Newbie diagnosis took 27 years

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Slider

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Hi there, feeling a bit confused as to what I should be feeling, I’ve recently had a new GP do my annual check up and she said there was an issue and could I have second bloods. She then confirmed that I had Diabetes, but asked why haven’t I been treated for it since it was detected in 1996! As you can imagine this was a bit of a shock, I have been going into my surgery over the years with many signs that would point to diabetes and certain symptoms, in 1996 I had acute pancreatitis and they couldn’t find the cause of it, but as a precaution I avoided fried and spicy food, alcohol and sugary food and drinks. However, I felt extremely tired all the time, very lethargic and almost every night I was shaking whilst trying to sleep, to this end I hardly slept properly for years.

Anyway, this new diagnosis has made me question what am I to do to feel better, feel normal if that’s possible? The nearest diabetic surgery is December 5th and my GP haven’t advised anything for me to do, all of this is making me look at other advice and any advice would be greatly appreciated.

Dan
 
Welcome @Slider 🙂 You mention pancreatitis - could you actually have Type 3c diabetes rather than Type 2?

Type 3c is caused by damage to the pancreas.
 
@Slider Sorry to hear this, but I second the suggestion that it might be Type 3c, which not many doctors know about. You might have damage to the pancreas that's causing issues with digestion/absorption as well.
 
Welcome @Slider
I have Type 3c diabetes (diabetes due to pancreatic damage). In my case this is due to one very severe episode of acute pancreatitis.
I've had diabetes and been treated with insulin ever since.

Did the surgery tell you your HBA1C result? This is a blood test that measures your blood glucose over the last 3 months. An HBA1C value of 48 or above indicates diabetes.
If they are happy to leave you until December to get any more information I would hope that your value isn't much over 48.
Has the GP realised that your raised blood glucose level occurred in the same year as the pancreatitis'? If the two haven't been linked I think I'd be pushing for a GP appointment to discuss this.
If your diabetes turns out to be Type 3c you should be aware that damage to the pancreas often leads to a lack of digestive enzymes being produced. This is why you'll see Type 3cs talking about taking Creon (which is one type of replacement enzymes).

This must have been a bit of a shock. Hope that you get some answers soon.
Please ask if you have any questions.
 
soupdragon said:
Welcome @Slider
I have Type 3c diabetes (diabetes due to pancreatic damage). In my case this is due to one very severe episode of acute pancreatitis.
I've had diabetes and been treated with insulin ever since.

Did the surgery tell you your HBA1C result? This is a blood test that measures your blood glucose over the last 3 months. An HBA1C value of 48 or above indicates diabetes.
If they are happy to leave you until December to get any more information I would hope that your value isn't much over 48.
Has the GP realised that your raised blood glucose level occurred in the same year as the pancreatitis'? If the two haven't been linked I think I'd be pushing for a GP appointment to discuss this.
If your diabetes turns out to be Type 3c you should be aware that damage to the pancreas often leads to a lack of digestive enzymes being produced. This is why you'll see Type 3cs talking about taking Creon (which is one type of replacement enzymes).

This must have been a bit of a shock. Hope that you get some answers soon.
Please ask if you have any questions.
Click to expand...
I believe it was 53 and 54 in the two readings I had, should I enquire about the type 3 and see what has been checked? Sounds like a few of you have mentioned this type 3, Ex cause my ignorance but I didn’t know about it
 
Slider - please may I ask where this diabetes clinic is going to be? Many GP surgeries are by no means expert in dealing with other than very standard types of diabetes - they can't be expert in dealing with complicated conditions, hence they refer patients on to experts, more usually found employed by and holding their out patient clinics in hospital settings. Or sometimes, the more expert staff come to those surgeries and hold the clinics for that surgery's patients there instead to save people the travel. The main thing is, when anyone doesn't have a run of the mill prob, they get to consult with someone who will know!

For people without diabetes, as their HbA1c test result would be expected to be up to 40 ish, alarm bells should start to ring for doctors when it's above that - though without getting more detail about exactly what they'd been doing immediately before the blood was drawn for the test, it's not until it gets to 48 and above that a diabetes diagnosis is actually delivered to them.

Low 50s is by no means massively high - and although new doc said 'you'd had it since 1996' without knowing all the details as none of us obviously have access to your past medical records, we are all guessing anyway. OK, it should be slightly more informed guesswork - but still guesswork I'm afraid.

