Going It Alone

lindisfel said:

Hi all,
I get the distinct impression that some of you guys believe we should guide our own journey with metabolic disease.
I feel this can be unwise and your medical professionals should be fully aware of the measures you are taking.

If one has more than one metabolic condition it is even more imperative we seek medical advice/help from outside this forum.
Virta health, much quoted by us all, is in the health business and people in States get insurance companies to pay for them going through the process of going low carb high fat with them, they are continually monitored.
I have have read of instances where potassium has dropped so seriously on keto, patients have died.
regards
Derek

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I agree but and there is always a but, some times it seems that the professionals either don't have the time the specialist knowledge or quite frankly the will to be of much help at times many people here on this site are here because the professionals where not particularly helpful and their advise quite often just wrong this leads to people seeking help else where and this forum is a far better alternative than many other places that they could end up at.

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.

Ideally medical professionals should be involved of course. I have always informed mine of what I am doing but tbh they don't really listen and I doubt if they would notice if I was doing anything dangerous.

When I am reducing my meds I research them and decide which one I like being on least and then make an appointment to discuss it. They have always agreed with me that it's OK to reduce meds when I have asked but I don't really think they are interested in what I do. So yes, in that respect I am on my own. I would love my GP to be more involved but can't force him to be.

I did have one GP who was wonderful and fully interested in my diet and health. The rest just want me out the door asap, and so I leave.

ringi said:

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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Mine never have been, but I wasn't low carbing back then.

Edit: This thread is a good idea @lindisfel

There's a difference between going it alone and being knowledgeable.
Hidden in today's news about the future NHS app, is the sound bite "All evidence suggests expert patients end up recovering more quickly, having more successful treatment and better outcomes”

helensaramay said:

There's a difference between going it alone and being knowledgeable.
Hidden in the news about the future NHS app, is the sound bite "All evidence suggests expert patients end up recovering more quickly, having more successful treatment and better outcomes”

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Good old Dr Google is indeed our best friend.. providing he brings you here...

lindisfel said:

Hi all,
I get the distinct impression that some of you guys believe we should guide our own journey with metabolic disease.
I feel this can be unwise and your medical professionals should be fully aware of the measures you are taking.

If one has more than one metabolic condition it is even more imperative we seek medical advice/help from outside this forum.
Virta health, much quoted by us all, is in the health business and people in States get insurance companies to pay for them going through the process of going low carb high fat with them, they are continually monitored.
I have have read of instances where potassium has dropped so seriously on keto, patients have died.
regards
Derek

Click to expand...

I disagree slightly. I'm not sure we're "going it alone" with all aspects of our health just in the areas where our HCP's have shown a woeful lack of knowledge and after significant research ourselves.
If something new happened to me I would highly likely go and see my GP about it to hear their opinion. However once I had heard that I would then start to research it and would decide myself on whether to follow their advice/medication plan or ignore it.
Would I bother to tell them.. probably not unless I managed an alternative treatment which had a positive outcome (a bit like keto has for my Type 2). Even when I do try to tell them they usually show little (or usually no) interest which I why I choose to have as little to do with them as possible.

Speaking as a type 1, it has always been a collaboration between me and whoever I'm seeing at the time where we eventually settle for what I want to do that doesn't clash too much with what they feel is the right thing to do. I've never had anyone try to force any particular diet or medication or anything on me without giving me the reasons for why as I always question advice given to me and want the reasoning behind it.
Based on what I read on here, it seems to me that quite a lot of people don't have conversations with their GP or nurse or whoever and just do basically a Q&A format meetings, which isn't good. Ideally it should be a friendly conversation rather than a job interview.

I think getting a medical opinion is a good idea - its more info and like all other info it can be accepted or rejected depending on what other info you have gathered.
I have some problems with people just saying mainstream medics are ignorant - many are but not all for sure

I was going it alone before I was diagnosed with T2. In essence this was because when multiple conditions are involved there is a helluva lotta blank stares when questions are asked. I trust my own judgement but I am afraid that for various reasons I no longer have faith in the medical profession when it comes to being given the facts, risks, benefits and even possible side effects/contra indications. I find myself making sure that I remind the HCPs of my conditions whenever a new treatment is offered because mistakes have been made in the past.

I sort of go it alone as my HCP's so far, except in the last 6 months, have refused to engage in any meaningful conversations about diet, or me not having statins or bp meds. I have tried for 6 year to have discussions and, except recently, have just ended up seething at being patronised, and not listened to, even with the evidence or my lowered HbA1c in front of them.

My previous DN's experience ends with them saying i will regret not taking statins etc, and that I cant possibly have lowered my HbA1c without having lost a lot of weight, it doesnt work that way. I have asked how they think I am faking my results, but get no answers except that maybe I was initially misdiagnosed. I wont go into the self testing reactions I get.

I haven seen a GP at all yet, not even on diagnosis. However, for other health issues, my HCP's are good.

However, I am not going blindly alone, in that I read a lot, look at videos and links highlighted on here, listen to the people posting and their experiences, and them try to either make informed changes or formulate questions to clarify stuff I learn.

lucylocket61 said:

….and that I cant possibly have lowered my HbA1c without having lost a lot of weight, it doesnt work that way.

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Yes my GP said that too! I just stared at him open mouthed lol, there's not a lot you can say to that when the evidence was there staring him in the face and he still said it!

Yes, blank stares, open mouths and hmmmmm's. Never a good sign and doesn't promote confidence.

Good thread.
When I was diagnosed in November, I was told to go away to have a good Christmas and come back in the New year.

I found this site studied LCHF, never heard of it before. Immediately cut out the bad stuff.

I bought a meter and armed myself with readings, charts etc. Went to the diet appointment locked and loaded.

