Husband recently diagnosed T1DM

[CTS]

Hi all,

Just wanted to come on here and say this looks like an amazing place with some fab people/advice going around. I wonder if anyone can advise.

My husband (32) has recently been diagnosed with type 1 dm. Completely out of the blue, never ill a day before, apart from a few weeks of symptoms. I’m not going to lie it has hit us really hard (as I’ve read a lot on here, glad to see it’s not just us). We have 2 young kids, 1 more on the way, who have both been vomiting in the week since diagnosis so that doesn’t help! I feel he is getting over the diagnosis but I am stuck in a rut and just can’t.

I am just looking for some advice. In people’s experience how quickly does blood glucose get into target range (for the most part)? He has been injecting - long acting twice daily, rapid acting with meals - for around 1 week now and I think I’m expecting too much too soon. I am (and he is too) so frustrated with readings of 14 still at times. We are doing carb counting and obviously not getting the hang of it, I think he is underestimating as for the most part as he is well above 7.5 for most of the day. How long do people usually take before they are mostly in target range?

It’s odd too because one night he had a big pasta dish, 4units rapid acting then before bed bm was 4.9..:then tonight similar meal (with garlic bread), 7 units, same time but before bed was 14! Not much else different. I am stressing enormously, I worry this is damaging him being high for most of the day. This whole week has been awful for us both, I just keep thinking about the future and worry about everything, especially with the little ones. We always ate healthy, both exercise lots (tho he isn’t at the moment until everything is more stable), I am medical too so I know the things to look out for/test for....maybe that makes it worse...feel I am probably overthinking things but this is all just so difficult. And the best people to ask are people who are personally experiencing it so I really would appreciate any advice/experience.
Many thanks in advance

 

[CTS]

Sorry I should say I’m aware my post must seem so selfish considering he is the one going through this. I am honestly acutely aware of this and am being as supportive as I can but I feel like breaking down into tears a lot of the time (possibly pregnancy hormones!) and family members really can only support so much. I need to stay strong for him.

 

[Diakat]

Hi @CTS
Welcome to the forum.

It's natural to worry about your husband and the future and his health so no,not selfish.

Right then, numbers. He's been diagnosed a very short time it will take time for things to settle down. Bringing numbers down slowly can be better for the body.

Pasta is notorious for having an odd effect where highs and lows follow eating it seems to absorb unevenly. Plus your husband may still be in honeymoon phase where his pancreas still producea sporadic insulin.

With T1 it can be hard to stay in range for all sorts of reasons. It sounds like you are doing well. Especially with sick kids

Hug.

 

[CTS]

Thank you @Diakat that is all reassuring to know I’m presuming with the honeymoon phase (I hadn’t actually considered this!) that might be why he is low sometimes at certain points in the day, I guess it is hormone driven...

I’m so relieved to hear this can be quite normal that things take a while to ‘settle’ (I’m aware it’s a dynamic process and glucose will never really always be ‘normal’....or will they for the most part??)

 

[Diakat]

Normal - hmmm. You need to consider that by injecting insulin we are trying tonic a natural process. So
a) normal has quite a wide variation
b) we can get it wrong sometimes

So yes, there will come a point where his levels can be mostly normal if he takes care and learns about insulin/food/exertion interactions. But there will always be the odd moment of, "oh no, where did that high/low" come from

New technology such as the libre is really helping people improve numbers. And remember life is so much more than a glucose value.

 

[enzina]

Hi CTS,
I think you're doing brilliant, i wish i had a partner like you on my side! Excellent advise from Diakat above.

I myself have LADa diabetes, in my case a very slow onset of T1 and only started Novorapid in April. I've been through all the emotions you describe from feeling totally unable to manage this illness to suicidal thoughts but slowly i have learned to stay on top of the diabetes and finally lowered the glucose levels. It's so much trial and error and my pancreas seems to work a bit at times as well.
You came to right place to seek advise, this site has helped me more then everything or everyone else. It took me so long to see the light at the end of the tunnel but i'm hopeful now.

Wishing you and your family the very best and loads of strenght.

 

[Bluey1]

Hi CTS,
Get your husband to join in here as well your right it is a great site. I got D as an adult. They will slowly bring your husband's BGL down. Depending on how out of control things were and for how long, he may have blurry vision for a number of days, then there is Mr Hypo lurking. I was terrified of having a hypo. Now it's rare if I don't have a reasonably impressive one at least once a month and it's no big deal, unless you have a really really bad one.

He will do just fine, all he needs is time and support. The first 3 months is a whirlwind all this stuff you have to learn and master, but it does get really easy overtime. We all misbehave at times, way too early for you husband to join in. It took me 3 months to get things under control and about 12 months, before I was the master.
Once he has mastered D, he can go on and do almost anything wants to.

