Recently Diagnosed Type 2 - Feeling lost

[Dave85]

Hi All,

I am seeking a bit of support or advice.

I am a very active and healthy 36 year old male, I was recently diagnosed as being type 2 diabetic (initially picked up by my optician, due to blood vessel issues in one of my eyes)

I weigh 10 stone and have a body fat of less than 20% with a BMI of around 21.

I have been prescribed Metformin and I have recently undertaken a new blood test (at my request after 3 months) to see if the medication is working. I am awaiting the results to see if there is a drop in my HAB1C. (1st test of 58 mmol, 2nd confirmation test of 56 mmol)

My father has been type 1 most of his life, but I understand that the two are unrelated. I have a fairly decent knowledge of how type 1 works because of my father.

My blood tests confirm that my diabetes is not type 1.5 LADA.

I undertook the initial DESMOND course, which was interesting but offered me little help, due to me being already very active (resistance training and cardio training) and my diet has always been good.

I had an initial meeting with my doctors surgery diabetic nurse, but they could not explain why I have got type 2 and seemed to offer nothing more than "take the pills" and attend the DESMOND course. Sadly there seems to be little to no support from my doctors since and I seem to be driving all testing etc.

I am feeling somewhat lost due to not fitting your average profile for having type 2 diabetes, and in all honesty feel a little "hard done to" I appreciate that diabetes may not pick and choose who and how it affects people. I also appreciate that there are people who are far worse off than me.

I have seen the RE-Tune study and I am eagerly awaiting the results.

Can anybody help me? has anyone else had this experience?

Many Thanks

Dave

 

[Docb]

Hi @Dave85 and welcome to the forum.

There are a number of us on here who do not fit the normal, whatever that is, profile for T2.

I tend to think about T2 encompassing of all those things that can cause poor blood glucose control but are not classic autoimmune destruction of the insulin producing cells of the pancreas. The biggie is being overweight especially when combined with a carb heavy diet, but there are some for whom that is not the underlying cause. For us slim diabetics who are not obviously T1, the chances of getting to the bottom of why we have T2 are alsoy slim because the protocols do not call for anything other than the basic tests to see whether it is T1. My scientific mind does not like it because it wants explanations for anomalies rather than chucking the anomalous in with all the others, but what can you do.

On the more positive side, you can take control and do things to try and get your HbA1c below the diagnosis limit. The most powerful is changing your diet. Needs a bit of mind shifting because you have got to ditch most of those things which are promoted as being "healthy" and find a diet that keeps your blood glucose down. If you read around the forum you will find that there is a common theme to finding a diet appropriate for you .... reduce carbohydrates and compensate for the loss of calories by eating more protein and fat. It worked for me with a much higher starting HbA1c than yours.

Many of us use blood glucose monitoring to keep check on our blood glucose levels. Checking before and after meals can identify food stuffs that are causing you particular problems. That is the simplest route to adjusting your diet and means that you do not have to take the shot gun approach to diet changes which proves difficult for many.

Anyway, read around the forum and see how other slim T2s have approached T2 and got things under control and come back and ask questions. We are a friendly bunch and will try to help out.

 

[EmmaL76]

Hi there, you are not alone. I was diagnosed type 2, which was changed to type 1 on little more than the fact that I’m so skinny and did not appear to have any metabolic syndrome like blood pressure/cholesterol etc. however over the last few months I’ve been able to stay in range with diet and exercise which has led my DN to believe type 1 is unlikely. My consultant last December put me in for an urgent review in 2/3 months and that has never happened. So this afternoon I am speaking to an professor of diabetes (private) in the hope I get some answers. I have no issue with the type 2 diet, apart from the weight loss and constant exhaustion. I have a bmi of 18 now. 20 at diagnosis. I don’t fit any category and the head scratching and being told I’m odd really messes with my head. I will let you know how I get on. Just wanted to say, there are others out there.

 

[rebrascora]

My blood tests confirm that my diabetes is not type 1.5 LADA.

