Tired of all the misinformation

Good news about the lymphoma being in remission. (But you need to get that lump checked out). Radiotherapy takes a long time to recover from in some people.

I am not on insulin so can't help with that side of things, but if certain high carb foods like bread and porridge make you feel ill, then don't eat them. The people at the diabetic centre are just spouting the usual rubbish that we all need carbs and must eat low fat. As all carbs turn to sugar once in the system, it makes sense not to eat too many of them. Make sure you are eating plenty of protein and good fats along with vegetables, nuts and seeds. Why would you want to eat foods that raise your blood sugar levels? It does not make sense.

miffli said:

I have been on the suggested low carb for quite a while, the only carbs I have eaten is what is in two dessert spoons of powdered potato and that is not every day, my sugars have ranged between 9 and 28mmol due to having Radiotherapy for Lymphoma, that stopped some 4-5 weeks ago but i still feel rubbish.

I went to a diabetic meeting the other day and was told to have carbs again,i.e. bread, i refuse to eat porridge due to it making my sugars rise to 28+ mmol, i have had egg on toast for breakfast today and I am up to 17.9mmol and now trembling and sweating.

I do not really wish for carbs as it raises my levels horrendously and makes me feel bad, I am told they are good carbs- I do not believe it at all, I can only go by feeling utterly rubbish after having them in any larger amount than that of the powdered mash portion and two dessert spoons does not have so much in them.

Someone here vouched for carb free diet and she supposedly had a massive rush after going free after a few weeks- i kind of think that is BS because I just feel ****. excuse that but i do. I have no idea what feeling good is all about for the last 3 or so years, i am currently taking humulin kwikpen 60 units per day and i am type II. The insulin makes very little difference. If i take Metformin it does seem to work better than the insulin but makes me really ill, i also have issues if i take Gliclizide.

The diabetic centre has said they wish to get me back on to bread and porridge, they still continue to advise me as to take what I hear here with a pinch of salt and their advice comes from people that have spent years studying diabetes and as such are professionals, here I am only going to get advice from personal experiences which are not acknowledged through the Nhs.

I am really tired of all the misinformation, told to eat this and that and then feeling craps afterwards, ok, my health has not been wonderful, I am told I must have a pretty horrible existence if I am not eating carbs for energy and only eating fatty stuff... I am not sure whether it was the radiotherapy or feeling naff, i have been eating fatty stuff all over Christmas, double cream, cashews, pork scratchings, eggs and even a little naughty portion of ice cream and i have lost half a stone..like how! Anyway, I got the all clear supposedly from the Lymphoma, they say I am in remission though I have had a suspect little lump come up on my arm over the last few days.

Anyway, I am not sure what to do, who to listen to, i know i feel pretty dreadful still and i am in a very low mood, I would love to hear what anyone has to say about all of this, just so i know I am not going mad. xx

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No you are not going mad.

It seems that as far as your diabetes is concerned you have a plan of action in place and could provide evidence for yourself at least that the current NHS advice for T2D is not good for you.

But you have had another battle going on that has involved a different set of specialists that also evoke the NHS guidelines. The dichotomy that I sense is causing you to hesitate is that a diet that may be good for one condition (diabetes) may not be helpful at all for the other condition, and may even exacerbate it.

As has been so rightly pointed out by others, none of us here is an expert. Although we have some specialised knowhow on diabetes, we are not oncology cognisants. So we cannot advise at all in this respect.

I do however bring some anecdotal evidence that may help. My son battled cancer last year and the specialist team at Cambridge did advise that he adopt a lower carb lifestyle and cut out sugars etc. He is now in remission too and has lost weight, and was not put off at all by my LC efforts this Xmas. There have been recent papers published last year that show that many cancers need sugar (glucose) to metasize, or even survive, so it seems that cutting down the blood glucose level would be a sensible thing to do. No idea if it would be relative to your particular condition, but it shows that the LC diet is being considered for other conditions.