 

[KK123]

Sorry I should say I’m aware my post must seem so selfish considering he is the one going through this. I am honestly acutely aware of this and am being as supportive as I can but I feel like breaking down into tears a lot of the time (possibly pregnancy hormones!) and family members really can only support so much. I need to stay strong for him.

CTS, first I would like to say that your husband is very lucky to have you on his side and trying to be understanding and supportive. There are just a couple of points I would make, one of which is when you say you feel he is 'getting over the diagnosis'. I would hazard a guess that he is nowhere near getting over it if he was only told a week ago. He has just been effectively told that he now needs to adopt a brutal regime every day of his life, one that can seem at times like it has taken over. The diagnosis of type 1 diabetes is a life changing event and I am sure you are both devastated but he will be nowhere near to accepting it I reckon.

The instinct initially (for him and you) is to strive to get your glucose levels in the so called 'normal' range and immediately because then you think everything else will go back to some form of normality, ie eat pasta, have a jab, sugars perfect, life goes on pretty much as it ever did.

Eventually (and it can take months or years or never for some), your husband will have a routine and a form of normality, that is not to say that he will always be in control of this condition but he WILL know what works for him (some or most of the time) and he WILL start to do it all with increasing confidence. My point is that these things take an awful lot of time and effort and if you think a week or two should start showing results, you will be constantly upset, disappointed and frustrated. He has only just begun.

I would urge you to take things very slowly, he will have so much to deal with at this point including you, two children and then a new baby. He will be wondering if he can be trusted to take care of them, especially when his glucose levels start to drop and hypo's come in to the game, he will have to think twice before he can drive anywhere and test his glucose levels (has he informed DVLA yet)? You mention that he is never ill so that too will frustrate him and he might even feel guilty about it all (he should not).

I know this sounds quite negative and this is only my own experience, others will give theirs, but I am trying to be realistic. The thing with type 1 is that it comes on usually in a matter of weeks, you pop off to see the Dr and then wham!!!!!

You sound like such a lovely person and by heck you have your hands full. Stay with it as I'm sure you will, please don't rush everything, he is likely to be in the 'honeymoon' period too, that means his levels may be up and down like a yo yo as his body may still be producing insulin. One of the biggest hurdles for me was getting over the 'how dare this happen to me, I am NEVER ill' and then feeling like I AM ill because of all the medication, the repeat prescriptions, the constant testing, the appointments etc

He will be trying to get to grips with it all but he will also be devastated inside and putting on a brave face for you and the family. I wish you both all the best and please feel free to ask anything you want, I was diagnosed 15 months ago.

xx

 

[slip]

Welcome, and get your husband to sign up.

It's a marathon not a sprint! And as you've got little'uns 'don't run before you can walk' is probably very apt!

What everyone above says is relevant and on point, I like KK123's post - the man is probably in total turmoil inside at the mo. Tell him from me - what ever he's thinking, it's not as bad as that!

Get him to keep a diary of food (and carbs), BG tests, dosages, exercise etc it will help him and his clinic better understand his diabetes and what he needs to do.

Pasta......................even a seasoned T1D can have 'issues' with it, but don't avoid it if it's something you usual have.

 

[CTS]

You have all honestly given me so much reassurance, thank you from the bottom of my heart. (Sorry to sound sappy)

Ok, as per everyone’s advice we will continue with the carb counting, monitoring, documenting everything and not expect too much too soon. Focusing on the now and not worrying about the future too much seems to be the key. I love the ‘there’s more to life than glucose measurements’ type phrase, this is fantastic.

You’re entirely right, he’s no where near over the diagnosis, I still see it when he gets a minute or two to sit down, or when he has to inject himself, I see the cogs turning and the reality dawning. I think it’s perhaps that he is not getting upset anymore maybe that’s what has changed, and this is only a good thing. Whereas I’m just an emotional wreck!! Your points on this are all completely correct, nail on the head.

I will definitely make sure he reads these comments himself. I don’t have the first hand experience obviously but I know it’s always nice to know you aren’t alone in something. You guys have all been through such struggles which I’m sorry to hear of, thank you for sharing and advising x


(Ps yes forms off to dvla today! As a priority)

 

[CTS]

Pps very gutted about the pasta debacle! Love a good bowl of pasta .... maybe that should be our medium term goal...!!