Find out from the surgery who holds the clinics and where it will be, plus ask if there's any chance you could get seen sooner than December since it has been suggested to you that it could perhaps be Type 3c, rather than more usual either type 1 or 2. The 'c' after the 3 is important - since Type 3 runs between a) and k) so far, depending on exactly what caused it!

In the meantime - don't panic, Cap't Mainwaring! 😉
 
Many thanks for the reply, the clinic is ran by diabetic specialists and is 4 hours long, they go through everything and help you need, but it’s a long time till December and I’m not sure the unwell feelings I have, lightheaded, poor stomach constipation and diarrhoea, pins and needles and loss of touch in hands and feet, itchy feet. All of that leads to me having a lot of anxiety as I was told it’s high blood pressure and I have a high risk of strokes or a heart attack, so anything sets off anxiety and it’s daily issues. I’m a calm person and relaxed about it, but my body says otherwise.
 
HbA1c results of 53 and 54 are just over the diabetes threshold and at that level you would be extremely unlikely to suffer symptoms of diabetes let alone significant ones so I suspect something else is causing the issues you are experiencing.
That said, I agree with the others who suggest you may be Type 3c rather than Type 2 although at those HbA1c levels I would not expect insulin to be necessary and probably just standard oral meds would be a first line option although to be honest, dietary changes at that level should be sufficient. I appreciate that you have cut sugar, but diabetes is about all carbohydrates not just sugar.... so breakfast cereals, bread, pasta, rice, potatoes and portion size and type of fruit needs to also be reduced.

I wonder if this "clinic" you refer to is actually an education course like DESMOND rather than a clinic? 4 hours for a clinic appointment would be unheard of even for those of us needing insulin.

Are you seeing any notable weight loss at the moment? Those people needing Creon due to pancreatic damage usually become malnourished because their body is unable to digest the food they eat and absorb the nutrients. This also results in erratic and unpleasant toilet habits I believe and is sometimes characterized by greasy yellowish very smelly stools which float and diarrhoea or constipation or a sudden urgent need "to go". If any of that applies, then asking for a feacal elastaze test to check for Pancreatic Enzyme Insufficiency may be helpful. It could also be worth asking for a pancreatic scan to assess the health of your pancreas although I would have expected your HbA1c to have increased significantly over 27 years if your pancreas was failing.

I might also ask about thyroid and vitamin B tests to assess if an imbalance may be causing the symptoms you are experiencing.

To put your HbA1c into perspective, my HbA1c was 112 at diagnosis and there are plenty of people here who were higher still and even following a low carb way of eating and using insulin and a lot of effort I manage to keep it between mid 40s and mid 50s, so pretty much the range you are getting now and I don't get symptoms at these levels nor would I expect to and I would hope to mostly avoid complications if I manage to maintain this HbA1c level for the rest of my life, so that HbA1c result in the low/mid 50s isn't a huge concern but could potentially be lowered with the right lifestyle (diet and exercise) changes.
 
Thanks for the reply, I believe it is a DESMOND meeting. As for weight loss, it’s not incredibly noticeable as I have noticed a size down in trousers in the past two weeks, but I can fluctuate.

It’s more information about food and diet in particular that will aid me I feel, the past couple of days I have been away with the family and diet was harder to regulate as eating out all the time, getting used to that is something I probably have to learn, but I was basically told of the diagnosis and told to get on with it. I will certainly ask to have a look at type 3, I am already having B12 injections as I was very low when checked for that.

I can only assume the issues I experience daily are something else, but it’s clear to me that I’ve felt these issues since having the acute pancreatitis and the hospital not knowing what caused it in the first place, I have over the years had no choice but to get an appointment and ask the questions all over again and not really getting any advice that has helped. The dizziness was Menieres Disease, the fatigue is B12 and Fibromyalgia, although most of the Dr’s disagree with the specialist at my local hospital on this one. Any other time I’ve been told it’s a bug or it will go in a few days etc
 
Slider said:
I believe it was 53 and 54 in the two readings I had, should I enquire about the type 3 and see what has been checked? Sounds like a few of you have mentioned this type 3, Ex cause my ignorance but I didn’t know about it
Click to expand...
It's good to hear those HBA1C results - 53 and 54 are only slightly over the threshold for diabetes. Those levels are very unlikely to cause any symptoms but obviously getting down to non diabetic levels would be ideal. Hopefully the DESMOND course will help with that.
Hope you find some answers about your symptoms.
 
