Hello all. This is my first post on the diabetes forum.
I am 64. In 5 months I have gone from an HbA1c value of 41 to 53. I'm awaiting treatment and am taking no medication yet. My symptoms seem much more severe than I read others mention. For a given value, such as 53, is there quite a wide range of possible severity? If you see what I mean.
As for actual symptoms -- I am very weak to the point of being housebound 95% of the time, any minor exertion is very dicufficult (for example I can not shower most days as it exhausts me), sometimes I get tachycardia and will feel very unwell. I am better on waking and get worse in the afternoon and evening until I find it hard to move by bedtime. My blood sugar is approx 6.0 on waking and 12.0 at bedtime with no food for several hours before.
I seem to have had these symptoms for over a year and that means when my HbA1c was showing lower values like 41 or less. Is this possible? I am wondering if the HbA1c is under reading my diabetes and if I should ask for another type of confirmatory test (I am in the UK).
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Cetus
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I suspect your symptoms are due to confounding factors rather than diabetes per se, but it's certainly possible. An acquaintance didn't even realise she had diabetes until she started developing peripheral neuropathy.
HbA1c represents an average. It carries no information about blood sugar excursions (ie., the extent to which your blood sugar goes up and down). The primary characteristic of T2D is loss of control, as indicated by your fasting and postprandial readings; a catastrophic rise in HbA1c happens a long time (months to years) after the initial regulation failure.
There is no "treatment" for T2D because it's not a disease as such - it's a healthy body's protective response to a very-high-carbohydrate diet. It might not feel like that, but your body is being given a choice between rapid death and prolonged ill-health, and it chooses the latter.
So I wouldn't just wait. Nobody is going to help you fix this - the only person who can fix it is you, and it is very easy to fix.
Would you like to join the LCHF group? I'm the group "Ambassador". We've had a few members in the past who put their diabetes into remission simply by eating appropriately; statistically, 70%+ of diabetics in your position (ie., not too serious) can achieve this result, but the longer you leave it, the lower your chances become. You might want to contact the NHS Diabetes Prevention Programme if you want clinical support, but frankly, there's not much point. There's nothing complicated about emptying your cupboards and putting different things in them.
Even if the OP has some problem other than diabetes, He/she can still address the diabetes without any risk, and see if the other problem(s) goes away. If it doesn't go away, then at least diabetes isn't in the picture confounding the diagnosis. No?
No. It may be that other problems would be adversely affected by a change to LCHF. Confirmation that the diet would not have unintended consequences is a wise move. It is also possible, given his symptoms that it is not Type 2 diabetes but, perhaps, 1.5
We also have no idea of what his diet is currently like or what his current weight is.
>> It may be that other problems would be adversely affected by a change to LCHF.
What "unintended consequences", specifically? You seem to be putting this forward as a virtual certainty, when the fact is that 99% of people in this position respond positively to low-carb, or at least experience no negative effects. I won't say it's impossible, but you're talking about an incredibly unlikely scenario that would be easily remedied: if the OP doesn't feel better, he can stop doing it.
You also seem to be completely ignoring the fact that every day that a diabetic consumes a high-carb diet takes him a step closer to a serious life-altering condition. Whether it's diet-related or autoimmune in origin makes no difference: a diabetic's body cannot process carbohydrates, so it is fundamentally pointless to consume them.
If he/she is already eating a LCHF diet, then he can say so, but given those blood sugar readings, I'd be willing to bet good money that he isn't.
And what does his weight have to do with the price of fish?
I'm just wondering if the OP is taking statins. So many people are that they neglect to mention them. That would explain the extreme fatigue.
You are not a doctor and yet you behave like one. It is always advisable for someone embarking on a new diet to clear it with their GP. There may be stomach issues or, indeed, cardiac issues. Your “ambassador” role is to point people in the direction of LCHF and not to push them there “no ifs no buts”, to use an oft used phrase these days. You are giving advice based on very little information on the situation of the OP. Not sensible.
>> You are not a doctor and yet you behave like one.
I could accuse you of the same thing, but I credit posters with enough common sense to read your posts and mine and make up their own minds. If you look at my original post, all I did was point the OP in the direction of the LCHF group.
