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Bearsy

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Type 1.5 LADA
Hi everyone,
Have just been diagnosed with type 1.5 and would appreciate any help/info and or a chat with any others with the same type.
Finding it a bit overwhelming atm and currently have no info on treatment from doc's (diagnosis was Friday) and am travelling on Wednesday!!!!
 
Hi and welcome.

Would you like to tell us a bit about how you came to be diagnosed with LADA? Had you previously been assumed to be Type 2 or is this your first diagnosis of diabetes?
Have you been given any medication? It sounds like you haven't which is worrying! Do you have an appointment before you travel and if not where are you travelling to and for how long?

Do you know the result of your HbA1c test? This is the blood test used to diagnose diabetes and will generally be a number in excess of 47 if you have a formal diabetes diagnosis but can be into 3 figures if things have gone badly amiss. If your HbA1c is very high and you have not been started on medication, then I would strongly advise you not to travel abroad or to ensure that your insurance company are aware of your diagnosis, because things could take a turn for the worse quite quickly.

Knowing more about how your diagnosis happened and your HbA1c result, will give us a better idea of where things stand and enable us o give you better advice, so the more info you can give us the better.
I am particularly curious as to how the GP diagnosed LADA without specific, more complex tests than the HbA1c which usually take several weeks to come back. What information were you given? Did you mention to the doctor that you were going away very soon?
 
rebrascora said:
Hi and welcome.

Would you like to tell us a bit about how you came to be diagnosed with LADA? Had you previously been assumed to be Type 2 or is this your first diagnosis of diabetes?
Have you been given any medication? It sounds like you haven't which is worrying! Do you have an appointment before you travel and if not where are you travelling to and for how long?

Do you know the result of your HbA1c test? This is the blood test used to diagnose diabetes and will generally be a number in excess of 47 if you have a formal diabetes diagnosis but can be into 3 figures if things have gone badly amiss. If your HbA1c is very high and you have not been started on medication, then I would strongly advise you not to travel abroad or to ensure that your insurance company are aware of your diagnosis, because things could take a turn for the worse quite quickly.

Knowing more about how your diagnosis happened and your HbA1c result, will give us a better idea of where things stand and enable us o give you better advice, so the more info you can give us the better.
I am particularly curious as to how the GP diagnosed LADA without specific, more complex tests than the HbA1c which usually take several weeks to come back. What information were you given? Did you mention to the doctor that you were going away very soon?
Click to expand...
Hi,
This is my first diagnosis. I was only told 3 days ago and the medical system has kicked into gear. I am waiting for advice from the consultant as to what medication I need but leaving in two days time is proving a challenge (they know I am going away). I am off to NZ for 3 weeks!
HbA1c was 124 mmol/mol last week up from 44 last August.
I have been losing weight and insatiably thirsty amongst other symptoms and do not fit in to the typical type one category in that I have never been overweight and eat a relatively good diet and am well aware of the slippery slope to type 2.
 
Well, it is great to hear that your GP is switched on enough to recognized that you are likely a type of Type 1, rather than assuming you are Type 2 as sadly is often the case even with slim fit people.
With levels that high you really need to have insulin prescribed before you go and personally I would cancel the trip as starting on insulin, is a tricky time and you need lots of support. Hopefully you will have internet connection wherever you are in New Zealand so that we can support you from the forum if nothing else.
I would strongly advise you to inform your travel insurance because at this early stage, there is an increased risk of needing emergency treatment and you don't want to be left high and dry with a huge medical bill.
If you can't get insulin started before you go, I think that will put you at significant risk and I would cancel the trip. I know it must be an incredibly stressful situation to be in but uncontrolled diabetes is very dangerous.... potentially life threatening and that is where you are at at the moment. There is a risk that you could go into a diabetic coma whilst travelling let alone when you get there. The inactivity of sitting on a plane for so long and of course the stress could all push your risk higher and without insulin to bring it down you could easily develop Diabetic KetoAcidosis (DKA) which essentially makes your blood toxic and causes organ failure if not treated pronto.

Those are just my thoughts and they are the worst case scenario but you need to be aware of the risks. Equally, using insulin in the early days and weeks without suitable support is also dangerous and you could have a major hypo (low BG) which can also put you into a coma in the worst case scenario and damage your brain. Diabetes which needs insulin therapy, regardless of Type is a fine balancing act and it takes time to learn how to achieve that balance.

I am assuming you intend to do lots of outdoor activities whilst you are there and again that will impact your levels particularly if you are new to insulin. A hypo on a mountain side could be very dangerous and learning how to manage exercise with insulin is like advanced maths. You have to learn the basics first and then increase your knowledge once you get more experience.

