2 months diagnosed - complications

[AllyS]

My story (I feel) is not the norm? Could I be wrong?

I now realise I have had symptoms of diabetes for a good few years but never been diagnoses (I believe that part to be common).

I would stand in the shower and hot water on my lower legs (calves and below) was at times painful, constant thirst and a few eye sight problems.

The rest, to me and my GP has been a bit confusing. I have Psoriatic arthritis which has been treated for over 10 years, yes I got that early in life. I have had psoriasis since I was about 16! Anyway, my treatment was changed at the start of the year and this required monthly blood tests for all vital organs etc.. part of which is blood sugar.

I have had no issues with this until suddenly I had raised sugar levels and alarm bells rang as my blood sugar was measured at 108.

I work offshore so this was in instant problem for me.

If I can go back 24 months, I started to develop a chest pain, just niggling nothing too serious. Foolishly I ignored this for 16 months until one trip at work on the oilrig the pain became severe. Preventing me eating etc.. To add to my collection of ailments I also have a hiatus hernia and put it down to that. The medics did an ECG, all clear and a bottle of Gavison was issued. Three days later pain gone back to normal, just the odd niggling pain in my upper right chest.

4 months ago, I was again at work. Prior to going offshore I had had my monthly blood tests the day before (mentioned earlier). I was having a slightly stronger chest pain at this time but again simply put it down to my hernia knowing an ECG had shown nothing. That night on the rig I was floored with chest pain. Pains from the front of my chest right through to my back. Up to my left shoulder and boy was it gripping.

To cut the story short I was medivac'd to hospital and they initially thought it was pancreas as again ECG's had been negative. Funnily the blood test (mentioned earlier) then came back with this 108 reading for glucose. Coincidence? What does make me wonder is why when the hospital did the diabetes blood check with the normal monitor I was normal?

Anyway I sat for 3 days in hospital with continued chest pains and they did nothing, not a single thing! The pain subsided and I was kicked out without any treatment, which to this day amazes me :!:

So now, 3 months on and I have hyper diabetes. Metformin was unable to control it so now on 2 x 80mg of gliclazide and that is still not fully treating it. I have had CRI scans, angiograms, ultra sounds, ALL NEGATIVE.
:?: :?: :?:
1. How can I suddenly go from normal to hyper diabetes like this?
2. Why has nothing been investigated further re this pain (which I am still having)?

I link the 2 beyond all doubt. I believe it is my pancreas and I believe it is a stone trapped in there causing this sudden diabetes. Could this be true? Would a CRI scan fail to detect this? I am led to believe an MRI or MRCP scan is what I should have had? :?:

ADDITIONAL INFO

My first HbA1c test, after I was medivac'd by my GP sat at 66, so not too bad considering it was untreated.

I went back last week, 3 months on having been treated with 3 x metformin daily for these 3 months and the reading was 111 :crazy: Something is not right and I believe it to be my pancreas. Has anybody else suffered like this?

 

[AllyS]

I should add, that over these last few months I have had access to a test machine and my levels sit in the mid to high 20's or simply off the scale that the meter simply cannot read. Since the Gliclazide was added 4 days ago it has brought the levels down to the mid to high teens and today even seen single figures but it is now back up at 18 again.

I am bemused that the NHS just doesn't seem to want to investigate anything, just throw pills at it and hope it goes away?

 

[Daibell]

Hi. You obviously have a fairly complex condition which is not possible for us on the forum to easily assist with. Can I ask how old you are and whether you are overweight? If you are fairly young and not overweight, then late onset T1 diabetes would cause quite large sugar swings but it may not be related to your condition. It might be worth asking your Medics to do a c-Peptide and GAD test to rule out T1 but as these cost I suspect they won't be keen. They also may be irrelevant as your diabetes may be the result of others causes only an HCP can determine. I hope someone is able to pin down the causes of your condition and hence be able to control the diabetes

 

[AllyS]

Hi. You obviously have a fairly complex condition which is not possible for us on the forum to easily assist with. Can I ask how old you are and whether you are overweight? If you are fairly young and not overweight, then late onset T1 diabetes would cause quite large sugar swings but it may not be related to your condition. It might be worth asking your Medics to do a c-Peptide and GAD test to rule out T1 but as these cost I suspect they won't be keen. They also may be irrelevant as your diabetes may be the result of others causes only an HCP can determine. I hope someone is able to pin down the causes of your condition and hence be able to control the diabetes

HI yes I am 45 and WAS over weight. I say was as I lost 15 kg in 2 months when this set in. A huge amount of weight just fell off whilst eating normally. I am 6'00" and medium to large build so I obviously am a larger guy and am now sat at 94kg- 15 stone. So perhaps still a touch overweight, but with the metformin stopping weight loss and the gliclazide helping put it on it won't be easy to get much lower.

