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Newly Diagnosed 1.5 and full of questions...

JonathanVII

JonathanVII

Member
Messages
6
Location
Los Angeles, CA
Type of diabetes
Type 2
Treatment type
Diet only
Hi there, glad to find this forum. I'm newly diagnosed 1.5 and controlling with diet at the moment. The Dr. prescribed metformin and made it sound optional at my current state. I had a strange reaction to it (felt extremely weak and tired constantly) so quit. I've been reading about insulin as a treatment and that Metformin is more of a bandaid for the inevitable. Also read that early insulin adoption made the transition easier later on when the body stopped producing it. I'd love to hear thoughts on this topic.

Also, if anyone knows a great Dr. for me here in Los Angeles, CA that would also be nice!

Cheers, J
 
Hi Jonathan,

I was diagnosed with LADA in December 2012 and am diet and Metformin controlled. Metformin is optional as it won't work forever but it helps your body to use the insulin it does produce so if you're not producing enough it can give it a little boost. Are you sure it was the Metformin causing those side effects and not just side effects of your BS lowering now you're diagnosed? The reason I ask is that Metformin is known for really only having gastro side effects which are usually solved by using the slow release version of the medication. Also, when people are first diagnosed they have usually been running high numbers for a while and so when you start to take control and ur BS starts to gradually come lower you can feel very tired, lethargic, ur vision can blur a bit...depending on how high you were to start with.

My condition remained unchanged all this time apart from the last couple of weeks. I've started to have higher morning readings and they're starting to take longer and longer to come back down - a sure sign that my insulin production is probably dropping...

There are many of us LADAs on here who have all had different lengths of insulin-free time, I'm sitting on 14months at the minute but not sure I will hold out for many more...

With regard to insulin, I would imagine starting it early will help you to get used to it more gradually but because there is no evidence that it makes any difference to your condition or the longevity of your endogenous insulin production I guess it's personal choice whether you want to take the insulin route straight away as once you start there's no going back lol. It can also be difficult for LADAs to get good control with insulin sometimes because your still producing your own insulin but don't know how much and so it's difficult to calculate how much you need to inject when you don't know how much is there to start with. This is why my consultant won't put me onto insulin until I am "regularly in double figures" as he puts it but the jury is out on this subject and I'm sure more people will be along soon with their own experiences.

Welcome to the forum :-)


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.
 
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Hiya Jonathan!

Another LADA here! I'm significantly further progressed than Elaine and on basal/bolus. I was originally misdiagnosed as Type 2 five years ago and left to struggle on diet and exercise for a year before becoming very ill. I love insulin! I low-carb to keep my BG good and use small doses of both basal and bolus. It's inconvenient sometimes, but my HbA1c is 5.4% (not sure what that is in American LOL) and I know I couldn't achieve normal BG in any other way. I feel that going onto insulin early is best thing I ever did.

If you really want a good informative read, I'd recommend Dr Bernstein 's 'The Diabetes Solution'. He is an 80 year old American Type 1 physician who has had diabetes since childhood. Even if you choose not to follow his approach you will learn so much about your condition. I can't recommend his book highly enough. A truly remarkable man.

Smidge
 
JonathanVII said:
Hi there, glad to find this forum. I'm newly diagnosed 1.5
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Welcome Jonathan. Did your doctor say it is LADA or leave it as T1.5? T1.5 encompasses LADA but also MODY/monogenic diabetes, and within the monogenic range are various different forms with differing treatment options. Do you have a specific diagnosis? In my case I went from T2 to "non-obese T2" to T? to T1.5, after which I had tests for LADA, then four or five commoner types of MODY, after which they started on mitochondrial testing. The working diagnosis I have now is a type where metformin is contraindicated, sulfy considered useless and descent into insulin, madness and death considered a mere matter of time (I may be exaggerating this just slightly).

So what I'm saying is the T1.5 by itself is more a starting point than a diagnosis in itself unless it comes with a specific diagnosis.

As for a practitioner, if I lived in the US I'd see whether Dr Bernstein recommends anyone in far-off California.

Good luck,
Kate
 
Well, like the others I'm an adult onset T1. I'm surprised you are only diet only plus Metformin as LADA/T1.5 when diagnosed is normally already needing something like diamicron (Gliclazide in the UK) and/or a gliptin to stimulate the pancreas. Metformin is normally well-behaved if it's the Slow Release (SR) version. Yes as and when tablets start to fail to work insist on going for insulin. Some of us were started too late needing to keep carbs extremely low to cope.
 
Hi Jonathan,

Are you definately type 1.5? The reason I ask is that I have MIDD (which is closer to type 1 than type 2, but isn't LADA/1.5) and I can't take metfomin because it causes exactly the symptoms you described (tiredness and muscle weakness). Would it be worth mentioning this to your doctor or are you absolutely certain about your 1.5 diagnosis? Other symptoms of MIDD include slimness, deafness and general fatigue and muscles aches, plus your other family members will also have these traits.
 
THANK YOU! All! I appreciate your writing and input.

Answer is I'm not sure of anything but my Dr. did tell me I am LADA as well as 1.5. I will look up all of these other things as well and look into getting that book. I am a bit of a health and fitness junky so everyone was a bit perplexed with my diagnosis including myself.

