Going It Alone

I have been lucky with my consultants who treat my diabetes, Professor Shaw, he lets me Low carb/High carb, and anything in-between, and he has actually said " you are old school with your diabetes treatment" as in my hypo management is Lucozade followed by biscuits!! Changed a lot of things and is willing to try things out. On the other hand my GP is not very good at all, even putting the after effects of a minor stroke down to sleep apnoea!!(which I don't have) I don't think you should go it alone on some aspects of your treatment management, but seek as much advice as possible, either by research, internet searches or this forum (which is a wonderful font of knowledge). I would never call myself an expert patient even after 23yrs with this marvellous condition, but I di question some of the decisions made by my HCP team, which in turn leads to good conversations between us.
I think in the UK its a luck of the draw for how good/Bad our HCP team is.

Sani Thomas said:

Hi, many people are blindly following a cult even when reading and researching. How? They filter the information accepting only what supports their belief.
So far in my diabetic experience, I'm T2 on insulin, all HCP have been really good and while I self manage my insulin, I keep in touch with them and seek advice from them. What I personally like is that they are supporting me in choosing a reasonable rational attitude to both my condition and treatment.
Keto diet to me (I'm a nurse) sounds on the one hand dangerous and on the other unpleasant. None of you guys mentions quality of life.
Potassium and sodium both are necessary for the functioning of the body. They are part of the electrolyte balance of the body and getting them out of walk is very dangerous indeed. I witnessed once a convulsion caused by low potassium. Not a nice think, I assure you.
So, I'm all for keeping in touch with our medical professionals and not disregarding what they say.

Sent from my SGP611 using Diabetes Forum mobile app

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I am going by my own experience, after 20 years of doing what my GP told me, and 6 years since being T2 and controlling it through diet alone.

I'm all for keeping in touch with our medical professionals and not disregarding what they say.

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so am I, except when they are wrong, as they are, for so many of us on here, about the affect of diet, and particularly carbs, on our blood sugar levels and cholesterol levels.

many of the old, harmful, often dangerous medical practices would still be here if not for independent trials, research and testing by people who challenged the view and practices of the medical profession due to their own observations and experiences.

quality of life

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my qualtiy of life has improved a lot since low carbing. I am less tired, more alert, and feel so much better in myself. I have ME/CFS and that is slowly abating too. There are so many delicious low carb meals, and I no longer dread eating and knowing that, 2 hours later, I will be asleep, due to eating all the carbs my GP told me I needed to keep my strength up.

lucylocket61 said:

I am going by my own experience, after 20 years of doing what my GP told me, and 6 years since being T2 and controlling it through diet alone.

so am I, except when they are wrong, as they are, for so many of us on here, about the affect of diet, and particularly carbs, on our blood sugar levels and cholesterol levels.

many of the old, harmful, often dangerous medical practices would still be here if not for independent trials, research and testing by people who challenged the view and practices of the medical profession due to their own observations and experiences.



my qualtiy of life has improved a lot since low carbing. I am less tired, more alert, and feel so much better in myself. I have ME/CFS and that is slowly abating too. There are so many delicious low carb meals, and I no longer dread eating and knowing that, 2 hours later, I will be asleep, due to eating all the carbs my GP told me I needed to keep my strength up.

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Thank you for such considerate reply. It seems that it all comes down to each individual person, conditions and circumstances.
It is sad that people have so varied experiences with the medical profession. I suppose, there are some bad apples as it is in any group or community. I wonder if younger GPs are more flexible and not so stuck in the old ideas.
Yes, by all means, challenge them with questions. That also helps them. After all we have to agree that there is such huge body of research and knowledge that it is difficult to be on top of it. We have the time and focus on one condition. Doctors and nurses don't. They have way more.
Discussion is important to try and find the best option, agree personal goals and measure success. Even here are many variables. What I find to be important may not be the same for you, etc.
I only hope that people don't become self satisfied and expert that they disregard medics. You probably know that even doctors go to other doctors as they are unable to treat themselves.

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ringi said:

I know of very few NHS GP who have the skills to give people surport with low carb, so we have to choose between taking a little risk by going it a allone or except the normal outcome of lots of complications.

As I understand it, the most common reason for low potassium on a low carb diet is due to someone not getting enough sodium, hence the advice to add a little salt. At least in the UK we all have access to healthcare, and potassium levels will be check by a GP if people are fealing faint.

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Not all GPS will agree to a blood test check for potassium inbetween their routine blood test checks. Some are annually. Which can be too late.

