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Slight Impostor!

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Lizzielogs

Lizzielogs

New Member
Relationship to Diabetes
Type 2
Morning all
As I say I am a slight impostor as I have joined the forum for my husband as I am the head cook, shopper, and bottle washer in the household.
Husband has just been diagnosed with type 2 and we have so far waited 5 weeks to see the diabetic nurse for his first consultation and still have another 3 to go. Didn't get any info from the doctors apart from take 2 of these tablets before your evening meal so we are totally in the dark! He is a cyclist and has regularly taken whey protein as a muscle building method which we now find is full of carbs and sugar, to boot he also has acute pancreatitis so cannot digest the proteins in meat!!
Hoping to look through previous posts and see what info I can glean!

Lovely to 'meet' you all, from Deal in Kent
 
Welcome to the forum, there are a number of people who join to support their partner.
I am surprised you have not had more support from your GP as with the complication of acute pancreatitis suggests maybe a different approach may be needed. I assume to tablets are metformin as that is usually the first medication given on diagnosis. There are a few people who have pancreas issues who may be able to make suggestions to you so I will tag them, @eggyg and @Proud to be erratic being a couple who come to mind.
 
Hi Lizzie and welcome.

So pleased you have come to the forum to provide help and support to your husband. Hopefully he is on board with making some changes otherwise you may have to be a bit creative and sneaky with meals. 😉.

That said, I have doubts about his diagnosis and I wonder if you can give us a bit more info about his health situation....

Firstly, you mention acute pancreatitis. Hopefully he isn't suffering an episode of that at the moment (extremely painful I believe) but when was that and has he had any scan's of his pancreas? If he is struggling to digest food has he been offered digestive enzymes (Creon) to help with that?
Pancreatitis can lead to long term damage to the pancreas, which not only produces digestive enzymes but also insulin. If he is otherwise fit and a healthy BMI I would suspect that the pancreatitis may be the cause of his diabetes which would make him Type 3c rather than Type 2 which is usually caused by a build up of fat in the body and/or around the liver and pancreas (visceral fat) which means that some slimmer diabetics can be Type 2 if they have developed this visceral fat. Type 1 diabetes is where the immune system mistakenly attacks and kills off the beta cells in the pancreas which produce insulin. Most Type 2 diabetics are able to produce sufficient insulin at least in the early days of diagnosis and their bodies may in fact be producing surplus, because their cells have become resistant to it so it needs to produce larger quantities to overcome that resistance. Type 1 and Type 3c diabetics will eventually struggle to produce enough of their own insulin because of damage and when they reach that stage, they need to inject insulin to survive. The need for insulin may happen quite slowly over months or years and a low carb diet may enable that to be extended or it may be sudden. With Type 3c there is generally a more gradual increase in BG levels over time unless there is surgery to remove the pancreas in which case you are likely to become insulin dependent straight away.

Which medication has he been given and do you know his HbA1c test result? This is the test which is used to diagnose diabetes and will usually be a number in excess of 47 but can be into 3 figures if things have gone badly awry.

If the tablets are Metformin then your husband would be well advised to take them mid meal or after but certainly not before unless there was some specific reason the doctor suggested that. They are known to cause digestive upset, so most people find taking them mid meal mitigates at least some of that effect. It is also unusual to be started on 2 straight away. Normally one for a week and then build it up, again this is to minimize any digestive upheaval.
Anyway, I hope your husband isn't suffering any ill effects from them if he is on Metformin.

As regards diet for Type 2, there are two main options....

Following a very low CALORIE diet (the Newcastle diet or Fast 800) which is a short term 800calorie diet designed for rapid weight loss which helps to burn off that visceral fat and potentially put the diabetes into remission and usually involves meal replacement shakes.

Following a low CARBOHYDRATE way of eating. This tends to be a long term strategy for management of diabetes but can have the same result of putting you into remission for some people.


If your husband is Type 3c then the first option may not be helpful but a lower carbohydrate diet may help him to manage on the insulin production he still has and take a bit of strain off his pancreas in that respect. That said, if is insulin production is grinding to a halt, early introduction of insulin can take the strain off it and would enable him to eat a more varied diet..... so there are two sides to the coin and both can have positives and negatives depending upon your circumstances and outlook.

