New poss Type 1 - HELP!

[Lolilou]

Hi all.

I’m recently diagnosed, although they’re not sure whether type 1 or 2. I’m 35, only slightly overweight (my BMI is 25) & was diagnosed 2 weeks ago after a very sudden onset of symptoms. I went to the out of hours doc thinking I had a UTI, next thing I’m being admitted to hospital & told I’m diabetic with my blood sugars reading 44.6 & ketones 0.9.

Anyway, long story short - I’m now on 80mgs Gliclazide in the morning & evening, 500 metformin in the morning & evening & 12 units of Lantus in the morning.

My readings are all over the place despite being sooooo careful about what I’m eating. Im having minimal carbs, plenty of vegetables & making healthy choices. I’m taking regular steady exercise. I don’t understand what else I’m supposed to be doing?!

Any advice most welcome 🙂

Lauren

 

[Northerner]

Hi all.

I’m recently diagnosed, although they’re not sure whether type 1 or 2. I’m 35, only slightly overweight (my BMI is 25) & was diagnosed 2 weeks ago after a very sudden onset of symptoms. I went to the out of hours doc thinking I had a UTI, next thing I’m being admitted to hospital & told I’m diabetic with my blood sugars reading 44.6 & ketones 0.9.

Anyway, long story short - I’m now on 80mgs Gliclazide in the morning & evening, 500 metformin in the morning & evening & 12 units of Lantus in the morning.

My readings are all over the place despite being sooooo careful about what I’m eating. Im having minimal carbs, plenty of vegetables & making healthy choices. I’m taking regular steady exercise. I don’t understand what else I’m supposed to be doing?!

Any advice most welcome 🙂

Lauren

Hi Lauren, welcome to the forum 🙂 I am surprised that there is even any question of you being Type 2. Everything you say - the extremely high numbers at diagnosis, the very sudden onset, the fact you have no weight-related risk factor for Type 2 - all indicate Type 1 to me (I was in a similar position at diagnosis, although I had gone all the way to DKA (uncontrolled ketones) by the time I was diagnosed). The lantus should help - what sort of levels are you getting, particularly your waking levels? What and when is the next action to be taken by your GP? I would ask for a referral to a specialist or at the very least ask for C-peptide and GAD antibody tests, which should help to give a firmer diagnosis. Have you been given any dietary advice? Carbohydrates will raise your blood sugar levels, but you need to be careful about cutting down on them without professional advice as it may need a change in your medication doses, so do seek advice, and keep some fast-acting sugar handy in case your levels fall too low (my choice is jelly babies 🙂).

This is a difficult time as your pancreas may still be producing some insulin, but not enough to keep your levels under control. I'd stick to very boring food with a predictable carb content until you know more as this should help stabilise things a bit. It's not recommended to exercise if your blood sugar levels are above 15 as this can, paradoxically, cause them to go higher.

Hopefully, things will settle for you soon once the appropriate treatment regime has been fixed. As things stand, it's a bit of a 'suck it and see' to see how well you react to what they have given you. Are you in regular contact with a DSN (Diabetes Specialist Nurse) to discuss your reactions/ blood sugar levels, or is it currently under your practice nurse and GP?

Please let us know if you have any questions or concerns and we will do our best to help! 🙂

 

[Lolilou]

Thank you so much for your reply.

I have a number of other conditions relating to my endocrine system (under active thyroid, B12 deficiencies, pernicious anemia & vitiligo). I’m seeing a specialist but not until 17h April but I give the readings to a diabetes nurse every week. She’s got me testing morning & evening for now.
For the last week they’ve been;
Am 18.1 PM 23.6
AM 14.5 PM 17.3
AM 20.3 PM 15.5
AM 19.6 PM 17.1
AM 15.2 PM 23.5
AM 18.5 PM 18.7
AM 13 PM 19.3

I’m petrified to eat anything! I was sent home from hospital with no information, just boxes of tablets & an insulin pen & all the other paraphernalia. There’s only so much googling you can do!

 

[Davein]

Thank you so much for your reply.