Hi and welcome

We have a few members here on the forum who are/were either misdiagnosed or don't fit the "normal" profile.
What tests have they done to "confirm" you are not Type 1.5 (LADA) and who interpreted those results? The Type 1 testing (GAD antibody and C-Peptide) can sometimes be inconclusive or difficult to interpret and needs to be overseen by someone who has significant experience of treating diabetes, so I would be sceptical of that statement above being a little to confident.
If you are fit and not carrying surplus weight and a healthy BMI then it is unlikely that Metformin will achieve anything, other than possibly digestive upset, but it is the standard first line of attack with medication.
As @Docb says, diet is a much more powerful factor in reducing levels and a "healthy diet" as prescribed by the NHS and even DESMOND is not necessarily what will help manage Type 2 diabetes, especially if you are already eating quite "healthily". Reducing the carbs and increasing the fat has been a revelation for me.... even though I am now diagnosed as Type 1. Testing before and 2 hours after meals will show you which foods and in what portion size your body can tolerate and help you to tailor your diet to your individual diabetes, whatever that is.

 

[Dave85]

Hi @Dave85 and welcome to the forum.

There are a number of us on here who do not fit the normal, whatever that is, profile for T2.

I tend to think about T2 encompassing of all those things that can cause poor blood glucose control but are not classic autoimmune destruction of the insulin producing cells of the pancreas. The biggie is being overweight especially when combined with a carb heavy diet, but there are some for whom that is not the underlying cause. For us slim diabetics who are not obviously T1, the chances of getting to the bottom of why we have T2 are alsoy slim because the protocols do not call for anything other than the basic tests to see whether it is T1. My scientific mind does not like it because it wants explanations for anomalies rather than chucking the anomalous in with all the others, but what can you do.

On the more positive side, you can take control and do things to try and get your HbA1c below the diagnosis limit. The most powerful is changing your diet. Needs a bit of mind shifting because you have got to ditch most of those things which are promoted as being "healthy" and find a diet that keeps your blood glucose down. If you read around the forum you will find that there is a common theme to finding a diet appropriate for you .... reduce carbohydrates and compensate for the loss of calories by eating more protein and fat. It worked for me with a much higher starting HbA1c than yours.

Many of us use blood glucose monitoring to keep check on our blood glucose levels. Checking before and after meals can identify food stuffs that are causing you particular problems. That is the simplest route to adjusting your diet and means that you do not have to take the shot gun approach to diet changes which proves difficult for many.

Anyway, read around the forum and see how other slim T2s have approached T2 and got things under control and come back and ask questions. We are a friendly bunch and will try to help out.

Hello, thank you for your reply and support, I don't do social media, so I am not used to posting on forums etc.

I like the idea you have suggested in terms of monitoring my blood glucose levels. It is not something I have really considered for T2. I guess I only associated monitoring levels for T1 only.

Like yourself I too have a bit of a scientific mind, I guess that is why I am struggling with the concept as there is no real answer.

I think one of my biggest issues is that I struggle with low energy levels (down to the volume of exercise) and find that it is difficult to eat really healthy whilst "feeding" my body.

I am anticipating my results from the recent blood test to see if my HbA1c has gone down, fingers crossed.

Thanks, I will explore the forum more and look to monitor my blood glucose against different foods.

Dave

 

[Gwynn]

Again what DocB has said is spot on. Hopefully a diet change can help your BG levels.

Let us know what you discover is your way forward and how you get on.

 

[Leadinglights]

Hello, thank you for your reply and support, I don't do social media, so I am not used to posting on forums etc.

I like the idea you have suggested in terms of monitoring my blood glucose levels. It is not something I have really considered for T2. I guess I only associated monitoring levels for T1 only.

Like yourself I too have a bit of a scientific mind, I guess that is why I am struggling with the concept as there is no real answer.

I think one of my biggest issues is that I struggle with low energy levels (down to the volume of exercise) and find that it is difficult to eat really healthy whilst "feeding" my body.

I am anticipating my results from the recent blood test to see if my HbA1c has gone down, fingers crossed.