The pins and needles in hands and feet is most likely vitamin B12 deficiency which is why I suggested getting it checked out, so it is really good you are getting injections to boost that. It may be that there is a digestive issue causing you not to absorb the B12 from your food and that could be down to not digesting your food properly.... perhaps coming back to the pancreatic enzyme insufficiency.
I wouldn't get too hung up on why the pancreatitis happened. It can sometimes be linked to gall bladder issues like a gall stone getting stuck and irritating the pancreas but then you could start chasing your tail wondering what caused the gall stone(s), IF you were able to identify that as the probably cause. My mother had 3 very acute bouts of pancreatitis during her lifetime and lucky to survive them each time. She did have gall bladder issues and her gall bladder was removed I think sometime after her first attack of pancreatitis, but it didn't stop subsequent attacks.

Unfortunately the NHS isn't functioning at it's best at the moment and there is not much joined up thinking as regards looking at the big picture and you really need to educate yourself and then gently but firmly prompt the doctors towards what you suspect may confirm or rule out causes of your symptoms and/or learn to manage your conditions yourself as much as possible. It really is awful that you have felt so unwell for so long, but I am not convinced it is down to diabetes itself because your levels are not particularly high and that something else is going on.

As regards diet, I wonder if you would like to give us an idea of the sort of things you typically eat and drink for breakfast, lunch and evening meal and any snacks and see if we can make some suggestions for simple swaps which might help reduce your BG levels a bit.

In general there are two main approaches to managing Type 2 diabetes....

Low carbohydrate, where you reduce your consumption, not just of sugar and sweet things but also starchy carbs like anything made from grains/grain flour ie bread, pasta, rice, pastry, couscous and breakfast cereals, even the supposedly healthy stuff like porridge and fruit can be a problem for some people. Plus starchy or sweet below ground veg like potatoes and parsnips and sweet potato. I am not saying not to eat these foods but to reduce portion size and look at labels and choose wisely. This should be considered a new way of life rather than a short term fix and after a while it becomes your new normal. Cutting back on carbs can be a real shock to the system at first because culturally we are used to filling out plates with bread and potatoes and perhaps rice or pasta depending upon which places in the world you come from, but once your break from those customs you start to realise that the meat/fish and veg or chilli sauce or curry are actually the tasty bits and you don't really need a load of stodge to go with them. You can still have bacon and eggs or steak and chips but your chips are made of celeriac instead of potato and you have a big salad with coleslaw with it, or bangers and mash, but the mash is made with mashed cauliflower which is surprisingly similar if you drain it well before mashing and add a good dollop of cream cheese and a sprinkle of grated cheese on top.

The other approach is a low calorie approach usually an 800calroie a day short term 8-12 week diet sometimes referred to as the Newcastle Diet or Fast 800 which is designed to burn off visceral fat particularly around the liver and pancreas thereby enabling them to function more effectively and balance your Blood Glucose levels better. The key thing with this approach is that you need to maintain the weight loss to maintain the benefit. This is generally considered to be most successful with people who have been recently diagnosed, so that is something you may want to factor in although considering how little your diabetes has progressed over all those years, despite minimal dietary intervention and no medication the longevity of your diagnosis may not be relevant.

Both approaches work for about 50% of people in helping them to push their diabetes into remission. Maintaining it there is usually a work in progress either by maintaining the low carb way of eating or maintaining the weight loss through other means.

If you have any questions about the above just ask, but probably easiest if we go through your diet and suggest some swaps to get you started.
 
Thanks Barbara that’s very helpful, I say I noticed this weekend that I felt unwell, more lethargic and digestive issues. I was putting it down to the fact we were away and eating out for our meals. At work for the past 2/3 weeks since the diagnosis I have been taking in fruit such as bananas, oranges, apples and plums, snacking on Cashew nuts, for breakfast weetabix or shred wheat and semi skimmed milk, lunch was a salad or wholemeal/seeded bread with a protein of chicken or tuna, peanut butter even, my evening meal was always a bit more of what my wife had cooked (as I get in late after a 12 hour day) pasta mainly or quick meals. If I have been off I have tried to focus on some meals that I have read up on, wholemeal pasta, Buddha bowls etc. I had noticed I had been feeling much better, healthier even, but as I said this weekend it’s been a bacon/egg bap, a fry up yesterday morning with a chicken souvlaki for an evening meal.

