New diagnosis...type 1

[Kenners]

Hi all,

I work away at sea and lost 13 kg body weight in 29 days; shortly after returning home (late April) I was diagnosed as having type 2 diabetes. HbA1c was 106 when diagnosed). Metformin 500 mg followed - one tablet twice daily and was told to eat a healthy diet. Dropped a further 5 kg body weight after returning home.

I went to see the Doctor again on Friday 19th May and was tested for ketones as I wasn't feeling any better for the Metformin. Ketones in urine were 3.5 mmol, with high glucose too, and so was sent immediately to hospital with suspected DKA and spent all day on a drip and having blood samples taken. Now being treated with Insulin as per type 1. Strange thing is that I'm over 40 so it seems quite unlucky/ unusual to get type 1 at my age!

Anyhow, basal/ bolus regime stareted and blood sugar seems to be coming down slowly but surely. Gutted though, can't work at sea for at least six months as my seafarers medical certificate is about to get revoked. If I can demonstrate six months good control I may get a new medical, but one that will be very much limited in scope. So at present it looks like I'm technically about to become incomeless thanks to diabetes.

Anyone had similar experiences, inc. working at sea? How did it pan out?

Cheers.

 

[catapillar]

It's not that unusual to be diagnosed type 1 at 40+. Type 1 is an autoimmune disease and can strike at any age.

Have you had a type 1 diagnosis confirmed with antibody testing?

I believe @GrantGam might have some experience of working ... on a boat? I'm not even going to attempt correct terminology, sorry!

 

[daisy1]

@Kenners
Hello and welcome to the Forum To help you, here is the Basic Information we give to new members and I hope you will find it useful. Ask more questions when you need to and someone will be able to help.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a free 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

Take part in Diabetes.co.uk digital education programs and improve your understanding. They're all free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.

 

[Deleted Account]

It is one of my bug bears that Type 1 is described as "typically occurs in childhood".
The National Diabetes Audit was analysed last year and they came to the conclusion that 57% of people with type 1 are diagnosed over the age of 20 which seems to debunk this myth and may result in people like @Kenners being misdiagnosed.
I was diagnosed in my 30s and it was assumed it was type 1 because I was not overweight: yet another assumption (which was correct this time but didn't have to be).

 

[Diakat]

Yep, I was 42. Luckily my gp said I was unlikely to be type 2 and sent me straight to a consultant for GAD and c-peptide.

 

[Kenners]

It's not that unusual to be diagnosed type 1 at 40+. Type 1 is an autoimmune disease and can strike at any age.

Have you had a type 1 diagnosis confirmed with antibody testing?

I believe @GrantGam might have some experience of working ... on a boat? I'm not even going to attempt correct terminology, sorry!

Waiting for the results from the hospital. The staff there are sure it is type 1...the rate of weight loss, etc. all point towards type 1. As others imply, it seems the Dr thought type 2 due to age...

 

[GrantGam]

Thanks for the tag @catapillar

Hi @Kenners, I'm a T1 and an ETO with a Scottish ferry operator. My ENG1 medical is restricted in that I can only work on near costal vessels OR on any vessel with a ship's doctor. My medical is valid for two years now as my ENG1 doctor is happy with my control.

Prior to diagnosis I was working deep sea on tankers and subsequently lost my job there. To be honest, it's the best thing that happened to me - I swapped 3 to 4 month trips for 14 day trips, and I'm entirely happier where I am now. I'm now paying income tax though, which is the only real downside...

Is there anything specific you would like to know?

 

[Kenners]

Thanks for the tag @catapillar

Hi @Kenners, I'm a T1 and an ETO with a Scottish ferry operator. My ENG1 medical is restricted in that I can only work on near costal vessels OR on any vessel with a ship's doctor. My medical is valid for two years now as my ENG1 doctor is happy with my control.

Prior to diagnosis I was working deep sea on tankers and subsequently lost my job there. To be honest, it's the best thing that happened to me - I swapped 3 to 4 month trips for 14 day trips, and I'm entirely happier where I am now. I'm now paying income tax though, which is the only real downside...

Is there anything specific you would like to know?

Thanks for the reply. I was 3/E on a PSV in the North Sea...due to join yesterday! Not yet 'lost my job', but 'off pay' - so much the same thing to all intents. Is the endorsement just for UK coastal waters or could you sail in say the Med? Also, what specific distance offshore are you restricted to?

I'm off to see the doc on friday to get my ENG1 revoked and talk about my options...

 

[GrantGam]

Thanks for the reply. I was 3/E on a PSV in the North Sea...due to join yesterday! Not yet 'lost my job', but 'off pay' - so much the same thing to all intents. Is the endorsement just for UK coastal waters or could you sail in say the Med? Also, what specific distance offshore are you restricted to?

I'm off to see the doc on friday to get my ENG1 revoked and talk about my options...

