15 Years since diagnosis

[scribbler]

Hi, I have posted on here before, but not for a while. I was diagnosed 15 years ago with diabetes, type 2. I was originally diagnosed because I was regularly feeling very tired at around 3pm each day. Approximately 2 months after diagnosis this went away. I have had no symptoms since. I have tried pretty much every medication open to me, including insulin. I have given each medication a fair trial, but all, with the exception of Glimepiride, have affected me to a greater or lesser extent. Usually to the point of not being able to work properly. I have none of the accepted symptoms of diabetes and haven’t had for any length of time. I feel better not on medication than on it. I was seriously ill last year, and spent approx 4 weeks in Hospital, during which time I had virtually every test known to man, which didn’t throw up any issues with my body, except with what I was in for, except for high blood sugar. I have attended diabetic groups and browsed this forum, my late father was also diagnosed with diabetes years ago. However, I am not like my father, and I don’t identify with anything said in the groups I attended or anything I have read on here, so far. My other half is a Nurse, and confirms I am not like any other diabetic that they have ever come across either. My Diabetes Nurse is running out of options and is confused about what is going on. I am not in denial about my high blood sugar, but every time I try to do something about it it makes me feel lousy. I had glandular fever approx 20 years ago and post recovery I haven’t been quite the same, and am wondering if there is an interaction between one and the other. Other things to note, I haven’t eaten meat for over 25 years, and I have a severe allergy to white fish. Anyone had a similar experience or have any thoughts? Trying to find a way forward before everyone gives up on me.

 

[Juicyj]

Hello @scribbler Not sure if I can provide any answers for you but curious as to whether you're still on insulin and what are your blood glucose levels like during the day so can you give some examples of what readings your getting and what your diet is like ?

 

[slip]

or hba1c results over the years?

 

[scribbler]

Hi thanks for taking the time to reply, blood glucose levels are constant, constantly elevated, finger prick tests tend to be in the 13 - 15 region, hba1c again has been pretty constant as well at around 125, only time it has dipped is when I’ve been on medication the insulin, which I was taking got it down to 80, but this is a bit of a muddy figure as I was on a high dose of prednisone for part of the period, so it may well have been possible to get it lower. Diet wise, I don’t eat meat, I do watch what I eat but not obsessively. I hardly drink alcohol. I am not taking the insulin any more, I developed a form of PTSD as a result of my hospitalisation which meant I couldn’t go near needles etc for a while, I got some help for that so it’s not much of an issue now. But I stopped taking the insulin and immediately started to feel better and had more energy etc. Basically the reverse of what should have happened. The insulin was giving me wild swings in my glucose which don’t happen now, blood sugar levels were out of control, in terms of unpredictable low results. Although my readings now are still in the same region they always have been, but they are constant.

 

[slip]

What insulins were you on? There have been a few on here that felt rubbish on certain insulins and a change made some difference to how they were feeling. How old were you when diagnosed, and any family history of any form of diabetes?

 

[ianf0ster]

Hi Scribbler,
You don't give us much information from which to guess what is going on and find suggestions as to what may work best for you. So I will ask some questions (sorry if you feel they are too personal, but we are all different).

1. What was your latest HbA1C reading? Also useful would be some earlier ones (if you have them).
2. Which medication(s) are you on? The diabetes one are the most important, but others such as Heart , or Blood Pressure medications or Steroids would be good to know about.
3. In which ways are you considered to be different to other Type 2 Diabetics?
For background information for you:
No Diabetic Med cures Type 2 - but lifestyle/diet can place it into remission in up to 40% (or more) of cases.
Approximately 10% of diagnosed Type 2 Diabetics have never been overweight. They are called Thin Outside Fat Inside (TOFI) like me and don't have many sub-cutaneous fat cells , so all the fat is pushed into/around the internal organs.
When you body is accustomed to very high Blood Glucose levels, any significant drop, even to levels which are still high (for normal people) will make them feel like they are about to die! They need to reduce it slowly in increments giving the body time to adjust to the lower BG levels each time.

 

[ianf0ster]

Of course if you were young when diagnosed, it is possible that you are really a Type 1 - rather than a Type 2.