I think your difficulty will be in getting a proper diagnosis and I would suggest you push for a referral to a specialist diabetes clinic/endocrinologist or at least a pancreatic scan making a point about his pancreatitis being a potential factor in his diabetes.

Anyway, those are just a few points that occurred to me when reading your post.....as a non medically qualified Type 1 member of this forum.... ie a Joe Bloggs member of the public who may or may not know what I am talking about.

I am going to tag a few Type 3c members who may have more insight.... @soupdragon who I think is a fellow pancreatitis sufferer, @Proud to be erratic and @eggyg They will hopefully correct me if I have typed anything amiss or given duff info. 🙄

Hope some of the above is useful. Please feel free to ask any questions that you have as we have a huge wealth of knowledge and experience on the forum to tap into.
 
Many thanks especially to 'Rebrascora' I have learned more about diabetes from you than in hours of research!!

That said, I have doubts about his diagnosis and I wonder if you can give us a bit more info about his health situation....

Paul is as fit as a fiddle and the perfect weight for his height but with a little tummy as befits his 70 years, he cycles 3 or 4 times a week - regularly 30 miles.

Firstly, you mention acute pancreatitis. Hopefully he isn't suffering an episode of that at the moment (extremely painful I believe) but when was that and has he had any scan's of his pancreas? If he is struggling to digest food has he been offered digestive enzymes (Creon) to help with that?

He had an underdeveloped pancreas from a premature birth and has been on Creon for many, many years and has slight flare ups, one of the side effects of the pancreatitis is constipation which he manages with silium husk.


Pancreatitis can lead to long term damage to the pancreas, which not only produces digestive enzymes but also insulin. If he is otherwise fit and a healthy BMI I would suspect that the pancreatitis may be the cause of his diabetes which would make him Type 3c rather than Type 2

The surgery has a diabetes nurse who we should have seen 5 weeks ago but has been delayed by Covid (us) and annual leave (her) and this morning we were phoned to say out appointment today was cancelled and we can't have an another till June 16th which was unacceptable so I phoned the doctor myself to complain. On the phone I stressed he had acute pancreatitis (thanks for your suggestion) and asked if could have type 3c and not type 2 and she agreed that this was probably the case and agreed the wait was unacceptable and has moved some appointments to see us (I retain info better than him) this coming Tuesday.

Which medication has he been given and do you know his HbA1c test result?

He has been given Metformin and after your suggestion he will take them mid meal as he has had indigestion recently (worse than normal) and after initial diarrhea for a couple of days he has settled with them well.
His HbA1c test was 121

I think your difficulty will be in getting a proper diagnosis and I would suggest you push for a referral to a specialist diabetes clinic/endocrinologist or at least a pancreatic scan making a point about his pancreatitis being a potential factor in his diabetes.

I have taken your advice and did ask the doctor for a pancreatic scan, she was more interested in starting him on something else and making an emergency appointment for him and did not answer me, however I will ask again on Tuesday - I am not the type to be fobbed off, we are pensioners and I have all the time in the world to make a nuisance of myself and complain till I get things done lol. She mentioned what I assume to be the finger prick test and other tablets but wants to see him first.

So, thanks again for the advice you both gave me, I am pleased to be able to understand a bit more about this and am armed with suggestions for a correct diagnosis.

Lizzy x
 
Great to hear you have managed to push for some action and you are prepared to keep pushing to get answers/appointments and appropriate treatments.

An HbA1c of 121 is way too high and he should have had much more support in this interim period and assessment of progress and review of medication. Do you know when his last HbA1c test was done (prior to this whopper!!) and if it was normal or, as sadly sometimes happens, raised but overlooked. Just wondering if things have suddenly come to a head with his insulin production or if there have been signs of things deteriorating for a while.
What lead to his diagnosis? Was he symptomatic or did it come about by a routine blood test/MOT? I would expect symptomatic at that level and did it come on suddenly or over a period of time if he was symptomatic?

Pleased to hear he hasn't had too much digestive upheaval but the patient information leaflet on Metformin advises taking it after food, not before due to it's common side effects but many of us found mid meal the best option to prevent/minimize indigestion and lower gut upset.

