Newly diagnosed and super confused

[Nozza1234]

recently diagnosed following a trip to a&e with blood sugars of 20mmol and really thirsty, they said i had to wait 6 weeks for a blood test to determine if type1 or 2, given insulin4x daily 4fast acting before each meal and 8 slow releasing before bed. i completely changed my diet ate less carbs and no sweets/choc snacking ect. my blood sugars were all over the place going quite high the first 2 weeks but insulin did its job and never went over 14mmol.
this week they have really stabled out always staying between 5-7 only rising to 9/10 after food and back down. the last two days have been in a constant state of trying to keep above 4, after every meal im having to have juice and sweets constantly through the day. it even went to 2.9mmol at one point. i spoke to the diabetic nurse who said to lower insulin dose slightly but its not made a difference. is there a reason i started straight on insulin? should i be eating more carbs with food again to stop it from dropping. im constantly worried and confused about it all. i hope you lovely lot can help.

 

[EllieM]

is there a reason i started straight on insulin?

I am not a doctor but I imagine it could be because of this

they said i had to wait 6 weeks for a blood test to determine if type1 or 2,

If you aren't making any of your own insulin you can die quite quickly of DKA, which is a medical emergency (dial 999 or go straight to A&E)

Diabetic ketoacidosis

Find out about diabetic ketoacidosis (DKA), including what the symptoms are, when to get medical help and how to prevent it.

www.nhs.uk

I don't suppose they told you what your ketone levels were on admission? (That might provide some insight as to whether you are T1 or T2, though I stress that it is insight only).

Have they given you any ketones testing strips so you can monitor for DKA?

T1s can have a honeymoon periods when they are first diagnosed and given insulin, where their pancreases recover a bit, and some need little or no insulin for a while, so reduced insulin needs don't tell you a lot unfortunately.

The Honeymoon Phase amongst people with type 1 diabetes refers to the period of time shortly following diabetes diagnosis when the pancreas is still able to produce a significant enough amount of insulin to reduce insulin needs and aid blood glucose

The Honeymoon Phase amongst people with type 1 diabetes refers to the period of time shortly following diabetes diagnosis when the pancreas is still able to produce a significant enough amount of insulin to reduce insulin needs and aid blood glucose control.

www.diabetes.co.uk

Anyway, while giving you insulin may or may not be the best long term treatment (T2s tend to produce too much insulin so it's often better for them to try a dietary or at least non-insulin approach first, many of the folk here go low carb), the danger is that if you are T1 and need insulin you might be dead without it before those 6 weeks are up.

But hypos are dangerous too (though easily treated). Personally, in your position I'd be taking advice from my DN on how to adjust the insulin down to reduce the hypos. (I stress this isn't medical advice but what I do, as a T1 who is completely dependent on injected insulin, when I get too many hypos.)

Edited to add, I forgot to say welcome to the DCUK forums.

 

[Nozza1234]

Thank you. That’s all so helpful. Came back no keystones but not been checked since that night in a&e. Trying to catch low sugars early not leading to another hypo. I just feel like the last 2 days I’m trying to just keep from having a hypo constantly even the hours following a balanced meal I’m having to have some sweets as dropping to 4mmol.
Appreciate you and all the helpful threads on here!

 

[Resurgam]

Thank you. That’s all so helpful. Came back no keystones but not been checked since that night in a&e. Trying to catch low sugars early not leading to another hypo. I just feel like the last 2 days I’m trying to just keep from having a hypo constantly even the hours following a balanced meal I’m having to have some sweets as dropping to 4mmol.
Appreciate you and all the helpful threads on here!

You really need to talk to someone who can give you proper guidance - to be constantly going low is not good at all.
Please insist on consultation before the weekend, don't put yourself in danger.

 

[T1Steve]

I'm one year in from being diagnosed type 1, so hope this helps;

I've had an abnormal first year (according to my Diabetes nurse & consultant); I'm in the mother of all honeymoon periods, and am currently taking NO basal, and only 1 unit of Fast acting per 25g carbs on bigger meals. If i'm doing any form of exercise after a large meal, I don't take any fast acting either. (Time in range 94%, rarely, if ever above 12mmol). HBA1C 2 months ago was 45mmol.

The reason for telling you that is I was suffering constant Hypos similar to you, and ended up having a seizure because of it. I had been telling the specialists about it, but they didn't know how to help. I suggested stopping basal, and almost stopping bolus.

I am NOT telling you to stop taking insulin!

I AM telling you to talk to your Diabetes nurse/Consultant/GP. Your reaction sounds very similar to mine, and it's at the unusual end of the scale so you may have to be proactive if you think that you are taking too much insulin.

Eating less carbs isn't really a 'thing' if you're on a basal/bolus. In time you'll learn (or be taught) to change your doses based on the number of carbs you eat. In the mean time, eat carbs. And don't worry if you go over 10mmol for a while - so long as you're not constantly high.

Good luck.

 

[Juicyj]

Hi @Nozza1234

As Ellie has said the reason your now experiencing many hypos is that you are in the honeymoon phase, this happens as the once highly stressed pancreas experiences a period of revival after taking insulin, it's confusing as can lead you to believe the diagnosis was incorrect and I experienced the same questioning my diagnosis and thinking I could reverse it, that won't happen sadly, over time your insulin need will increase as this wears off.

You need to keep in close contact with your team and reduce your insulin to avoid going low, always take glucose with you at all times so next to the bed and in your pocket/side pocket of the car etc. In regards to treating a hypo always use fast acting glucose and follow up with 10g of carbs, test every 10 minutes and retreat if necessary until levels are back in range. Things to be wary of are exercise as this can cause levels to drop, even shopping can drop me, anything that involves alot of brain power, your brain is the biggest organ using glucose so it's affected first and cognitive ability diminishes quickly because of this hence why using quick acting glucose is the best way to treat it, also trust your gut if you're feeling shaky/weird it's probably because your dropping so getting hypo treatment quick is vital.

Please shout if you need any support, it can be a while adjusting and getting used to the new diagnosis but happy to help if I can.

 

[becca59]

It’s very sad that you were not immediately given support in the first few weeks. Following hospital admission I was in clinic next morning, hitched up with a DN who rang me up every day for a fortnight changing doses as we went. Then she was available by email or phone for questions or help. I also started on carb counting from day 1.
The fact that you immediately went low carb this would not match with the doses that they put you on. Low carb is an option but not on fixed doses you cannot change. I’m not surprised you keep going low. You must get help from wherever you are going to be attached to.