Just diagnosed with type 1

Status
Not open for further replies.
G

Gemma.

Member
Relationship to Diabetes
Type 1
Hi everyone,
I am new to this so would like a little advice please, I have just been diagnosed with type 1 and been on insulin for a few days, I am having headaches and when I wake up my eyes are very puffy also my head feels very fuzzy I was wondering if this is normal when new to insulin?
Any advice would be greatly appreciated.
Thanks
 
Welcome @Gemma. 🙂 Those effects are more likely to be stress, the change to your blood sugar now you’re on insulin, and previous dehydration. I didn’t realise how dehydrated I was when I was diagnosed.

What’s your blood sugar? Do you have the means to test for ketones should it become too high and/or you get ill? Do you have a Libre? Is it possible you’re going low overnight? Hypos can cause headaches.

Can you tell us a little more about your diagnosis and what insulins you’re on?
 
Inka said:
Welcome @Gemma. 🙂 Those effects are more likely to be stress, the change to your blood sugar now you’re on insulin, and previous dehydration. I didn’t realise how dehydrated I was when I was diagnosed.

What’s your blood sugar? Do you have the means to test for ketones should it become too high and/or you get ill? Do you have a Libre? Is it possible you’re going low overnight? Hypos can cause headaches.

Can you tell us a little more about your diagnosis and what insulins you’re on?
Click to expand...
Hi Inka,
Thank you so much for your reply it's very helpful, my blood sugars this morning was 12.9 mmol/l. Yes I can test for ketones I tested last night which was 0.2.
I have only just been diagnosed so all I really know is that I have to take insulin 2x a day and keep record of blood sugars.
I am trying to keep eye on carbs but not sure how much I should be having so I average around 50 per meal? Any advice on this would also be great.
Thank you
 
Hi and welcome from me too.

So pleased you have found the forum as it is a gold mine of knowledge and experience that you can tap into anytime and really helped me fill in the blanks from info that had gone in one ear and out the other during my appointments. There is a huge amount to take in during the early days and the forum became the mainstay of my support and really has been a lifeline.
Can you tell us which insulin they have given you. ie. the name of it and any letters or numbers with it and how many units are you taking?

How often are you testing and are you relying on finger pricks or do you have a Libre or other CGM sensor to monitor levels?
How does that 12.9 compare to other readings you have been getting recently?

Those symptoms are not normal with insulin or diabetes but can be caused by a sudden change in your BG levels in the early days or perhaps anxiety or dehydration which can all be linked to uncontrolled diabetes.... and it takes time to get the insulin doses right to get it under better management.
 
Thank you for your reply ☺️ I am currently on Humulin M3 my current dose is 8 on the insulin pen which I take before breakfast and evening meal. I am doing the finger prick 4x a day and my readings vary from lowest at 11.9 and highest at 22.9.
I really appreciate the replies as this is all so new to me and never had to watch what I eat or even think about taking insulin.
Thank you
 
I really find it really strange that they start a Type 1 on mixed insulin and not helpful at all in my opinion as you will just get used to using this when they change you onto a different (basal/bolus) regime.

Can you tell us a bit about how you came to be diagnosed? Did you end up in hospital with DKA or have you been managed so far by your GP practice? Hopefully you will be getting a referral to a specialist diabetes clinic soon if you haven't already had an appointment there.

Basically the insulin you have now Humulin M3 is a mixture of quick acting insulin to cover the carbs in your breakfast and evening meal .... and a slow release insulin that covers the trickle of glucose from your liver, which is kind of like a back up battery which provides you with fuel (glucose) when you are not getting any from food. The liver recharges it's stores from the food you eat and then releases it when you stop eating. This is so that we don't die if we don't have food for a few days, because the liver can keep us ticking over in an emergency.
For those of us diabetics who don't produce enough insulin, we need to inject it to cover both our food and our liver release. The insulin you currently have is a sort of compromise which covers both needs with just 2 injections, but it means you need to eat at regular times and have set meal sizes (carbs wise) and you can't adjust it very much to fit your lifestyle and what you might like to eat or what your body needs. It is like buying unisex utility clothing and only having a choice of small, medium or large and being stuck with whatever size is the closest and make do.
A basal/bolus insulin regime is separate meal time (bolus) insulin and slow release (basal) insulin in 2 different pens. Then you can adjust the slow acting to cover your liver output a little more closely but more importantly, you can adjust the bolus insulin for what you want to eat or skip meals if/when you want to and you can inject some to cover lunch and any snacks you might want to eat or have a special 3 course meal occasionally which would generally be a lot more that 50g carbs that you are currently limiting yourself to. It basically allows you to tailor your doses to your lifestyle and needs and a normal diet and balance your BG levels more easily, enabling them to be managed similar to that of a non-diabetic person. It involves some mental calculation and more injections, but once you get used to injecting it becomes second nature and it is a very small price to pay for improved quality of life, dietary freedom and better managed BG levels.

