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Newly diagnosed with 1.5 (i think??)

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
R

richardmillar11

Active Member
Relationship to Diabetes
Type 1.5 LADA
Hi folks

back on 21st October, 2021 I was diagnosed with type 2 diabetes. I immediately started diet and exercise. I was taken off metformin after 1 week. I have lost over 2 stone but was not heavy to being with. On diagnosis my a1c (if that's the correct term) was 115. After 4 weeks it came down to 85 and on 22nd December, 2021 it is now 55 and that's without any medication. On 16th December 2021 my GP practise confirmed again it was type 2 and then the next day I received a call from my Dr to say no its actually type 1 and was referred to the hospital. Having attended the hospital on 22nd December 2021 I certainly felt more reassured and was told they don't know which type it is as I present symptoms of both type 1 and type 2 and the consultant said its more likely 1.5 (LADA) or then again it could be MODY. I am not on any medication for now and just being monitored. The initial shock of type 2 was bad enough however the second shock has come much more of a blow. Anyone else having the same experience?

R
 
Hi and welcome to the forum. There is a lot to get your head round and hopefully we can help with that.

Can I suggest that you edit your username? We discourage the use of e-mail addresses as usernames because we think it is in everybodys best interests to try and prevent spammers using the forum to make an obvious direct link between a member and their medical status. If you cannot see how to do it, then no problem. One of the admin team @everydayupsanddowns, @Josh DUK or @Cherrelle DUK will be able to fix it.
 
Docb said:
Hi and welcome to the forum. There is a lot to get your head round and hopefully we can help with that.

Can I suggest that you edit your username? We discourage the use of e-mail addresses as usernames because we think it is in everybodys best interests to try and prevent spammers using the forum to make an obvious direct link between a member and their medical status. If you cannot see how to do it, then no problem. One of the admin team @everydayupsanddowns, @Josh DUK or @Cherrelle DUK will be able to fix it.
Click to expand...
I am having trouble messaging the admin guys can you tell me how to do it?
 
Hi and welcome from me too

There is a lot to take in when you are first diagnosed, so it is totally normal to feel overwhelmed. It can be even more confusing when there is a question mark over your Type of diabetes but the important thing is that your health care professionals have taken this into consideration and there are further tests that can be done to clarify the situation. Being referred to a specialist hospital diabetes clinic is probably the best route to getting those tests as they are not routinely requested by a GP and the interpretation of the results is not always simple, so having a consultant request and oversee the results is best. The 2 tests which they should do is a C-peptide test which will show how much insulin your pancreas is still able to produce and a GAD antibody test. These tests are more expensive than the basic HbA1c test so not routinely done and one takes about 6 weeks for the result to come back as there are not many labs in the country which perform it and the blood sample has to be frozen soon after being taken and remain frozen in transit, so the logistics are more complex than your average blood test. These are basically Type1 tests and Type 1.5 or LADA... Latent Autoimmune Diabetes in Adults is just a slow onset form of Type 1.
Hopefully these tests have been done or will be done sometime in the New Year and will give a clearer picture of your Diabetes. The MODY testing is more expensive still and will be a last resort but I think it unlikely you would be MODY. It is much rarer.
Anyway, it looks like you are managing reasonably well with diet and exercise at the moment and hopefully you will get some clarity on your Type of diabetes in the near future.

If you have any questions about anything, please feel free to ask.
 
richardmillar11 said:
Great thanks for that. I did have a look but couldn't work out how to do it.

Thanks for getting in touch.
Click to expand...
No problem. Having been tagged by myself and rebrascora, one of them will be along to do the necessary when they next visit the forum.
 
Welcome to the forum @richardmillar11 from another late starter.

Whether you end up as T1.5 (LADA) or Mody the learning curve is much the same. It looks like you have got your head round things already and it is good that you are being monitored whilst they sort out which type you are. In the early stages after diagnosis some manage without any insulin, since There are some surviving beta cells still doing their job. As the beta cells diminish in number you will find that you need insulin. This is NOT an indication of poor control simply the an indication that more beta cells have been seen off.

Do come back with any questions that you have. Nothing is considered silly on here. Just ask.
 