So I wondered if it was this change that made me notice how unwell I was feeling during the day yesterday?
 
How many Weetabix or Shredded wheat do you have and what other than milk do you have on them.

The Desmond course will probably suggest that those are good choices for breakfast but many people here on the forum find that 2 is too much for their diabetes to manage.... They know this from using a Blood Glucose meter to test just before eating and then 2 hours afterwards, and this allows them to see in numbers how their particular body and diabetes responds, so that may be something you want to consider self funding, to get more of an insight into your diet and how your body copes with it from a BG levels perspective. That way you may find that some of the foods you are eating are making you feel worse by spiking your levels or causing them to spike high and then drop rapidly later.

In general it is carbohydrates which affect BG levels and therefore diabetes, so protein and fat rich foods will not spike your BG levels so many of us base our meals on protein, fat and mostly leafy green veg, whilst going easy on the carbs.
Wholemeal/wholegrain products like Weetabix/Shredded Wheat, wholemeal bread and pasta and brown rice have almost the same carb content as the white version and contrary to popular guidance, most of us find that our digestive system breaks them down just as efficiently to release their glucose into our blood stream and spike our levels.... maybe marginally slower but not enough to make any real difference, so we still have to restrict portion size and frequency of these wholemeal options.
Many of us here opt for creamy natural Greek style yoghurt for breakfast, with some mixed seeds and/or chopped nuts and a few berries, like rasps or strawberries or blueberries or blackberries which are currently in season of course. Berries are the lowest carb fruits and are usually our first choice. Apples and oranges are moderate carb, so if I am going to have an apple, I will have half one day and the other half the next, usually with a chunk of nice cheese... this is usually a good lunch option for me or salad with meat or eggs. Bananas and grapes and mangoes are the highest carb fruits so those are a rare treat and again it is best to restrict to half a banana one day or a handful of grapes (hoping you don't have large hands 🙄 ) and either share with a loved one or have the other half/handful the next day, but just don;'t have them every day.
If you are having pasta, have just half the portion of pasta than you usually would, but with more sauce and perhaps a nice big portion of broccoli or serve it on a bed of shredded cabbage or some sliced or spirallized sauteed courgette. I find veg very quick and easy to cook in the microwave so a portion of shredded cabbage with a knob of butter will take no more than 3 mins in the microwave. Broccoli 3.5mins. Sliced courgette with a knob of butter just 2-3 mins. Mushrooms are also good if you like them and will bulk out your meal without adding carbs and also cook quickly in the microwave with a bit of butter.

Hope that gives you a bit of an idea. You should still have tasty meals and eat more or less the same as your family but just reducing the portion size of the high carb foods like pasta and rice and potatoes and eating extra portions of lower carb ones like veggies.





If I go out for a meal, I tend to have the carvery where I can have meal and lots of veg but skip the Yorkshire pudding and potatoes or just have one roastie and perhaps one piece of roast parsnip.
 
Thanks Barbara, I have the small shredded wheat as I find the large ones to hard to eat, so I’d say a handful with 2/3 weetabix and semi skimmed milk. So perhaps I should swap this for a Greek style yogurt and seeds, nuts and berries and see what happens.

Is there any specific meter that I should look to purchase? I don’t mind getting one asap if it helps me get to this ‘normal’ feeling, I’d love to test it and feel great and know I don’t have to look back. Thanks again for the advice it is a bit of a minefield at present. Dan
 
Are you saying you have the mini shredded wheat as well as 2 or 3 Weetabix or do you mean two thirds of one Weetabix biscuit? Portion size is really relevant with diabetes so understanding how much you are currently having is really important when you are looking to cut down. Do you have any sugar or sweetener or are the small Shredded Wheat the sugar frosted ones?

