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Specialist thinks I may be type 1 now?

R

Ruth Bristow

Newbie
Messages
2
Type of diabetes
Type 1
Treatment type
Other
Hello.
This is my very first post so I hope I am in the right place?
I am 42 and have had type 2 for about 3 years.
I started with metformin and then because this wasn’t enough to keep my levels down my doctor added gliclazide.
This isn’t working either, so I went to see the diabetic specialist and he thinks I may be type 1 and has given me blood tests and urine tests to do.
I really don’t want to go onto injections (which is what he said I would probably need)
I had gestational diabetes and injected them and suffered with hypos all the time.
I’m basically wanting to know if any other type 2’s went to type 1 and how they handled the transition.
Many thanks for any help available
 
Ruth Bristow said:
I’m basically wanting to know if any other type 2’s went to type 1
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Type 2 doesn't turn into type 1. They are separate conditions.

What your specialist is saying is you may have been misdiagnosed as type 2 when you have been type 1 all along.

The tests to find out whether this is correct would be:
  1. A cpeptide test. This may be the urine tests you've been given. A cpeptide test looks at what your endogenous insulin production is looking like. A honeymooning type 1 will have residual insulin production. Type 2s may have excess insulin production, or low insulin production if beta cells are getting worn out.
  2. Antibody testing, most commonly a GAD test. Type 1 is an autoimmune disease. There are antibodies associated with autoimmune type 1 diabetes. So if you test positive for these antibodies you are definitely type 1. But if you are negative that doesn't necessarily mean not type 1. About 25% of type 1s are negative.
What do your blood sugar levels look like on metformin and Gliclazide?
 
Let remember that just because someone has Type2, it does not reduce the low probability that a given person will get Type1……..

(If it turns out that Type1 like other autoimmune conditions can be triggered by inflammation (along with lots of other triggers not yet discovered) there may even be a small increase in the risk of someone getting Type1 due to them having insulin resistance. Likewise eating a lot of grains may put some people at increased risk of both Type2 and Type1, the science on this is still unproven. )

Being misdiagnosed is also very possible (and based on stats most likely), hence I would like to see everyone who may have Type2 being given a fasting insulin test, as at the time of diagnoses nearly everyone with Type2 will be producing more insulin then is normal.
 
Hi. As Catapillar says you don't change from T2 to T1 but mis-diagnosis is quite common - I'm one of those. It's good that your consultant is doing the right thing giving you further tests. Even though you had insulin hypo problems before I wouldn't worry. With a well balanced insulin regime i.e. Basal/Bolus when tuned with carb-counting should avoid serious or even any hypos. Basal/Bolus involves two insulins and 4 to 5 injections. It may sound awful but it isn't. I don't know what regime you were on before? I've now been on insulin for around 4 years and never gone below 3.6 and never seriously hypo. By keeping the carbs down you minimise swings which all helps. I wouldn't go back to all the tablets which didn't work anyway.
 
ringi said:
there may even be a small increase in the risk of someone getting Type1 due to them having insulin resistance.
Click to expand...

That reads like nonsense. If type 2 increased the likelihood of type 1 there would be many documented cases of people with a confirmed type 2 diagnosis later having antibody positive confirmed type 1. And there simply aren't.
 
Do you follow a low carb diet now? If not, reducing your carbs until you see the numbers you like could help emmensly.
I am LADA, and like @Daibell, keeping to a low carb diet keeps me from having bs swings as it allows me to take lower insulin doses. Nobody wants to be on insulin but sometimes it’s necaessary.

What would you estimate your carb level as of now?

Of course you’ll have to be very careful on Glicazide as it works on your pancreas and lower carbs could cause hypos. Consult with your doctor before making any dietary changes.
 
@ringi . I don't think anyone gets type 1. We become type 1 . It's a condition not a disease.
 
Hi,
Thank you for the replies.
They are really helpful.
So, I do follow a low carb diet and I’m not overweight.
My levels are always in the teens, and I’m amazed when they are not!
I get a very hungry almost hypo feeling when my levels ever dip to 5. Something!
I’m just concerned that people always dis the insulin? Like it’s supposed to make you put weight on. I don’t really know any of the other bad effects other than the hypos.
 

Hi Ruth,
It's dangerous for blood sugars to be high, insulin would bring your figures down.
My mums on insulin and she doesn't have many hypos.
True insulin can put weight on you.
I'm being tested for type one as my dr isn't sure what type I have.
I will go on insulin if offered as I don't want the complications of diabetes.
Sorry your going thru this.
Take care
 
Ruth Bristow said:
I’m just concerned that people always dis the insulin? Like it’s supposed to make you put weight on. I don’t really know any of the other bad effects other than the hypos.
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Insulin doesn't make you put weight on. Having blood sugar levels constantly in the teens is likeLy to be, unhealthily, stopping you being able to gain weight, or causing untried for weight loss.

It sounds like LADA, or slow onset type 1, is a possibility. Gliclazide isn't really recommended for LADA, as it will more speedily exhaust beta cell function.
 
Having been a text book morbidly obese, non-exercising 50 year old when diagnosed with an Hba1c of 140, Type 2 seemed obvious. (Though, I did query the massive weight loss of 4 stone pre-diagnosis then...) "You can't be Type 1 at your age and weight." the doctor informed me, and when I countered that with "My dad was diagnosed Type 1 at 65?" I was told I was wrong.