It sounds like they are considering starting him on Gliclazide if they are talking about different tablets and a Blood Glucose meter for testing finger prick blood. Unfortunately, if his problem is an inability to make enough insulin then the Gliclazide is like flogging a dying horse. It's action is to stimulate the pancreas to produce more insulin, but if it is currently struggling, this will be unlikely to help.... I am however making an assumption that his insulin production is failing. He may be a genuine Type 2 and it may work, but if there is no obvious improvement within a couple of weeks or he starts to deteriorate, then do push for insulin or get him to A&E if necessary.

I would also ask for a means of testing for ketones.... these will likely be strips to dip his urine. Ketones with high BG levels can lead to a very serious complication of diabetes called Diabetic Ketoacidosis or DKA. Type 2 diabetics are unlikely to suffer this but if he is Type 3c he could and it needs urgent hospital treatment, so monitoering ketones when his BG levels are mid teens or above is important to keep him safe.

Please keep us posted with progress and keep asking questions here on the forum but also with health care professionals. Knowledge is power. Being well informed is really important with diabetes particularly as many doctors and nurses just don't know enough or even worse, they think they know when they don't.

Good luck!
 
PS. I am a big fan of psyllium husk too for keeping things moving. I use it on a daily basis in combination with chia seeds which have a similar effect but are also high in Omega 3 fatty acids, so a bit of a super food all round. Drinking plenty of fluids is also very important particularly with these soluble fibre supplements.
 
Thanks for all that.................

An HbA1c of 121 is way too high and he should have had much more support in this interim period and assessment of progress and review of medication. Do you know when his last HbA1c test was done?

He has never had one before, I nagged and nagged for him to phone the doctor as he was constantly thirsty then needing to urinate urgently far more than was appropriate (both of those things have receded slightly), he was constantly tired and falling asleep at the drop of a hat in the day but (as usual) didn't (doesn't) sleep well at night... all this and other what seemed like minor things have been creeping on for a year or so. The doctor said he was sent a routine form to go in for a blood test a year ago but that was either a downright lie or the letter got lost in the post - we aren't the type of people to ignore doctors letters.

It sounds like they are considering starting him on Gliclazide if they are talking about different tablets and a Blood Glucose meter for testing finger prick blood. I am however making an assumption that his insulin production is failing. He may be a genuine Type 2 and it may work, but if there is no obvious improvement within a couple of weeks or he starts to deteriorate, then do push for insulin or get him to A&E if necessary.

Yes that sounds like the medication she mentioned and the finger prick. I will also ask for the Ketone tests on Tuesday.
Along with this I am going to be asking (again) for a pancreatic scan and also a referral to a dietician who understands acute pancreatitis in a diabetic..... he is still going on advice he was given in the 70s when he was first diagnosed (after ending up on life support more than once!) and I am sure advice and Creon have moved on a lot since then!

Again many thanks for your time and advice, I am so glad to have found this

Lizzy
 
Welcome @Lizzielogs (and your husband).
I have Type 3c diabetes due to acute pancreatitis. For me it was one severe episode of necrotising pancreatitis which caused my diabetes. I have very little useful pancreas left, which sounds similar to your husband's situation.

You may find reading the NICE guidelines on pancreatitis useful. They mention Type 3c diabetes due to pancreatitis. When damage to the pancreatitis is severe we should be treated in the same way as Type 1s, with insulin.

With such a high HBA1C you are absolutely right to be pushing for help and a referral to a hospital diabetes clinic.
As you mention, contact with an HPB dietician would also be helpful. I am under the care of a dietician following the pancreatitis and, in addition to helping with Creon dosing they also arrange detailed annual vitamin and mineral screening and bone density scans (due to the absorption issues).

I see that @rebrascora has given you some great advice on things that might indicate emergency help is needed.

Good luck with getting the referrals made and let us know if you have any more questions.
 
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Hello @Lizzielogs ,
I can't add much to the great advice that has already been offered. My route to T3c came from surgery to address pancreatic cancer and ended up with a total removal of my pancreas. So I know very little about progressive damage to the pancreas from things like pancreatitis.

One small observation is that 'diabetic nurses' in GP surgeries are not the same as Diabetic Specialist Nurses (DSNs) who work in hospital diabetes clinics in close liaison with the Endocrinologist Consultants. GP Practice diabetes nurses will inevitably know a bit more about diabetes than other medical practitioners, but usually are so-called because they are the designated focal point for patients with diabetes and do the annual reviews for those patients. They are dealing almost exclusively with T2s who are not receiving insulin and however well-intentioned they will generally have very little appreciation of the difficulties and subtleties of being 'insulin dependent'. My own Practice diabetes nurse, who is routinely brilliant in the business of nursing support in the Practice, has dealings with only 2 other insulin dependent patients, knew what a libre sensor was (but never seen one nevermind what sort of information it generated) and gracefully conceded she had limited understanding of T1 problems let alone T3c, from whatever cause of pancreatic damage.