My OH has Parkinsons, and again this last year there were studies going on to look at whether the LC diets can help this condition too. It is already used in the NHS for epilepsy control, and a new study last month showed that it may also help Alzheimers too.

What we use here is at last being taken seriously not just for diabetes, but health in general, Yet the NHS dieticians still insist on mandating the Eatwell platter for everybody, They may need to eat their hats instead soon.

In my mind, as soon as someone says "essential carbs" then they are showing their ignorance and the science of phytonutrients is a herbalists wet dream - it is not a science at all.

@miffli ultimately it is your decision what you eat - you know what food makes you feel ill and/or pushes your bs up. Unfortunately sometimes the ‘professionals’ do not know best and I am sure you have ascertained through your research that for many diabetics a lower carb, full fat diet works. The ironic thing is that if it was being promoted by a celebrity at this time of year it would be hailed in the media as the best thing since sliced bread!!

miffli said:

i have been eating fatty stuff all over Christmas, double cream, cashews, pork scratchings, eggs and even a little naughty portion of ice cream and i have lost half a stone..like how!

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Hi @miffli

Again congratulations on the remission...(but do get the lump checked.)

i can only add, that i probably wouldn't eat the powere potato...
as potatoes spike me..and some breads do , and i guess you are more sensitive to bread then i am, perhaps..so i'd avoid bread.

As for all the lovely xmas food....whats NOT to like.
you seem to have enjoyed it, you've lost weight (i guess your happy about that )

So in the end , i think like @Bluetit1802 ..the docs repeat what they learnt all those years ago, and don't stay as current as they should for various reasons.

I think it was sherlock holmes who stated "Once you eliminate the impossible, whatever remains, no matter how improbable, must be the truth.."

In your case, the food at christmas seemed to be ok..

for me i would have eaten the ...
double cream, cashews, pork scratchings, eggs quite happily, but i'd have swapped the cashews for almonds, & missed the ice cream out..

But that is me..and what affects YOU may be different.

I think the mantra is test before food, then test 2 hours after food.
THAT is how YOU verify the FOODS you can enjoy, and the foods you CAN'T (at least not without modifying the amount served)

You do as mentioned have other things to consider and balance out.

But presumably the diabetes still needs caring for.?

I see it as a detective game..i'm looking for PROOF, that 'X' is safe or good for ME..
(does it spike me and/or make me feel poorly.)

Surely that IS the goal, to help us MANAGE our own diabetes / Health as best we can

i LIKE i can now have a whole weeks worth of foods in the fridge, that AGREES with me and my diabetes.

YOUR job, if you chose to undertake it, is to find YOUR chosen foods.

Dietdoctor has been a god send to me.
It was the first website i visited that explained in the terms i understood at the time just
WHAT i needed to look out for in regards good foods and carbs.

Best wishes for the future.

Hi @miffli I can't really give you any medical advice, but I note that you are on insulin so I'm going to tag in @ickihun as she is also on insulin I believe. If you are on insulin then you may need some carbs - so please do discuss this with your GP or endo. Most of us T2's are diet controlled or on Metformin and not insulin.

If anyone is telling you that bread, oats and mash are appropriate for a type 2 diabetic, they are both negligent and ill informed. They could easily look at the glycemic index of these foods to know what impact they have for diabetics (and non diabetics).

My "pinch of salt" has worked better than any of their death promoting nonsense - it doesn't even make common sense that more sugar will help your sugar issue; personally it doesn't matter if the person issuing this advice has 50 years clinical experience , the advice provided is 100% wrong. You will note that I have not put any might be or similar wording.

If you keep eating the food that lost you weight, your numbers will go down as will the amount of insulin required. Just keep monitoring your numbers several times a day as "our" method is so potent, your insulin WILL need adjusting down.

Hi @miffli ,

The only thing you can be sure of in this "game" is your meter results...

What type of Humulin are you prescribed & at what strength per unit? (U100, u300?)