 

[kitedoc]

Hi @CTS and your hubby.
Reaching out for help and support is a great start to dealing with this bombshell of a diagnosis.
Managing type 1 diabetes is like raising children: there are plenty of manuals and advice but one still has to work out what works best for you both. The following has been gleaned from 51 years experience on insulin (and all the mistakes made in that time)!!
It is not proffered as health professional advice or opinion. You may wish to revisit this thread over time and re-read everyone's posts to refresh memory or pick up on something that you had to leave whilst sorting out the deluge of other information !
1) do not let health professionals or well-meaning friends relate doom and gloom stories about diabetes. or use them to make a point about doing better. Some of this site are doing very well after being on insulin over 40, 50 or 60 + years on insulin. And these people started with none of the modern developments in treatment such as glucose meters (the finger prick machines)!, insulin pens, fancy insulins or insulin pumps.
2) Do, however, ensure that your hubby cultivates good communication and relations with his health team. They are his advisors and prescribers of treatment and management. They are there to also help both of you with developing plans for particular situations such as what to do on sick days etc - this happens over time as you both learn and grapple with this condition.
3) we all like to do the very best we can with your blood sugar levels (BSLs) and know that sometimes we win, sometimes not (or not as well as we would like). Stress, weather, season can affect BSLs and are not always in our control (even King Canute could not stop the tide)!
4) stress is the enemy as it causes release of hormones that make insulin less effective and thus tend to push BSLs up. From your initial post it sounds like you both have lots of your plate - sometimes that is enough to affect BSLs from one day to the next (or from one pasta dish to the next)! Pasta often causes a later peak in BSL than other foods e.g. at 3 rather than 2 hours.
Also you are both likely to be in a stage of grief which may show up as anger, denial, hope for a miracle etc.
5) developing a sense of self humour and humour in general, having interests and hobbies/pastimes and use of exercise are all stress relievers. One family used to bet on what their mum's BSL would be before the evening meal, the loser did the washing up. I used to call having an injection of insulin, "javelin practice". Here on site we sometimes joke about good and bad diabetes gremlins. I must admit however that painting garden gnomes as a hobby is not my cup of tea. See my avatar for mine.! Just the thing for doing with young children !!
5) as mind boggling as learning about diabetes is, one important subject is hypoglycaemia (hypo - low, glycaemia - glucose in the blood) or 'hypo' for short. This site has info on hypos on the Home page - under type 1 Diabetes. Web are taught that the list of symptoms of a hypo, 'a low', or 'low sugar' are important to recognise and treat. Over time you will come to recognise the early signs which apply particularly to your husband and his behaviour. (and your children will also pick up on the early signs as time goes by, as can the family pet)!! And you will both learn to discuss causes and possible remedies with your health team.
Having glucose tablets, glucose jelly beans or whatever, available at home and to carry when going out is important. Trying long term to avoid sweet, sugary drinks and the like for treatment of hypos is preferable to having a heavy future dental bill!
Testing BSLs before driving to ensure the BSL is adequate will be an important for your husband - as this be will now be part of the rules for his driver's license.
I mention these things as things to absorb when you are both ready to do so, just that good habits now can prevent problems in future!!
One trick my wife employs is only buying black glucose jelly beans for me to carry. If I have a hypo, the use of jelly beans gives me the give-away black tongue !!
We know that alcohol in the blood stream can interfere with the body's response to hypos so I was advised it was best avoided at an early stage. (usually the liver releases some of its stored glucose to try to raise the BSL - in response to 2 hormones called glucagon and adrenaline because our brain runs on glucose and gets tetchy if deprived.
The pallour, sweating, tremors of early hypo is due to adrenaline.)
If that release from the liver is blocked it may take longer for the body (and brain) to recover as it takes time for jelly beans etc to be absorbed, and if vomiting occurs then ambulance services will be needed, pronto. I do not mean to alarm you both, but forearmed is forewarned.
I think I have said enough for now! Keep posting and asking questions. No matter how silly the question may appear, just know that we have all asked those type of questions at some stage.
This site is a marvellous source of information, experience, humour and support.
To finish: a description of a cartoon: A guy is sitting in an office being interviewed for a manger position. The sign on the door reads: "Training Agency". " Interviewer: "Mr Jones, why do you think you are the best person for this position"?
Mr Jones: "Well, I believe you learn from your mistakes, and I make enough mistakes to train and manage everyone here"!!
Our experience comes in part from learning from our mistakes, over and over !!!
Best Wishes to you, your hubby, children and child to be !!

 

[KK123]

Pps very gutted about the pasta debacle! Love a good bowl of pasta .... maybe that should be our medium term goal...!!

CTS, I like pasta too. When I have it now I have a tablespoon of the actual pasta and then heap it with the meat sauce. A tablespoon probably seems a miniscule amount (and it looks like it when cooked) but somehow, when it's on the plate with the sauce it actually seems like a massive bowlful! It means I can use less insulin to cover it and it doesn't spike my levels massively. x

 

[kitedoc]

CTS, I like pasta too. When I have it now I have a tablespoon of the actual pasta and then heap it with the meat sauce. A tablespoon probably seems a miniscule amount (and it looks like it when cooked) but somehow, when it's on the plate with the sauce it actually seems like a massive bowlful! It means I can use less insulin to cover it and it doesn't spike my levels massively. x

Also the fat in the meat sauce slows to the exit time from stomach to small intestine and thus slows the absorption time and blood sugar rise. When you are ready there are some things about diet like Glycaemic Index and Glucose load which may be of help, but for now it may be best to stick to given amounts of foods of foods as per dietitian and see what amounts of insulin are needed to control the BSLs. The meat sauce trick is a neat way to have some control though !!