I have a number of other conditions relating to my endocrine system (under active thyroid, B12 deficiencies, pernicious anemia & vitiligo). I’m seeing a specialist but not until 17h April but I give the readings to a diabetes nurse every week. She’s got me testing morning & evening for now.
For the last week they’ve been;
Am 18.1 PM 23.6
AM 14.5 PM 17.3
AM 20.3 PM 15.5
AM 19.6 PM 17.1
AM 15.2 PM 23.5
AM 18.5 PM 18.7
AM 13 PM 19.3

I’m petrified to eat anything! I was sent home from hospital with no information, just boxes of tablets & an insulin pen & all the other paraphernalia. There’s only so much googling you can do!

Hi Lolilou.
Those are similar readings to what mine were before they put me on insulin therapy and I now have more reasonable readings. I'm hoping that MikeyB will come along and give you some advice.

 

[Matt Cycle]

Hi Lauren. Agree with Northerner about the diagnosis. Assuming the the 44.6 is a mmol/l blood glucose reading then it's very high indeed. What symptoms took you to the docs in the first place? With the levels like that over the last week I'd be pressing the nurse to get things sorted sooner and seeing someone before 17th April.

 

[Northerner]

Thank you so much for your reply.

I have a number of other conditions relating to my endocrine system (under active thyroid, B12 deficiencies, pernicious anemia & vitiligo). I’m seeing a specialist but not until 17h April but I give the readings to a diabetes nurse every week. She’s got me testing morning & evening for now.
For the last week they’ve been;
Am 18.1 PM 23.6
AM 14.5 PM 17.3
AM 20.3 PM 15.5
AM 19.6 PM 17.1
AM 15.2 PM 23.5
AM 18.5 PM 18.7
AM 13 PM 19.3

I’m petrified to eat anything! I was sent home from hospital with no information, just boxes of tablets & an insulin pen & all the other paraphernalia. There’s only so much googling you can do!

I honestly don't think this is good enough @Lolilou What is the nurse saying when you give her these numbers? Is she taking any action? You must be feeling pretty awful with levels like that A weekly check-in is also not good enough, and you should definitely not have to wait another 6 weeks to see a specialist! 😱

If there is no improvement in your numbers in the next couple of days then I think you ought to go back to your GP and ask for an earlier appointment with a specialist. Whilst these numbers are clearly less than the extremely high level you had at diagnosis they are still far too high. I would suggest contacting the Diabetes UK Helpline service tomorrow and explaining your situation, and ask what you can do to speed things up. Your experience mirrors many of our other members who were initially misdiagnosed and had to endure a medication regime that did not do the job intended i.e. get your levels under control. The Helpline details are on this link:

https://www.diabetes.org.uk/How_we_help/Helpline

Contact your nurse or GP first and see what they are prepared to do, and if it isn't satisfactory then try the Helpline. Good luck, please let us know how you get on.

 

[mikeyB]

Hi Lauren. Point one: you need to see a specialist this week, not in April. Like Northerner, I strongly suspect you are type 1, so the tablets aren’t really doing anything. That said, don’t stop them. When you see the diabetic nurse, insist on her arranging an urgent date for your hospital appointment.

If you get a reading close to 30, head off to A&E. You won’t be able to fix that with the tools at your disposal.

Oh - and welcome to the gang. Almost forgot- and see you around.

 

[Lolilou]

Hi Lauren. Agree with Northerner about the diagnosis. Assuming the the 44.6 is a mmol/l blood glucose reading then it's very high indeed. What symptoms took you to the docs in the first place? With the levels like that over the last week I'd be pressing the nurse to get things sorted sooner and seeing someone before 17th April.

