quite new to type 2

[kalinka]

Hi I have just joined up.I have type 2 and Graves disease and struggling a bit with diet I can,t have some of the regular medication as I have lost too much weight with the graves.I just wondered if there are people out there with the same problems and maybe would be kind enough to share some tips.thankyou

 

[rebrascora]

Hi and welcome.
Sorry to hear you have got the D diagnosis on top of another condition. I have just looked up Graves and it is an autoimmune condition affecting the thyroid, for anyone else reading this who had no idea like me. It is worth understanding that the categorization of diabetes is based on the cause. Type 1 is also autoimmune. Type 2 diabetes is metabolic. Unfortunately if you are a mature adult, most GPs assume you must be Type 2, particularly if you are a bit overweight but sometimes not, however that is just an assumption and mostly a bit of a cost saving/lazy one and sometimes sadly based on ignorance as some GPs hold the incorrect belief that Type 1 only exhibits in children and young people. There is no specific test for Type 2. The general diabetes test is the HbA1c test which gets you a diagnosis of diabetes if your result is above 47 but doesn't tell them which type. If your levels are very high and symptoms have come on suddenly and particularly if you have started to lose weight without trying, these are red flags for possible Type 1. Added to that, autoimmune conditions often like to congregate in the same body and wreak havoc..... I suppose if you have a tetchy immune system, it may decide to attack more than one healthy part of your system.... hence people with one cautoimmune condition are at a significantly higher risk of developing more. With you having graves and mentioning about weight loss, this makes me wonder if you might be a misdiagnosed Type 1. There are many of us more mature adults here on the forum who experienced this and it is important that you get the right diagnosis for a number of reasons, mostly in order to get the right treatment, but you are also entitled to more support and tech if you are Type 1. Whilst this is very unfair to Type 2s, you can only fight your own battles as an individual so it might be worth asking a few pertinent questions about why they think you are Type 2 rather than Type 1 and request either a referral to the diabetes clinic or testing for Type 1....
which is GAD antibody and C-peptide tests.

Can you tell us a bit about how your diagnosis came about to see if any of this ties in? Were you symptomatic or was it picked up on a routine blood test? If symptomatic, what were they? Do you know what your HbA1c result was at diagnosis and what if any medication have they given you for it?

Sorry, lots of questions and information, but getting the correct diagnosis early on is really important. We have members here who have spend years and one more than a decade misdiagnosed and it is harder to get the right diagnosis the longer it goes on because sometimes the antibody test shows negative after a long enough time.

I might be totally wrong, but you mentioned 2 red flag issues which would suggest you might be Type 1, so important to clarify that.

It can make a big difference to dietary advice too.... If you are Type 2 then generally it is about either losing weight and/or reducing your carb intake. Depending on what medication if any you have been given. Some medication means that a low carb diet can be dangerous. I don't know how a low carb diet will impact with your Graves diet but I imagine from your comment that you don't have weight to lose, so that aspect would be challenging.
If you are Type 1, then you can eat pretty much anything (within reason) provided that you balance what you eat with an appropriate amount of insulin. Of course you likely don't want to consider injecting insulin but if you are Type 1 then sooner or later you will need to as your insulin production wanes. I know I shed a few tears when I realised that I was going to need insulin but it is now my new way of life and you learn to manage it and we are so incredibly fortunate to have modern insulins and really easy to use injector pens with teeny tiny needles and fantastic tech to monitor our levels and some people even have tiny little insulin pumps that dispense the insulin instead of injecting it. And the tech is advancing all the time to make our lives easier so we have it so much better than some of our members who were diagnosed 30, 40 or 50 years ago!


Anyway, just wanted to make those comments about the info you have provided so far but if you can tell us a bit more about your diagnosis and medication then that will help us to advise you better.

 

[kalinka]