Metformin stopped the weight loss in its tracks but failed to reduce my blood sugar which was still off the scale. I find it all very suspicious that this should suddenly happen.

They have run countless tests, they have confirmed it is not T1 but T2 with the respective blood tests purely due to this sudden onset. I have had scans, endoscopies etc.. I still believe these pains are related and I am still getting the odd twinge which is a little more worrying. I suspect my offshore career is going to be brought to a sudden end as the NHS just don't want to do a MRI/MRCP scan

I have had to sign up as a test case for the research centre as they promise to do a MRI! All I keep getting told, DIABETES IS NOT PAINFUL, OK I say, so what is causing these pains, why can you find it?

I am certain it is some form of blockage in my pancreas as a result of stones? I have been on Lipitor for cholestorol for over 22 years, these are well known to cause stones?

Here are some reading from the past 2 days
27.6
off scale
22.2
15.1
18.1
17.1
15.2
20.1
14.6
12.4
27.1
8.4
7.6
13.1
17.4
21.7

So the gliclazide is defo working as the week before it was:

off scale
off scale
29.8
27.2
off scale
off scale
off scale

That is 6 weeks into using metformin (4X PILLS)

 

[AllyS]

Actually had an 11.6 when I got up today and a 7.2 an hour after my gliclazide and food Best so far.

I can see the remainder of my life being less than fun

 

[dawnmc]

It really depends what you are eating Ally. Most of us low carb or at least reduce the carbs in our diet. So what is you diet like? Give us a typical day.

 

[Daibell]

Hi. Thanks for age and weight info. As you say, being a T1 has been eliminated. Yes, you certainly don't appear to have a 'normal' form of diabetes and diabetes doesn't result in pain until body damage results so as you suspect something else may be going on. I can understand why you might want an MRI scan to help provide more information. If you are worried about weight gain with Gliclazide be aware that Sitagliptin is another tablet to consider. It's fairly new and some GPs aren't aware of it. It doesn't cause weight gain or hypos so it might be worth discussing this with your HCP; it helps to reduce spikes after meals. As dawnmc has said you need to let us know what your daily diet is like.

 

[AllyS]

It really depends what you are eating Ally. Most of us low carb or at least reduce the carbs in our diet. So what is you diet like? Give us a typical day.

It varies greatly. I don't really have any set food I would eat.

I am not a big potato person.

Today for example. Toast in the morning, I had cereal for lunch and for the meal tonight I will be having a sausage casserole probably with some rice.

This is the thing, I don't eat vast amounts, but perhaps I could cut down on carbs a bit :thumbup:

 

[AllyS]

Hi. Thanks for age and weight info. As you say, being a T1 has been eliminated. Yes, you certainly don't appear to have a 'normal' form of diabetes and diabetes doesn't result in pain until body damage results so as you suspect something else may be going on. I can understand why you might want an MRI scan to help provide more information. If you are worried about weight gain with Gliclazide be aware that Sitagliptin is another tablet to consider. It's fairly new and some GPs aren't aware of it. It doesn't cause weight gain or hypos so it might be worth discussing this with your HCP; it helps to reduce spikes after meals. As dawnmc has said you need to let us know what your daily diet is like.

I already am on sitagliptin :crazy:

Sitagliptin 100mg 1 a day
slow release metformin 500mg 4 a day
gliclazide 80mg 2 a day

When you consider 4 months ago my glucose level was normal?!?!?! Even with that lot I am still hovering too high! The meter for the past week is averaging at 14.8!

This is why I question what is going on but the NHS just WILL NOT listen. Gripping chest pains and suddenly this? The first doctor I saw when I was madivac'd back to shore knew my ECG was normal and diagnosed Pancreatitis. There after EVERY SINGLE DOCTOR HAS IGNORED THAT.

I am at my wits end now as about to lose my job and house I had hoped maybe someone on here had suffered a similar problem With a 17month baby in the house, it is far from ideal :thumbdown:

 

[Daibell]

Hi Ally

I have similar sugar levels, but not quite so high, and diabetes meds as you do, but without the pain. I did have dull aches in the abdomen before diagnosis and now wonder whether it was mild pancreatitis that knocked out some cells. I am surprised that no recent GP has followed-up on your possible pancreatitis. In the end it may be worth turning up at A&E when you get back on land and see if you can get them to act. We have a local 'Darzi' walk-in GP clinic which is excellent and an escape route from our very average local surgery. Do you have one you could go? Your diet does seem a bit high in carbs. I would avoid the toast at breakfast and substitute porridge, home-made no-sugar added muesli, egg & bacon etc. Bread is a real carb problem; go for multi-grain or low-GI if you do have it. Most branded cereals have a lot of added sugar and carbs, so do read the packet. I try to keep carbs below 150 gm per day. Some on the forum go for much less

 

[AllyS]