Thanks, I will explore the forum more and look to monitor my blood glucose against different foods.

Dave

Many people who are Type 2 find that monitoring blood glucose levels to test the effect that various food have so they can modify their diet to help reduce their blood glucose and it can be very revealing as to what carbohydrates will increase levels but protein and healthy fats will be quite safe. Having plenty of those in your diet to replace the reduced carbs will help to maintain your energy levels.
One of the symptoms of high blood glucose is lack or energy and tiredness so it is important to keep good management and testing is crucial in that.
Inexpensive monitors and test strips can be found on-line, The GlucoNavil is one of the ones with the cheapest test strips which are the consumable part as are lancets (but many people do reuse those).

 

[Docb]

Must admit I don't find it hard to eat healthily, but my healthily is not the same as most other people's healthily. What is healthy for a slim, active person with poor glucose control is not necessarily healthy for someone who is overweight and has high cholesterol as well as poor glucose control. To me the blanket notion of "healthy eating" is a bit like the one size fits all designation of T2 diabetes. Works a lot of the time but not all of the time.

I like to think that my success was largely due to having taken on board the stuff that appears in the popular media and government handouts about healthy eating, looking at it against my needs and decided that most of it was best ignored, leaving me with one primary variable, (my scientific mind again), carbohydrate intake. Dealing with the one primary variable made life much easier in sorting out my diet. A few tweaks here and there, eliminating a couple of things, a bit of portion control were the main reason my HbA1c came down from 80 odd to under 40 in a few months.

So, a bit of understanding of the principles (thanks to the members of this forum), my trusty meter, a bit of help from medication and a bit more exercise got me there in a few months. May be a route for you, but then as I say, we may both be in the T2 box but we might not be in the same corner of it so might not be right for you. We will help you work out your route!

 

[Leadinglights]

Must admit I don't find it hard to eat healthily, but my healthily is not the same as most other people's healthily. What is healthy for a slim, active person with poor glucose control is not necessarily healthy for someone who is overweight and has high cholesterol as well as poor glucose control. To me the blanket notion of "healthy eating" is a bit like the one size fits all designation of T2 diabetes. Works a lot of the time but not all of the time.

I like to think that my success was largely due to having taken on board the stuff that appears in the popular media and government handouts about healthy eating, looking at it against my needs and decided that most of it was best ignored, leaving me with one primary variable, (my scientific mind again), carbohydrate intake. Dealing with the one primary variable made life much easier in sorting out my diet. A few tweaks here and there, eliminating a couple of things, a bit of portion control were the main reason my HbA1c came down from 80 odd to under 40 in a few months.

So, a bit of understanding of the principles (thanks to the members of this forum), my trusty meter, a bit of help from medication and a bit more exercise got me there in a few months. May be a route for you, but then as I say, we may both be in the T2 box but we might not be in the same corner of it so might not be right for you. We will help you work out your route!

As you highlight one size does not fit all and everybody has to find the right compromise for them which can be maintained long term.
The standard NHS advise seems sadly lacking in that. Having said that some people's diets are so bad that any changes will have a positive effect which will give them motivation to make more improvement.

 

[EmmaL76]

Hi there, you are not alone. I was diagnosed type 2, which was changed to type 1 on little more than the fact that I’m so skinny and did not appear to have any metabolic syndrome like blood pressure/cholesterol etc. however over the last few months I’ve been able to stay in range with diet and exercise which has led my DN to believe type 1 is unlikely. My consultant last December put me in for an urgent review in 2/3 months and that has never happened. So this afternoon I am speaking to an professor of diabetes (private) in the hope I get some answers. I have no issue with the type 2 diet, apart from the weight loss and constant exhaustion. I have a bmi of 18 now. 20 at diagnosis. I don’t fit any category and the head scratching and being told I’m odd really messes with my head. I will let you know how I get on. Just wanted to say, there are others out there.