From my experience balancing insulin to any carbs consumed whatever type (or not for that matter.)
It is advisable to log what is eaten along with BG results prior & 2 hours after to spot trends regarding how your diet reacts to the medication dosage. (& visa versa.)

This will at least help your HCPs to help you...

Hi. The advice being given by those medics for the diabetics is rubbish and potentially harmful. It is a disgrace that the 'wonderful' NHS promulgates this ignorant advice about carbs. At least my nurse who also supports the surgery diabetes patients knows better and quite correctly advised me to lower the carbs when my BS was going a bit too high. T1s don't need to have high carbs either and in general are best keeping the carbs down to avoid weight gain and wide insulin over and under shoots so the lower carb advice is right for most of us. Obviously you have other health conditions so you need to take the advice from the medics in that specialism but not the general diabetes advice as it appears to be poor. If you have any excess weight and then possible insulin resistance, insulin may not help much neither Gliclazide. Much depends on what your pancreas is producing and a c-peptide test might help show that; do discuss with your GP. With regard to Metformin are you on the standard version or the Slow Release Metformin SR? The latter is much kinder.

miffli said:

I have been on the suggested low carb for quite a while, the only carbs I have eaten is what is in two dessert spoons of powdered potato and that is not every day, my sugars have ranged between 9 and 28mmol due to having Radiotherapy for Lymphoma, that stopped some 4-5 weeks ago but i still feel rubbish.

I went to a diabetic meeting the other day and was told to have carbs again,i.e. bread, i refuse to eat porridge due to it making my sugars rise to 28+ mmol, i have had egg on toast for breakfast today and I am up to 17.9mmol and now trembling and sweating.

I do not really wish for carbs as it raises my levels horrendously and makes me feel bad, I am told they are good carbs- I do not believe it at all, I can only go by feeling utterly rubbish after having them in any larger amount than that of the powdered mash portion and two dessert spoons does not have so much in them.

Someone here vouched for carb free diet and she supposedly had a massive rush after going free after a few weeks- i kind of think that is BS because I just feel ****. excuse that but i do. I have no idea what feeling good is all about for the last 3 or so years, i am currently taking humulin kwikpen 60 units per day and i am type II. The insulin makes very little difference. If i take Metformin it does seem to work better than the insulin but makes me really ill, i also have issues if i take Gliclizide.

The diabetic centre has said they wish to get me back on to bread and porridge, they still continue to advise me as to take what I hear here with a pinch of salt and their advice comes from people that have spent years studying diabetes and as such are professionals, here I am only going to get advice from personal experiences which are not acknowledged through the Nhs.

I am really tired of all the misinformation, told to eat this and that and then feeling craps afterwards, ok, my health has not been wonderful, I am told I must have a pretty horrible existence if I am not eating carbs for energy and only eating fatty stuff... I am not sure whether it was the radiotherapy or feeling naff, i have been eating fatty stuff all over Christmas, double cream, cashews, pork scratchings, eggs and even a little naughty portion of ice cream and i have lost half a stone..like how! Anyway, I got the all clear supposedly from the Lymphoma, they say I am in remission though I have had a suspect little lump come up on my arm over the last few days.

Anyway, I am not sure what to do, who to listen to, i know i feel pretty dreadful still and i am in a very low mood, I would love to hear what anyone has to say about all of this, just so i know I am not going mad. xx