Hi Matt

The only symptoms I had were drinking water as though it was going out of fashion for around a week then obviously going to the loo every 5 minutes. I’d had a terrible dose of tonsillitis & assumed that I maybe had flu with a water infection but nope! Yes 44.6 was the glucose (sorry, still trying to work out all the terminology!) They’ve doubled the gliclazide since Thursday but my sugars are still creeping up. I’ll ring the nurse again tomorrow because maybe 12 units of the Lantus/insulin isn’t really cutting it. It’s all so daunting

 

[Matt Cycle]

Hi Matt

The only symptoms I had were drinking water as though it was going out of fashion for around a week then obviously going to the loo every 5 minutes. I’d had a terrible dose of tonsillitis & assumed that I maybe had flu with a water infection but nope! Yes 44.6 was the glucose (sorry, still trying to work out all the terminology!) They’ve doubled the gliclazide since Thursday but my sugars are still creeping up. I’ll ring the nurse again tomorrow because maybe 12 units of the Lantus/insulin isn’t really cutting it. It’s all so daunting

Hi, yes in that case you really need to see someone sooner. They sound like typical T1 symptoms and levels.

 

[trophywench]

Hiya

Ridiculous - to me merely as a T1 with no 'real' medical training. If you aren't insulin resistant (and I see no reason why you would be from what you said) the Metformin will do absolutely nowt and if your insulin producing cells are on their last legs - which they always will be if you are t1, even if they're not absolutely stone dead as yet - then the Gliclazide can hardly make them push out more insulin, which is basically what its designed to do - can it ?

Hence the only help your poor ole pancreas is getting is 12u of Lantus. It's clearly not enough on its own which is no surprise whatever - at 22 and 7stone 12 my daily total dose was 33u of a 'mixed' insulin - longer acting (like Lantus) missed with shorter acting (like Novorapid, Humalog or Apidra for meals these days) Hence - the national guidelines for newly diagnosed Type 1s is to put them on BOTH long and short acting insulins - more jabs a day but it is what WORKS.

Where is this D nurse - the hospital or the GP surgery and what other tests are the hospital doing other than ones to measure blood glucose? Was either 'GAD antibodies' or 'C-peptide' mentioned?

 

[Lolilou]

Hi Lauren. Point one: you need to see a specialist this week, not in April. Like Northerner, I strongly suspect you are type 1, so the tablets aren’t really doing anything. That said, don’t stop them. When you see the diabetic nurse, insist on her arranging an urgent date for your hospital appointment.

If you get a reading close to 30, head off to A&E. You won’t be able to fix that with the tools at your disposal.

Oh - and welcome to the gang. Almost forgot- and see you around.

Hiya

Ridiculous - to me merely as a T1 with no 'real' medical training. If you aren't insulin resistant (and I see no reason why you would be from what you said) the Metformin will do absolutely nowt and if your insulin producing cells are on their last legs - which they always will be if you are t1, even if they're not absolutely stone dead as yet - then the Gliclazide can hardly make them push out more insulin, which is basically what its designed to do - can it ?

Hence the only help your poor ole pancreas is getting is 12u of Lantus. It's clearly not enough on its own which is no surprise whatever - at 22 and 7stone 12 my daily total dose was 33u of a 'mixed' insulin - longer acting (like Lantus) missed with shorter acting (like Novorapid, Humalog or Apidra for meals these days) Hence - the national guidelines for newly diagnosed Type 1s is to put them on BOTH long and short acting insulins - more jabs a day but it is what WORKS.

Where is this D nurse - the hospital or the GP surgery and what other tests are the hospital doing other than ones to measure blood glucose? Was either 'GAD antibodies' or 'C-peptide' mentioned?

Hiya

Ridiculous - to me merely as a T1 with no 'real' medical training. If you aren't insulin resistant (and I see no reason why you would be from what you said) the Metformin will do absolutely nowt and if your insulin producing cells are on their last legs - which they always will be if you are t1, even if they're not absolutely stone dead as yet - then the Gliclazide can hardly make them push out more insulin, which is basically what its designed to do - can it ?

Hence the only help your poor ole pancreas is getting is 12u of Lantus. It's clearly not enough on its own which is no surprise whatever - at 22 and 7stone 12 my daily total dose was 33u of a 'mixed' insulin - longer acting (like Lantus) missed with shorter acting (like Novorapid, Humalog or Apidra for meals these days) Hence - the national guidelines for newly diagnosed Type 1s is to put them on BOTH long and short acting insulins - more jabs a day but it is what WORKS.