Update, had my consultation and I can’t stress to you enough how complicated diabetes can be. I’ve now been put on a pathway for more answers as he said that with such low body weight and no signs metabolic disorders that type 2 is not likely. MODY is his best guess, but only time will tell. He did say metformin would have had little effect on someone like me and suggested other drugs and insulin’s. There will be a lot of trial and error I feel. I still don’t know what I am but least I know what I’m not. All I will say is if your suffering and you find your current diet unsustainable and are losing energy please push for more answers.

 

[Dave85]

Hi there, you are not alone. I was diagnosed type 2, which was changed to type 1 on little more than the fact that I’m so skinny and did not appear to have any metabolic syndrome like blood pressure/cholesterol etc. however over the last few months I’ve been able to stay in range with diet and exercise which has led my DN to believe type 1 is unlikely. My consultant last December put me in for an urgent review in 2/3 months and that has never happened. So this afternoon I am speaking to an professor of diabetes (private) in the hope I get some answers. I have no issue with the type 2 diet, apart from the weight loss and constant exhaustion. I have a bmi of 18 now. 20 at diagnosis. I don’t fit any category and the head scratching and being told I’m odd really messes with my head. I will let you know how I get on. Just wanted to say, there are others out there.

Hello, sounds like you are struggling too, yes i'm really interested to hear how it goes with your private professor. It seems that there is less knowledge out there regarding what I would call "Lean T2" Thanks for the reassurance that I am not alone. I'm sure there must be lots of others in a similar position, but it appears less talked about. I think I am keen to explore a reduction in carbs with a high fat diet, but i'm concerned how this will affect my energy levels, particularly for intense exercise. thanks

 

[Dave85]

Hi and welcome

We have a few members here on the forum who are/were either misdiagnosed or don't fit the "normal" profile.
What tests have they done to "confirm" you are not Type 1.5 (LADA) and who interpreted those results? The Type 1 testing (GAD antibody and C-Peptide) can sometimes be inconclusive or difficult to interpret and needs to be overseen by someone who has significant experience of treating diabetes, so I would be sceptical of that statement above being a little to confident.
If you are fit and not carrying surplus weight and a healthy BMI then it is unlikely that Metformin will achieve anything, other than possibly digestive upset, but it is the standard first line of attack with medication.
As @Docb says, diet is a much more powerful factor in reducing levels and a "healthy diet" as prescribed by the NHS and even DESMOND is not necessarily what will help manage Type 2 diabetes, especially if you are already eating quite "healthily". Reducing the carbs and increasing the fat has been a revelation for me.... even though I am now diagnosed as Type 1. Testing before and 2 hours after meals will show you which foods and in what portion size your body can tolerate and help you to tailor your diet to your individual diabetes, whatever that is.

Hello, I requested the islet cell anitbody level test after exploring Type 1.5, this came back as <5.0 u/ml which as I understand it is negative. To be fair this is a self diagnosis, I don't seem to be getting any support from my doctor or diabetic nurse, but I understand this is common atm with covid etc. Hence creating a profile on here and reaching out for support or advice.

I seem to be coping well with the Metformin, but I am discouraged that you say it is unlikely to achieve anything, I was hoping that my HbA1c would go down as a result of taking the meds, is this not the case?

Personally I found DESMOND to be a little patronising concerning diet advice, i'm keen to learn more about reducing carbs with an increase in fats, I am just concerned about maintaining energy levels, specifically for intensive exercise. I tend to weight train 3-4 times weekly.

Thank you

 

[EmmaL76]

Look up, I posted an update. Although I don’t feel I’m getting my answers just yet I’m at least a step closer. Low carb high fat works wonders for lots but has seen me go from running 4K a day, to hardly being able to push the hoover around. It’s so much harder when you don’t have any weight to lose. Maybe it’s just my body adjusting or maybe I’ve been treating my disease wrongly I have no idea, but not knowing what you are or what to do can drive you insane. All I’m saying is don’t get to the point where you mentally, physically and emotionally exhausted and at breaking point. I’ve been there. There are skinny type2 but there are also many wrongly diagnosed diabetics out there.