Hopefully you will be moving onto a basal bolus system soon. Was that mentioned?
 
Hi,
I was having tests at GP then they sent me to a&e as my ketones were high. I have had loads of tests and been to diabetes clinic (Thursday) where they say I have type 1 and sent me away with insulin.
I have another appointment at the end of November so I'm guessing more will be mentioned then as I have to send in my blood glucose log next week for the nurses to look at?
Nothing was mentioned about how many carbs I should eat per meal but I just try to stick to 50 as that's what I have researched but not sure if that is correct.
Thank you
 
Welcome to the forum @Gemma.

I’m also slightly surprised you’ve been started on mixed insulin - that’s not generally considered the preferred option for T1s these days as it can be harder to adjust the doses to suit people, and it can require people to fit their meals and timings around their insulin, rather than the other way around

Do you have contact details for a DSN at the hospital? The end of November seems a long time to wait. Do mention the puffy eyes you’ve been experiencing, and hopefully when you switch to a more flexible insulin system you’ll feel generally better. Ultimately your clinic will help you to adjust your own doses as your insulin needs change through the year (and how to adapt for different meal sizes day-to-day), along with how to accommodate exercise, illness, and things like alcohol.
 
Thank you for your message, I am hoping that I will know more next time I see them and they may change my insulin as it does seem quite strict as to times before meals.
Yeah I have an email for the nurses so I will message them Tuesday with my log of readings so hopefully I will know more when they next contact me. I am so new to this so just doing as I'm told to be honest as I have never experienced diabetes before and I don't know anyone with it.
All the msg have been a great help. Thank you
 
Gemma. said:
Thank you for your reply ☺️ I am currently on Humulin M3 my current dose is 8 on the insulin pen which I take before breakfast and evening meal. I am doing the finger prick 4x a day and my readings vary from lowest at 11.9 and highest at 22.9.
I really appreciate the replies as this is all so new to me and never had to watch what I eat or even think about taking insulin.
Thank you
Click to expand...

Like @rebrascora and @everydayupsanddowns I find it weird they’ve started you on a mixed insulin. There’s nothing wrong with mixed insulin, but it’s an old-fashioned insulin regime which requires far more regimentation than the usual basal/bolus regime. Type 1s are recommended to be started on a basal/bolus regime and such a regime will give you a lot more flexibility and make it easier to control your blood sugar.

Briefly, your mixed insulin contains both fast (bolus/meal) insulin and slow (basal/background) insulin in one liquid in set percentages. Imagine it. You want to increase your basal/slow insulin, but you can’t do that without also increasing the fast part of the mixed liquid. You’ll also find your mixed insulin requires set meal times and set carb amounts. To be blunt, it’s an unhelpful regime and you’d find things a lot simpler on a proper basal/bolus regime.

A basal/bolus regime means more injections (which gives more flexibility and, as you’ll soon find, the injections are the least difficult part of Type 1 anyway) but a far more normal life and easier control. You’d take a separate basal/slow insulin once or twice a day and then a bolus/fast insulin before your meals. As you can see, that allows you to increase your basal without affecting your bolus insulin. It will also allow you to take less or more bolus/meal insulin according to the carbs in your meal. It will mean you can delay or miss meals with no hassle. It will mean you can eat normally (within reason).