Last edited by a moderator:
rebrascora said:
Hi and welcome from me too

There is a lot to take in when you are first diagnosed, so it is totally normal to feel overwhelmed. It can be even more confusing when there is a question mark over your Type of diabetes but the important thing is that your health care professionals have taken this into consideration and there are further tests that can be done to clarify the situation. Being referred to a specialist hospital diabetes clinic is probably the best route to getting those tests as they are not routinely requested by a GP and the interpretation of the results is not always simple, so having a consultant request and oversee the results is best. The 2 tests which they should do is a C-peptide test which will show how much insulin your pancreas is still able to produce and a GAD antibody test. These tests are more expensive than the basic HbA1c test so not routinely done and one takes about 6 weeks for the result to come back as there are not many labs in the country which perform it and the blood sample has to be frozen soon after being taken and remain frozen in transit, so the logistics are more complex than your average blood test. These are basically Type1 tests and Type 1.5 or LADA... Latent Autoimmune Diabetes in Adults is just a slow onset form of Type 1.
Hopefully these tests have been done or will be done sometime in the New Year and will give a clearer picture of your Diabetes. The MODY testing is more expensive still and will be a last resort but I think it unlikely you would be MODY. It is much rarer.
Anyway, it looks like you are managing reasonably well with diet and exercise at the moment and hopefully you will get some clarity on your Type of diabetes in the near future.

If you have any questions about anything, please feel free to ask.
Click to expand...
Hi Barbara

Thanks for the reply. All your information is spot on and very helpful. The C peptide test result came back normal after a week and the GP surgery confirmed that it was type 2 and not type 1. Then about 6 weeks later I spoke to the Nurse as my blood sugar levels were all pretty much within the diabetic range and I had only taken Metformin for 1 week. This was a Thursday afternoon and she confirmed that I could expect a good result on the A1C test and by the way I am not type 1. The next day however the Dr himself rang to say I was type 1 as the Anti GAD had come back positive. What they didn't explain was that they needed both tests results back so C peptide was normal but GAD positive and was then referred to the hospital. As you can imagine it was a massive blow after being told twice it was def type 2.

The hospital was a much more positive experience and I felt much more reassured. The consultant said she would be running the tests again and the GAD positive test was not conclusive in any event. However I have researched it on line and 75 to 80% of type 1 diabetics are anti GAD positive so looks to me like that's what it is. I was sure it was type 2 as the year before I had been in the pre diabetic range at 43 which returned to 42 but then this year has shot to 115. Its now sitting at 55 without medication and I am due to get it re-done in two weeks time which will be three months after initial diagnosis. So its all a bit of a waiting game to see how it progresses.
 
richardmillar11 said:
Its now sitting at 55 without medication and I am due to get it re-done in two weeks time which will be three months after initial diagnosis.
Click to expand...
Have you made any lifestyle adjustments since your hbA1c result of 115? Changing your diet and particularly reducing carb intake as well as increasing exercise can have a massive impact on BG levels and much more so than most oral Type 2 medications, so it would be unsurprising for dietary changes to improve your results even if you are LADA as it relieved the strain on your remaining beta cells (which produce insulin) and enable them to cope again, for the time being.

Getting a "normal" C-peptide result doesn't tell you much. Firstly you really want an actual number not a vague interpretation of that number. Most Type 2 diabetics are producing higher than normal levels of insulin because they are resistant to it. The "normal" range of insulin production is quite broad if I remember rightly so if you are nearer the bottom end of normal together with a positive GAD result (again... numbers are better than just positive or negative) then that would indicate Type 1 or LADA. If your C-peptide was nearer the top end of normal, that might indicate some insulin resistance and point more towards Type 2. I believe it is possible to get a low GAD result (under 5 I think off the top of my head) and not be Type 1 or autoimmune diabetic.
The fact that your levels have improved with lifestyle changes, if that is what has happened, does not point towards Type 1 or Type 2, it just shows that you have relieved the pressure of work on your beta cells and enabled them to manage better for now. If you are Type 1 or LADA an the destruction of your beta cells by your immune system continues then you will reach a stage where diet alone will not help and you will need insulin and your levels will suddenly shoot up again. With LADA that can be months or years.
 