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First and foremost insulin has only been cleared clinically on sensible amounts of carbs. So dieticians are mindful of hypo's in carb absence. Hypos kill. So any insulin taker has to prioritise their risk but their insulin prescriber has only that risk to help you avoid.
I'm sure your more than capable of the intense job of monitoring your bgs regularly and eating low carb but maybe eat to avoid a hypo too. It is a big job. Harder for more than others.
I see you are just over having chemo. I have no experience of controlling bgs in such hormone adjusting times.
I have other health problems and IBS with overactive prolactin levels and underactive thyroid hormone production. Now most are metabolic syndrome related.
Chemo isn't a natural adjustment so I feel only your specialist nurse/team can correctly advise you.
My dietician doesn't advise excessive carbs but feels the essential ones for my insulin to perform correctly like milk in the low calorie milkshakes and the sugar coated meberine tablets for IBS cannot be avoided. They feel multivitamins with iron is essential now even pre-op stage as the diet they advise for weight loss also strips my body of other much needed essentials.
I become ill if my nutrients are too low, like anyone.
If you are fighting cancer you need all of the essentials. Excessive carbs aren't essential but insulin performs better with some carbs in your diet.
Choose your carbs carefully and just keep them to a minimum. Testing your bgs every 2hrs and more if your feeling light headed. Test incase of bgs being too low. Always.
Extreme bg changes can give you hypo like symptoms. Your heart will tell you that your bg is far lower than your bodies used too. This will continue until your bgs are on steady good numbers. Treat phantom hypos with a low carb treat. Real hypos which is less than 4mmol/l should be treated with carbs to avoid unconsciousness.
I feel chemo will affect your bgs so the best you can hope for is a steady reduced high bgs. Day by day.
I'm not the greatest patient person now in constant pain but if you can start today noting 6 bgs from waking up, before breakfast, 2hrs after breakfast and same for lunch and dinner. Before bed reading helped me alot to combat liver dumps through the night.
Your team will help you get back to good levels. Work with them so they know what foods spike you the most. We are all different.
Test test and test. Eat to your meter and you will achieve far lower bgs.

miffli said:

I have been on the suggested low carb for quite a while, the only carbs I have eaten is what is in two dessert spoons of powdered potato and that is not every day, my sugars have ranged between 9 and 28mmol due to having Radiotherapy for Lymphoma, that stopped some 4-5 weeks ago but i still feel rubbish.

I went to a diabetic meeting the other day and was told to have carbs again,i.e. bread, i refuse to eat porridge due to it making my sugars rise to 28+ mmol, i have had egg on toast for breakfast today and I am up to 17.9mmol and now trembling and sweating.

I do not really wish for carbs as it raises my levels horrendously and makes me feel bad, I am told they are good carbs- I do not believe it at all, I can only go by feeling utterly rubbish after having them in any larger amount than that of the powdered mash portion and two dessert spoons does not have so much in them.

Someone here vouched for carb free diet and she supposedly had a massive rush after going free after a few weeks- i kind of think that is BS because I just feel ****. excuse that but i do. I have no idea what feeling good is all about for the last 3 or so years, i am currently taking humulin kwikpen 60 units per day and i am type II. The insulin makes very little difference. If i take Metformin it does seem to work better than the insulin but makes me really ill, i also have issues if i take Gliclizide.

The diabetic centre has said they wish to get me back on to bread and porridge, they still continue to advise me as to take what I hear here with a pinch of salt and their advice comes from people that have spent years studying diabetes and as such are professionals, here I am only going to get advice from personal experiences which are not acknowledged through the Nhs.

I am really tired of all the misinformation, told to eat this and that and then feeling craps afterwards, ok, my health has not been wonderful, I am told I must have a pretty horrible existence if I am not eating carbs for energy and only eating fatty stuff... I am not sure whether it was the radiotherapy or feeling naff, i have been eating fatty stuff all over Christmas, double cream, cashews, pork scratchings, eggs and even a little naughty portion of ice cream and i have lost half a stone..like how! Anyway, I got the all clear supposedly from the Lymphoma, they say I am in remission though I have had a suspect little lump come up on my arm over the last few days.

Anyway, I am not sure what to do, who to listen to, i know i feel pretty dreadful still and i am in a very low mood, I would love to hear what anyone has to say about all of this, just so i know I am not going mad. xx

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You're not going mad. Just driven 'round the bend with all the contradicting info headed your way! Just get as much info as possible, and then find out what of it all works for YOU. Your meter already told you certain foods make you spike, so ditch 'em. If you count carbs and use insulin accordingly (rather than a fixed dose?), you should be able to avoid hypo's? I don't use insulin myself, but just test, test and test some more, and see where that leads you.