The idea that someone should consult their GP before going to the supermarket is absolutely ridiculous, and one of the reasons I hang around in this forum is to protest against the medicalisation of everyday life. I'm advising the OP to eat meat and vegetables, or at least to give it a try. If he/she has these unspecified "stomach issues" or "cardiac issues", eating wholesome food isn't going to make them worse.
I would also add that medicine is not magic. There is no arcane knowledge there accessible only to those who have performed the secret rites. T2D is pretty comprehensible to anyone with a background in physics, chemistry and engineering. The corollary, I'd suggest, is that anyone without that background is likely to get the wrong end of the stick, and I can't help wondering if that's what's going on here.
If you honestly believe that there is some subset of the diabetic population who will be harmed by scrambled eggs for breakfast and a salad for lunch, spell it out. What's the mechanism? What are the circumstances under which the problem occurs? I'm honestly quite tired of these vague accusations of dangerous advice. I've tried to elicit information from you in the past - facts that might support your position - and you've given nothing back. It's hard to maintain any sort of sensible dialog when you do that.
I realise that some people have curious allergies and whatnot, but I'm sure the OP knows his own body well enough to avoid such things.
You assume an awful lot. A lot of people who are at the end of their tether will grab at anything. You know that which is why you tackle your ambassadorship as you do. I have not attempted to diagnose anyone or prescribe a particular way of dealing with their medical problems. That is your modus operandi. At no time did I indicate that visits to supermarkets should be preceded by visits to GPs. That is your exaggeration.
Many cardiologists might be a little worried about someone who was possibly advising people with heart conditions to bulk up their diet with fat. Many nephrologist might also be a little worried about some of their patients being told that increasing proteins in the diet could do no harm.
A low carb diet is great for diabetes to induce ketosis, decrease weight and have a positive effect on insulin resistance. I still maintain that anyone venturing down that path should ensure, as best they can, that it is not going to effect them negatively.
It is not only medication that can come with side effects!
Have you read this on the front page of the LCHF forum:
“Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.”
>> Many cardiologists might be a little worried about someone who was possibly advising people with heart conditions to bulk up their diet with fat.
And they would be wrong. They'd be doubly wrong in the context of a diabetic body, which is at the greatest risk of heart disease from diabetes itself. If you'd like to refer these particular cardiologists here, I will happily debate biochemistry with them. For the moment, I'm debating with Osidge. To clarify: I am not telling anyone to "bulk up their diet with fat". LCHF involves completely replacing carbohydrate-based energy with fat-based energy. The science on this is very clear indeed; if it were not, people like Virta Health would have been shut down yesterday, and Dr David Unwin would have been struck off even sooner. Even that last bastion of cargo-cult science, the ADA, is cautiously endorsing low-carb these days.
>> Many nephrologist might also be a little worried about some of their patients being told that increasing proteins in the diet could do no harm.
The average LCHF diet involves less protein than the typical SAD diet. Anyway, you're just repeating an urban myth; if it were true, Americans would all be dropping like flies with acute kidney failure. Unless someone has severe renal insufficiency - which would show up regardless of their protein intake - you'd have to eat an incredible amount of protein, for years on end, to cause any actual harm. Show me a nephrologist who would argue with that and I'll show you someone who bought his medical degree in Nigeria.
>> It is not only medication that can come with side effects!
Advising someone not to do something - as you are - is still advice. That's your prerogative of course. A site where nobody tells anybody anything is pointless.
The disclaimer on the HU site is merely (a) the lawyers covering their backs and (b) an admonition to the reader to double-check whatever they read here, which of course I'd wholeheartedly encourage anyone to do.
I still maintain that anyone venturing down that path should ensure, as best they can, that it is not going to effect them negatively.
Then spell out the possible negatives, and advise people how they might be forestalled.
And before you give your advice, what do you find out about the people you are advising - nothing beyond what they might have said. You are irresponsible.
You keep modifying your original advice in every reply. Sadly, if I had not challenged you, with questions i know the answers to, you would not have clarified some things. If I carried out my clinical research in the way that you give ambassadorial advice, I would not be employed.
Perhaps you should think more about your advice and it would not be up to others to flag up the negatives. That said, I guess you are from the US!!
By the way, I have not advised anyone to follow a LCHF diet. My concern was that they check with their doctor in case there were medical reasons to choose a different or modified action.