 

[Daibell]

Hi. Can you let us know whether you have excess weight or are slim? This can affect the probability of being T1 rather than T2. Have any of the medics done a GAD and C-Peptide test. I am surprised that meds have had so many side effects. Is there any reason why you aren't still using Glimepiride? The insulin causing excessive swings was probably due to it not being balanced properly but if you have any excess weight that can cause lack of control with insulin due to insulin resistance. BTW insulin virtually never causes side effects making you feel unwell (assuming it's balanced) so I am very surprised by that. Are you having enough proteins and fat in your diet? Although not eating meat & fish, it's important you have enough of the right protein thru other foods e.g. veg etc. Are you keeping the carbs sensibly down? Steroids will always be problem with diabetes and it's always best to keep the dose down when you can but obviously you must follow the GP advice and discuss options.

 

[Listlad]

Hi Scribbler. This might help. My situation has been on the flip side of yours, low HbA1c results but with an accompanying range of symptoms. The polar opposite. It tends to suggest yet again that we are all different when it comes to diabetes.

 

[scribbler]

Ok, latest hba1c 125, one before was 80, one before that 130, before that 115-120 only other medication is Losartan and Omeprazole, insulin was Humulin, I can’t tolerate Metformin or apparently any of the ‘iprils’ (Ramipril, Lisinopril), my dad was Diabetic. I was Diagnosed at 33. I don’t have symptoms, at all. If it hadn’t been for the fact I went to the GP fifteen years ago I would be none the wiser. The meds make me feel awful, and I have given them all a try I know you need to take time to reduce the levels, it rather than all at once, the Metformin turned me into a zombie within two days, I couldn’t focus to do anything let alone work. Gliclazide makes me feel nauseous to the point of retching every five minutes, the insulin was ok, but I felt fuzzy headed and listless on it, and as soon as I came off it I was full of life and energy again. I am still taking Glimepiride as it doesn’t affect me, much, we have tried increasing the dose and I seem to have an ache in my head which I didn’t have before, but I am continuing. I am overweight, but not morbidly obese. I am not on Steroids now, they were only to treat an illness. I understand that Humulin contains Protamine Insulin which is fish related, and as I have a white fish allergy this could possibly be something to do with it? My diet isn’t perfect, but it isn’t that bad and having not eaten meat for 25 years, I am pretty good at balancing things out with substitutes. I am wondering if there is such a thing as asymptomatic diabetes, or whether there might be another endocrine explanation for my high blood sugar?

 

[slip]

and as I have a white fish allergy this could possibly be something to do with it?

I guess it's possible, was the 80 hba1c whilst you were on insulin? If so I'd ask to try a different insulin and see how you go (and just reading up about Protamine Insulin - I would press to try some other insulin(s) in your case, having a high hba1c over several years isn't great it's got to be worth another go). It would be good if you can have a GAD and c-peptide test if you haven't already (or what the results were if you have)

 

[ianf0ster]

Yes, of course there is asymptomatic Type 2 diabetes, I never had any distinct diabetes symptoms - just high Blood Glucose which they tested for after my 3x Coronary Artery Bypass. Of course they had put me on statins and many/most statins can raise Blood Glucose!

 

[Daibell]

Hi. Thanks for your reply. I wonder if changing to the more popular mealtime insulin, Novorapid, might be worth trying to see if the fish allergy was a problem with Humulin? It sounds like you may have just been on twice-a-day mixed insulin? Basal/Bolus will always be more controllable and best for T1s but means 4 to5 injections per day. Levemir might be better than Lantus if you do go for Basal/Bolus. Losartan does have side effects but I assume you do have high BP without it? Insulin should always be better than the Sulphonyl Ureas such as the -ides for side effects if you can find one or two that you aren't allergic to.