If your husband should be redesignated as T3c be aware this is a miniscule proportion of the total diabetic population and not widely understood by any medical professionals. However it is definitely better to be T3c and treated as if T1, since it normally places you under the care of a hospital based DSN and reviewed by an Endocrinologist. Covid has played havoc with backlogs for all medical specialisations so how that pans out for your husband might still be a lottery.

Some T3cs aren't insulin dependent and it is tempting for the system to try to treat them as T2s; this might seem trivial, but the underlying reasons for T2 or T3c diabetes are fundamentally different and although the patient presents with similar symptoms, including an elevated HbA1c, the treatment needed will probably be different because the cause was different.

About dieticians: I first came under an HPB dietician at the Hospital for 13 days after my surgery. She, not surprisingly, really knew her stuff and gave me a lot of help. After I was discharged I was placed under a DSN in my local hospital; and a diabetes dietician in the same clinic, who proved to be less than helpful, with a fair understanding of my diabetic dietary needs in terms of carbohydrates and insulin, but totally unaware of my needs to achieve full digestion without any pancreas (which generates all of our digestive enzymes). Nor helping me deal with malabsorption and the consequent disconnect of carbs eaten versus carbs actually digested. Fortunately, because I had chemotherapy, the Macmillan dietician stepped up and proved to be a great help while I came under the Oncologist; but for 2 yrs I was all but bowel incontinent and eventually got referred back to an HPB dietician and a Gastroenterologist. My bowel problem has now rescinded. But my point is the dieticians I've encountered so far can sometimes be blinkered. Good ones are also in short supply apparently; the hospital that did my surgery spent many months trying to recruit a replacement HPB dietician after the lady who originally looked after me left on promotion.

I wish you the best of luck with your appointment on Tuesday with the GP.
 
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Welcome to the forum @Lizzielogs

Glad you have found the forum useful so far. Hope we can continue to provide helpful suggestions, pointers and encouragement.

You might also find it helpful to call the Diabetes UK helpline of you need help and advice about navigating your way through the maze of appropriate treatment. The helpline runs Mon-Fri 9-6 and the number is at the top of every forum page.
 
Lizzielogs said:
Morning all
As I say I am a slight impostor as I have joined the forum for my husband as I am the head cook, shopper, and bottle washer in the household.
Husband has just been diagnosed with type 2 and we have so far waited 5 weeks to see the diabetic nurse for his first consultation and still have another 3 to go. Didn't get any info from the doctors apart from take 2 of these tablets before your evening meal so we are totally in the dark! He is a cyclist and has regularly taken whey protein as a muscle building method which we now find is full of carbs and sugar, to boot he also has acute pancreatitis so cannot digest the proteins in meat!!
Hoping to look through previous posts and see what info I can glean!

Lovely to 'meet' you all, from Deal in Kent
Click to expand...
good luck @Lizzielogs - sounds like your husband is very fortunate to have you to look out for him. Everyone on this forum is so supportive, you have found a great resource to help you on your journey!
 
everydayupsanddowns said:
Welcome to the forum @Lizzielogs

Glad you have found the forum useful so far. Hope we can continue to provide helpful suggestions, pointers and encouragement.

You might also find it helpful to call the Diabetes UK helpline of you need help and advice about navigating your way through the maze of appropriate treatment. The helpline runs Mon-Fri 9-6 and the number is at the top of every forum page.
Click to expand...
Wonderful, thank you.
 
Many thanks again to all of you for your support.

We had a doctor's appointment yesterday and I asked all of the questions everyone suggested!
His pancreatic scan is tomorrow so no hanging around.
I have the finger prick meter which also can be used for ketones (BS 11.5 this morning (coming down) ketones .02 (all good)).
It's still undecided if he is type 2 or type 3c which I assume won't be decided until the pancreas scan results as there is a difference between acute an chronic pancreatitis (she said)
Doctor is putting him on other tablets (low dose first and rising if necessary) which stimulate the pancreas to make more insulin and allow the system to use what is produced to better effect (can't remember the name as it was information overload by then!) This is going to be tried before starting on the insulin route.

