Possible type 3c... Frustrated and seeking advice

[AmberRenee78]

I have only heard of type 3c by reading the posts on this website and was stunned when I realized this might be me too. Any feedback on where to find good info and how best to deal with it would be most appreciated.

I was diagnosed with EPI a few months ago at age 40. Was diagnosed with type 2 diabetes at age 23. But my entire childhood had hypoglycemia, and actually had an episode where I had a brief seizure because my sugar was so low. I also have a history of low calcium levels and brittle bones since childhood (which we're only now wondering if it may have been partially the fault of EPI?).

Most recently, my GP has been in charge of monitoring my diabetes, but is reluctant to prescribe more than 30 units of insulin because he doesn't want my body to get used to it... Like I should be able to control whether or not I need insulin. He has me on 1k mg metformin and 100 mg Januvia daily, and 2ml bydureon injectable weekly. My A1c has been at a steady 7.8 for the past year and his only advice is to diet and exercise more.

I'm highly frustrated and would really appreciate some feedback and encouragement. I keep a food journal and really do keep things strict. It just doesn't seem to matter. My blood sugars are bouncing around so much and it makes me frustrated that the doctor apparently thinks I'm just eating cake while lying in bed all day.

And there's so much conflicting recommendations about diet. My GP advises no grains whatsoever, low carb, low glycemic index diet. A couple of friends who are nutritionists say that complex organic grains are good, low fat is terrible because it contains additives and chemically altered things that promote diabetes. But now I have borderline high cholesterol so I guess it is recommended I don't have fats of any sort. I feel like I'm stuck with organic chicken, broccoli, and lemon water.

Just looking for a little feedback on my frustrating issues. Thanks for letting me vent!

 

[DCUKMod]

I have only heard of type 3c by reading the posts on this website and was stunned when I realized this might be me too. Any feedback on where to find good info and how best to deal with it would be most appreciated.

I was diagnosed with EPI a few months ago at age 40. Was diagnosed with type 2 diabetes at age 23. But my entire childhood had hypoglycemia, and actually had an episode where I had a brief seizure because my sugar was so low. I also have a history of low calcium levels and brittle bones since childhood (which we're only now wondering if it may have been partially the fault of EPI?).

Most recently, my GP has been in charge of monitoring my diabetes, but is reluctant to prescribe more than 30 units of insulin because he doesn't want my body to get used to it... Like I should be able to control whether or not I need insulin. He has me on 1k mg metformin and 100 mg Januvia daily, and 2ml bydureon injectable weekly. My A1c has been at a steady 7.8 for the past year and his only advice is to diet and exercise more.

I'm highly frustrated and would really appreciate some feedback and encouragement. I keep a food journal and really do keep things strict. It just doesn't seem to matter. My blood sugars are bouncing around so much and it makes me frustrated that the doctor apparently thinks I'm just eating cake while lying in bed all day.

And there's so much conflicting recommendations about diet. My GP advises no grains whatsoever, low carb, low glycemic index diet. A couple of friends who are nutritionists say that complex organic grains are good, low fat is terrible because it contains additives and chemically altered things that promote diabetes. But now I have borderline high cholesterol so I guess it is recommended I don't have fats of any sort. I feel like I'm stuck with organic chicken, broccoli, and lemon water.

Just looking for a little feedback on my frustrating issues. Thanks for letting me vent!

Amber, I am assuming your EPI is exocrine pancreatic insufficiency, as opposed to a couple of their less likely potentials?

I too would find your GPS attitude to be worrisome. He does want you to have more of what your body appears unable to produce in case you get used to it?

In your shoes, I'd be basking for a specialist opinion, and a referral to a suitably qualified endocrinologist. Every NHS is patient is entitled to a second opinion, and you may, should you wish to name the person whose opinion you would like.

My GP informed me of this right when we were not getting to the bottom of something she freely admitted to feeling out of her depth on. I did my research and went off to see the named person of my choice. For completenes, that person doesn't have to be from your area.

Many people with diabetes, per se, find dealing with grains a challenge, and the Endo I saw, as part of my second opinion (which was for an hormonal thing, not diabetes), recommended I go gluten free, and folks with autoimmune issues tend to do very well on it. I don't actually have any diagnosed AI issues, but I do feel and function very well when gluten free.

You have a lot of unanswered questions around at he moment.

In your shoes, I'd want to talk to someone very experienced in EPI, then take it from there. I'd be expecting that person to run a significant raft of tests.

