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Badly treated and discharged by Diabetic Team...any advice?

Em16

Well-Known Member
Messages
93
Type of diabetes
LADA
Treatment type
Diet only
Hi, sorry this is a long one...but I am feeling very down. I've been discharged from the diabetes team at my hospital and told I am not diabetic.....or even at risk of being diabetic.....despite my knowing and discussing with them, for over 2 years now, details of the low carb/high fat diet I use to control glucose. I am pretty sure that if I go back to eating carbs I will have spikes and troughs.

You will see from my resume that I was, at one point, told I was LADA.

My GP asked me to collect a glucose monitor, way back in Feb 2020 as I had discovered, following a pre-diabetes diagnosis at an average of 43, that I had spiking high glucose readings after even quite small amounts of carbs (eg. 30 grams of brown rice gave me a 2 hour post prandial of 13 mmol) and also low readings, below 4 sometimes . I believe that the 1AC (being an average) had missed the ups and downs.

On collection of the meter, the nurse decided to test my sugars...they were around 8 mmol and then, as I'd not used the ketone strips at all, she tested those too. This was all done with an eye-rolling - what a waste of time I was - attitude (she had previously agreed with a GP who told me that I could not be diabetic I was too thin). Then she saw the ketones were at 3, did a second test, called the GP in and I was sent to hospital. I was asked in the surgery and also at the hospital what I had eaten. At the time I was lowering carbs, but not on with Keto as I was learning what was what. I told them fully what I had been eating and why. I was diagnosed diabetes.

At a follow-up appointment the Diabetes Consultant told me that he thought I was LADA. This was due to me not fitting the usual Type 2 phenotype. He said they would keep a close eye on me and he expected that in time I would not be able to control my sugars by diet. He ran a C-Peptide test and although this did not show LADA I was told it was sometimes inconclusive. That was in February 2020.

Since then I have controlled glucose using the low carb/high fat diet. In the early days I got frustrated a couple of times and was given glicizade to try and also insulin to try. I used the insulin for a while, but then started to question if it was right for me....I was beginning to believe I must be type 2 (as I could control so well with diet) and didn't want additional insulin if so. I returned to diet control. My sugars have been good since and my cholesterol improved.

I recently asked for an appointment with a dietician as I wanted some advice (I worry that I eat way too much of some things: nuts and greek yoghurt mainly). She got very annoyed with me and told me my diet was wrong for me...because I'm thin. She said I'd never been diabetic only prediabetic. That all of my 1ACs had shown as normal. I explained to her that my tests were in the normal range because I controlled glucose through diet. She said she would speak to my consultant.

The upshot of this is I got a letter from the consultant saying I am not diabetic, nor am I at risk of diabetes. I called their department. A nurse I spoke to told me I wasn't diabetic. I asked if I would be diabetic if I changed my diet and ate normally and she agreed that yes (!) my glucose readings may then become too high...but never-the-less I wasn't diabetic. The consultant phoned me....very crossly, said he'd run the necessary tests, I wasn't diabetic because the statistics and their algorithms said so...that he was the expert and he actually slammed the phone down. I had angered him, I think, because I kept saying that my tests were in the normal range because I was controlling them through diet, that if I stopped the diet, I would expect my readings to rise.

I know others have had similar experiences. I am really reeling from it. I had felt supported, had eye tests, foot tests, more regular 1ACs and cholestrol tests. I have been under their care since Feb 2020 and have previously found them to be really helpful. I've spoken to their colleagues at 6 monthly appointments where I've been told I was doing a good job. I was actually really low maintenance and I've kept diabetes in remission. Getting good test results back (eg. averaging 37 - 39 on the 1AC) was motivating for me. Now this support has all gone. I feel I should complain ...how can the diabetic department actually not understand about diet control?

Not even sure what advice I'm after....just know that I feel I've been treated very badly. I've never even seen these people - only had phone call appointments. You would think that they would be pleased when people take their health needs seriously and work really hard to maintain the best health they can.

Em
 
I can only advise taking a deep breath, pushing what has been said to you out of your thoughts, but keep a record of any written information you have and log phone calls with who you spoke to and their advice/information - then be sure to test your blood glucose at regular intervals - maybe eating the same meal as exactly as you can and then logging the blood glucose response each month.
Many diabetics feel exactly the same way, that being successful is not rewarded by our HCPs, but that is not our problem but theirs for their lack of understanding of what they are trying to treat.
If you see that your numbers are getting higher, or you begin to feel unwell or lose weight unexpectedly then you'll have your information on hand, we just have to put up with the medical dinosaurs until they either go extinct or evolve a little.
 
Thank you Resurgam.

Yes, your advice is very good - I have all my correspondence and I'll make a record of the phone calls too. At least then, I feel I've monitored it myself. I'll continue to test fairly regularly too, and self-fund the glucose strips - it is very worth it to me. As you say, then any problems down the line and I will have my data to hand.

I've wanted to complain about it to the department/hospital and my husband was so cross he was saying I should take legal advice. But I think that because I've kept my glucose in control that I do not meet the criteria of the NICE guidelines, even though I certainly would if I went back to a 'normal' diet. I think I will just get reiterations of what's already been said and I am not about to harm myself by eating high carbs to prove my point. I've considering eating something higher carb as a one off, logging my numbers and going back to them, in writing, to ask for an explanation - but they were actually so arrogant and dismissive that I think they would just ignore it anyway.