In the past few years I've seen 3 cardiologist and their teams. An endocrologist/diabesity specialist and his team and my 2 GPs and their team. And 4 ambulance crews and 6 a&e teams.
I have honestly listened and took all their advice. Including great advice about tramadol use and pacing it to prevent addiction. Exercise to slow down heart disease and going for bariatric surgery.
NHS dieticians within bariatric team are good but low carb wasn't mentioned but not discouraged when I was losing weight but once I was re-adding I was encouraged to get weight off. (it's not up to me, my body does the adding and losing. I have no control over low carb working on weight loss or not) Also with not low carbing eating as to whether I lose or not.
I cannot solve the riddle of weight loss for me and when not; so I cannot expect any health personnel to, either. Not even my endo. He believes its all diet driven.... but it seems to me only when my body isn't stressed out, ill or being none co-operative. Which isn't very often.
Recently I solved my problem of re-occuring low iron from taking lansoprozol. Vit C.
No health personnel has been interested so I've experimented and..... vit C is helping me absorb iron in my diet. So far so good.

To be honest I find managing my health a nightmare and when ill or in pain I haven't the energy to investigate. Often even speak to a doctor.
Myself I've found 111 help inadequate for none urgent support. They could be the answer if it was managed properly.

lindisfel said:

Hi Ickihun,
If you put your reasons for a need for a test to a sympathetic GP they are often willing to help, particularly if you show how concerned you are.

When you have bariatric surgery they must have checking protocols.
best wishes
Derek

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I have to get pass the receptionists first, also I find a waste of gp time to make an appointment for a blood test request. GPs are needed for more urgent health reasons.

Thank you Derek. I'm sure they will be thorough. Their team picked up low vit D in my last bariatric nurse appointment. Over a year ago.
I'm concerned about getting anaemia again before an op but one gp brushed it off and other GP must be sick of seeing me lately as I've had family there ill with Scarlet Fever and Mr ickihun with something else. A family affair. Ha ha

I will make an appointment with thorough GP next week when son has his blood test to check he has improved full blood count. @lindisfel

Sani Thomas said:

That's one thing I did not consider as I'm within healthy weight range.
I eat meat, but living only on meat and fat does not coincide with my idea of enjoying life.

Sent from my SGP611 using Diabetes Forum mobile app

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Suggest you look at the diet doctor site recipes I eat a keto diet for the most part and my diet is nothing like your preconceptions surmise.

We diabetics must be careful.

Maybe the nhs will do what any pregnant woman has to do now. Have a basic amount alloted for care and a tiny amount to choose from as to which part of care you want. (eg chiropody, cardiology or dieticians).
Once you've used your alloted amount..... you're on your own!
I bet!

O

johnpol said:

I have been lucky with my consultants who treat my diabetes, Professor Shaw, he lets me Low carb/High carb, and anything in-between, and he has actually said " you are old school with your diabetes treatment" as in my hypo management is Lucozade followed by biscuits!! Changed a lot of things and is willing to try things out. On the other hand my GP is not very good at all, even putting the after effects of a minor stroke down to sleep apnoea!!(which I don't have) I don't think you should go it alone on some aspects of your treatment management, but seek as much advice as possible, either by research, internet searches or this forum (which is a wonderful font of knowledge). I would never call myself an expert patient even after 23yrs with this marvellous condition, but I di question some of the decisions made by my HCP team, which in turn leads to good conversations between us.
I think in the UK its a luck of the draw for how good/Bad our HCP team is.

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Or in my GP's case: Depends if he has to pay overtime for a receptionist who hasn't turned in and cold drinks/lollies for those who have. Then tells my son to lose weight and keep away from ice cream. Honestly. Depends on their mood. I suppose like us all.

Hi all. Joined this thread late due to a hint in a pm. Read the opening page of posts so thought I'd chip in. Had my annual review yesterday with DN only. Absolutely useless and I needed to point to previous test results and eye screening to clarify points - if my staff had prepared lessons in such a poor manner I would have started competency proceedings. Key point I want to raise is no full blood count is routinely done on me and no one has any idea of big picture and potential interactions between issues and treatments. These forums and DR Google appear our best hope. Nursey's parting shot was if all our patients were as clued up and controlled as you we would be out of a job. Compared to many on here my control is feeble so I conclude their standards and expectations are woeful. Ideally we would not go it alone but that is like the infamous everybody thinking it is someone else's job.

Let's be clear here. I should be following my HCPs advice? You mean the advice to eat processed foods, the advice not to test with a glucometer, the advice to switch to whole grains and to limit bananas and grapes only? The advice (or threat) to take insulin, the advice to take a statin and to lose 7lbs?
I ignored the bulk of that advice and here are the results, I lowered my A1c by learning about food and its affects by using said glucometer. After initially being bullied into taking a statin with its (concomitant for me) painful side effects I discontinued and I'm quite happy with my panel results these days. I avoid processed foods wherever I can and the affect on my overall health is a joy.
I now eat a LCHF/Keto diet and it is more varied a diet with a helluva lot more new foods than ever there was before dx. I have seen a fall in the level of chronic pain that will, I hope, lead to discontinuance of pain meds if not lower dosages. My quality of life bears no comparison to that before making the changes that I decided to make.
If that makes me self righteous then colour me pious. If my life is unenjoyable then then it must have been sheer hell before I made the changes. If health authorities want us all to take more responsibility for our own health then when we ask for advice it should be honest to goodness advice on an holistic basis not some tick box excercise that wins funding for the Practice.