Hi and welcome.
Sorry to hear you have got the D diagnosis on top of another condition. I have just looked up Graves and it is an autoimmune condition affecting the thyroid, for anyone else reading this who had no idea like me. It is worth understanding that the categorization of diabetes is based on the cause. Type 1 is also autoimmune. Type 2 diabetes is metabolic. Unfortunately if you are a mature adult, most GPs assume you must be Type 2, particularly if you are a bit overweight but sometimes not, however that is just an assumption and mostly a bit of a cost saving/lazy one and sometimes sadly based on ignorance as some GPs hold the incorrect belief that Type 1 only exhibits in children and young people. There is no specific test for Type 2. The general diabetes test is the HbA1c test which gets you a diagnosis of diabetes if your result is above 47 but doesn't tell them which type. If your levels are very high and symptoms have come on suddenly and particularly if you have started to lose weight without trying, these are red flags for possible Type 1. Added to that, autoimmune conditions often like to congregate in the same body and wreak havoc..... I suppose if you have a tetchy immune system, it may decide to attack more than one healthy part of your system.... hence people with one cautoimmune condition are at a significantly higher risk of developing more. With you having graves and mentioning about weight loss, this makes me wonder if you might be a misdiagnosed Type 1. There are many of us more mature adults here on the forum who experienced this and it is important that you get the right diagnosis for a number of reasons, mostly in order to get the right treatment, but you are also entitled to more support and tech if you are Type 1. Whilst this is very unfair to Type 2s, you can only fight your own battles as an individual so it might be worth asking a few pertinent questions about why they think you are Type 2 rather than Type 1 and request either a referral to the diabetes clinic or testing for Type 1....
which is GAD antibody and C-peptide tests.

Can you tell us a bit about how your diagnosis came about to see if any of this ties in? Were you symptomatic or was it picked up on a routine blood test? If symptomatic, what were they? Do you know what your HbA1c result was at diagnosis and what if any medication have they given you for it?

Sorry, lots of questions and information, but getting the correct diagnosis early on is really important. We have members here who have spend years and one more than a decade misdiagnosed and it is harder to get the right diagnosis the longer it goes on because sometimes the antibody test shows negative after a long enough time.

I might be totally wrong, but you mentioned 2 red flag issues which would suggest you might be Type 1, so important to clarify that.

It can make a big difference to dietary advice too.... If you are Type 2 then generally it is about either losing weight and/or reducing your carb intake. Depending on what medication if any you have been given. Some medication means that a low carb diet can be dangerous. I don't know how a low carb diet will impact with your Graves diet but I imagine from your comment that you don't have weight to lose, so that aspect would be challenging.
If you are Type 1, then you can eat pretty much anything (within reason) provided that you balance what you eat with an appropriate amount of insulin. Of course you likely don't want to consider injecting insulin but if you are Type 1 then sooner or later you will need to as your insulin production wanes. I know I shed a few tears when I realised that I was going to need insulin but it is now my new way of life and you learn to manage it and we are so incredibly fortunate to have modern insulins and really easy to use injector pens with teeny tiny needles and fantastic tech to monitor our levels and some people even have tiny little insulin pumps that dispense the insulin instead of injecting it. And the tech is advancing all the time to make our lives easier so we have it so much better than some of our members who were diagnosed 30, 40 or 50 years ago!


Anyway, just wanted to make those comments about the info you have provided so far but if you can tell us a bit more about your diagnosis and medication then that will help us to advise you better.

Hi, how very helpful of you to reply.I was diagnosed with type 2 about 4 years ago and managed with diet to keep it under control.I was careful what I ate and this seemed to work.However, in october last year I started to lose alot of weight very quickly.I was around 10 1/2 stone in october and by the end of november I went to the doctor.She reffered me for a CT scan as I also have chronic pancreatits.The worry of course, was cancer.Following blood test to check kidneys pre-scan,it was discovered that I had a seriously overactive thyroid which had developed very quickly.I have free T3 type.I was then seen by an endocrynologist who explained a link with diabetes among other things!By april I was taking anti-thyroid medication.Initially,I was given metformin for diabetes,but could not tolerate it at all.July saw my weight drop to 7st.13.althought the diabetes was still high. Just this week I have been given a blood testing kit.My blood levels are up and down quite erratically,between8 and 21.The diabetes nurse at my medical practice is excellent and she thinks I may need insulin but want a week,s testing first.I now have metform slow release which is suiting me and also worth mentioning that I cannot take some of the diabetes medication,partly because of the damage to my pancreas and also because the medics don,t want me to lose more weight. I havn,t really got to grips with food and blood levels.What to do if it,s too high and basically, what to actually eat to keep well.I think that is about it.Thankyou so much for taking the time to reply to me.yours Cath

 

[Leadinglights]

Is your weight loss due to the thyroid issue or is is possible that the pancreatitis is affecting your ability to absorb nutrients from foods because you are lacking in pancreatic enzymes as well as possibly not producing enough insulin so blood glucose is high.
As you now have a monitor you may find it useful to check out your meals and their affect on your blood glucose by testing before you eat and after 2 hours, you should not see more than a 2-3mmol/l increase if you have tolerated the carbs well.
I am not suggesting you make changes to your diet at this stage as your nurse wants to see what is happening but for future reference you may find this link useful for lower carb meals if that is something that is suggested. https://lowcarbfreshwell.com/
Many of the dietary approaches for managing blood glucose are aimed at weight loss but by having more protein and healthy fats that can help maintain or increase weight if you need to.