I hate to paint such a grim picture but you are taking a huge risk going now and will almost certainly enjoy the trip more if it is postponed a year. I appreciate that may not be possible.

I will be interested to hear what others say but diabetes and insulin take time (months if not years) to get to grips with and 2 days is just too short, especially when you haven't even started on insulin yet.
 
Welcome and just to say that I agree with everything that Barbara has already said.
I was surprised to hear that you have been given a LADA diagnosis as (in Scotland at the moment) only T1 and T2 are officially recognised.
Speaking personally it was in April 1986 (at age of 38) that I received diagnosis of Diabetes Meletus Type 2. The consultant of the day was not certain on whether to classify me as T1 or T2 but plumped for T2!
This was treated by a progression through oral (various drug additions) which continued through an 18 months period assignment located in Australia until 1990, then London based again steady deterioration of my diabetes resulting in insulin treatment in 1995 which evolved to a Basal/Bolus usually about 4 times a day injection treatment routine in 1996. Then retirement from paid employment leading to return to home in Fife in March 2018. Diabetes personal management has been much improved over time through the technical advance of Blood Glucose management systems from Urine testing when first diagnosed to finger pricking blood sampling devices c.1994, to availability of “Flash” sensor systems (Libre2) in 2016, to the current “Dexcom1” Continuous Glucose Management (CGM) system that I continue to use now. CGM allows and guides me to inject insulin as required to try to keep blood glucose levels within an acceptable target range as may be advised by clinicians. (This may involve 4 - 6 or so injections in a day but is a small price to pay for better diabetes management and general health outlook.)
It was only on return to Fife that a new consultant suggested that I was probably in fact LADA or type 1.5 (it certainly wasn't a diagnosis option in 1986). I only give this as a thumb nail history example of agreeing with Barbara 's previous reply that learning how to manage insulin and stabilising your condition is not a short term exercise. If you have a confirmed diagnosis any travel insurance could be invalidated if not declared to the insurer so NZ trip may not be your best option. Your decision of course!
You say "HbA1c was 124 mmol/mol last week up from 44 last August": for rough context purpose I inject on what's called a Basal/Bolus regime meaning (in my specific case only) 50 units of basal slow acting insulin each night (basal) and up to 6 injections through each day (could be up to a total of 100 units fast acting insulin of several "bolus" injections) mainly prior to meals with up to 50 units and correction doses of a few units when blood sugars are going out of my target maximum range of 10.5 mmol/l. This has allowed me to maintain my HbA1c between 48 and 53 mmol/mol with 53 being my target maximum which is allowed to be slightly higher due to my old age! To hear that you have an A1c of 124 suggests that you should be having some pretty rapid clinical intervention before you start doing some damage that could take some time to recover from. Only my personal opinion of course as I am not a clinician 🙂
Good luck and best wishes.
Roy
 
As you have been diagnosed with T1.5 you need to be on insulin and that is urgent. With your current HbA1c I would not travel until you have been sorted with insulin. At the start there is a lot of tweaking of doses for which you will need support. I agree with @rebrascora and @Twells2Yoda that you need to cancel your trip to NZ. There is no problem travelling once your insulin is sorted but you will be in grave danger of becoming very ill and possibly fatal consequences without insulin.
Sorry to be such doom mongers, but you will need to tell your insurance company of your diagnosis as you will not be covered if you do not do so, and I suspect that they will not even cover you if you chose to travel without having your insulin prescribed and started.

Diabetes once treated does not need to stop you doing anything and just takes a bit more planning and organisation So NZ can be back on the plans, but not so soon after diagnosis, especially considering your levels and symptoms, without treatment.
Let us know what happens.
 
If I can get insulin prescribed before I go I have good support whilst out there (we are visiting family) with a medical centre diabetic specialist nurse nearby.
 
Bearsy said:
If I can get insulin prescribed before I go I have good support whilst out there (we are visiting family) with a medical centre diabetic specialist nurse nearby.
Click to expand...
That sounds less worrying, but do get your insulin before you go. You will need it.
Are family familiar with T1/T1.5?
 
Gosh what a very stressful time for you @Bearsy

Do speak to your Drs about their advice for your travel plans and whether it is safe for you to travel - have you already made them aware that your trip is coming up so soon?

You might also want to call the Diabetes UK helpline (9-6 Mon-Fri) at the number at the top of the page, and chat through your situation with them.

It’s the worst possible timing for you isn’t it :(
 
Hi. How are you doing today? Hope you have managed to get insulin sorted.
 
rebrascora said:
Hi and welcome.

