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Jillzd

1.5 versus type 2 symptoms

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Jillzd

I was diagnosed as a type 2 on April 1. I'm still doing research to learn about this disease. I was looking at 1.5 and saw that it is autoimmune diabetes. I've had brushes with other autoimmune issues in the past. Been as far as being tested for lupus - luckily was negative. I've lost 20 pounds and still have 20-25 to go. I'm still very thirsty even though I'm really watching my carbs and my numbers are much better than they were.

 

Should I ask my dr about 1.5? What other symptoms do you have?

 

I would appreciate any input. The thought of this scares me to death.

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foxl

Do not be scared. We all are at first. It does mean you must take good care of yourself, for the rest of your life. So far, that is not difficult for me.

 

Now, as to symptoms: the same spectrum of symptoms as T2, really. I was overweight, began losing, craving sugar, peeing and drinking more, and then DKA. Bot all LADAs are diagnosed that abruptly. It really varies. Some have high fasting as their symptom. It just depends.

 

What makes you suspect LADA? Just a "brush with" autoimmune diseases? Do they run in your family?

 

The testing to rule it out would be a C-peptide and antibodies -- GAD-65 antibodies being the most prominent ones in LADA. My Internist's office were clueless about GADs. Do your homework and take in some info if you do not see an Endocrinologist. And be sure they prepare your blood samples properly ... pe the testing laboratory they use.

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Jillzd

I had complications with both pregnancies. First was gestational D. No meter, just "watch what you eat." Not the smartest thing to do, but I had no idea I should push for more. Second was ITP. Not sure if ITP is autoimmune related. Your spleen destroys platelets. I think that was the longest 9 months of my life. (Son is now 15 and healthy). But what makes me really wonder is about 4-5 years ago, I had a dibilitating headache, fever, progressive (roaming) arthritis, and horrible hives that lasted for about 6 months. It took a year to feel 100% again. Dr was never able to diagnose. He ruled out lupus, Lyme disease, etc. I have food allergies and am very sensitive to fragrance in soaps, shampoos, and laundry soaps.

 

I sound sickly and difficult...... I'm not either one. I just want to be prepared if I have something different than what I've been told.

 

I really appreciate your input.

 

Jill

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zoelula

What Linda said. The differences that led to my recognizing that I'd been misdiagnosed weren't so much symptoms, as situations. I had been steadily losing weight before diagnosis and continued to lose a total of 40 pounds without trying (which doesn't happen when you're 58!). I have another autoimmune disease (thyroid). My blood sugar was controlled with oral meds for a bit over a year and then my numbers started a steady climb which indicated I needed insulin (instead of the 10-15 years later I'd been led to expect with type 2!). When I did start on insulin I was very sensitive to it and only needed small doses. I have no apparent insulin resistance and no DP. (though I understand some LADAs do)But yes, bottom line is, other than time, the key to diagnosis is GAD and c-peptide.

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WendyL10

just to let you know a positive GAD 65 does not always mean LADA or Type 1.5, type 2's can have a GAD 65 positive test as well, my Endo just told me this. And, once sugars stabilize, the levels can go down and be reversed. I think one has to have more than just GAD 65, (other positive antibody tests) not sure.

 

I'm not really sure there's any difference, after thinking about this, between type 2 and LADA type 1. There are also thin type 2's too. Often times, type 2's need insulin to get their sugars down to. If they don't, the result is the same, DKA...which is the same for type 1 or type 1.5.

 

My PCP told me yesterday, there's no such thing as an adult type 1. So..whatever, it just depends on the person. It's beneficial however if you can get the DX as type LADA because you can get better insurance coverage for pumps, insulin, test strips...what it means...don't really know.

 

Type 2's can also test positive for these tests!

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Jillzd

Thanks for all the advice. I'll definitely ask about it at my next dr appt in July and keep an eye on things.

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foxl

Wendy, your Endo needs to do some catch-up reading. My ex-Endo told me that, too. More recent studies, however, demonstrate that GAD antibodies reliably predict progression of beta cell loss.

 

But yes, levels CAN go down. Mine did, but my new endo (same practice) said preventive insulin is the way to go. As did their (shared) CDE.

 

And yes there sure ARE adult Type 1's. Just look on this forum.

 

 

just to let you know a positive GAD 65 does not always mean LADA or Type 1.5, type 2's can have a GAD 65 positive test as well, my Endo just told me this. And, once sugars stabilize, the levels can go down and be reversed. I think one has to have more than just GAD 65, (other positive antibody tests) not sure.

 

I'm not really sure there's any difference, after thinking about this, between type 2 and LADA type 1. There are also thin type 2's too. Often times, type 2's need insulin to get their sugars down to. If they don't, the result is the same, DKA...which is the same for type 1 or type 1.5.

 

My PCP told me yesterday, there's no such thing as an adult type 1. So..whatever, it just depends on the person. It's beneficial however if you can get the DX as type LADA because you can get better insurance coverage for pumps, insulin, test strips...what it means...don't really know.

 

Type 2's can also test positive for these tests!