 

[KK123]

Also the fat in the meat sauce slows to the exit time from stomach to small intestine and thus slows the absorption time and blood sugar rise. When you are ready there are some things about diet like Glycaemic Index and Glucose load which may be of help, but for now it may be best to stick to given amounts of foods of foods as per dietitian and see what amounts of insulin are needed to control the BSLs. The meat sauce trick is a neat way to have some control though !!

I absolutely agree with kitedoc, I actually follow a fairly low fat diet, I use 5% fat mince and then I fry it and pat it dry until it resembles cardboard (!), then I chuck it in the pot with the veg and sauce etc. There are so many things to think about eh!!!

 

[kitedoc]

I absolutely agree with kitedoc, I actually follow a fairly low fat diet, I use 5% fat mince and then I fry it and pat it dry until it resembles cardboard (!), then I chuck it in the pot with the veg and sauce etc. There are so many things to think about eh!!!

Adding sage powder instead of salt gives you a salty tasting cardboard. Nothing like enhancing the quality of cardboard !!!

 

[KK123]

Adding sage powder instead of salt gives you a salty tasting cardboard. Nothing like enhancing the quality of cardboard !!!

haha, I will try that!!! Once it is smothered in the rest of the ingredients it is yum. I throw the entire pot in the oven for 2 plus hours at a low temperature and the mincemeat goes very tender. (Don't want to put CTS's hubbie off). I find it amazing how scientific and technical it all is, when I was first diagnosed I felt like I needed a biology degree!!!

 

[kitedoc]

haha, I will try that!!! Once it is smothered in the rest of the ingredients it is yum. I throw the entire pot in the oven for 2 plus hours at a low temperature and the mincemeat goes very tender. (Don't want to put CTS's hubbie off). I find it amazing how scientific and technical it all is, when I was first diagnosed I felt like I needed a biology degree!!!

Add oil and sage plus other spices, fry up til near transparent, add in mince etc. YUM.

 

[SamJB]

You have all honestly given me so much reassurance, thank you from the bottom of my heart. (Sorry to sound sappy)

Ok, as per everyone’s advice we will continue with the carb counting, monitoring, documenting everything and not expect too much too soon. Focusing on the now and not worrying about the future too much seems to be the key. I love the ‘there’s more to life than glucose measurements’ type phrase, this is fantastic.

You’re entirely right, he’s no where near over the diagnosis, I still see it when he gets a minute or two to sit down, or when he has to inject himself, I see the cogs turning and the reality dawning. I think it’s perhaps that he is not getting upset anymore maybe that’s what has changed, and this is only a good thing. Whereas I’m just an emotional wreck!! Your points on this are all completely correct, nail on the head.

I will definitely make sure he reads these comments himself. I don’t have the first hand experience obviously but I know it’s always nice to know you aren’t alone in something. You guys have all been through such struggles which I’m sorry to hear of, thank you for sharing and advising x


(Ps yes forms off to dvla today! As a priority)

One bit of advice I wish I was given is that carb counting becomes less accurate the more carbs you eat. Nutritional info on packets has a precision of 20%, the amount of injected insulin entering the blood stream and becoming active also has a precision of around 20%.

Say you're having a meal of 100g carbs and you're on a 1:10 ratio (1 unit of insulin for 10g carbs) so you inject 10u insulin. Because of the errors, the meal you're having could have 120g carbs and the insulin entering the bloody stream could be 8 units. This means that you've got 50g carbs being unaccounted for; 10g carbs will push BGs up by around 3mmol/l, so the 50g carbs will push it up by 15mmol/l. This is almost certainly why the same meal gave different readings.

Loads of us on here low carb, i.e. don't eat starchy carbs including rice, pasta, cereals, bread, potatoes etc for this very reason. It' makes control easy. I'm not saying your husband should low carb, but definitely limit the amount of carbs otherwise you'll be encountering these unexplained highs (and lows) on a daily basis.

 

[slip]

Nutritional info on packets has a precision of 20%, the amount of injected insulin entering the blood stream and becoming active also has a precision of around 20%.

Do you have any references to back this up? Especially with insulin dosage - there's also insulin strength quality but lets leave that for another day! If what you say, and given that Blood glucose meters have a +/-15% tolerance as well is true no wonder most T1Ds find it hard to have very good control.