For those who are considering a low carb diet, here is information from Newcastle University where the research was done: ncl.ac.uk/magres/research/d...
So you've said before. Yet you've still been unable to describe any actual scenario in which my advice could do more harm that good. I've tried to engage you on the basis of facts, and all I get back is ad hominems.
>> You keep modifying your original advice in every reply.
My advice is consistent. I have added detail in response to your questions. I don't want to flood people with detail because most people don't want to read long essays.
>> if I carried out my clinical research in the way that you give ambassadorial advice, I would not be employed.
I honestly doubt that you're a researcher given your attitude and lack of scientific understanding. I'm not pretending to be something I'm not: I'm describing basic biochemistry, in a way that (hopefully) the average person can understand, so that they can take control of their condition. That's all.
>> here is information from Newcastle University where the research was done
The Newcastle Diet is not a LCHF diet. Newcastle University has done no research on LCHF, as far as I'm aware. The ND is a high-carb (in percentage terms) low-fat low-calorie diet. It only works because it reduces absolute carbs to below the threshold required to induce ketosis. The reduction in fat and protein is at best unnecessary, and at worst counterproductive. Its underlying hypothesis - that diabetes is caused by weight gain and is reversed by weight loss - is nonsense, easily dismissed with existing statistics and clinical observations.
>> I have not advised anyone to follow a LCHF diet.
No, you're advising them not to follow it, typically with dark allusions to heart disease.
>> The NHS endorses a low carb approach as appropriate
The Low Carb Program can help anyone with type 2 diabetes or pre-diabetes take better control of their condition.
Who is it suitable for?
Anyone living with type 2 diabetes or pre-diabetes.
At least the NHS is on the same page as me, then. I must say, I find that pretty surprising.
I am on the Programme Management Boards as a co-applicant for three dementia research projects, and a Department of Health and Social Care Policy Research Unit (dealing with Cancer Awareness, Screening and Early Diagnosis). I am also on the Medical Research Council UK Brain Bank Network Management Group. On the healthcare side, I am a member of the NHS England East Midlands Clinical Senate.
The Newcastle Diet works and is backed up by research. Is it wrong because it is not your advice?
I'm starting to understand why the NHS is in the mess that it is.
The Newcastle Diet does not work very well. That is, it works less well than simpler interventions. Hilariously, NU's own followup study shows that it's only marginally effective, and one could predict such a result from first principles. I oppose the ND on the basis that they're reinventing the wheel, and it's not even a very good wheel.
Rather than continue this pointless sniping in someone else's thread, I'll start another one on the subject of evidence-based interventions.
As with all dietary interventions, they rely on the ability of dieters to modify their diets long-term. TheAwfulToad’s diet desire for us all is no different.
I've written a full critique of that paper as a separate post, so feel free to critique my critique.
Frankly, their conclusions are dishonest. They take "remission" to mean HbA1c<48mmol/L, and even that generous target yields only 35% success ... implying that 65% of the intervention group are still definitively diabetic. Hardly something to shout about, I reckon.
As with all dietary interventions, they rely on the ability of dieters to modify their diets long-term.
They rely first of all on the diet actually having some sensible theoretical basis. It doesn't matter how well people adhere to a diet that can't possibly work even in theory.
I would also add that a diet that's too difficult to adhere to is fundamentally worthless, even if it works in theory. While you imply that LCHF is hard to adhere to, this simply isn't true. Most LCHF programmes have excellent compliance rates even with minimal monitoring and followup. Dr Unwin and Virta Health have both published their compliance figures.
A 35% reduction in the number of people who have glucose levels below the level that indicates diabetes is a good achievement. There is nothing dishonest in that. You are evangelical in your communications and look where that has got the US.
There is nothing wrong with the Newcastle Diet. It obviously does work or it would have produced no remissions.
Dissing the various ways that diabetes can be controlled is not helpful nor is using sensational language. You have not yet taken onboard the qualities of an Ambassador😂
The ND is the worst of the lot. If you disagree, you can explain why with reference to those figures. I am not being "sensational" or "evangelical". I'm discussing experimental results.
Are you, as an NHS researcher, up to the task? Go on. Surprise me. Maybe I've made a mistake in my interpretation!
You are sensationalist in the language you use. You also quote the virta health research which was about diet *and support* and turn it into diet only. The virta research and the work undertaken by diabetes.co.uk show the importance of support in making the diet work. So much for your scientific approach.
