricky little gremlin to tie down. An accurate diagnosis is really important in terms of accessing the most appropriate treatments and technologies - but it isn’t always easy because diabetes doesn’t always play by the rules.

Often it’s a matter of balancing the clinical factors in the presentation, but sometimes these factors aren’t 100% clear. Sometimes additional checks like GAD antibody or cPeptide can help, but these are not necessarily conclusive in themselves so they aren’t checked as a matter of routine.

This all makes classification of some of the rarer types of diabetes a bit of a nightmare for GPs and non-specialists unfortunately.

Hope you soon get some clarity, and an effective and appropriate treatment plan really soon, and can begin to move forwards and tackle your weight loss, which must be very worrying for you

 

[LittleSunflower]

Hello all, a little update for you. I am being started on insulin this week for what they believe is LADA. It seems I have been in some sort of honeymoon period and now my levels are fluctuating all over the place (always higher than what the normal should be). My level when tested by the nurse earlier was a concerning 21.7! A very near trip to the hospital.
I’m very anxious about everything as I’ve been fed a lot of information today.
Thank you for the encouragement to continue asking what’s going on. I am so grateful for the amazing nurses who dealt with me at my GP surgery today. They made it their mission to provide me with answers and more information by the end of the day and that’s exactly what’s happened, definitely got the ball rolling.

 

[rebrascora]

So pleased to hear you are getting good support and a clearer idea of your diagnosis and starting on insulin. I know it is not what anyone wants but it is the appropriate medication to treat your diabetes and hopefully you will start to feel a lot better soon. Feel free to ask any questions you have here on the forum because the answers will help you to have more informed conversations with the nurse when they start you on insulin. I found it was a big shock to my system being told I was starting on insulin and a lot of it was a blur but learning from people here on the forum both before and afterwards helped bits of information click into place.

They should be starting you on a basal/bolus insulin regime where you will have a slow release insulin to cover the glucose trickled out by your liver when you are not eating. through the night etc, to ensure a ready supply of energy for your brain and other vital organs to keep functioning and fast acting (bolus) insulin to cover the carbs in the food you eat.

Anyway, look forward to you reporting back once you have started on insulin and feeling a lot better but in the meantime shout up if you are confused about anything.

 

[Inka]

Finally @LittleSunflower ! That’s great news 🙂 Getting the right treatment will make a huge difference. I completely understand that you might be anxious about the insulin, but remember you’ll be started on small doses and that will gradually be increased as necessary. It is a big change, but it should make you feel much better in yourself.

LADA is a form of Type 1 as you probably know. Make sure you get a Type 1 insulin regime not just a basal/background insulin. Don’t be afraid to ask questions - as many as you want and need to.

 

[Ljc]

@LittleSunflower . I am so pleased to hear that you are going to get the right treatment at long last. Yes it is a lot to take in at first , but you will get there, honest ! I am also a little surprised in a good way that they have heard about. LADA.

Do you know yet what insulin’s you are on.

 

[LittleSunflower]

@LittleSunflower . I am so pleased to hear that you are going to get the right treatment at long last. Yes it is a lot to take in at first , but you will get there, honest ! I am also a little surprised in a good way that they have heard about. LADA.

Do you know yet what insulin’s you are on.

I have been prescribed Levemir and Novorapid.