 

[everydayupsanddowns]

However, in october last year I started to lose alot of weight very quickly.I was around 10 1/2 stone in october and by the end of november I went to the doctor.She reffered me for a CT scan as I also have chronic pancreatits.

Gosh what a lot you’ve been going through @kalinka !

Hope you get to the bottom of your weight loss. Have you had your CT scan now?

Is your pancreatitis one of the reasons for your diabetes? I wonder if that might mean you may have Type 3c? If so you may need to be treated more like T1? @eggyg or @Proud to be erratic may be able to offer some suggestions?

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

 

[kalinka]

Is your weight loss due to the thyroid issue or is is possible that the pancreatitis is affecting your ability to absorb nutrients from foods because you are lacking in pancreatic enzymes as well as possibly not producing enough insulin so blood glucose is high.
As you now have a monitor you may find it useful to check out your meals and their affect on your blood glucose by testing before you eat and after 2 hours, you should not see more than a 2-3mmol/l increase if you have tolerated the carbs well.
I am not suggesting you make changes to your diet at this stage as your nurse wants to see what is happening but for future reference you may find this link useful for lower carb meals if that is something that is suggested. https://lowcarbfreshwell.com/
Many of the dietary approaches for managing blood glucose are aimed at weight loss but by having more protein and healthy fats that can help maintain or increase weight if you need to.

Thankyou so much,my pancreas, whilst grumbling on a bit doesn,t seem to be the cause of the diabetes, however obviously doesn,t help.I have to be careful about fat intake.Hog roast is out!I tried that one and ended up back in hospital.Lesson learnt!I have checked out your link which is very helpful,as this is where I am struggling to understand the whole thing.Thankyou very much

 

[kalinka]

Gosh what a lot you’ve been going through @kalinka !

Hope you get to the bottom of your weight loss. Have you had your CT scan now?

Is your pancreatitis one of the reasons for your diabetes? I wonder if that might mean you may have Type 3c? If so you may need to be treated more like T1? @eggyg or @Proud to be erratic may be able to offer some suggestions?

What is type 3c diabetes?

You may have heard of the more common types of diabetes like type 1, type 2 and gestational. But there are actually many other types of diabetes that aren't as well known. Type 3c diabetes develops because of the damage to the pancreas, which can happen for a few different reasons. And although...

www.diabetes.org.uk

I have had my scan and shows up chronic pancreatitis,I have had some blood tests on thursday and will have results this week.This is to test pancreatic functions,Liver and kidneys fine.I will see what comes from thursdays appointment and then post some more.I really appreciate the help of the members thankyou

 

[rebrascora]

I have had my scan and shows up chronic pancreatitis,I have had some blood tests on thursday and will have results this week.This is to test pancreatic functions,Liver and kidneys fine.I will see what comes from thursdays appointment and then post some more.I really appreciate the help of the members thankyou

If your scan shows chronic pancreatitis then I would not rule out this as being the cause of your diabetes either and probably more likely than you being Type 1. If they can see it on the scan, then there is inflammation or necrotizing and either can easily impact your insulin production meaning you would be Type 3c. Pancreatitis can also cause problems wih the signalling between your pancreas and liver, meaning that the liver doesn't get messages to switch it's glucose release on and off as these 2 organs work together to balance BG. Pancreatitis could also cause the weight loss, so it is really good that they are doing tests around that. You don't mention any bowel issues (unless the hog roast issue was a reference to that) and I always wonder if people are not having problems or too polite/embarrassed to mention them, but if you are unable to produce enough digestive enzymes, then bowel movements can become unpleasant in lots of ways (really bad smell, odd colour usually lighter brown/yellow I believe, sometimes explosive or greasy. I believe a faecal elastase test is an important test to check for Pancreatic Enzyme Insufficiency (PEI) so ask about that if it isn't one of the tests.... You will likely know if they have requested a stool sample.

Anyway, not wanting to overload you with info but really important to understand these things before your appointment so that you can ask the right questions. Sadly the NHS is not functioning at it's best at the moment and so you need to be knowledgeable and proactive in getting the right diagnosis and treatment, even if it means challenging a doctors thinking.... in a polite way of course. If they know you are knowledgeable, it makes them have to think a bit harder and perhaps check up on things that they would not have considered themselves.