 

[Drummer]

@Dave85 I have never been able to eat the amount of carbs or to feel well on a 'healthy' diet all my life.
I was not diagnosed with type 2 until I was in my mid 60s, but just by going back to the Atkins type diet I started eating in my early 20s my glucose levels returned to normal.
I am 70 now but am not short of energy.
Although the diet is termed LCHF it isn't all that high in fat, I get by with the natural fat which comes along with the foods I choose - I buy chicken thighs rather than fillets for instance. I do have a pack of butter and a bottle of olive oil on hand, but I need to check the date on the butter once I am getting to the end of it as it can last for weeks if I can't get hold of organic eggs on a regular basis.

 

[rebrascora]

I have much more energy now than I did before but I don't do high intensity work, so I can't comment on that.
Is that essential to you or could you adopt more aerobic workouts whilst you try to lower your BG levels? There certainly can be a period of energy deficiency as your body gets used to burning a different fuel, particularly if it is running on high carb at the moment.

The antibody test doesn't always come back positive, even if you are Type 1 which is why a combination of factors including the c-peptide test, to see how much insulin you are producing yourself, and your clinical presentation as a slim fit person, need to be assessed by an experienced clinician like a consultant. It might come down to a balance of probability in the end, but the C-peptide result could be the clincher. The fact that your Dad has Type 1 adds a little extra weight to that balance of probability. I definitely wouldn't rule out LADA just yet. You could just be in the early stages.
Most Type 2s will produce lots of insulin, usually too much, but their body becomes desensitized to it..ie. insulin resistance. Metformin helps with this and makes the body more receptive again. It also discourages the liver from producing quite so much glucose, which it often does because the liver and pancreas are not communicating well due to a build up of fat around these organs. Both of these scenarios seem unlikely in your case.

These are just my thoughts from what I have learned through my own experience and this forum. GPs have very little training and understanding of diabetes and particularly the rarer types, which is why I would push for a referral to a specialist clinic to see a consultant, who should have more experience of the rarer forms of diabetes.

 

[trophywench]

@Dave85 - metformin has no direct effect on blood glucose, what it does help with is getting the body to use its own insulin, more efficiently since that is the prob. Opposite to T1 where we produce no insulin (or a miniscule amount) T2 will produce a normal amount at least, if it hasn't started producing more than normal to counterract the body's resistance to that insulin - ie keep revving the engine in order to remain parked.

Some folk carry more fat than they should around their internal organs even though they don't show this outwardly - thin outside fat inside - and this impedes the performance of the internal organs in a similar way to how excess body weight impedes the body moving physically - and its this impeded performance of this that and the others bits that combine to equal insulin resistance. Since there's no simple way of anyone normal getting absolute confirmation of TOFI - it's going to be educated guesswork whether that applies to you or not.

In any event, the advice to try and adjust your diet by using a glucometer is by far the best.

 

[everydayupsanddowns]

Welcome to the forum @Dave85 🙂

Yes you aren’t alone in your weirdness, nor in your feeling you've not really had the information and support that you crave in your appointments.

Yours certainly is an interesting case, and I can see why you wondered about the possibility of T1 or LADA, given your mid-30s age, weight and family history of T1. As @rebrascora said, antibody checks can be a bit tricky to interpret. Do you know if multiple antibody types were measured? I gather that measuring at least 2 makes the interpretation easier.

It might be worth asking your Dr for a cPeptide test, cPep is produced naturally alongside insulin, and by measuring, you get a sense of the body’s remaining production capacity.

@ianf0ster is TOFI, but I’m not sure if he had scans to measure organ fat, or was diagnosed in a different way.

I found this meta analysis of keto diets for athletes, which seems to suggest a bit of a mixed bag. Some improvements, some no imorovements but no decrements, and other anecdotal accounts of individuals who tried it, found it didn’t work for them and stopped.