Hi Ally

I have similar sugar levels, but not quite so high, and diabetes meds as you do, but without the pain. I did have dull aches in the abdomen before diagnosis and now wonder whether it was mild pancreatitis that knocked out some cells. I am surprised that no recent GP has followed-up on your possible pancreatitis. In the end it may be worth turning up at A&E when you get back on land and see if you can get them to act. We have a local 'Darzi' walk-in GP clinic which is excellent and an escape route from our very average local surgery. Do you have one you could go? Your diet does seem a bit high in carbs. I would avoid the toast at breakfast and substitute porridge, home-made no-sugar added muesli, egg & bacon etc. Bread is a real carb problem; go for multi-grain or low-GI if you do have it. Most branded cereals have a lot of added sugar and carbs, so do read the packet. I try to keep carbs below 150 gm per day. Some on the forum go for much less

Thanks. We have a drop in clinic yep. It was them that requested I be put on gliclazide immediately. If I was waiting on the GP I still wouldn't have it.

I also had a 4 hour diabetes induction at the clinic but they never mentioned carbs. Or should I say they never made a big deal out if it stating I should stick to the healthy plate, which as you will appreciate, nearly 1/3 solid carbs? Is this plate wrong?

:crazy: You can imagine the amount of info I am getting hammered in to me just now. Just finding it a bit hard to take it all in :***:

 

[Daibell]

Hi. Yes, the majority of us would say the NHS/DUK 'healthy' plate may (or may not!) be healthy for a non-diabetic but it certainly isn't for most diabetics. The plate is based on no scientific research and you may ask yourself why there are so many obese people around. The NHS has little understanding that diabetes is greatly influenced by diet and the medics just chuck more and more meds at it to try to fix it. My diabetes GP told me off for starving myself and said I should have a normal healthy diet. My sugars would be thru the roof if I did. Some other countries such as Denmark, Germany and more recently the USA are now recommending much lower carb diets. BTW, you may like to know that Kellogs is one of the 'partners' to DUK (Diabetes UK); do I need to say any more? Anyway I hope you find more help soon.

 

[AllyS]

Hi. Yes, the majority of us would say the NHS/DUK 'healthy' plate may (or may not!) be healthy for a non-diabetic but it certainly isn't for most diabetics. The plate is based on no scientific research and you may ask yourself why there are so many obese people around. The NHS has little understanding that diabetes is greatly influenced by diet and the medics just chuck more and more meds at it to try to fix it. My diabetes GP told me off for starving myself and said I should have a normal healthy diet. My sugars would be thru the roof if I did. Some other countries such as Denmark, Germany and more recently the USA are now recommending much lower carb diets. BTW, you may like to know that Kellogs is one of the 'partners' to DUK (Diabetes UK); do I need to say any more? Anyway I hope you find more help soon.

now I am completely lost LOL.

So carbs have sugars in them and raise your sugar levels? :crazy:

My blood sugar is through the roof and I am now wondering why the NHS would tell you to eat something that causes diabetes to get worse. I will be calling them tomorrow to create hell. I am fed up of the substandard (and it is poor) health care I pay taxes for. :twisted:

Thanks for the additional info and I am now disgusted that they advertise these healthy eating plates and they worsen my condition :thumbdown:

 

[AllyS]

I think the most concerning thing through all of it is the sudden loss of eye sight. I suddenly, over the past week, need glasses for everything (before only reading). Now I can't see anything without glasses :thumbdown:

 

[dawnmc]

Hi Ally, you may want to have a look at some other websites 'blood sugar 101' is a good one and easy to navigate. By the sounds of your diet it reads like you are have more carbs than most of us will eat. And google paleo. Some people reduce the rice they eat, I don't touch it - why have a little of something when you can fill up on other nice tthings, after all pasta, rice and potato are just fillers. You may find you get hungry after eating carbs.

 

[Ann19]

Quite a few of us have found that once our levels are under control that our eyesight has improved, this may happen for you. You need to get your figures down, testing is vital to find out how food affects you. I have cut out all pasta and rice. The only bread that I eat is the occasional slice of Burgen Soya and Linseed. If I have potato, its not very often and that's either a new potato or a roast potato done in either Goose or Duck fat. Cutting these out doesn't bother me as I think of them as the boring parts of the meal. Because of the medication that you are on you will have to be careful if you reduce carbs in case you have a hypo, I'm don't know very much about the medication. I'm type2, but there are a few people on the forum that are type 1.5.

It sounds as if you may have to push your GP about the pains that you are having, try to get him to refer you to the diabetes specialist at the hospital, they should be able to check you out and hopefully find the source of the pains.

I'm another one who can't understand why they push us to eat carbs, carbs turn to glucose in our bodies and.........oh yes!!! That's what we can't process!