Good luck and let us know how you get on.

 

[Proud to be erratic]

Hello @kalinka,
I'm T3c after a total pancreatectomy to deal with a cancerous tumour, so my circumstances are pretty different to yours. The thing we might have in common is that I am definitely not T1; I don't produce insulin (hence as if T1) but not because of the autoimmune condition, but because of damage to my pancreas (its removal - fairly drastic damage!). Your pancreatitis could also have brought about your disruption to your insulin production and so far no hint that you could be T1.

I'm also definitely not T2; there is nothing unduly different about my body's insulin sensitivity. I guess that is not definite for you - ie you could have a much stronger insulin resistance which is preventing you from making full use of whatever insulin you are producing. But in my NON-MEDICAL view it seems far more likely that pancreatitis has disrupted your insulin production, than the classic T2 insulin resistance. The significance of this is because classic T2 usually needs oral meds and diligent low carb diet, whereas pancreatitis almost certainly can't be helped by oral meds, which can only be equivalent to flogging a dead horse and prolonging the difficulty; also doesn't necessarily need a low carb diet. Indeed, if your insulin production is compromised by your pancreatitis, a low carb diet (even a strict keto diet) won't help enough - but will put you into all sorts of 'workarounds' and unnecessary disruption to daily living.

In the final analysis our bodies and our brains in particular, need glucose. We normally get that from metabolism converting all carbohydrates into glucose; under keto or very low carb states our body will convert proteins and fats into glucose and this can be made to work, but needs a certain amount of more effort. But, even with glucose from proteins and fats we still need some insulin and normal insulin sensitivity, not huge insulin resistance. [Insulin resistance is the reverse of insulin sensitivity]. So for me a keto diet won't solve my missing insulin production and nor will it for you, if your pancreatitis is the nub of your problem.

You could, in theory, be treated as if T2 and (just!) needing extraneous insulin - which does occur for some T2s. But to me that is just a lazy "cop out". If pancreatitis is the cause of your diabetes then you will become someone with 2 significant ailments: pancreatitis and diabetes. These conditions will need different management and the food sensitivity for each will each cause their own challenges; each ailment will from time to time bring their own unique medical difficulties and, to me, this all adds up to myself (and you) needing to be under the care of a Specialist Hospital based Team - who I now don't need continously or even frequently, but do need help from sometimes.

LEST I am painting an overly gloomy or depressing picture DON'T PANIC. I think it is important to try and give you a realistic picture (manage your expectations). But there are an increasing number of people increasingly successfully managing pancreatitis and the technology, such as CGM or even pumping (and of course better insulins and vastly superior needles in relatively recent years) all helping hugely, with diabetes in particular. Completely unfairly, but an inescapable reality at present, the NHS arrangements (driven by NICE Guidelines) mean that to get the best access to the latest tech it is helpful to be seen as T3c but "as if T1", rather than T2.

The tiny number of people who are T3c means we don't get recognised or understood amidst the much greater numbers of T1s and T2s. Also, since NICE have dictated that T1s are treated by Specialists and all T2s treated in GP Surgeries, it follows that General Surgeries and their Practice Nurses simply don't have the knowledge or experience to be able to successfully assist with unusual other Types of diabetes.

To conclude for now: if pancreatitis is the cause of your diabetes we will probably always have some differences with our T3cs: the total removal of my pancreas means I have absolutely no pancreatic functions; your pancreatitis may well either now or in due course stop all of your insulin production, but not necessarily stall of the other pancreatic hormones from working. I need Creon to replace my missing digestive enzymes and that may well be essential for you now. But you may continue to produce Glucagon and Somatostatin, 2 hormones that help balance insulin against glucose released from the liver's store. There are forum members who have come to D from pancreatitis, including @eggyg , @soupdragon and more recently @zippyjojo - who currently is successfully not needing extra insulin and proving that extraneous insulin is not inevitable.

 

[Proud to be erratic]

@kalinka, as @rebrascora says, once you have had time to digest all this "stuff" we are pushing at you do not hesitate to ask more questions. Nothing is stupid, there is a huge amount to take on board and the time needed at your forthcoming appointment is precious, needing to allow you to get the best understanding of the results along with the best appropriate treatment.

 

[kalinka]

Thankyou so much to everyone who has replied.I willpost again after results and appointment