I'd imagine that you'll still be eligible to work on PSV's as the near coastal restriction is <200 miles but with a bit of common sense applied I think.

You can still work globally regarding the near coastal restriction, however what areas you can work in is down to your doctor. Their main concern is the standard of health care in the surrounding areas, so the majority of places should be sound - but some regions may be inappropriate for a T1D; parts of Africa, certain areas in the Middle/Far East, for example.

Your doctor will issue you with an ENG3 certificate (temporarily unfit) and explain the whole criteria to you. From what I remember, you have to demonstrate BG stability for a minimum period of 3 months. So this means that you cannot return to work before 3 months unfortunately.

 

[Daibell]

Hi. It's not at all unusual to be T1 during adulthood - it's just ignorant GPs who think that. The loss of weight should have been a pointer but my 'expert' diabetes GP also missed my weight loss. With Basal/Bolus you will be fine but don't go too mad with the carbs otherwise you will gain weight!

 

[Kenners]

I'd imagine that you'll still be eligible to work on PSV's as the near coastal restriction is <200 miles but with a bit of common sense applied I think.

You can still work globally regarding the near coastal restriction, however what areas you can work in is down to your doctor. Their main concern is the standard of health care in the surrounding areas, so the majority of places should be sound - but some regions may be inappropriate for a T1D; parts of Africa, certain areas in the Middle/Far East, for example.

Your doctor will issue you with an ENG3 certificate (temporarily unfit) and explain the whole criteria to you. From what I remember, you have to demonstrate BG stability for a minimum period of 3 months. So this means that you cannot return to work before 3 months unfortunately.

Three months off is is better than never sailing again! If interested I'll let you know how it goes on Friday? Thanks very much for the info; nice to get it straight from the horses mouth as it were.

 

[Kenners]

Hi. It's not at all unusual to be T1 during adulthood - it's just ignorant GPs who think that. The loss of weight should have been a pointer but my 'expert' diabetes GP also missed my weight loss. With Basal/Bolus you will be fine but don't go too mad with the carbs otherwise you will gain weight!

Was geared up for going LCHF when I thought I was type 2...sounds like it might still be worth doing. Cheers for the heads up...always goes on easier than it comes off!

 

[GrantGam]

Three months off is is better than never sailing again! If interested I'll let you know how it goes on Friday? Thanks very much for the info; nice to get it straight from the horses mouth as it were.

Exactly, the good news is that you still have options available to you

Oh, the other restriction I have (which I never mentioned because it's not applicable) is no solo lookout duties. I'm not sure if there's one for solo watchkeeping, but your doctor will know best.

Yes please do, I'd like to hear how you get on. In the meantime, try not to worry about it.

 

[Kenners]

Yep, I was 42. Luckily my gp said I was unlikely to be type 2 and sent me straight to a consultant for GAD and c-peptide.

I must admit, I'm a little surprised that they don't just do a comprehensive set of bloods at the outset. Then again it never ceases to amaze that testing 'isn't required' for type 2 either!

 

[Diakat]

I think that as tests are expensive and type 2s outnumber type 1s they take the chance unless something sparks their interest.

 

[gavin86]

Not exactly 40, but I'm 30 and was just diagnosed. Similar levels of weight loss, no ketone issue though.

I'd be interested if you think anything going on in your life may have "triggered" your diabetes. I/my specialists (yep, multiple) are currently working on the theory that an intense stress period triggered it (was in ICU for other issues.) My Blood glucose was normal for 6 days (daily blood tests), then bang.. up to 43 in 3 days. t1d. (And another autoimmune condition too).

 

[Kenners]

Not exactly 40, but I'm 30 and was just diagnosed. Similar levels of weight loss, no ketone issue though.

I'd be interested if you think anything going on in your life may have "triggered" your diabetes. I/my specialists (yep, multiple) are currently working on the theory that an intense stress period triggered it (was in ICU for other issues.) My Blood glucose was normal for 6 days (daily blood tests), then bang.. up to 43 in 3 days. t1d. (And another autoimmune condition too).

I've thought about this possibility myself; but in my case I can't really identify any one thing that stands out as a 'trigger'. However, I do have a mate who got type 1 almost immediately after being in a pretty bad car accident, so I definitely believe it can be triggered by trauma, stress, etc...

 

[Alexendar]

Not exactly 40, but I'm 30 and was just diagnosed. Similar levels of weight loss, no ketone issue though.

I'd be interested if you think anything going on in your life may have "triggered" your diabetes. I/my specialists (yep, multiple) are currently working on the theory that an intense stress period triggered it (was in ICU for other issues.) My Blood glucose was normal for 6 days (daily blood tests), then bang.. up to 43 in 3 days. t1d. (And another autoimmune condition too).

Same here, im more than sure that chronic stress triggered my diabetes...