She opened her mouth to speak and I forestalled her. She got both barrels. I told her about this site, showed her my charts, mySugr app, food diary I must have talked for 10 minutes.

When I finally shut up there was a long pause then she gave me a meter and a prescription for 100 strips a month.

I have seen the doctor once not for diabetes. She looked at my record and told me a friend of hers had reversed his using diet. I whipped out mySugr and showed her my HbA1c. I got a high five from her and fairly floated home.

I feel exceptionally luck to have this support. Unfortunately you can see from the posts that many get the most appalling advice.

No medical advice is given here. Lots of advice to visit GPs. A place where people with similar conditions can share their experiences.

People are discouraged from reducing their meds without talking to their HCP.

I dread to think of where I might be now if I hadn't found this site or had another DN.

Some people may feel they cannot approach their local facilities.

Dr Google is fine for researching say diabetes. Trying to self diagnose by searching for your symptoms is stupid.

xfieldok said:

Good thread.
When I was diagnosed in November, I was told to go away to have a good Christmas and come back in the New year.

I found this site studied LCHF, never heard of it before. Immediately cut out the bad stuff.

I bought a meter and armed myself with readings, charts etc. Went to the diet appointment locked and loaded.

She opened her mouth to speak and I forestalled her. She got both barrels. I told her about this site, showed her my charts, mySugr app, food diary I must have talked for 10 minutes.

When I finally shut up there was a long pause then she gave me a meter and a prescription for 100 strips a month.

I have seen the doctor once not for diabetes. She looked at my record and told me a friend of hers had reversed his using diet. I whipped out mySugr and showed her my HbA1c. I got a high five from her and fairly floated home.

I feel exceptionally luck to have this support. Unfortunately you can see from the posts that many get the most appalling advice.

No medical advice is given here. Lots of advice to visit GPs. A place where people with similar conditions can share their experiences.

People are discouraged from reducing their meds without talking to their HCP.

I dread to think of where I might be now if I hadn't found this site or had another DN.

Some people may feel they cannot approach their local facilities.

Dr Google is fine for researching say diabetes. Trying to self diagnose by searching for your symptoms is stupid.

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Thats a great result and response. Its good to know there is such support out there for you in the UK.

@helensaramay Ha! I love the thought of being an expert patient.

@lindisfel this really is a double edged sword.
I am the Queen of Google.
I don't have a question that pops into my head where I don't reach for the nearest wifi connection and Google the **** out of it.
This has taught me that Google is very useful, but it isn't the answer to everything.
Nor is this forum.
or any single source of info, whatever it is.
And the questions you don't know to ask are the ones that will trip you up.
Every time.
That is when you most definitely need an expert in the field.

However, I have learned a great deal in my internet meanderings (including this forum), and now when I see HCPs I sometimes ask them questions to which they really SHOULD know the answers.
- which kind of makes me question their level of knowledge.

Another point that I would like to make is that by becoming a (self appointed) expert patient, I am saving the NHS a heck of a lot of money. They don't categorise me as a T2, since my bgs are under control. That is an annual bill for sight checks, foot checks, blood tests and so on that they don't provide. I pay for my own prescriptions. I have (hopefully) slowed the progression of my T2/RH glucose dysfunction which will delay the need for medication, and delay when/if I escalate to insulin. I am generally FAR healthier than I would be if I ate a normally and didn't monitor my own health, and act accordingly.

Other health issues that I have researched and acted upon, based on my own efforts include
- food intolerances (whey, gluten, soya)
- hyper mobile joints (lifestyle changes, arch supports, exercise, posture, furniture choices, etc)
- psoriasis (see food intolerances)
The improvements to my quality of life are frankly incalculable.

To address the question of whether we can harm ourselves by striking out alone - YES.
Most definitely, we can.
But that kind of gung ho, acting with insufficient information, ignoring safety advice and abusing our own bodies with extreme behaviours, isn't restricted to people with metabolic or autoimmune disorders. It is the same thing that gets people dying of exposure in the Cairngorms, or collapsing with malnutrition because they thought that vegetarianism is just about eating veg.

A little common sense goes a very long way, and whatever we are doing, we need to assess the situation regularly or we risk doing ourselves harm. We also need to know when it is time to ask for professional help.

But that applies to any hobby, health quest or lifestyle choice we make, doesn't it?

edtied to add the 4th paragraph.

zand said:

Mine never have been, but I wasn't low carbing back then.

Edit: This thread is a good idea @lindisfel

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So are you saying you never have your kidney functions checked? Potassium and sodium levels are included as part of this. Mine are done every time I have an HbA1c, along with liver functions, cholesterol and full blood counts. (Twice yearly at the moment)

Bluetit1802 said:

So are you saying you never have your kidney functions checked? Potassium and sodium levels are included as part of this. Mine are done every time I have an HbA1c, along with liver functions, cholesterol and full blood counts. (Twice yearly at the moment)

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No, sorry, I wasn't clear. I am saying that when I used to faint before I was diabetic they were never checked. I was once taken to hospital in an ambulance cos I had fainted nothing was done then and I also fainted whilst with a GP and nothing was done then either. I told my GP at the time that I fainted around once a year. I never had any blood tests done at all until I was pregnant when I was 28.

Good thread. A Consultant said to me 6 months after I was diagnosed LADA T1 that we get given insulin and turfed out to do the best we can - with a drug that is incredibly safe (its been around for ever) and incredibly dangerous (hypos can kill) all at the same time. They need us to become educated in our illness and that applies to T1 and T2.

Those of us who read up, learn and try new things are taking the pressure off the NHS and improving our long term health goals. If someone is trying keto and it isn't working or they are feeling ill, then this site may advise on diet but often points in the direction of a GP.