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HelenM

My initial symptoms were weight loss, thirst etc, but then the whole thing sort of stabilised, with sporadic incidences of the typical diabete sympoms + bouts of thrush . ( I 'knew' I had diabetes but thought it must be type 2 and why I didn't go to the doc is another story told elsewhere)

 

Over two years later there was a second, very rapid lot of weight loss, by then I was very thin, I developed DKA after trying to exercise with these very high glucose levels and was forced to seek medical help.

However, even though my glucose levels were sky high (fasting just under 400mg/dl) my HbA1c was 'only' 7%, so the very high levels had probably not been there for the whole of the previous 3 months.

In hospital, they put me on an insulin pump to reduce the levels/ketones and found I was insulin sensitive rather than resistant, now 5 years later I use about 25 units of insulin a day . They diagnosed type 1 (or as my doc said, you could call it 1.5) on the basis of this sensitivity and my history before they had the antibody and C peptide results back.

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sarahspins
I've had brushes with other autoimmune issues in the past. Been as far as being tested for lupus - luckily was negative.

 

I'm VERY confused by this.. either you HAVE autoimmune issues, or you don't... there's no "almost". I've been tested for celiac, RA, and Lupus, and I don't suggest that I had "brushes" with them.. I simply don't have them (I do have OTHER autoimmune issues though, not just T1).

 

If you are concerned enough to post asking about the differences though, I would highly recommend the antibody testing for T1.. but keep in mine that negative results do NOT automatically exclude it (up to 20% of "classic" T1's never have measurable antibodies) and positives for some of the results (particularly GAD-65) do not always mean diabetes... you need at least two to really indicate T1 (or LADA).

 

Wendy: If your PCP is telling you that there is NO such thing as an 'adult' T1, please find a new doctor ASAP. A vast MAJORITY of new type 1's are diagnosed as ADULTS! It is not "just" a children's disease. Autoimmune processes do not discriminate by age... you can get it at 2 years old, or 20, or 50.. but it's still the same disease! It's actually quite dangerous for a doctor to not recognize that it can and DOES happen in older individuals - it could be life threatening, honestly.

 

I was diagnosed at 20 and it was a FRUSTRATING process for me, because my diabetes was not "caught" while I was in DKA.. it seems as if in the absence of DKA, many doctors are mighty reluctant to even consider T1. I had low c-peptide resutls and a MISERABLE time controlling my #'s with "diet" (even when I didn't eat anything at all - obviously because there wasn't enough insulin in my system for basic bodily functions) and it took changing doctors to get the antibody testing I had been requesting from my first doctor.. and it was no shock when my results were wildly positive (GAD-65, ICA, and IAA). Since I had been on insulin while pregnant I had been self-medicating until I could get the antibody results.. I knew they would be positive, I just needed someone to believe me and test them.

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foxl

It may be that this Endo refers to people who are insulin-dependent as Type one, and people who are not, as Type two. This is confusing and messy. I have heard that version, too.

 

I now try to refer to myself as having Autoimmune Diabetes. Period.

 

http://www.ncbi.nlm.nih.gov/pubmed/20336277

 

"We should accept that the

autoimmune process comes in different shapes: in all ages

[31, 37, 38], populations [39–42], phenotypes [31], with

different genetic backgrounds [18], in healthy individuals

[35], and measured by T cell or B cell activity [9], and can

even co-exist with other disease processes, e.g. insulin

resistance, leading to what we think is type 2 diabetes [17].

Therefore, we propose that the name LADA could be

retired; it has helped us in the past but might be an obstacle

in the future and it could be replaced by autoimmune

diabetes."

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jenb

Wendy, glad to know I couldn't really have been diagnosed with T1 at age 52! Tell your PCP he's made my day. Now if I could only figure out why I need that darned insulin:confused:

 

(Not a swipe at you - some doctors can just be so behind the curve.)

 

Jen

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stardustshadow

Oh my, my head is now spinning in confusion!!

People in the type 2 forum asked me how it was possible to have my high BG level at diagnosis and my low-ish A1c at the same time...someone asked how I was diagnosed type 2...

Only on the basis of age (32) and weight (I need to lose some!)

 

I do have a family history of type 2 (my mom has it, and grandpa had it) but also of auto immune (my grandma has Lupus).

 

Here is where I get confused...Last summer I got a Campylobacter infection. A very, very severe one. I ended up going to the hospital...I had the infection for 2.5 weeks. Campylobacter has been know to, in rare cases, cause auto-immune disorders, like Guillian-barre (attacks peripheral nerves leading to paralysis). Campylobacter is also a major cause of pancreatitis...and that can cause beta cell death, or so I read.

 

What are your opinions on this? I know I need a C Peptide to at least get a better idea of which type I have...and I have no idea if I am insulin sensitive or not (I have had hypos before diagnosis, but that may not mean anything!)

 

Sorry to go on about it, just really confused now!

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foxl

My opinion ... get a C-peptide.

 

Also know that there are people with BOTH genes and I suspect I may be one of them, having both insulin resistance and autoimmune beta cell loss.