Sorry to go on about it, but I want to explain the way both regimes work so you have a basic idea. Mixed insulin is mainly used for Type 2s. The basal/bolus regime (two separate insulin as described above) is what is officially recommended for Type 1s.

Your morning blood sugar is quite high and might have been higher overnight. The blood sugar of 22 is much too high and I urge you to highlight that to your nurse and insist on a proper insulin regime. This high sugar is probably why you’re feeling a bit rough.
 
Last edited:
I realised that I didn’t answer your question about carbs per meal. Once you get the correct insulin regime (basal/bolus), you can eat normally as you learn how to count the carbs in your meal and calculate your bolus insulin dose.

Don’t let them just increase your Humulin M3 dose. Ask for proper Type 1 insulins and more support.
 
@Gemma. Here’s the actual guidance so you feel more confident in asking about a change of regime. Notice that it expressly says not to offer mixed insulin:

Insulin regimens​

1.7.1 Offer multiple daily injection basal–bolus insulin regimens as the insulin injection regimen of choice for all adults with type 1 diabetes. Provide guidance on using this regimen. [2015]
1.7.2 Do not offer adults newly diagnosed with type 1 diabetes non‑basal–bolus insulin regimens (that is, twice‑daily mixed, basal only or bolus only). [2015]

Recommendations | Type 1 diabetes in adults: diagnosis and management | Guidance | NICE

www.nice.org.uk www.nice.org.uk
 
I agree with the other comments about the mixed insulin you have been prescribed- surprised your clinic is not following the advice from NICE which is at least 8 years old.

As for how much carb to eat per meal, this is best illustrated by the usual course for people with Type 1 - DAFNE which stands for Dose Adjustment For Normal Eating. A healthy diet for someone with Type 1 is the same as a healthy diet for someone without diabetes. The reason we count carbs is to calculate our insulin dose on the basal/bolus regime described above.

Sorry, I realise we are all focusing on your old fashioned insulin regime and I have not welcomed you to the friendly forum. Ask any questions you want. We may veer off course with our discussions but we will provide our opinions based on our experience.
 
Yes, sorry, I don't have any real advice/experience regarding the amount of carbs you should be having for that dose of mixed insulin you have been given because I went straight onto a basal/bolus regime 4.5 years ago when I was diagnosed. You clearly need more insulin when your levels are that high, but you need to contact your DSN for advice on increasing it or ask to be moved onto a basal bolus system. I could potentially understand a nurse at a GP practice prescribing you mixed insulin as a stop gap until you got a clinic appointment, but I am quite flabberghasted that a specialist diabetes clinic would prescribe it unless perhaps they were unsure of your diabetes Type, but many Type 2s get a basal/bolus regime these days too and rightly so. I would also expect them to be contacting you every few days or at least weekly in these very early days with insulin to be slowly and steadily adjusting your doses. So definitely chase them up tomorrow for advice and support and insulin dose adjustment and let them know that you are feeling rough since you started taking insulin and describe your symptoms to them and let them know how many carbs you are eating and tell them that you would like to eat more if that is the case.... they should be adjusting your doses for what you would like to eat, not feeling restricted.
Hope you feel better soon and get the insulin situation sorted, even if it is just an increase in dose for now until you are back at the clinic next month. I understand that it is daunting challenging health care officials about your treatment and I was pushed by forum members to contact my GP and ask about being started on insulin. I handled it badly and I am sure doctors hate to hear that a patient has been told by keyboard warriors that they need a particular medication and he was not impressed, but 2 days later I got a call from the nurse to come in as they were going to start me on insulin. The people here were absolutely right and have an incredible depth of knowledge because they/we live with diabetes every day, every meal so we know all the little idiosyncrasies and tell tale signs and protocols. I personally would trust the info I get here from some very experienced members over most health care professionals, but it is tough when that means you have to challenge how those health care professionals treat you. Quoting the NICE guidelines is helpful as they are clearly not following protocol in your case for some reason. Hopefully they will explain why or better still resolve the situation by changing your insulin. Good luck. The situation with the NHS these days is such that you have to learn as much as you can yourself and be prepared to politely push for what you need.
 
Status
Not open for further replies.
Back
Top