Ann

 

[AllyS]

Hi Ally, you may want to have a look at some other websites 'blood sugar 101' is a good one and easy to navigate. By the sounds of your diet it reads like you are have more carbs than most of us will eat. And google paleo. Some people reduce the rice they eat, I don't touch it - why have a little of something when you can fill up on other nice tthings, after all pasta, rice and potato are just fillers. You may find you get hungry after eating carbs.

The problem I have is my wife is Thai and rice is rice in her eyes. I don't honestly eat a lot of rice or potatoes as neither are high on my like list.

The last 2 days has seen my levels drop to single figures which pleases me greatly. I just hope I get my eye sight back.

As I have said, I just don't understand how this can go from normal to raging diabetes in the space of a week or 2!?!?!

I will look at reducing carbs.

 

[Fraddycat]

Hi Ally, I just read through all of your info and wanted to say that your eyesight will probably stablise when you have figured out how to control your blood sugars. Many people have reported poor eyesight at diagnosis that improves in time. I just wanted to add to Dawn's great reading suggestions to also recommend looking at this website http://www.dietdoctor.com/lchf This is what I follow and it has really had a beneficial impact on my BG readings and my weight. Its a bit adjustment, we have all gone through those stages of disbelief that the NHS would tell us something that would make us worse - that's why we tell everyone new on here what we now know.

Good luck, keep your chin up!

 

[xyzzy]

Hi Ally and welcome

The stuff about the NHS recommending diets that don't work is shocking isn't it. Unfortunately it really is true! Here's what I did after taking the advice of forum members when I was diagnosed in December last year. Within six months I had normalized by sugar levels, cholesterol, blood pressure and lost a load of weight (4 stone). It won't cure you as you will need to strictly monitor what you eat from now on but if you're anything like me it will make you feel loads healthier and put you back in control of your life. I started out with readings in the 20's rather like yourself. Nowadays they are rarely ever over 6.

Eating wise then cut out all forms of natural sugar so the obvious cakes, biscuits, sugar in tea and coffee, non diet sodas and even pure fruit juices as they have loads of sugar. Next and just as importantly at least halve your intake of rice, pasta, bread, potatoes, cereals and other flour based products. Replace with extra meat, fish, cheese, eggs and especially green veg. Things like yoghurt are generally fine. If you want a small amount of fruit then "berries" are best and I find they won't raise your levels as high if you eat them as a pudding after your main meal. On the rice, pasta and bread you have left in your diet swap to brown basmati rice, brown or tri-colour pasta and the best bread by far is Burgen Soya bread that you can get from most supermarkets. That kind of diet is what you would be recommended to do as T2 in Sweden, America and many other countries. The "controversial bit" is where I said "Next and just as importantly at least halve your intake of rice, pasta, bread, potatoes, cereals and other flour based products" as those are the starchy carbohydrates that the NHS is so keen we eat even though they raise your levels nearly as badly as eating plain sugar. As others have said sugar is just another type of carbohydrate. It's a ridiculous situation rather like recommending an alcoholic drinks loads of vodka.

See you have a blood meter which is great. You need to aim to be under 8 as regularly exceeding 8 is where you start to risk complications The NICE guidelines say under 8 two hours after eating and between 4 and 7 at all other times. Great how they can put together good guidelines but then are clueless in telling people how to go about achieving them...

At the beginning you may find getting under 8 to be really difficult. If it is then also test before you eat and aim for the two hour after eating reading to be back at roughly the level of the before eating reading. If you do that then you should see a gradual day by day improvement until all your two hour readings come out safe.

If you can't stop the readings spiking high after two hours then you have a choice. Either reduce the rice, pasta, bread, potatoes, cereals and other flour based products some more until your levels respond or if you really can't change your diet further then go back to the gp and ask for stronger drugs but the important thing is to recognize that you need safe blood levels as that will protect you from diabetic complications down the line. Also recognise that many believe stronger diabetic drugs may only work for a while and that at some point you will need insulin. The advantage of the diet only approach where you cut out sugar and starchy foods is that many members who have adopted that lifestyle take no or very little medication and have not seen the disease progress further for years.

Good luck and keep asking questions

 

[AllyS]

Wow a lot of info, thanks guys.

I think I have to accept my diet is going to change, it already has dramatically as I used to shovel chocolate, crisps and biscuits down. All of these have stopped.

I am going to have to address the carbs I see. Not sure if I could do a complete carb free diet. Not easy when you have a 7 year old and 17 month in the house either.

Today (and yesterday) has been refreshing with the following readings:

11.9
8.7
10
9.4
7.6
8.2
6.5

Does the gliclazide take a few days to really start working?

I am going to cut out toast for starters. I have been eating a lot of weetabix, rice crispies etc (hospital advised me to eat these) so going to cut them down.

Funnily not had these chest pains in 3 months and tonight they are coming back, just as the sugar levels return to near normal? Weird?

By the way, where do I buy Ooopsies bread?