And Unwin shows that it isn't particularly important.
Of course Virta Health offer support. They're a commercial organisation. Support is the only thing they can sell. The diet itself is not proprietary.
I notice that, while accusing me of being unscientific and sensationalist, you still have no fact-based response to my other post. Why are you even posting in this thread?
My assertion is simple: straight LCHF is simpler and gives better results than the ND. If you have a rebuttal that doesn't involve personal remarks, spell it out.
So the research that you point us to has a large part of it that is not necessary to achieve the results of the research? That makes no sense.
How do you think it will be for those who are not LCHF zealots like yourself? How about those who do not have the willpower that you do? We now have this in the UK that provides support lowcarbprogram.com/how-it-w... If people feel that they want to try to do their own thing, like you, then that is their choice. For others who need support to keep them on the straight and narrow there is an alternative. There is no shame in seeking support if you need it and it is NHS approved. See what I did there? I offered two ways of achieving good outcomes without telling people they were poisoning themselves or limiting them to no support . Good? In my 21 years with diabetes I have learned one precious thing. We are all different both physically and mentally. One size does not fit all. Allow for the diversity that exists in humankind. Making people feel failures because they need some extra support is not cool.
>> So the research that you point us to has a large part of it that is not necessary to achieve the results of the research? That makes no sense.
I don't even understand what you're saying there. The point of research is to find out what works and what doesn't. If you test a multivariate intervention then you will inevitably find (upon further investigation) that some of the changes you made are less important to the outcome than others.
Unwin is saying that, in his experience, when patients are given a proper diet plan, no extensive support is necessary. It's not my fault if it doesn't accord with your view that eating food requires ongoing handholding from a medical professional, or that "willpower" and zealotry is somehow involved. That isn't what he found. It's also my own experience in the LCHF group, and from giving advice in person: once people try it, they're enthused, and they never look back.
Most people who are ill are motivated to get well, to the point that they will grasp at straws. Give people something that actually works and they'll usually be over the moon about it. You are a curious exception to that general rule; no amount of "support" would ever convince you to cure yourself. It seems that your diabetes defines you and you are afraid to let it go.
>> For others who need support to keep them on the straight and narrow there is an alternative.
Well, that's nice. I don't recall criticising support where it's offered. What I object to is "supporting" people while offering them a fundamentally unhealthy diet like the ND, or "calorie counting", and turning them away from more sustainable ideas.
>> We are all different both physically and mentally.
In some minor respects. But all humans have the same machinery inside. Offer most humans a nutritious, tasty diet and they'll carry on eating it. Offer them something that's nasty and that doesn't help their condition, and they won't.
I'm still waiting for your supporting data on the ND showing that it's superior to the other alternatives. Come on - just in one aspect? One thing?
Read the link. Unwin is part of the program that has support of a multifactorial kind.
On your first point the great results of the research included the support - very much so. You cannot just ignite the support and day that the same results would have been achieved without it. That is not the way research works. You will not find out that the research is superfluous unless you repeat the piece of research without the support. The results of the research which you held up as a beacon included diet and support. Sorry.
As far as I know, the ND has not been shown to be unhealthy - that is your sensationalist terminology. Nobody is being turned away from a basic LCHF diet if that is something they want to try. It is all about choice and manageability.
Sorry to disappoint you but I have normal bloods now and no complications after 21 years. without going down your path. Sorry to disappoint.
For others reading our conversation. Take care if you have health conditions that would make you feel unwell eating a high fat diet.
High-fat foods may trigger mild to severe abdominal pain for various reasons. Some relatively common disorders, such as reflux and irritable bowel syndrome, might be to blame. More serious conditions, such as gallbladder, pancreatic or inflammatory bowel disease, can also cause discomfort after eating high-fat foods.
I did read the link. I see Unwin's face there. However, the fact that the NHS has an app for that does not prove that it's needed.
From Unwin's report:
"The authors were struck by the energy and enthusiasm as patients took control of their lives instead of waiting patiently for doctors and nurses to ‘solve’ their problems."
"The average person with diabetes required about 30 minutes of doctor or nurse time in the first month, then about 15 minutes per month. The groups run with about 8–10 patients in each time and last just over an hour, so this helped our efficiency. This level of support is not needed indefinitely: after about four months most can be ‘discharged’ to more routine follow up."