Where is this D nurse - the hospital or the GP surgery and what other tests are the hospital doing other than ones to measure blood glucose? Was either 'GAD antibodies' or 'C-peptide' mentioned?

They’ve not mentioned either of those. What you’ve said makes complete sense to me. They doubled the gliclazide a few days ago but my reading are exactly the same. The nurse is based at the hospital but is part of the community team (I think). My GP are just prescribing whatever she has recommended & not really getting involved in any of it until I’ve seen the specialist. I think it’s so bad that they just say “oh you’re diabetic, take these & we’ll see you in the community”. I’m monitoring my ketones & they haven’t gone over 0.6 but they’re up & down like a yo-yo. I was told not to worry or focus on the glucose but more the ketones. I’m scared of eating anything for fear of pushing them up. I’m just really lost to be honest!

 

[Davein]

Quite frankly Lolilou if you get no joy getting an urgent appointment I would present myself at A&E or a 24 hour urgent care centre if I were you. They have a duty of care to treat you. You have heard the advice/opinions of well respected knowledgeable forum members (Mike is a doctor) and as I said before your readings are similar to what mine were BEFORE being put on Insulin.I too had monitored my BG's for a few weeks and as soon as I presents them to my GP I was put on insulin STRAIGHT AWAY as well as being weaned of Gliclazide. I tend to go by my gut instinct and you are obviously not on the correct therapy in my opinion. Trust your instincts and go to your hospital if you get no joy elsewhere. You will not be wasting their time. The members on here know what they are talking about.

 

[HOBIE]

It sounds like you are doing the right thing. Low carbs & exercise will do no harm. Really good luck 🙂

 

[Northerner]

It sounds like you are doing the right thing. Low carbs & exercise will do no harm. Really good luck 🙂

Exercising when your levels are above 15 is NOT recommended. This means your body does not have enough circulating insulin to bring the glucose levels down, and can cause them to go higher and increase ketone levels because fat has to be burned for energy, since it can't use the energy from glucose.

 

[HOBIE]

Really good luck. Lolilou. 🙂

 

[everydayupsanddowns]

Completely agree with @Northerner - exercise at the levels you are quoting is not recommended.

You don’t seem to be producing very high levels of ketones (which might suggest you have a little bit of ‘honeymoon’ residual insulin production) but it seems that you really need a proper insulin replacement therapy of rapid acting and background insulin (often called MDI or basal/bolus)

For what its worth I don’t produce ketones rapidly either, but I’m definitely T1 and have been for over 25 years.

Do your clinic know you are eating hardly any carbs? They may be assuming your levels in the high teens are down to you eating 200-300g of carbs a day.

 

[Lolilou]

So my waking reading was 12.9. Took my 80mgs Gliclazide, 12u Lantus, 500mg metformin then ate 40g of all bran with 150ml skimmed milk & a black coffee with no sugar or sweetener. Took a reading 2 hours later & it was 19.3
Left a message for the nurse to give me a call

 

[Davein]

So my waking reading was 12.9. Took my 80mgs Gliclazide, 12u Lantus, 500mg metformin then ate 40g of all bran with 150ml skimmed milk & a black coffee with no sugar or sweetener. Took a reading 2 hours later & it was 19.3
Left a message for the nurse to give me a call

Your results continue to show that you need insulin therapy but at least you ate something. Please don't wait too long for your phone to ring.

 

[Northerner]

I agree with @Davein, Hope you get a call back soon. The rise in your levels after breakfast is consistent with needing a fast-acting insulin to 'cover' food. The Lantus is what they call a 'basal' insulin. Throughout the day and night your liver releases small quantities of glucose into the blood in order to supply you with energy when you are not eating - it needs to do this so that your heart, brain, lungs, digestive system etc. can keep working! 🙂 The Lantus is intended to 'cover' this background glucose i.e. it is needed by the body to allow you to make use of that glucose for energy. With a fast-acting insulin (e.g. novorapid) you calculate the dose required according to how many grams of carbs are in your meals 🙂