Yes, massive changes to diet and lifestyle. I was under massive pressure at work and at home and have just cut that completely and my diet has cut all sweets i.e. no buns, cakes, processed food. I even cut out bread totally at the start but have started introducing it again. Potatoes and root veg are also being limited. There are days where I don't have any bread or starchy veg at all. No fried food, no salt and a limit on red meat. My cholesterol is down to 4.5. from 7 without medication. I have stopped stomach acid medication which I was taking for 10 years and my blood pressure is normal again. The C peptide came back at 1.8. Not sure what the anti GAD result was I didn't ask and to be honest I didn't want to know as I felt the higher it was it would be a more rapid destruction of the remaining cells. I must have read that somewhere.

I suppose its the not knowing and the how soon will things change as you say if it is LADA how long before things change but there is nothing I can do about that now just take a day at a time.
 
Hi Richard. Your story is very similar to my own. I was diagnosed over the telephone sept 20 age 43, as a type 2. Hba1c 51 I was also in the prediabetic range for a couple of years prior. I was slim and fit, diet not amazing but not awful. Cpeptide showed good insulin production, but possible resistance. Antigad positive at 55. No other positive antibodies for type 1. I’ve since gone from being type 2 to 1, back to 2 now nobody has a clue! I spoke to a private specialist not long back who said, even with the positive GAD I could still be, a 1 or 2 or maybe MODY. Currently I’m diet and exercise alone but being underweight this poses significant challenges. Thing is with GAD, it can be present in people without diabetes, due to illness etc, type 1’s can be diagnosed with GAD into the 1000’s some type 1’s don’t have it at all, a proportion of type 2’s have slight positives. On its own especially low tilter can be unreliable. This doesn’t help people like us. My control is pretty good, my DN says my charts are almost non diabetic, she said this would not happen if I was type 1, but right now nobody knows especially me. The only advice I can offer is try not to let the uncertainty get you down, if somethings working for you stick at it and eventually one way or another things will get easier and clearer. Unfortunately we fall into the very misunderstood grey area of diabetes, I’m glad you seem to be receiving good levels of support in terms of healthcare, and I hope this continues for you going forward. All the best, if I can be of any help at all please let me know, I may not have the answers but can certainly relate to the frustrations of being a non box ticking head scratcher !
 
Hi Emma L

Thank you so much for taking the time to respond. Feel really reassured to hear there is someone else out there who is in the same boat as myself. The GP said last week "Richard you are certainly a very exceptional case" as he can't get his head around how the Hha1c is down to 55 from 115 in just 9 weeks. The consultant at the hospital said if anyone asks me I am to say I am unique lol neither type 1 nor type 2 as I present with symptoms of both. As you said she then went on to say its probably LADA but then again it could be MODY which is ever more rare. She asked a lot of questions about family history but though I didn't meet the profile for further testing at this time. She also confirmed as you said that GAD test is not conclusive even though the GP said it was certain (that's after he was fairly certain it was type 2!). I don't know if this will turn out to have any significance but she wanted to know if I'd had Covid and I can only say that I think I did back in September, 2019 before it was really mentioned on the news. Did you have Covid?

Thanks again for sharing your story.
 
Your welcome! I was also asked if I’d had covid. I may of had it and been unaware. I did however catch it at Christmas of this year. Currently I’m type unknown, testing for MODY is very rarely done and can also depend on where abouts in the country you live. I was told my GAD would be redone in another 1-2 years, but then again I was told I would have a review last April and heard nothing. So I just carry on the only way I know how. Your hba1c reduction is incredible! Also the weight loss, did you have any problems reducing so quickly?
 