That's pretty bare-bones, isn't it? Less than two doctor-hours per patient to cure diabetes. Talk about good value for money!
Obviously the patient needs some instruction beyond being told "eat less carbs; now go away". If 90 minutes of education meets your definition of "support", fine, let's move on.
>>As far as I know, the ND has not been shown to be unhealthy
Did you even understand the experimental results? The ND results in and of themselves show the diet to be unhealthy, at least for diabetics: 80% of the patients eating it are still diabetic or prediabetic after 2 years. That sounds pretty damn unhealthy to me, especially since Unwin is getting far better results by just telling people to eat proper meals.
Low-fat, low-carb, high-protein calorie-controlled diets never work, for anybody. They don't work because the patient finds it too unpleasant, and the fact that it's unpleasant strongly suggests that it's unhealthy: all animals instinctively reject food that doesn't sustain them.
I assume we have at least established that the ND is less effective on all counts than LCHF for diabetes treatment?
>> Nobody is being turned away from a basic LCHF diet if that is something they want to try. It is all about choice and manageability.
This is untrue. We've had several stories on HU groups about people being belittled and berated for attempting an LCHF diet. It happens. Regularly. While some doctors are supportive, most are not. Anecdotally, diabetic nurses seem to be the worst for pulling this stunt.
The NHS Eatwell plate (almost entirely carbs and close-to-zero fat) still represents mainstream public policy, and the NHS healthy-eating advice is full of discouraging (and false) remarks about LCHF. If the intention isn't to turn people away, then what is it?
>> Sorry to disappoint you but I have normal bloods now and no complications after 21 years. without going down your path.
So you said. I think that must be more disappointing for you than for me. I guess continuing to take metformin allows you to continue claiming that you're diabetic.
>> Take care if you have health conditions that would make you feel unwell eating a high fat diet.
As I've repeatedly acknowledged, a tiny minority of individuals can't deal with dietary fat. People who have had their gallbladder removed, for example. That still leaves the vast majority who can thrive on it.
IBS and suchlike are not contraindications: LCHF may make them worse, or it may make them go away completely. The simplest course of action is to try it and see. The potential downside is a few hours of pain. The potential upside is that you fix your diabetes (and perhaps a whole bunch of other stuff). A no-brainer, I would have thought.
Remember we are talking specifically about diabetics here. If you have a peanut allergy then you stop eating peanuts. If you can't tolerate gluten then you eliminate gluten. If you're diabetic, you reduce your carbs to a bare minimum, and you find a way to work fat into your diet. There is no clinical justification for telling a diabetic to continue eating carbs and/or minimize dietary fat, whatever other problems he might have.
As I've said before, this idea of "patient choice" in the case of T2D is unmitigated nonsense. Giving the patient the "choice" to kill himself slowly, on the public purse, is a betrayal of the doctor's oath and a massive waste of everyone's time and money. The patient does not understand the biochemistry and doesn't want to. He just wants to be told how to get better.
Thank you. The language in your last reply - which was way after you said you were to stop posting on this thread - is exactly as a I have described it previously. It is not for you to tell people what to do and that if they don’t follow your instructions they are killing themselves at public expense.
So ... we're back to supercilious comments about what opinions I'm allowed to express. I took the time to post some relevant, factual responses to your challenges, and that's the best you've got?
No hard facts you can muster in defence of the ND, because it's indefensible. You can't list out the serious downsides of LCHF because none have ever been reported in the literature. You can't answer my characterization of faulty medical interventions with anything except "you shouldn't say that". And I have a strong suspicion you don't even understand my critique of the ND, because despite your high-falutin' activities within the NHS, you've given me no reason to conclude that you have adequate knowledge of science, statistics, or biochemistry to carry this debate.
If you were the ordinary man in the street, your ignorance and religious faith in the Establishment would be excusable. I'd just shrug and walk away from the conversation. But you're not. In some small way you appear to be influencing public policy. I believe it's important that other people see what's going on here, because the fact is I've wiped the floor with you. You've been utterly unable to defend your position, or even to spell out clearly what your position is. As far as I can tell, you recognise that diabetics shouldn't eat carbs, and you even accept that the NHS now promotes LCHF as suitable for all diabetics, on the basis of Unwin's work ... but you object to my arguments supporting LCHF (and Unwin) because you dislike me personally.