I went keto, and got keto-flu for a while. Everything ached, my head hurt, I was exhausted... And then it passed, after two or three weeks, and I felt pretty good. More energy than I'd had in years. And my depression, which I've had all my life, wasn't as bad as it used to be. So going really low carb did help with that, besides getting my weight to budge again (I'd stalled on LCHF, dropped another 10 kilo's on keto) and putting my HbA1c into the low 30's. That's entirely anecdotal, but the best I have to offer. You might want to read The Diabetes Code by Dr. Jason Fung, as he tends to make sense and explains things so you know what you're doing and why, and what the results may be and what to reasonably expect. Rather than just saying "do this, don't do that" without giving actual reasons or the mechanics of the whole thing.

Figure out what works for you. You'll feel better for it. And I'll repeat what others said: get that lump checked out. I hope all is well, but better safe than sorry. (And cancer treatment also impacts physical and mental well being... Give yourself some time to recuperate!)
Jo

miffli said:

I have been on the suggested low carb for quite a while, the only carbs I have eaten is what is in two dessert spoons of powdered potato and that is not every day, my sugars have ranged between 9 and 28mmol due to having Radiotherapy for Lymphoma, that stopped some 4-5 weeks ago but i still feel rubbish.

I went to a diabetic meeting the other day and was told to have carbs again,i.e. bread, i refuse to eat porridge due to it making my sugars rise to 28+ mmol, i have had egg on toast for breakfast today and I am up to 17.9mmol and now trembling and sweating.

1. I do not really wish for carbs as it raises my levels horrendously and makes me feel bad, I am told they are good carbs- I do not believe it at all, I can only go by feeling utterly rubbish after having them in any larger amount than that of the powdered mash portion and two dessert spoons does not have so much in them.

Someone here vouched for carb free diet and she supposedly had a massive rush after going free after a few weeks- i kind of think that is BS because I just feel ****. excuse that but i do. I have no idea what feeling good is all about for the last 3 or so years, i am currently taking humulin kwikpen 60 units per day and i am type II. The insulin makes very little difference. If i take Metformin it does seem to work better than the insulin but makes me really ill, i also have issues if i take Gliclizide.

The diabetic centre has said they wish to get me back on to bread and porridge, they still continue to advise me as to take what I hear here with a pinch of salt and their advice comes from people that have spent years studying diabetes and as such are professionals, here I am only going to get advice from personal experiences which are not acknowledged through the Nhs.

I am really tired of all the misinformation, told to eat this and that and then feeling craps afterwards, ok, my health has not been wonderful, I am told I must have a pretty horrible existence if I am not eating carbs for energy and only eating fatty stuff... I am not sure whether it was the radiotherapy or feeling naff, i have been eating fatty stuff all over Christmas, double cream, cashews, pork scratchings, eggs and even a little naughty portion of ice cream and i have lost half a stone..like how! Anyway, I got the all clear supposedly from the Lymphoma, they say I am in remission though I have had a suspect little lump come up on my arm over the last few days.

Anyway, I am not sure what to do, who to listen to, i know i feel pretty dreadful still and i am in a very low mood, I would love to hear what anyone has to say about all of this, just so i know I am not going mad. xx

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I was given the same advice by our regional hospital when first diagnosed. I was told to base my meals on starchy carbs and taught how work out how many units of insulin to inject.

When I went low carb I had to dramatically lower the number of units I was injecting to avoid hypos. At the beginning of January 2019 I will be 9 months with no insulin. As you are injecting insulin you will need to test more often because you will more than likely have to start lowering the units of insulin you are injecting.

I am very lucky as my diabetes nurse at the GPs surgery believes 100% that the low carb diet is the best diet for people with diabetes.