Would you like to tell us a bit about how you came to be diagnosed with LADA? Had you previously been assumed to be Type 2 or is this your first diagnosis of diabetes?
Have you been given any medication? It sounds like you haven't which is worrying! Do you have an appointment before you travel and if not where are you travelling to and for how long?

Do you know the result of your HbA1c test? This is the blood test used to diagnose diabetes and will generally be a number in excess of 47 if you have a formal diabetes diagnosis but can be into 3 figures if things have gone badly amiss. If your HbA1c is very high and you have not been started on medication, then I would strongly advise you not to travel abroad or to ensure that your insurance company are aware of your diagnosis, because things could take a turn for the worse quite quickly.

Knowing more about how your diagnosis happened and your HbA1c result, will give us a better idea of where things stand and enable us o give you better advice, so the more info you can give us the better.
I am particularly curious as to how the GP diagnosed LADA without specific, more complex tests than the HbA1c which usually take several weeks to come back. What information were you given? Did you mention to the doctor that you were going away very s sorry
Click to expand...
 
Thank you all for your advice and help - my GP did know right from the off about my trip and has now stated that she doesn't advise me to go - so glad the decision has been taken out of my hands as emotions were running high!
Off to the clinic on Thursday so all in hand and hopefully we can rebook in the new year.
 
Bearsy said:
Thank you all for your advice and help - my GP did know right from the off about my trip and has now stated that she doesn't advise me to go - so glad the decision has been taken out of my hands as emotions were running high!
Off to the clinic on Thursday so all in hand and hopefully we can rebook in the new year.
Click to expand...
Phew, that is a relief! There really is so much to take in when you start on insulin and changing time zones and flying long distance when your levels are so high and I imagine your Blood Pressure may well be up as well with your diabetes currently being so uncontrolled, so a very sensible decision I think and it will enable you to enjoy your trip far more when you do eventually go.

Let us know how you get on at the clinic on Thursday and which insulins they start you on.
 
That is a wise decision, I suspect you would not have been covered by your insurance anyway. If anything had happened whilst you were on the plane and they had to divert to get you medical assistance you would have been as popular as a bag of rats. Even though the cabin crew have first aid training, for a more serious medical emergency they rely on having a doctor on board. My daughter was called upon when on a flight and luckily the casualty stabilised enough for them to make it to Heathrow. But it was very stressful for their family.
I hope your appointment goes well, it would be worth going with a list of questions and if you can take somebody with you as a second pair of ears.
 
Bearsy said:
Thank you all for your advice and help - my GP did know right from the off about my trip and has now stated that she doesn't advise me to go - so glad the decision has been taken out of my hands as emotions were running high!
Off to the clinic on Thursday so all in hand and hopefully we can rebook in the new year.
Click to expand...
I'm glad they said that. We are rather of the ' you can do anything' on here, but thats not really the case in the early days.
Also, your body will now be used to high blood sugars so you may feel a bit rubbish as they start to return to normal...i took a couple of weeks sick and lay on the sofa most of the time
 
Phew!!!!
I am so pleased to read this @Bearsy. NZ will be there for another time, but you need to get to grips with things before travelling. As you say it is good that the decision was made for you. Let us know how you get on at clinic and come back with any questions that arise. Lots of experience on here to tap into.
 
Hi all,
Well one week in and day four on insulin - still all very overwhelming but impressed so far with NHS response.
Have started on Abasaglar for basal and early days but getting on ok so far.
Can I ask is there the opportunity on here to connect with people that live in your area in the same position?
 
Good to hear that you feel happy with the support you are getting and that you are getting on Ok with Abasaglar. Have they also given you a bolus insulin or just the basal?

I think on the main Diabetes UK website there is a facility to search for local Diabetes support groups but it will be a mixture of Type 1s and Type 2s, most likely more Type 2s since there are a significantly higher percentage of Type 2s than Type 1s. I think that unfortunately some of the support groups stopped during the pandemic and may have not got going again. There are occasional regional meets ups of forum members... again a mix of Type 1 and Type 2s. What area are you in?
I found the DAFNE course was great for spending time with other Type 1s and learning from each other, but this forum has been the mainstay of my support, knowledge and practical help.
 
Just on basal for now until levels are down to mostly under 10. Still waiting for confirmation for type but they seem to think probably LADA. When type is determined then courses will follow thankfully.
I am in Surrey and very thankful for all the information on your site - it also allows me to read it when I am mentally ready.
 
Why not start a new thread asking if there are any Type 1s in your area ie Surrey would be interested in a meet up, if you are particularly keen for a face to face get together.
 
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