 

The treatment and symptoms for any hyperglycemia is the same. Except: if you have antibodies, low dose insulin helps.

 

See, I do not know about ME, either. Only vague and indirect family history (Pernicious anemia, and adult onset but what cause?) in maternal ancestors -- great uncle, and a great-grandmother. And Hypothyroidism in one uncle on the other side.

 

Unless you get genetic testing, you will not know either and it $$$ costs. SIGH.

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stardustshadow
My opinion ... get a C-peptide.

 

Also know that there are people with BOTH genes and I suspect I may be one of them, having both insulin resistance and autoimmune beta cell loss.

 

The treatment and symptoms for any hyperglycemia is the same. Except: if you have antibodies, low dose insulin helps.

 

See, I do not know about ME, either. Only vague and indirect family history (Pernicious anemia, and adult onset but what cause?) in maternal ancestors -- great uncle, and a great-grandmother. And Hypothyroidism in one uncle on the other side.

 

Unless you get genetic testing, you will not know either and it $$$ costs. SIGH.

 

Wow....I didn't know it could be this confusing!! Your family history is also confusing things, i see...

I wonder if the healthcare system will pay for me to get genetic testing....(socialized healthcare). I don't know if the doctor would think it necessary either. I am going to get that C peptide asap though!

Thanks for your feedback!

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foxl
Wow....I didn't know it could be this confusing!! Your family history is also confusing things, i see...

I wonder if the healthcare system will pay for me to get genetic testing....(socialized healthcare). I don't know if the doctor would think it necessary either. I am going to get that C peptide asap though!

Thanks for your feedback!

 

Yeah ... I know in the US, my MDs said to only treat symptoms (ie the hyperglycemia) -- so I nosed around a bit and there are many, many genetic causes including one APS-3 syndrome, which encompasses hypothyroidism, diabetes, AND pernicious anemia. The last being a real eye opener for me ... and no MD had told me anything of this!

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stardustshadow
Yeah ... I know in the US, my MDs said to only treat symptoms (ie the hyperglycemia) -- so I nosed around a bit and there are many, many genetic causes including one APS-3 syndrome, which encompasses hypothyroidism, diabetes, AND pernicious anemia. The last being a real eye opener for me ... and no MD had told me anything of this!

 

Wow, amazing...I think some doctors may overlook these things for the 'simple' diabetes explanations that we hear rehashed over and over...I found a lot of articles that intonate a connection between campylobacter infections and pancreatic cell death. The human body is so complex (and interesting!) but I think that many MDs don't want to explore those complexities when it comes to Diabetes. Some do though and that, to me, means something. I know that treating the symptoms is important, but I would also like to prepare myself for what to expect--and that can vary by type!

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Subby
The treatment and symptoms for any hyperglycemia is the same. Except: if you have antibodies, low dose insulin helps.

 

What's "the" treatment you speak of, Linda, can you explain this a little more?

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Rekarb
Wow, amazing...I think some doctors may overlook these things for the 'simple' diabetes explanations that we hear rehashed over and over...I found a lot of articles that intonate a connection between campylobacter infections and pancreatic cell death. The human body is so complex (and interesting!) but I think that many MDs don't want to explore those complexities when it comes to Diabetes. Some do though and that, to me, means something. I know that treating the symptoms is important, but I would also like to prepare myself for what to expect--and that can vary by type!

Be prepared to make up your type as you go along. It helps to have all of the tests results because then you can compare with people who are similar. Diabetes is just way to multifaceted to simply do type.

My endo calls me a LADA even though I have no autoimmune markers. I showed him the KPD stuff and he opined that this had got beyond his pay grade. He would deal with my issues using whatever he had in his bag of tricks and he figured something would work, eventually.

 

Mike

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pinkbenjiblue

Hi all, so this is a bit confusing...was told my c peptide was .04, they said on the very low end of normal, I also have pcos, thyroid and bouts of iritis, autoimune stuff, so am I a type 1, 1.5, 2??? Also I am insulin resistant and all my weight is in the belly, Developed diabites soon after hysterectomy at age 36, :( I know I am one in a million...LOL, also on insulin and doing great with that!! Thanks I think I am confused....yeah, I am...thanks. Renee

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Jillzd

Geez, I do more googling to check medical terminology. :)

 

I hope the tests turn out negative for you Stardustshadow.

 

I'm hoping mine is all in my head...... but I want to rule it out.

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stardustshadow
Geez, I do more googling to check medical terminology. :)

 

I hope the tests turn out negative for you Stardustshadow.

 

I'm hoping mine is all in my head...... but I want to rule it out.

 

Thank you! Good luck to you, too!

It IS all a bit scary and confusing, isn't it?

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foxl
What's "the" treatment you speak of, Linda, can you explain this a little more?

 

Getting the blood sugar LOWER by all and any means ... diet, exercise, weight loss, and if necessary, oral and injectable medications.

 

BUT if there is autoimmune process ongoing ... insulin should be added, per many European clinicians' and researchers' recommendations. That's all.

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