You've backed yourself into a dogmatic corner and made yourself and your employer look foolish. No doubt you're used to bullying your way through meetings with non-sequiturs and snide remarks because British people today are so overly polite ("every point of view is equally valid and we should not be judgmental") that it all goes unchallenged. That works out less well online.
I will continue to post facts if people seek diet-based interventions or appear to be going downhill on "conventional treatment". You are at liberty to post your strange view of the world, of course, but if you do so I will remind people that you're wrong.
Thank you for your comments. I have no problem with LCHF or ND or any way that people can successfully exercise good blood glucose control. I never have had. My comments were only about the need to ensure that any intervention was suitable and that those who need encouragement, whether by peer support, medical support or an app, be allowed to have it. The only thing I took exception too was your choice of language and the taking away of choice.
If it makes you feel good, please continue to believe that you have “won”. It is not a game to me but apparently you think it is. I hope that the people on this forum take this whole thread into account when deciding their diabetes management strategy.
Finally, you accuse me of bullying when I am advocating choice. As far as you are concerned, it can only be done your way or people are accused of suicide at public expense. Who is the bully?
Good grief. I think I finally get it. You don't actually care whether a treatment works or not. The only thing that matters to you is that the patient gets to choose his treatment. If he wants to go for crystal healing or homeopathy or veganism, hey, it's all good. If he wants to dance around naked in a field, smeared in chicken poo and banging goat skulls together, that's good too. It's treatment, and we mustn't judge what's right or wrong.
I'm not treating this as a game. I'm very, very serious. As I said before, I wouldn't be getting so upset if you weren't involved with the NHS. I find it absolutely frightening that you don't know anything about the physiology of diabetes. You don't understand statistics and therefore can't interpret and compare the outcomes of (say) ND vs. LCHF. You know nothing at all about dynamic systems theory and therefore cannot distinguish the removal of a saturating input (LCHF) from the disabling of an adaptation/observer loop (Metformin). So you conclude that I'm forcing people into a corner - to you, these things are all equivalent.
Unless, of course, you know perfectly well how the science works, but your political beliefs override it all.
I assume we're going to have a lot more of this. It's a pity. Anyway, I'm done telling you off. This is one of the few occasions a debate on this subject has plumbed the depths. I'll try to stick to solid facts in future confrontations, and hope they speak for themselves.
I am finally very pleased that you will stick to facts in the future and not call people names because they need to take a different path to you. Was this your last, last posting😂
I am the original poster. Thank you for your comments, some of which is very useful indeed. I am providing some further information here which may be helpful.
Fist of all, I am not on statins. I take a calcium channel blocker (lercanidipine) and a sartan (candesartan) both for blood pressure. I also take an alpha blocker (alfuzosin) to overcome poor urinary flow. I take no other medication although my GP is now prescribing metformin until I see the diabetes nurse as I am having troublesome symptoms which seem to me similar to full-blown uncontrolled diabetes gone wild.
I am 64.
For a couple of years I have been VERY unwell with chronic confused delirious thinking and stupendous weakness, sometimes tachycardia. More recently I have developed a terrible gasping breathlessness as if I had been holding my breath on waking up in the morning in bed which can be clearly identified as "Kussmaul type breathing" found in many illnesses but notably in ketoacidosis. Also I had a disabling muscle stiffness which prevented me bending easily which was relieved by potassium supplements. These symptoms flared up earlier this year but are now under better control although they will rear up unpredictably.
Over the years my doctor has insisted this was all psychological despite my many protestations but I could not get past him as I didn't know what condition to explore.
I appear to have a genetic B12 deficiency (not that MTHFR thing which is a common worry for a lot of people on the internet but something far more clinically significant). As this was overlooked for years it this caused some exceedingly severe symptoms. GPs are typically sceptical of any B12 diagnoses from patients, so I have had to manage this myself with B12 injections and a wide range of other supplements, some of which (such as carnitine and biotin) may have had a dual role as being very useful to my then-undiagnosed T2D. I have been referred to a specialist inherited metabolic diseases clinic but am to ill to make the journey.
