I have questions

[Icthus]

Hello all!

I have lots of questions because right now I have no answers from my health care team. I'll try and give you a very quick summary of whats going on.

EDIT: Forgot the mention that I am 36 and male!

- Went to the doctors with Upper Right Abdominal pain and changes in GI for over a month
- Suite of bloods came in with only a very high HbA1C of 99 (retested a week later at 98) cholesterol was normal blood pressure normal I did have a BMI of 32 (I do carry weight but I'm more of a rugby player build than obese)
- Self funded libre 2 due to a really bad needle phobia so I simply can't do the finger prick tests at all and on metformin 500mg twice a day
- Sent to diabetic clinic and as the nurse and dr have said "I don't fit the criteria of type 2" and testing for LADA (5th of June and no response from the clinic yet)
- Since diagnosis I have lost 12kg of weight (185cm/ 6ft 1, 99kg now BMI of 29)
- 65 days into the 90 days of the libre estimated A1C at 5.6% (38 mmol/mol)
- Sent for CT Scan of pancreas to make sure nothing untoward happening and came back clear
- Still having URA pain and when these attacks happen my BGL spike and I sit really high the rest of the day GP has said that it'll go away once I get my bloods under control which obviously hasn't happened and bloods are always within range now.
- Started having hypo's after doing my evening 2km walks dropping down from 8/9 to 3.2 (Roughly 15mins in length and self recovering without any intervention) at the spike of my evening meal


So my questions, is any of this normal for a type 2? Is there anything I'm doing that causes these hypos? These are happening after high enough carb dinners (Potatoes/rice etc) Should I contact my clinic for further testing? I do have Bupa but I don't think they cover anything to do with diabetes but I can't find any information around that says I should be experiencing these things as a Type 2.

Any insights are greatly appreciated and thank you for any help you can give a newly diagnosed person!

 

[JoKalsbeek]

The pain sounds like it could be non-alcoholic fatty liver disease. They say it doesn't hurt, at the hospital. But it most certainly does, as others here can attest to as well. (Let them try and put shoes on with a sore liver in the way when you bend over! Yikes!) You don't have to be traditionally "obese" to have T2 diabetes: TOFI is a thing. Thin Outside, Fat Inside, where it's just very tightly packed in and around your organs. Doesn't show to look at you, but an ultrasound should ping it. (Also, pain can raise blood sugars, as can stress etc, so not surprised you're high and remain that way, when you're suffering!)

https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html might help. I have no idea whether the pain IS coming from your liver, but mine was supposed to kill me years ago, and while tackling my T2 with a low carb diet, it fixed my liver as well. Happy accident.

What medication are you on? If it is metformin only, you shouldn't be experiencing hypo's. With gliclazide and the like, you could hypo. Then there's also a condition called Reactive Hypoglycemia, when your blood sugars peak, and your pancreas overshoots the amount of insulin you need, resulting in a hypo. Also solved with a low carb diet, as with no spikes, there are no resulting dips either.

Dunno if this helps, but there you go.

Edit: I posted before, but took it down again as for some reason I thought I read you were on insulin. Different advice then.

 

[Deleted member 475901]

My NAFLD (fatty liver) also resolved when I went low carb, in spite of one GP being very anti my 'HIGH FAT' diet - never low carb in his eyes.
I booked in for tests to go on a research project for NAFLD and their scan showed my liver was back to normal about a year after going low carb.
And yes it used to hurt.

 

[Icthus]

Thank you! I did have a liver/kidney function test and everything has come back normal so it's all very confusing for me still. I'm on metformin only which from everything I'm reading shouldn't cause hypo's at all.

My work has been super stressful for a year now and I know that can cause higher than normal BGL, before covid I was running 3 5km a week so this diagnosis came as great shock to me as well as the GP.

Obviously to loose weight I'm cutting out all my usual snackage but not to the point where I'm loosing weight at an unhealthy pace (Roughly 1kg a week) and I'm cutting out any foods that raise my BLG more than 2 at it's peak (Pizza is now completely out of the picture!)

My main concerns right now is my fitness regime is causing hypo's and the pain.

 

[Icthus]

My NAFLD (fatty liver) also resolved when I went low carb, in spite of one GP being very anti my 'HIGH FAT' diet - never low carb in his eyes.
I booked in for tests to go on a research project for NAFLD and their scan showed my liver was back to normal about a year after going low carb.
And yes it used to hurt.

Is there a particular test I can ask for to see if I do have NAFLD?

 

[JoKalsbeek]

Thank you! I did have a liver/kidney function test and everything has come back normal so it's all very confusing for me still. I'm on metformin only which from everything I'm reading shouldn't cause hypo's at all.

My work has been super stressful for a year now and I know that can cause higher than normal BGL, before covid I was running 3 5km a week so this diagnosis came as great shock to me as well as the GP.

Obviously to loose weight I'm cutting out all my usual snackage but not to the point where I'm loosing weight at an unhealthy pace (Roughly 1kg a week) and I'm cutting out any foods that raise my BLG more than 2 at it's peak (Pizza is now completely out of the picture!)