However, now a healthy weight which has been stable for well over a year, and an equally stable Hba1c which had been in the 50s since three months in, (over two years now) despite no change to my LCHF way of eating, and my 7 - 10 miles of walking most days, I've struggling to get bloods below 10 , Hba1c is now in the 80s and weight is beginning to dip again. As I kept saying in the early days - "I'm really not trying to lose weight..."

I'm on one last attempt with meds before the doctor does the tests to check if I'm really a mis-diagnosed Type 1 - but this time I have a doctor who is sensible, believes my data on my bloods spreadsheet, walking records and food diary, ( the previous one told me I was too obsessive) and wants to get this sorted as much as I do!
 
I'm much healthier on insulin. As gliclizide stopped working for me too. All meds stopped working, even metformin. However since my diet from high carb to low carb metformin is helping me again, off and on.
My notes say I'm type2 with hugely insulin resistance.
I was diagnosed type2 before my 2 insulin needing pregnancies.
You may still be type2. Some type2s are'nt overweight.
However as @catapillar has stated a type1 has a completely different form of diabetes. Only common thing is the effect on blood glucose levels and causing possible complications which is why both called diabetes.
A medic sees diabetes then thinks 'ah! it's effects are.......'
Two different causes.
Myself I've come to the conclusion I have what I have and I just need to manage it well.
If it came out in the future I was a rare form of type1 then so be it.
I still need insulin to manage my diabetes. Irrespective of its type. Even some type1s do what I'm doing, reducing weight to reach a better bmi and keeping carbs from getting too high.
Diabetes is for life, even if you gain remission or reversal. It still has to be managed to stay that way.
It's not a death sentence. In fact I live healthier than my whole family. Everyone of them. I'm the only diabetic.
 
Ruth Bristow said:
I’m just concerned that people always dis the insulin? Like it’s supposed to make you put weight on. I don’t really know any of the other bad effects other than the hypos.
Click to expand...
There are two scenarios where insulin may be perceived to make you put on weight:
- insulin is used to "unlock" our blood cells to let in the glucose to give us energy. Without enough insulin, these "keys" are not available, our bodies look for alternative ways to get energy and start breaking down fat and muscle. So high BG is often associated with weight loss. When this high BG is treated with insulin, our bodies start to use glucose, the weight loss stops and we start regaining the weight we previously lost.
- I believe type 2 is associated with insulin resistance. When someone with type 2 is prescribed insulin it is because their body is unable to produce enough insulin due to this resistance. However, artificially raising the insulin available (through injections) may cause the insulin resistance to increase. Insulin resistance may cause weight gain. (Hopefully, I have explained that correctly - someone with type 2, please correct me if I am wrong and do not take offence.)
You do not have type 2 (as others have mentioned, type 2 does not "turn into" type 1) so the second scenario is not relevant to you and the first scenario is a result of high BG which comes with far worse complications than regaining weight.

I think the bad rap for insulin mainly comes from people with type 2. Whilst some people with type 1 may experience some problems with some insulins, this is rare and fear of these reactions should not be a reason for avoiding insulin: they should be a reason to talk to your healthcare team and get the chance to try out a different type of insulin.
 
Hi. My understanding is that in T2s with insulin resistance there will normally be excess insulin produced but muscle cells can't use it due to them being 'fatty'. The end result looks the same as lack of insulin but the c-peptide test will show-up excess or lack of insulin and hence T2 versus T1. I'm also told that in long-term T2, the pancreas may give up producing insulin due to this resistance and hence then looks nearer to T1 but thru a different process. I've never seen any research studies for this area.
 

My DN said that I might be Type 1.5 (LADA).

The tests will be carried out in January.

I do not want to be shocked so I would like to learn from you how I can best prepare myself and cope with it.

Please advice, thanks.

Andrew
 
I’m LADA as of three years ago. I’m 53. It was a shock but I deal with it. For me a low carb approach keeps me the stablist and allows me lower insulin doses but we all have our own diets. Many eat what the pay want and the amount of carbs they want and deal with it. It’s all personal choice.
 
NewTD2 said:
My DN said that I might be Type 1.5 (LADA).

The tests will be carried out in January.

I do not want to be shocked so I would like to learn from you how I can best prepare myself and cope with it.

Please advice, thanks.

Andrew
Click to expand...
Hi. There are various LADAs on this forum including @catapillar who may also wish to add comments. If you are diagnosed as LADA then you will be somewhere along the honeymoon stage where, sadly, the pancreatic cells are failing. Some tablets such as Gliclazide can help for a while but not advisable long-term as they are suspected of speeding failure. I was on full dose Gliclazide for more than 5 years which was not a good idea. The honeymoon period can last weeks into years and you can't tell how long. The HBA1C test will guide the GP/DN. You will need to go onto insulin when the HBa1C goes above, say, 7.5% (see NICE guidelines). You should be put onto the 'Basal/Bolus' regime which means two insulins one '24 hour' one (Basal) and one meal-time one (Bolus). This means 4 to 5 injections per day. This may sound awful but it isn't and it's a relief as insulin really does give good blood sugar control with very little side effects apart from the risk of hypos which can be serious. With experience and balancing the insulins and matching to meal-time carbs you can avoid the worst hypos. Keeping the carbs down helps reduce swings into hypos and avoids weight gain thru too many carbs. Hope that helps a bit and do ask any specific questions.
 
Daibell said:
Hi. There are various LADAs on this forum including @catapillar who may also wish to add comments.
Click to expand...

I don't have LADA. I was put straight on insulin and never came off it. I might have been diagnosed at 25, but there was nothing especially impressive about my honeymoon.
 
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