My diet is conventional. Not particularly healthy with not a lot of vegetables. I've been eating far more than usual sweet or carbohydrates food, especially as I get a distinct boost approx 15 minutes later. This seems strange to me but it is very pronounced and led me to wonder if I had a genetic metabolic disorder adversely affecting energy production inside the cells, such as "MELAS". Does the energy boost (for example I type very much more quickly and accurately) make sense?
My BMI has grown enormously over the last 2 years and is now a totally shocking 40 but without these energy boosts from food (which I am relying on to write this) I become significantly dysfunctional for most of the day and can't not perform simple tasks like taking a shower. I eat in order to function at all to get the medical help I need. It hasn't worked out well. My weight has ballooned to a colossal 125kg (275 pounds or 20 stone) and my height is 5ft 9in.
I sometimes wonder that my food intake is not all that massive and maybe some of the food is not converted to energy but just gets stores straight away. Can this happen to a significant degree in T2D? I saw a video explaining ketoacidosis in which blood sugar was not the real problem but there was a cascade of symptoms arising from fats flooding the cell and turning into ketones. This made me wonder if the HbA1c or blood glucose reading were not really measuring all the possible dysfunction. Any thoughts?
I twice rang the diabetes.co.uk advice line but got disappointingly little useful information despite having carefully thought through my questions in advance and written them out. After the calls I was left with the understanding that my high blood sugar levels were causing me problems, although I feel very unwell on waking when my blood glucose is 6.0. An hour after eating a light meal during the day my blood glucose is a respectable 7.0 but, for some reason, by bedtime it is 12.0 even without having eaten for a couple of hours beforehand.
Sorry to have flooded you with so much info but it seems I didn't include enough at first. Any information or feedback from anybody would be much appreciated.
Cetus : in view of @Osidge's objections, I'll try to confine myself to general observations and food for thought (ie., guesses!). He/she is quite right that it's not my business to give you a diagnosis online.
Honestly, I don't see how anyone can take that cocktail of incredibly powerful drugs, while eating an inadequate diet and carrying that quantity of excess weight, and be in any state other than the one you find yourself in. The only thing that surprises me is that the doctors are surprised
You seem to have a pretty good handle on what T2D is from your own research, so hopefully what I say to you here will make sense in that context.
1) Given your existing prescriptions, I can take a good guess that you do not have kidney disease, which is a good start.
2) Your breathlessness in the morning could be simply sleep apnoea as a consequence of weight gain. Ketoacidosis is a life-threatening condition which can only occur when your pancreas is producing no insulin at all; since your doctor has prescribed metformin, this isn't the case for you (yet...).
3) My training is in psychology, not medicine. I doubt your symptoms are "psychological" (although we might debate exactly what that means - I suspect your physical symptoms are causing great anxiety). I'd qualify that by (again) pointing out that that is merely an opinion, not a diagnosis.
4) You are diabetic, so lethargy improved by a dose of carbohydrates is completely normal. The reason comes in two parts. Because your bloodstream is flooded with insulin, your body is incapable of accessing energy stored in fat cells, which it would normally use to keep things running between meals. So its only source of energy is dietary glucose (carbs). However it has almost no ability to burn glucose for energy; your cells are not listening to the insulin signal. You therefore feel dreadful unless you give yourself a "shot in the arm", essentially forcing glucose into your cells. Diabetes has been eloquently characterized as "starvation in the midst of plenty".
5) Having said that, there's probably something else going on here. The exhaustion you describe is more extreme than I would expect.
6) "I sometimes wonder that my food intake is not all that massive and maybe some of the food is not converted to energy but just gets stores straight away."
Yes. That's precisely what's happening. Although your body has relaxed its tight constraint on blood sugar, it has to draw the line somewhere or you'd die. When you eat carbohydrates, there is really nowhere for them to go. Some small fraction of them are used to fuel your general metabolism, but your state of general and extreme insulin resistance - as noted above - means that this is very inefficient. Your pancreas cranks up insulin to 11 to force your fat cells to dispose of the excess - simply because fat represents the last-ditch possibility. Your fat cells are expanding, and probably also proliferating, to soak it all up. You are most likely depositing fat around your internal organs too, which is bad news.
7) "After the calls I was left with the understanding that my high blood sugar levels were causing me problems, although I feel very unwell on waking when my blood glucose is 6.0."