Currently my BG is 95-120 mg/dl every morning (fasting) and 85-100 mg/dl right before dinner (2hrs post meal/snack.) So clearly I have that night thing going on. The Metformin was definitely an issue, I had serious weakness problems that went away once I stopped and it seemed only to raise my BG about 10 mg/dl. Definitely was not too low. This was at the beginning of cutting out any/all flour products, potatoes, white rice, etc. So I was going through some crazy body chem changes.
 
Hi Jonathan,

Metformin wouldn't make you go low as it isn't a sulfonylurea I just meant lowER lol. Type 1.5 must be different things in different places because up where I live type 1.5 and LADA are the same thing which is autoimmune diabetes with a slow onset....

Happy reading :-)


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.
 
Elaine is correct, T1.5 and LADA are the same thing, late/slow onset of the auto-immune type of diabetes normally diagnosed after GAD antibody test. Many can manage on oral meds/diet change initially but this will eventually progress to insulin. How long this may take is pretty impossible to say as much depends on the individual. There will come a time when your BG levels slowly start to creep up and diet/exercise alone will not be enough. You need to discuss with your doc at what trigger you decide to accept insulin as a treatment. Good luck.
Mo
 
mo1905 said:
Elaine is correct, T1.5 and LADA are the same thing
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In that case, my diagnosis of T1.5 mitochondrial is impossible :(, According to my consultant, some practitioners say LADA is the only T1.5 but others include the various types of MODY and MIDD. I was so relieved to get a solid diagnosis of T1.5 to replace "T?", but for clarity I will reinstate the question mark. In fact, I can now describe myself as not only "not T1 or T2" but also add "not T1.5" :)
Kate (???)
 
kesun said:
In that case, my diagnosis of T1.5 mitochondrial is impossible :(, According to my consultant, some practitioners say LADA is the only T1.5 but others include the various types of MODY and MIDD. I was so relieved to get a solid diagnosis of T1.5 to replace "T?", but for clarity I will reinstate the question mark. In fact, I can now describe myself as not only "not T1 or T2" but also add "not T1.5" :)
Kate (???)
Click to expand...
As is usually the case with diabetes there are "grey" areas and if you investigate the internet you may well find what you say is correct. However, DUK and the majority of sources I've read say they are the same thing. Both the auto-immune variety. I'm no doc so I am not saying your consultant is wrong. All of the advice/info I give has been gathered from talking to docs and trawling this forum and the net. There are some docs who have never even heard of T1.5. Sometimes it's very difficult to know exactly who to believe lol !


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Mo is right, different strokes for different folks lol. Up here MODY is just MODY, that's its name. Same with MIDD they just call it as it is and keep it separate from types 1, 2, and 1.5/LADA :-)


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.
 
I'd agree that MODY and MIDD and all non T1. T2 or gestational are 'others' not 1.5.
I think the whole 1.5 thing makes it confusing.
In the only 'official' documents ie the WHO and ADA papers defining the type LADA is a subset of T1a (autoimmune ).
The European Action LADA research group says
" we recommend that type 1 diabetes and LADA be viewed as part of a broad clinical spectrum that more truly represents autoimmune diabetes. ...... Since we now show that nearly 10% of adult-onset diabetic patients have autoimmune diabetes, it follows that adult-onset autoimmune diabetes is probably more prevalent than childhood-onset type 1 diabetes, while in adult-onset autoimmune diabetes, LADA is more prevalent than classic type 1 diabetes " http://care.diabetesjournals.org/content/36/4/908.long
They define classic T1 in adults as needing insulin immediately on diagnosis. That's not clear cut though , by that criteria I have classic T1. I went on to insulin immediately on diagnosis . This was partly because I delayed seeing a doctor so had classic symptoms but also because antibody tests confirmed autoimmunity and my consultant puts people with antibodies onto insulin. (the study mentions that this is the case in many places)
Maybe T1 should be renamed autoimmune diabetes (there are some people that want that)
 
My consultant already says that there is only "autoimmune" and "non-autoimmune" when it comes to mainstream diabetes and that t1.5 and LADA don't actually officially exist other than in an explanatory/reference way to help explain it.

I think what they're referring to when they say "adult type 1s who need insulin straight away" is people who literally NEED insulin straight away or they will die i.e. the people who end up in hospital with ketoacidosis on a sliding scale... I know a few people who that has happened to and there are a few on this forum too. The problem with that though is that how do you know whether they went from normal to ketoacidosis rapidly or whether they had LADA for a long time and didn't notice until it was too late?

I genuinely don't think they can explain all of the different "grey areas" in diabetes or they would be on all day but I do agree with the "autoimmune" "non-autoimmune" and "other" groups as it's so much more clearer that way, the same way I think it's easier for many people to understand it when they say:

Type 1 = Insulin Dependent
Type 1.5/LADA = Insulin Deficient
Type 2 = Insulin Resistant

Even though LADA will end up being insulin dependent and even though type 2 CAN lead to insulin dependence if not controlled properly.


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 22 currently controlled by only Metformin, 500mg twice a day.
 
Can any 1.5 say me ur pre & post prandial C peptide levels? I am a type 1, but got a doubt if I am type 1.5 bcoz my insulin requirments are very low & having nearly 7 to 8 hypoglycemic episodes inspite of lowering my insulin dose to almost nil. I am on novomix 30 twice a day, hba1c 7.4 BMI 19.5, age 20 years, diagnosed 5 months ago with all typical symptoms & weight loss

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