Still in limbo after the GAD test

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That is interesting. As I understood it, the low antibody count was important for neonatal babies, so perhaps yours was also identified for that as well as being rare. I feel bad no longer being able to donate and would happily continue because I feel that I am well able to manage any BG fluctuation once every 3-4 months, but "rools is rools" and they say "No".

As regards Pancreatic cancer, I think it is a very wise precaution to do a pancreatic scan in suspected mature onset Type 1s to be clear. I believe that there is a rapidly growing cohort of diabetics who are such because of pancreatic problems other than autoimmune, but not necessarily cancer.
I haven't been offered one but I would like one. My mother suffered several acute bouts of pancreatitis and died of a stroke which I now suspect may well have been as a result of inflated BG levels. I very much doubt she was ever screened with an HbA1c test in those days and my guess is that she may have had diabetes as a result of the pancreatic damage but was never treated and the strokes were perhaps a complication of that. I believe pancreatitis can lead to increased risk of cancer, but I do not believe she had cancer, just damage to her pancreas. If she was diabetic, she would now be classed as a Type 3c as that is the new category for people who have diabetes caused by pancreatic damage/disease/surgery.

If your GAD is negative, then a pancreatic scan would be wise. It doesn't need to be cancer that causes it. Quite a few people have cysts which are none cancerous or precancerous or a type of pancreatitis which doesn't cause the acute pain and illness my mother suffered, or similar to my mother where the acute attacks cause damage. A pancreatic scan is definitely a good thing to accept if offered or ask for if they don't.

My GAD was positive so they had no reason to look any further.
 
rebrascora said:
That is interesting. As I understood it, the low antibody count was important for neonatal babies, so perhaps yours was also identified for that as well as being rare. I feel bad no longer being able to donate and would happily continue because I feel that I am well able to manage any BG fluctuation once every 3-4 months, but "rools is rools" and they say "No".

As regards Pancreatic cancer, I think it is a very wise precaution to do a pancreatic scan in suspected mature onset Type 1s to be clear. I believe that there is a rapidly growing cohort of diabetics who are such because of pancreatic problems other than autoimmune, but not necessarily cancer.
I haven't been offered one but I would like one. My mother suffered several acute bouts of pancreatitis and died of a stroke which I now suspect may well have been as a result of inflated BG levels. I very much doubt she was ever screened with an HbA1c test in those days and my guess is that she may have had diabetes as a result of the pancreatic damage but was never treated and the strokes were perhaps a complication of that. I believe pancreatitis can lead to increased risk of cancer, but I do not believe she had cancer, just damage to her pancreas. If she was diabetic, she would now be classed as a Type 3c as that is the new category for people who have diabetes caused by pancreatic damage/disease/surgery.

If your GAD is negative, then a pancreatic scan would be wise. It doesn't need to be cancer that causes it. Quite a few people have cysts which are none cancerous or precancerous or a type of pancreatitis which doesn't cause the acute pain and illness my mother suffered, or similar to my mother where the acute attacks cause damage. A pancreatic scan is definitely a good thing to accept if offered or ask for if they don't.

My GAD was positive so they had no reason to look any further.
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Thank you @rebrascora as always a very considered response. If there is such a thing as awards on this forum i would vote for you to win one
 
EmmaL76 said:
Thankyou for your kind words however @rebrascora and @everydayupsanddowns are probably sick to the back teeth of me!
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Not in the slightest!
 
I haven't the slightest idea what lab tests were done at the time of my diagnosis - they didn't even call 'that' test the HBA1c one then - was the glycosulated haemoglobin test, which was 13% instead of the normal 5% apparently according to what a doctor told my mother one day. I was a bit annoyed about that incidentally cos I'd been in hospital being treated with boiling up my wee every morning and a daily insulin jab for several days by then - me a married woman living in our own house for 15 months and they didn't tell ME first. Could I daresay have simply happened because the doc came to tell me that info at afternoon visiting time that day and as my mom and big sister were there thought it wouldn't hurt telling them at the same time - no idea cos I didn't ask and never saw him again after I was discharged from hospital - the actual D consultant only worked there on Mondays, so I met him the next week.

Things have certainly changed, haven't they!
 
Oh, PS meant to say - you're rarer than me cos I'm AB-.
 
helli said:
My understanding was that a virus could cause an autoimmune response.
But now I think of it, I don't know whether that was my assumption (because the body kills off the insulin producing cells slowly over time) or whether it was something I was told/read.
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Yes, interesting. I think the medical establishment is convinced that it's only ever an auto-immune response that kills beta cells. I've never seen any scientific proof of that and challenge anyone to provide it. My wife has suffered with the Epstein Barr Virus (EBV) following a kidney transplant (the virus came with the kidney) but no one has talked about it being an immune response in the body; same for the various liver viruses. When the medics get up to date on this they may stop relying on the various GAD, IA2 etc tests as the only proof of late onset T1.
 