Impact Of Ketogenic Diet On Athletes: Current Insights - PMC

The impact of a ketogenic diet (KD) (<50 g/d carbohydrate, >75% fat) on athletic performance has sparked much interest and self-experimentation in the past 3–4 years. Evidence shows 3–4-week adaptations to a KD in endurance-trained athletes were ...

www.ncbi.nlm.nih.gov

From the conclusion:

Available knowledge demonstrates no clear performance benefit to athletes following a KD, with some benefit shown mainly in short duration, vigorous-intensity tests, when weight loss was likely a confounding variable. While many of the trials provided no performance benefit, it is important to note that a KD often did not cause a performance decrement, particularly in recreationally trained athletes. Decreases in metabolic efficiency were common among trained athletes competing at >70% VO2max following acute adaptation.​

​

Despite inconsistent outcomes, we continue to see in practice (i.e., anecdotally), endurance athletes pursuing a carbohydrate-restricted dietary approach. Long-term anecdotal and subjective evidence is mixed, however. For example, “elite ultra-marathoners and ironman distance triathletes”, and ‘well-trained cyclists’ habituated towards a KD style of eating for 20 and 8 months, respectively, report remaining highly competitive. Whilst a “world-class vegetarian long-distance triathlete”, reported their worst-ever half-Ironman performance (21 weeks), second-worst Ironman performance (24 weeks), and failed to complete Ironman in week 32, discontinuing the diet thereafter.​

​

 

[ianf0ster]

HI @Dave85 I am/was a TOFI Type2. and that was the main reason for me choosing a Low Carb 'way of eating' in order to get my diabetes into remission. The idea of an 800 calorie per day diet for somebody who isn't overweight just sounds silly - as does bariatric surgery. What I didn't realise was how much weight I could still stand to lose - at peak I lost around 15% of my bodyweight by going low carb but eating to feel comfortably full at each meal. So no hunger and no loss of energy, just slight 'keto flu' symptoms fixed by taking electrolytes (sodium, potassium, magnesium).
Once I got my HbA1C nicely into the 40's I started eating more protein and fat and managed to gain back 5lbs of what I had previously lost, since I knew that because of my Dawn Phenomenon and the lag on the HbA1C that I was headed for remission even if I eased up.

 

[NotPink]

Hi @Dave85 and welcome to the forum.

There are a number of us on here who do not fit the normal, whatever that is, profile for T2.

I tend to think about T2 encompassing of all those things that can cause poor blood glucose control but are not classic autoimmune destruction of the insulin producing cells of the pancreas. The biggie is being overweight especially when combined with a carb heavy diet, but there are some for whom that is not the underlying cause. For us slim diabetics who are not obviously T1, the chances of getting to the bottom of why we have T2 are alsoy slim because the protocols do not call for anything other than the basic tests to see whether it is T1. My scientific mind does not like it because it wants explanations for anomalies rather than chucking the anomalous in with all the others, but what can you do.

On the more positive side, you can take control and do things to try and get your HbA1c below the diagnosis limit. The most powerful is changing your diet. Needs a bit of mind shifting because you have got to ditch most of those things which are promoted as being "healthy" and find a diet that keeps your blood glucose down. If you read around the forum you will find that there is a common theme to finding a diet appropriate for you .... reduce carbohydrates and compensate for the loss of calories by eating more protein and fat. It worked for me with a much higher starting HbA1c than yours.

Many of us use blood glucose monitoring to keep check on our blood glucose levels. Checking before and after meals can identify food stuffs that are causing you particular problems. That is the simplest route to adjusting your diet and means that you do not have to take the shot gun approach to diet changes which proves difficult for many.

Anyway, read around the forum and see how other slim T2s have approached T2 and got things under control and come back and ask questions. We are a friendly bunch and will try to help out.

I was not overweight, not eating grain carbs because of IBS restrictions...and was diagnosed 2 years ago with pre Diabetes 2. I took regular exercise like walking etc. No one was more shocked than me and my clinical dietician at the time. No more info beyond that diagnosis. So I just accepted it after being in denial for a while. I bought a BG monitor to monitor my readings and found some tweaks I could make. The monitor helped me accept I was pre diabetic and helped me understand the affects that 'underground' veg was having on my readings. Anyway we are all different. We all have different reactions to food types and it is the beginning of a journey. Good luck.