 

[scribbler]

I appreciate all your comments, the only ‘test’ I had was the one where they shove a load of glucose down you and see how you react later, I don’t think they do it now. It didn’t and still doesn’t, sound very scientific to me. Apart from that it’s the hba1c figure that proves I’m diabetic, I guess I’m asking is diabetes the only thing that causes the hba1c level to be high? I ask because in the hospital I had finger prick levels of 31 and over but that was down to the steroids, I stopped them and they dropped back to my normal. As has been pointed out, different factors affect glucose, my late father couldn’t eat peas without his levels being drastically affected. I am convinced that my system was adversely affected by the glandular fever and that my diabetes or high glucose is as a result. It’s the lack of any symptoms for so long that is the puzzle.

 

[mouseee]

You haven't mentioned your diet except no meat and white fish. What about carbs? Do you eat bread, rice, pasta or potatoes etc? Do you have and use a bg monitor to see how foods effect you?

Peas are pretty Carby which is why your dad would have spiked, carbs sneak in everywhere and they all turn to glucose.

 

[ianf0ster]

I appreciate all your comments, the only ‘test’ I had was the one where they shove a load of glucose down you and see how you react later, I don’t think they do it now. It didn’t and still doesn’t, sound very scientific to me. Apart from that it’s the hba1c figure that proves I’m diabetic, I guess I’m asking is diabetes the only thing that causes the hba1c level to be high? I ask because in the hospital I had finger prick levels of 31 and over but that was down to the steroids, I stopped them and they dropped back to my normal. As has been pointed out, different factors affect glucose, my late father couldn’t eat peas without his levels being drastically affected. I am convinced that my system was adversely affected by the glandular fever and that my diabetes or high glucose is as a result. It’s the lack of any symptoms for so long that is the puzzle.

No, Type 2 Diabetes is basically an intolerance to carbohydrates which causes Blood Sugar spikes when they are digested, associated with spikes in Insulin as the body's response in order to reduce the Blood Glucose down to safe levels. This is why Low Carb is so effective (its like stop giving an alcoholic more alcohol).

But other things raise (rather than spike) Blood Glucose:

1. Injury or Infection
2. Stress
3. Lack of Sleep
4. Medications … including Steroids and Statins and others

And of course your liver gives you an energy boost each morning by dumping Glucose into your blood stream so you can go and hunt a woolly mammoth for breakfast. This is known as the Dawn Phenomenon.

But since the HbA1C is a measure of how much your red blood cells were glycated over their life (they survive for up to 3 months), so it is a sort of average of Blood Glucose over the whole day over about 2 months. Thus it is a very reliable figure from which to diagnose Diabetes.

 

[Flora123]

@scribbler you can definitely be asymptomatic re T2. I had no symptoms (that couldn’t be attributed to something else). Slim and a ‘healthy whole food vegetarian’ diet. With hindsight it was very high carb despite being a good diet according to the current guidelines. My Hba1c was 112 but down to 36 within 3 months by going very LCHF. Been there ever since despite blood along the way. I couldn’t have done it without testing many times a day to know what I can and can’t tolerate-with many surprises along the way.
Test, test, test to see what your body is doing with what you are eating.
The info here has been invaluable for too tip to try and see if it helps. My doc is flummoxed by me too but I most definitely have DM.

 

[JohnEGreen]

There are atypical forms of diabetes like Mody a monogenic form of diabetes caused by the mutation of single gene. Some people with one of these forms of diabetes can have raised blood sugars but no other symptoms, and for periods of time requiring insulin and at other times not.

There is also Mitochondrial diabetes Mitochondrial disorders impair the function of mitochondria,. Depending on which cells have fewer or lower-functioning mitochondria, different symptoms may occur. Organs and body parts that require more energy, such as the heart, muscles and brain, are often affected.

The body’s production of insulin depends on mitochondrial activity. If a mitochondrial disorder affects the cells in the pancreas that produce insulin, diabetes can be a feature of the patient’s mitochondrial disorder. Mitochondrial disorders may also cause insulin resistance in multiple body tissues, which increases the amount of insulin needed to control the absorption of glucose from the blood into fat, liver and muscle cells.

And there is Diabetes with lipodystrophy which is a disorder that affects how the body stores and uses fat. Instead of being stored as body fat, under the skin, fat builds up in places it shouldn’t, like the blood and internal organs. This can cause diabetes, fatty liver disease, and other health problems. Lipodystrophy can be inherited from one or both parents, or it can just happen with no known family history.