My main concerns right now is my fitness regime is causing hypo's and the pain.

I don't do fitness. Not even close, not with these joints. That said though... If you're only cutting out snacks but still getting your main energy from carbs, it might be worth it to look into a keto diet. If you're in nutritional ketosis, your body uses fat (your own and the kind you eat), rather than carbs for energy. That should even out the ups and downs, but it takes a little time of adjustment for your body to become a fat-burner rather than a carb-burner. You'll feel like a little old lady with a blue perm for a week or two, tired and with aches and pains everywhere, (though an electrolyte supplement can avert the worst of it) but it does look decidedly up after that. Might be worth a shot, just don't expect too much of yourself while transitioning. Keto'd also be good for any liver issues, if that is the case. Can you feel if your liver is hard by any chance? When you're laying down and your stomach muscles are relaxed, can you feel it in there? I went through various scans (CT, MRI, with contrast fluid, and an ultrasound), and it showed up there, but just the feel of the thing told me just about enough. It was like a solid, massive rock, right under my ribs.

I do hope you'll feel better soon!
Jo

 

[JoKalsbeek]

Is there a particular test I can ask for to see if I do have NAFLD?

One more thing. In the same area is a spot that can be slightly weak in the intestinal tract, if you are prone to IBS it could get irritated/painful as well. But that feels more colic-y.

 

[Antje77]

- Still having URA pain and when these attacks happen my BGL spike and I sit really high the rest of the day GP has said that it'll go away once I get my bloods under control

Have they done an ultrasound to check for gallstones? Those give a pain that comes in attacks.

My main concerns right now is my fitness regime is causing hypo's and the pain.

If you're only using the Libre, it may well be you never had a hypo. Libre is brilliant for finding patterns but not as good as a fingerprick for exact numbers. That 3.2 can well have been in the 4's, and for non diabetics it isn't unusual to drop to the mid 3's.

 

[Mrs HJG]

@Icthus If you are the UK you should be able to see all your test results on Patients Know Best, and your (I assume) GAD etc might well already be there - they do take a bit of time to come back, but should be within 8 weeks, if not call the diabetes team, not the GP as they can't see hospital-orders test results.

Like @Antje77 says, don't trust the Libre for the actual numbers, especially at the bottom of the scale, just use the broad range and curves, I find some sensors read high and others low, so, as I am not on insulin, I know any readings in the 3s are not actually hypos and don't worry about it.

If you are ill or taking any medication, or have recently had covid etc it will affect and raise your HbA1c, so maybe something in the previous 3 months could have lead to a temporarily high result?

Using the Libre so early on should give the diabetes clinic something really useful to go on, finger-pricking really can't do that - if Libre was more reliable I think all newly diagnosed diabetics should wear one for a couple of months to ensure the right diagnosis and treatment.

I hope you get some answers on your abdominal pain soon too.

 

[Deleted member 527103]

@Mrs HJG whilst results should be available in the UK, you need to request access and different surgeries/ICS use different systems.
My results are not available on Patients Know Best. They are available from the NHS app.

 

[Icthus]

Unfortunately I'm in the the backwards country of N.Ireland and we have very few digital services so don't have any results online!

I did get speaking to my diabetic clinic today, the diabetic nurse has advised that I drop down to 1 Metformin a day and call back next week to confirm I'm still staying within range.

They are seeing that people who have well managed type 2 having hypos on over medicated amounts so I'm clearly going about this the right way.

I did get one result back today but the nurse said that she isn't allowed to explain what it means but the consultant will contact me about it. My islet antibodies test came back negative? So does this rule out LADA?

Thank you!

 

[Mrs HJG]

Unfortunately I'm in the the backwards country of N.Ireland and we have very few digital services so don't have any results online!

I did get speaking to my diabetic clinic today, the diabetic nurse has advised that I drop down to 1 Metformin a day and call back next week to confirm I'm still staying within range.

They are seeing that people who have well managed type 2 having hypos on over medicated amounts so I'm clearly going about this the right way.

I did get one result back today but the nurse said that she isn't allowed to explain what it means but the consultant will contact me about it. My islet antibodies test came back negative? So does this rule out LADA?

Thank you!

Technology is a blessing and a curse!

I was tested for 3 antibodies, might be the norm in mainland UK, IA2, GAD and ZnT8 and all were positive, but I believe that you only need to be positive with 1 to be considered T1/LADA, but it's one of those things were you can be T1 with no-antibodies or T2 with antibodies and all combinations in between.

Having been 'low carb' for 12 months, my HbA1c continued to drop, so insulin production not thought to be further declining, but so too did my anti-body counts, which my consultant put down to my diet, (rather than no more 'bodies' left to be 'anti'!).

IMHO I don't think anyone really understands all the subtleties yet and any symptoms and results are acted on with what works/is relevant to the norm.

I hope you get to speak with the consultant soon and at least have a bit more guidance.