Diabetes is not necessarily about "high blood sugar". The first and most pronounced issue is low and high excursions outside of the normal range. My personal hunch is that this is a deliberate metabolic adaptation, not a malfunction, but that's by-the-by. It's these big swings in sugar that cause the physical and mental symptoms of diabetes.
I can really only reiterate my advice to stop eating carbohydrates. As noted, your body is no longer using them for energy anyway - or at least, it's barely limping along. When you consume carbs, all they do is raise your blood glucose until such time as it can be (painfully and slowly) stashed away as fat, never to be recovered. For you, carbs are just toxic.
Human bodies have two sources of dietary energy: carbohydrates and fat. You can replace those carbohydrates with dietary fat. Remember, you've only lost half of your metabolic powerhouse - the carb-fuelled half. The fat-fuelled bit is still working fine, but you need to let it do its thing.
It works as follows. When you "switch off" carbohydrates and eat fat instead, your pancreas will stop pumping out so much insulin, and over the following hours and days your body will adapt to that scenario, ie., your insulin resistance will recede. Since your bloodstream is no longer saturated with insulin, your body will again be able to access fat stores, and it will also burn dietary fat - which is now the only thing coming in - as fuel. You can expect some "wobbles" as this recalibration proceeds - for example, many people find that a "leaky liver" condition persists for a few months, resulting in in modest hyperglycemia on waking. In general, though, this adaptation is extremely rapid, and in your case you should find an almost instant improvement in mood and energy levels. I'm not suggesting this will cure all that's wrong with you (you clearly have some problems unrelated to T2D) but I'm confident you'll feel an enormous improvement within a month or two. You may even find the improved diet helps with your B12 issue.
The main hurdle with switching to a LCHF is psychological. Most people are so convinced that they have to keep eating carbs, and that dietary fat is a deadly poison, that overwhelming guilt prevents them from doing what needs to be done. I do hope you'll at least drop in on the LCHF group and talk to people who are doing it. They're all happy, healthy, slim (or slimmer!) and have excellent cholesterol test results. Hopefully you'll be able to see first-hand that this does work, and it doesn't give you an instant heart attack (in fact, the most common cause of heart disease today is untreated diabetes, not "saturated fat").
I'll just leave you with an example LCHF eating plan (this one is tuned for diabetics rather than the general population). I'm not suggesting you'll want to eat exactly this. It's just that LCHF is often misrepresented, and I'd like to show you what it really looks like.
Breakfast : three eggs, scrambled in butter, with a dash of cream, pepper, and salt, and a dusting of Gruyere cheese. One good-quality sausage. Small bowl of full-fat Greek yoghurt with some walnuts. Side salad with Ranch dressing.
Lunch: selection of cheeses and cold ham with celery sticks, radishes, sweet pepper slices, and pickles.
Dinner: chicken portion roasted together with mixed vegetables: courgettes, Florence fennel, cauliflower, onions, pumpkin.
Incidentally, it is generally safe to do this even while taking metformin. In an ideal world it would of course be best to discuss this with your doctor, but from conversations with others, the average GP is not familiar with low-carb diets, and "diabetic nurses" seem to have little to no understanding of the disease or diet-based treatments. So you may well receive no help at all from that quarter.
“I have been referred to a specialist inherited metabolic diseases clinic but am to ill to make the journey.”
I attended an endocrinologist for a time and he gave some great advice both about my diabetes - which was not why I was seeing him - and my pituitary problem - which is why I was seeing him.
In seeing an endocrinologist at the specialist clinic, I hope you get some answers to your issues. They seem somewhat more complex than straightforward Type 2 Diabetes. In the meantime, perhaps you need to consider a healthier diet until you get to the specialist. If necessary, contact the medical secretary for your consultant and explain about you inability to travel. They may be able to make special arrangements for you such as hospital transport or a home consultation. Your GP may be able to help with this.
I wish you well.
You need to factor in insulin resistance. A lot of that glucose will be stored as fat in your adipose tissue. The idea, however, is to reduce your carb intake so as to push your body into using up your fat reserves through ketosis. This converts the fat into ketones which are used as an energy source. You should lose weight and improve your insulin sensitivity.
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I haven't been diagnosed but need some reassuring from people who actually have the problem
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High reading which GP ignores
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