If you are going to get a BG meter, the two most recommended by people here on the forum for reliability and economy of use are the Glucos Navii or the Spirit Healthcare TEE2. Both are available to buy online. The key thing to note about BG meters is that the test strips are not universal and it is the test strips that the manufacturers make their money on, so buying a meter which has lower cost test strips is an important factor when you are self funding. In fact some of the manufacturers will give away their meters in the hope that you will buy their test strips, but usually those are the more expensive ones. I believe the two mentioned have test strips for about £10 per pot of 50 test strips whereas some of the fancier meters may charge double or even nearly trebly that. There are one or two slightly cheaper models on the market than those 2 I believe but some people have come to the forum asking questions because they are having problems with them, so those are the two tried and tested ones that I would be pretty confident to recommend to someone self funding.

You will need to purchase several extra pots of test strips when you order a meter kit as it just comes with 10 test strips and lancets. Many of us resuse the lancets as long as we are just using them on ourselves and not testig friends and family as well, but if you want to do it properly, they are supposed to be single use so you may want to buy an extra box of lancets which generally are universal.

It is then important to have a testing strategy and for most of us that is when we first wake up on a morning and then just before eating breakfast and 2 hours afterwards. If you do that a few times with your current breakfast and see what sort of results you get and then if necessary change and try the yoghurt breakfast and see how your body responds to that a few times.... we try not to make any decisions based off just one set of results because there are other factors which can interfere with the results occasionally. Once you find a breakfast that doesn't spike your levels too high then you can maybe just test that onec in a blue moon to make sure you are still getting good results but move on to testing different lunch options and then once you find several meals that work well for you at lunch, move onto testing your evening meals.

My gut feeling is that it probably isn't your diabetes which is making you feel unwell, but starting a food diary and recording your pre and 2 hour post meal readings should shed some light on the matter if it is diabetes related as well as hopefully help you push it back into remission, so it is one less thing to worry about.
 
I was thinking the same thing that it is one less thing to worry about and as I am doing the tests myself I can quickly see the results and amend accordingly if necessary.

As for the breakfast I’m having 3 whole wheetabix, with normal shredded wheat, no added sugar and semi skimmed milk. I don’t have much milk as I do t drink a lot of tea or coffee, but when I do it’s always black and without sugar.

As for portion size I’ve never had to really look at them, I’m 6.1 and always around 15stone, this hasn’t really changed in years. The more I read, the more it’s apparent that a persons diet is crucial to feeling well and maintaining good health.

I just said to my wife how different I felt after having a full English breakfast yesterday, I dont eat them often, but I can honestly say I didn’t feel well at all afterwards yesterday and it affected me till around 6.00pm. Today I had a small orange, a banana and an apple spread out over a couple of hours and felt a lot better.
 
That suggests it is probably not diabetes related then as the full English ideally without bakes beans or hash browns or toast would be better for your diabetes than your usual breakfast cereal.... Wow! 3 Weetabix plus some mini Shredded Wheat is some portion or carbs!!
 
It did have baked beans, toast and hash browns, unfortunately I work 12 hour shifts and try to eat at the regular time given, so as I’m up before 5, breakfast is at 9.30 and lunch at 1.30
 
Slider said:
It did have baked beans, toast and hash browns, unfortunately I work 12 hour shifts and try to eat at the regular time given, so as I’m up before 5, breakfast is at 9.30 and lunch at 1.30
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If you are being treated as Type 2 which may not be correct if you have had pancreas issues then what you are eating sounds to be far too high in carbohydrates indeed many would not be able to tolerate breakfast cereals at all.
Have a look at this link as it may give you some tips on the sort of foods you should be focusing on https://lowcarbfreshwell.com/
I did the DESMOND course and unfortunately it does follow the standard NHS Eat Well plate which for may Type 2s is far too high in carbohydrates.
If you are advised that you should be following a dietary regime that a Type 2 would do then the suggested amount of carbs per day is no more than 130g.
All those foods you just mentioned would be ones people would be avoiding if Type 2.
If you are not eating breakfast until 4 hours after getting up your liver is probably releasing glucose to give you energy and for your organs to function so you are probably eating a high carb breakfast when your blood glucose is already quite high. Eating at least something when you get up preferably something low carb but high protein may give you a better start to the day
 
Many thanks for the reply, as I say it’s a minefield and although that full English is probably the first I’ve had in 6 months, I now understand it’s to high in carbs and even my normal breakfast is also, the trouble is I’ve always felt unwell if I’ve eaten anything to early in the day
 
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