Edited to add. I have suffered two Menieres attacks since November 2017. The same period for 2016 saw six attacks. While it has only been a year for me with regard to changes in dietary habits I find this fact alone is well worth the 'risk'.

So I'm a bit puzzled about hypokalemic risks and especially aldosteronism. Which is something the Dutch should probably worry about given their love of drop. But aldosteronism seems fairly rare and would present with symptoms that should lead to them being checked out.

But I'm also puzzled why hypokalemia should be of particular concern to people on keto diets given those typically contain enough potassium. Or if people think it could be a problem and supplement, then there could be a risk of hyperkalemia. But assuming kidneys are functioning fine, excess potassium should be excreted.

Salt's a curious thing wrt diet, and fad diets. Salt's gone from a highly valued commodity that let the Merchants of Venice get into some ill considered civil engineering to the latest Western menace. The EU even has a 'Salt Reduction Framework', with plans to reduce our salt consumption. And we've even come up with 'salt flavor' for crisps.

And some people go overboard on this and try to cut out salt completely.. Which can be bad given the holy trinity of NaCl, CaCl and KCl is critical for our bodies to function, and food phobias may lead to deficiencies and death. Or cramps. Especially this time of year when we sweat more.

But such is the way of dietary advice and political interference.. Especially when it can be bad advice and result in the diabetes/obesity 'epidemic' that 'experts' are now trying to address. Solution's simple. Eat a nutritionally complete and balanced diet that excludes or reduces the things you're intolerant to, and you'll be healthier.

Just to add to the earlier post the 2 things that really highlighted the need to "go it alone" were as follows:
they had not noted that the retinopathy screning had showed background retinopathy had cleared up over 12 months and had no idea what I was talking about when I asked about my last full blood count showing up Mean corpuscular volume (MCV) 99.6 fL as abnormal. It was left to me to make a link between MCV and B12 deficiency and take supplements. They had also never heard of B12 deficiency and potential misleading hba1c results. Going it alone is an interesting concept given the availability of information on the internet and just how well informed people on these boards are. As @Guzzler so cogently points out the HCPs have been ever so helpfully advising us how to make ourselves more ill
Obviously, if I am wrong please any better informed members put me right asap.

lindisfel said:

Did you have a consultation with the cleaner?

Never heard of a doctor who doesn't know about Vit B12 difficiency.

If you think you know best don't go to your doctor, let a sick person have the appointment.

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@lindisfel sorry if I caused offence. I don't think I know better and I did not make the appointment it was a scheduled annual review. I was just trying to point out the shortcomings in the system of just relying on the professionals to give the full picture. Your mileage may vary of course and I come in peace as they say - howsabout you take your tanks off my lawn?

lindisfel said:

f you think you know best don't go to your doctor, let a sick person have the appointment.

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That's what I try to do. I try to keep to my annual visit for blood tests and that's it.

Go it alone? No one on here should go it alone!
That is what this forum is for!
Simples!

However, as someone who has suffered through the worst possible health advice due to poor advice, from GPs, dsns and even an endocrinologist who all of them didn't have a clue.
The reason, not enough training, not enough knowledge in a branch of biology that they have not had enough examples of why low carb as a lifestyle can work for those with an intolerance to certain foods. Not enough specialists and even the specialists can't agree on how to dietary advise patients, it's too easy to dole out medication and suffer the consequences.
Times are a changing but the tests for why the patients metabolism is out of control are only the hba1c test. Not insulin, not a full panel of bloods, you have to be referred to a specialist to get more tests, and there is no where near enough to go around and the funding necessary is not there too get the right tests to prevent the conditions occurring.
Education should be a huge part of first diagnosis, how to cope with the dietary changes needed. How to use a glucometer properly, how to plan your meals.
How to exercise, how to lose or gain weight if needed.

I could go on, but, if people need treatment, how to get it.

I think that because I was lucky enough to find an endocrinologist who diagnosed me and understood what I needed to do, encouraging me, to help him understand how to go about the dietary changes, he learned from me, as I learned from him, I gained knowledge from this forum and by hook or by crook I found my balance to get my health back.
I did an huge amount of testing and experimentation by myself, guided by the posts and with my endocrinologist, came to a joint decision by design to stay in or just above ketosis, staying in or as near as possible to normal blood levels, a healthy diet individually for me. My tastes, my budget, my intolerance, my lifestyle.
It has worked for me.
It might not work for you.
It is a work in progress, my body has changed since diagnosis.
But my mind won't be changed without further testing.
I know I have to eat very low carb, but it's definitely not a individual go it alone thing, too many people are affected by you.
I learned how to live successfully with my condition.
I still depend on other people's experience and I'm open minded to how people treat their condition.
In the end we are all dependent on our health care providers.

Best wishes