The only problems I had reducing so quickly were mental. Three days into eating properly again I felt physically really well but my head was really in a bad place with not only the diagnosis but with lack of sugar sweet treats. I found and still do the afternoon cup of coffee at work without a bun or biscuit or three really hard. Especially now in the dark evenings I literally feel when it starts to get dark I cannot cope but that has slowly started to get better. Today at coffee time I took two rich tea biscuits and mostly now once a day I will have some dark chocolate. The weight loss happened itself I didnt have to try. The day I was told I was t 2 I had a complete melt down and changed my die drastically and that week I lost about 12lbs. It was sitting just under 10stone for weeks and when I was told I was t 1 another half st came off in days. I know what u mean about being under weight it is a real challenge now to eat more to put some on without spiking blood sugar. On sat night I went out with a friend and decided I would have what I wanted within reason so had steak with mash fried onions pepper sauce. Went a 30 min walk and at bed time my bs was 8.8 compared to previously eating more or less the same in the same restaurant and 2 hours later is was 15.5. Do u fine u ge many high spikes ? My bs is highest at night an£ in the morning. Morning has ranged from 5.7 to 7.2 and if I lie on in bed after waking a few hours it was 7.8. It can also spike after breakfast but then can be 4 or 5 before lunch.
 
If you don't want to be losing more weight then increase your healthy fats, nuts, eggs, full fat dairy, cheese, avocados, olives and have enough protein with your meals.
If your levels are high in the morning you should try a low carb breakfast, Full fat Greek yoghurt, berries and seed or nuts or eggs with bacon, mushrooms, tomatoes or omelette.
 
Leadinglights said:
If you don't want to be losing more weight then increase your healthy fats, nuts, eggs, full fat dairy, cheese, avocados, olives and have enough protein with your meals.
If your levels are high in the morning you should try a low carb breakfast, Full fat Greek yoghurt, berries and seed or nuts or eggs with bacon, mushrooms, tomatoes or omelette.
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Thanks for that. I have to watch the fats as well as I have or did have high cholesterol but I am guessing the good fats which u have mentioned are ok ? Breakfast at the moments since October has been two wheetabix which seems to spike levels. I will try your alternatives. Thanks for the advice. Much appreciated
 
richardmillar11 said:
Thanks for that. I have to watch the fats as well as I have or did have high cholesterol but I am guessing the good fats which u have mentioned are ok ? Breakfast at the moments since October has been two wheetabix which seems to spike levels. I will try your alternatives. Thanks for the advice. Much appreciated
Click to expand...
Some people have found that by reducing carbs that increasing fats has a positive effect on reducing cholesterol and improves their ratios.
 
richardmillar11 said:
The only problems I had reducing so quickly were mental. Three days into eating properly again I felt physically really well but my head was really in a bad place with not only the diagnosis but with lack of sugar sweet treats. I found and still do the afternoon cup of coffee at work without a bun or biscuit or three really hard. Especially now in the dark evenings I literally feel when it starts to get dark I cannot cope but that has slowly started to get better. Today at coffee time I took two rich tea biscuits and mostly now once a day I will have some dark chocolate. The weight loss happened itself I didnt have to try. The day I was told I was t 2 I had a complete melt down and changed my die drastically and that week I lost about 12lbs. It was sitting just under 10stone for weeks and when I was told I was t 1 another half st came off in days. I know what u mean about being under weight it is a real challenge now to eat more to put some on without spiking blood sugar. On sat night I went out with a friend and decided I would have what I wanted within reason so had steak with mash fried onions pepper sauce. Went a 30 min walk and at bed time my bs was 8.8 compared to previously eating more or less the same in the same restaurant and 2 hours later is was 15.5. Do u fine u ge many high spikes ? My bs is highest at night an£ in the morning. Morning has ranged from 5.7 to 7.2 and if I lie on in bed after waking a few hours it was 7.8. It can also spike after breakfast but then can be 4 or 5 before lunch.
Click to expand...
I can really sympathise with the mental aspect. I have struggled quite badly. Glad you enjoyed your meal and were pleased with your nighttime BG. My diet is so strict that I don’t spike too much, mornings are always a struggle, my fasting is really good, usually mid 4’s -5 but the second I move about I get a spike only to about 7 but that’s without food, if I ate, even a mouthful I will go much higher. I stay in range between 4-7.8 virtually 100% of the day this has not always been the case, just over the last few months, but as I’ve said I’m very restrictive, I’m not really sure mine is the best approach, can’t see it being something sustainable but for now its how I feel most comfortable
 
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