In general terms, you could find a reduced carb diet couldn't calm the blood glucose swings a bit, but if your body struggles to produce insulin, it may not be the whole answer.

Good luck with it all.

 

[AmberRenee78]

Thank you! You are correct sussing out that EPI was for Exocrine Pancreatic Insufficiency. And I too felt that my GP was getting beyond his knowledge, but it has just been so frustrating. I will go back to my gastroenterologist who diagnosed the EPI and try to get a referral to an endocrinologist she recommends.

 

[Tophat1900]

Thank you! You are correct sussing out that EPI was for Exocrine Pancreatic Insufficiency. And I too felt that my GP was getting beyond his knowledge, but it has just been so frustrating. I will go back to my gastroenterologist who diagnosed the EPI and try to get a referral to an endocrinologist she recommends.

I think that is the right thing to do, get that referral. It seems some GP's are not capable of dealing with diabetes in general, let alone type 3c. If you can't digest food properly and require digestive enzymes like Creon and your pancreas isn't quite making enough insulin then I'd say type 3c is very likely. The pancreas just isn't working properly.

As far as diet goes, I would never describe complex grains as good. Low fat is bad because you are denying your body essential fatty acids. Until you get things sorted out with an endo, and various tests for pancreatic function, just see what fats you can tolerate if they are a problem digestive wise. Cheeses, nuts, butter, avocados? Personally, I don't cut the fat off meats and my lipids have always been really good. They were terrible when I ate a high carb diet. So I can really only recommend low carbing. My blood glucose control is always at it's most stable when following a low carb diet. However, if you are on certain diabetic medications that lower blood glucose levels you do have to be really careful and monitor glucose levels if you do low carb. Your numbers may drop very low at times.I don't understand what your doctor is talking about in regards to insulin, doesn't want you to get used to it? Either you need it or you don't.

Do you know what your cholesterol results are, a full lipid panel where you fast for around 12hrs provides all the info you need.

Anyway, good luck getting to see an endocrinologist asap.

 

[AmberRenee78]

Thank you! Yes, I take Creon and have terrible issues without it. And I've just been used to the low fat, low carb, diabetic friendly diet for so long... It's obvious things need to change so I'm glad for the encouragement to take that next step.

My doctor has this idea that insulin is a last resort and that most diabetics (especially type 2) should be able to get by with diet and exercise and medications other than insulin. He's apparently of the opinion that people get lazy and don't follow recommended diets if they know they can just bump their insulin dose and have an extra piece of cake. He did say one time that my body will become more dependent on insulin as the only solution if he just started allowing me to take more. And I honestly understand some of his reasoning in that I know diabetics who abuse their bodies and don't follow diets, but that's not me.

Thanks again for the feedback!

 

[Tophat1900]

Yeah, taking creon is all about figuring out what dose works for you for food and not forgetting to take it.... lol
Some people use a different digestive enzyme if creon doesn't work.

Hoping you get to see a good endo soon and get the tests you need. It sounds like your gp is basing his opinion on insulin use on some sort of ideology like it's a drug addiction if you use more. If you need more, you need more, it's a physical issue beyond our control with t3c and if you don't need more yet then so be it, but I'm sure the endo will figure out that issue for you.

 

[DCUKMod]

Thank you! Yes, I take Creon and have terrible issues without it. And I've just been used to the low fat, low carb, diabetic friendly diet for so long... It's obvious things need to change so I'm glad for the encouragement to take that next step.

My doctor has this idea that insulin is a last resort and that most diabetics (especially type 2) should be able to get by with diet and exercise and medications other than insulin. He's apparently of the opinion that people get lazy and don't follow recommended diets if they know they can just bump their insulin dose and have an extra piece of cake. He did say one time that my body will become more dependent on insulin as the only solution if he just started allowing me to take more. And I honestly understand some of his reasoning in that I know diabetics who abuse their bodies and don't follow diets, but that's not me.

Thanks again for the feedback!

Oh dear. A judgemental GP is bad enough, but one appearing to tar you with a brush you don't even own (you're not T2, but T3c) makes it all the worse. Personally, I might feel like strangling him.

Honestly, it sounds like time to ask for that referral.

 

[Tophat1900]

Oh dear. A judgemental GP is bad enough, but one appearing to tar you with a brush you don't even own (you're not T2, but T3c) makes it all the worse. Personally, I might feel like strangling him.

Honestly, it sounds like time to ask for that referral.

Personally, if it were me I'd find another GP. He has no business denying someone insulin if they need it.