I thought that the virus caused an immune response (to kill the virus) but then the immune system mistakenly attacked the beta cells as well as the virus? That was why they were looking at viruses that ‘mimicked’ certain features of beta cells - ie looked similar to an activated immune system.
 
trophywench said:
Oh, PS meant to say - you're rarer than me cos I'm AB-.
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I'm pretty sure you're the rarest. Rhesus negative is rarer than positive as negative is the recessive gene.
 
Yeah OK, BUT - AB- is of no help to anyone else unless they're also AB- although the good thing about it is, more or less as long as the blood is human ( 🙂 ) should I or any other AB- happen to need a transfusion, any type will do! - I think.
 
trophywench said:
Yeah OK, BUT - AB- is of no help to anyone else unless they're also AB- although the good thing about it is, more or less as long as the blood is human ( 🙂 ) should I or any other AB- happen to need a transfusion, any type will do! - I think.
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Any negative will do. It's AB+ who are the universal recipient. (And O- the universal donor).
 
Hi @JamietDE6 ,

I did a search on the main diabetes website. I found that Diabetes Tiype 1.5 otherwise known as LADA has some similarities between both Type 1 & Type 2. For more information click on the link below! Hoping you found it helpful & informative!

Latent Autoimmune Diabetes in Adults (LADA)

Latent Autoimmune Diabetes in Adults is called LADA for short. It's a different form of diabetes. What is LADA? It's a type of diabetes which seems to straddle type 1 and type 2 diabetes. Bits of it are more like type 1, and other bits are more like type 2. That's why some people call it type...
www.diabetes.org.uk www.diabetes.org.uk

Blue-16
(Susan)
 
JamietDE6 said:
Evening hive mind.
So, yesterday I received my GAD antibody result from my DSN. It was negative. I am currently injecting a mixture of Lantus and Novarapid and most of the time managing to stay between 5.2 at its lowest and around 14 late in the evening. Initially my symptoms all appeared rapidly and I am told we’re consistent with Type 1. Hab1 c was 106 and blood was 28mmol. I am not significantly overweight and exercise regularly.
Initially highest ketone at start of treatment was1.5. Based upon all this my DSN said i may not be Type 1 after all. Could be 1.5 or even 2. I mentioned a c peptide and was told it is much too early for that. My DSN advised that she would talk with the consultant to try and get an opinion and possibly review medication and give metformin a go.
I am now baffled. How will I / when will I get a diagnosis? Obviously type 1 and 2 are very different in terms of reversal. I feel like I am back at day one. Is my experience typical?
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If you're using insulin-- and, from one of your later posts, a non-trivial amount of insulin-- and yet you are not constantly going hypo, there are basically two possibilities:

1) You have Type 2 and you are severely insulin resistant. (As you probably know, you can be Type 2 without being "significantly overweight"; what matters is how much visceral fat you have, fat in and around the liver and pancreas, and you can have excess visceral fat even if your BMI is not in the overweight range.)

2) You have Type 1. (A small percentage of people with Type 1 will test negative for GAD.)

What would help to tell the difference-- although there are still grey areas!-- is the C-peptide test.

- If the result is 600 or more: Your body is still producing a normal or even more than normal amount of its own insulin, so you're highly likely to be Type 2 and unlikely to be Type 1.

- If the result is less than 200: Your body is unable to produce anything like a normal amount of insulin, so you are practically definitely Type 1.

See this table, from the University of Exeter, which also covers the 200-600 range: https://www.exeterlaboratory.com/test/c-peptide-plasma/ . Best wishes, and fingers crossed that you get reviewed by your consultant and things get sorted out!
 
Spathiphyllum said:
If you're using insulin-- and, from one of your later posts, a non-trivial amount of insulin-- and yet you are not constantly going hypo, there are basically two possibilities:

1) You have Type 2 and you are severely insulin resistant. (As you probably know, you can be Type 2 without being "significantly overweight"; what matters is how much visceral fat you have, fat in and around the liver and pancreas, and you can have excess visceral fat even if your BMI is not in the overweight range.)

2) You have Type 1. (A small percentage of people with Type 1 will test negative for GAD.)

What would help to tell the difference-- although there are still grey areas!-- is the C-peptide test.

- If the result is 600 or more: Your body is still producing a normal or even more than normal amount of its own insulin, so you're highly likely to be Type 2 and unlikely to be Type 1.

- If the result is less than 200: Your body is unable to produce anything like a normal amount of insulin, so you are practically definitely Type 1.

See this table, from the University of Exeter, which also covers the 200-600 range: https://www.exeterlaboratory.com/test/c-peptide-plasma/ . Best wishes, and fingers crossed that you get reviewed by your consultant and things get sorted out!
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Worth pointing out that the 600 and above rule isn’t a catch all, it can be clinically inconclusive for a LADA usually 5 years from diagnosis this then comes into play. You can be LADA and have normal cpeptide, but usually not elevated and elevated would be in the 1000’s
 
Thank you all for your informed replies. As always this is a great sounding board from those that have the t shirt.
 
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