Feeling less overwhelmed now, thank you.
 
So pleased to hear you have a pancreatic scan organized so quickly and that you have a means of testing BG and Ketones. The blood ketone testing strips are quite expensive and you only need to use those when levels are persistently mid teens, Most of us wouldn't use a ketone strip if our BG was under 14..... in fact I still haven't managed to get them prescribed 3 years since diagnosis and repeated requests.... so you are very lucky to get those at this stage. It sounds like you have a good doctor..... or maybe I need to get you on my case 😉

The tablets will probably be Gliclazide. It will be interesting to see if they have much/any impact although if you are also instigating dietary changes that will have a big impact too and it may be difficult to tell what is causing any reduction in levels as a result.

Anyway, good luck with the scan and let us know how things go.
 
rebrascora said:
So pleased to hear you have a pancreatic scan organized so quickly and that you have a means of testing BG and Ketones. The blood ketone testing strips are quite expensive and you only need to use those when levels are persistently mid teens, Most of us wouldn't use a ketone strip if our BG was under 14..... in fact I still haven't managed to get them prescribed 3 years since diagnosis and repeated requests.... so you are very lucky to get those at this stage. It sounds like you have a good doctor..... or maybe I need to get you on my case 😉

The tablets will probably be Gliclazide. It will be interesting to see if they have much/any impact although if you are also instigating dietary changes that will have a big impact too and it may be difficult to tell what is causing any reduction in levels as a result.

Anyway, good luck with the scan and let us know how things go.
Click to expand...
YES. that's the name!!!
The expense is probably why she only gave me one strip for ketones, I assume we will get the others for the blood on prescription.
We have already made the dietary changes re bread/ rice/ pasta all to brown - husband eats a good diet and the sweet tooth fairy gave all our allotted taste buds to me!
We are also glad of a quick appointment for the scan, I have to say our doctor is really good. She is a rare 'one man band' with the back up of 3 part time nurses and a visiting physiotherapist, we know we are lucky with her as I hear some real horror stories locally.
 
Just be careful of the swaps to 'brown' of the things you mention as they are really no different in the amount of carbs but they may digest slightly more slowly in some people which makes then more tolerated but others will not tolerate at all.
You could check if you have blood glucose strips so see if they are OK, test before the meal and 2 hours afterwards, an increase more than 3mmol/l would indicate they are still not too good.
Good luck with the scan.
The Gliclazide has the potential to cause low blood glucose so be careful of reducing carbs too much too quickly.
 
Leadinglights said:
Just be careful of the swaps to 'brown' of the things you mention as they are really no different in the amount of carbs but they may digest slightly more slowly in some people which makes then more tolerated but others will not tolerate at all.
You could check if you have blood glucose strips so see if they are OK, test before the meal and 2 hours afterwards, an increase more than 3mmol/l would indicate they are still not too good.
Good luck with the scan.
The Gliclazide has the potential to cause low blood glucose so be careful of reducing carbs too much too quickly.
Click to expand...
Many thanks, all noted, we will be religious in what we do. We have swapped white for brown over a period of 6 weeks or more, with a fortnight in between each swap so hopefully that is all to the good.
If I'm being honest reducing carbs more for him is almost an impossibility, he never eats between meals so the pasta/ bread/ potato intake is restricted to two meals a day, also he is one of Pharaoh's lean kind at 5'10" and 68 kilos and fit as a 70 year old flea with pancreatitis can be which is why the type 2 thing was such a shock!
 
Lizzielogs said:
Many thanks, all noted, we will be religious in what we do. We have swapped white for brown over a period of 6 weeks or more, with a fortnight in between each swap so hopefully that is all to the good.
If I'm being honest reducing carbs more for him is almost an impossibility, he never eats between meals so the pasta/ bread/ potato intake is restricted to two meals a day, also he is one of Pharaoh's lean kind at 5'10" and 68 kilos and fit as a 70 year old flea with pancreatitis can be which is why the type 2 thing was such a shock!
Click to expand...
You need to be guided by your blood glucose monitor and reduce portions if needed. Make up for the reduced carbs with protein and healthy fats and veg.
 
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