 

[DCUKMod]

Personally, if it were me I'd find another GP. He has no business denying someone insulin if they need it.

Whilstr I agree with you to an extent, there is no assurance the next GP in line would have any expanded knowledge of the rarer sorts of diabetes. As I understand matters, AmberRenee's condition isn't exactly common or garden stuff.

Personally, I'd rather see a Consultant and have my GP build up his knowledge along the way. That way others benefit too.

@AmberRenee78 - Where are you located? Do you have a local diabetes centre?

 

[Tophat1900]

Whilstr I agree with you to an extent, there is no assurance the next GP in line would have any expanded knowledge of the rarer sorts of diabetes. As I understand matters, AmberRenee's condition isn't exactly common or garden stuff.

Personally, I'd rather see a Consultant and have my GP build up his knowledge along the way. That way others benefit too.

@AmberRenee78 - Where are you located? Do you have a local diabetes centre?

That is true, I don't disagree with any of that... you just have to hope it works out that way for AmberRenee78 sake.

 

[AmberRenee78]

I'm located in Tennessee in the US. And in my search for a recommended endocrinologist, I've been told that we are a bit deficient in the number of doctors who specialize in the field. There is an office nearby that labels itself the university diabetes and endocrinology center, but I've been given varying reports on their knowledge and treatment. Plus there's my insurance coverage to consider as to who will actually allow me to be a patient. I've researched and found one that makes me hopeful, so I've asked my GP to send a referral. Waiting on that now.

 

[DCUKMod]

I'm located in Tennessee in the US. And in my search for a recommended endocrinologist, I've been told that we are a bit deficient in the number of doctors who specialize in the field. There is an office nearby that labels itself the university diabetes and endocrinology center, but I've been given varying reports on their knowledge and treatment. Plus there's my insurance coverage to consider as to who will actually allow me to be a patient. I've researched and found one that makes me hopeful, so I've asked my GP to send a referral. Waiting on that now.

I thought you were overseas, which makes thing sometimes easier and sometimes harder.

Good luck with it all Amber.

 

[Sparkydillo]

Hi everyone
It’s been a while since I last posted a message but since my last I have followed my specialist diabetes doc and pancreatic specialist both based at St James Hospital.Leeds.
I self dose my creon depending on what I eat I found that I could take too little which caused me pain but if I took slightly too much I was fine.
I am also on insulin because I only have the head of my pancreas left because it decided to dissolve itself!!
My diabetes specialist was very happy with my last 6 month blood results which were 7.
As for diet I was told to eat a variety of foods but not to do low fat or low carbohydrates because my body needs to absorb as many nutrients as possible which it does struggle to do.
Type 3c diabetes is scary because depending what you eat and how fast it is absorbed into your body can change daily so your blood sugars can go up and down erratically so it can be a full time job just to monitor blood.
I have found the freestyle libre is a god send since I started on this I check my blood 20 times a day and adjust as nessercary which is working very well at the moment.
I DO RECKON YOU DO REQUIRE A SPECIALIST FOR BOTH PARTS OF THE CONDITION DIABETES AND PANCREAS BECAUSE BOTH REQUIRE MONITORING.

As you can see I’m not very good with exact words and numbers but all is going ok at the moment

 

[JohnH2019]

Thank you! Yes, I take Creon and have terrible issues without it. And I've just been used to the low fat, low carb, diabetic friendly diet for so long... It's obvious things need to change so I'm glad for the encouragement to take that next step.

My doctor has this idea that insulin is a last resort and that most diabetics (especially type 2) should be able to get by with diet and exercise and medications other than insulin. He's apparently of the opinion that people get lazy and don't follow recommended diets if they know they can just bump their insulin dose and have an extra piece of cake. He did say one time that my body will become more dependent on insulin as the only solution if he just started allowing me to take more. And I honestly understand some of his reasoning in that I know diabetics who abuse their bodies and don't follow diets, but that's not me.

Thanks again for the feedback!

Not sure why low fat is necessarily a good thing. Seems like old school thinking. When you are taking creon, you are able to break down fat, which is absolutely essential. The whole 'Primal' lifestyle really helped me. Here are a few books I bought on Amazon that really helped me with my EPI and pre-diabetes. If you have questions, let me know.

Primal Pancreas - Great pancreas health, EPI and nutrient info
The New Primal Blue Print - Great food and lifestyle info
Primal Body, Primal Mind - Great food info

Mark Sisson also has a lot of free info on his websites marksdailyapple and primal blue print podcasts.