Thank you again. I think, with the help of people on here, I've done a good job of looking after myself...I can continue without their support. If I'm feeling a bit rubbish about it I'll be reminding myself that I feel so, so much healthier than I did back in 2020 when my sugars were all over the place.

Em xx
 
You've done a BRILLIANT job. It's no fault of yours that your medics are so ignorant. Mine too, and I control with diet only as well. I am my priority and you are yours - what they think doesn't matter: it's all about your health not their pathetic responses. There are good medics out there, but I've never come across any. Others here have.

No need to jeopardise your wellbeing by dancing to tunes of others. Keep your good results going, keep testing. It's a shame you haven't the support you deserve, but at least you can take charge of your own health in the way you know is best.
 
As you have found, there is a lot of ignorance about diabetes even amongst medics who claim to be diabetes experts. Some of this is due to poor and outdated diabetes training. I would keep going with the low-carb diet, exercise etc. Test occasionally with your meter and if your BS starts to creep up go back to the GP.
 
You have absolutely no reason to be feeling down, you should be rejoicing, celebrating the fact that you no longer fit one of their labels.
These great and wise Dr's no longer consider you to have any form of diabetes, not because you have benefited from their advice or treatments, but because you are taking responsibility for your own health.
The rude consultant who has upset you so much probably spent less than 5 minutes looking at your records and results before making his decision. Why give him any more thought than he gave you, he doesn't deserve that much power.
The most important thing here is that you are doing what you can to be as healthy as you can. What labels they want to give you don't really matter.
Somehow I've got the feeling that no matter what the consultant thinks, your GP won't want to lose the funding for doing your regular checks. It is after all little more than a tick box exercise, easy money for the surgery.
 
I do agree with everyone that is answered.
I would like to ask, if you have been testing your readings before and consequent hours after, could you post your highest and lowest carb meals. So we can have a look for some answers or suggestions?
Any other tests other than hba1c and c-peptide?
Have you tried doing a similar testing by drinking high glucose as in a OGTT? You must be supervised cling this.!
Have you had hypos, if so, more than one a day?

I know what it's like to be battling for my health and asking questions, being fobbed off by an endocrinologist who didn't have a clue.
I eventually found one that did!
Your GP can refer you to an endocrinologist outside your health district. You could go private, maybe not an option!
If you are in your present location. My endocrinologist is a professor in endocrinology and he has his own personal website for private sector patients. He does NHS as well.
If you are interested, let me know.
But I would go through your GP first, if you want to get referred.

Regardless of all this, you are doing everything right.
 
I am not condoning the treatment you’ve had from the hospital at all but it seems they are now saying you are not LADA but more likely type 2 in remission. The initial LADA diagnosis seems from what you’ve said to have been based solely one finding lowish ketones on a single occasion despite normal c peptide. Odd. However the point I‘m getting to is that as a type 2 in the nhs you would normally be under the care of a GP not a hospital team. What do they have to say about it? They can organise the regular testing of hba1, eyes and feet etc.
 
On collection of the meter, the nurse decided to test my sugars...they were around 8 mmol and then, as I'd not used the ketone strips at all, she tested those too. This was all done with an eye-rolling - what a waste of time I was - attitude (she had previously agreed with a GP who told me that I could not be diabetic I was too thin). Then she saw the ketones were at 3, did a second test, called the GP in and I was sent to hospital.
At a follow-up appointment the Diabetes Consultant told me that he thought I was LADA. This was due to me not fitting the usual Type 2 phenotype. He said they would keep a close eye on me and he expected that in time I would not be able to control my sugars by diet. He ran a C-Peptide test and although this did not show LADA I was told it was sometimes inconclusive. That was in February 2020.
The upshot of this is I got a letter from the consultant saying I am not diabetic, nor am I at risk of diabetes. I called their department. A nurse I spoke to told me I wasn't diabetic. I asked if I would be diabetic if I changed my diet and ate normally and she agreed that yes (!) my glucose readings may then become too high...but never-the-less I wasn't diabetic. The consultant phoned me....very crossly, said he'd run the necessary tests, I wasn't diabetic because the statistics and their algorithms said so...
Gosh, I almost had to check I hadn't written your post myself some time ago and forgotten about it! I have had the same superficial tests, half-hearted corrections, and unnecessarily firm refutation of an earlier diagnosis -- albeit with a slightly different health condition.

I have found private doctors can help cut across an indifferent NHS service although they too make significant mistakes and are costly to see. It may be better to requst a second opinion via the NHS. If you feel you have encountered prejudice or bias from your body weight (or any other factor) then it may be the time to raise such a concern along with a wish to have another opinion. This may help expedite a request for a second opnion into a "correction of an error" rather than just adding to the diagnosis.

Having said all that, I personally find it is important to me that I keep an open mind and accept some of my own very firmly held self-diagnoses may turn out be mistaken. It is strange how lack of knowledge of another medical area blindsides you to symptoms of another condition which partly matches what you are dealing with. If you see what I mean!

Sadly I don't think the legal route your partner suggests would be productive or timely for you, although I am in support of litigating against medical errors where necessary.
 
The words Hospital and Consultant to me are synonymous with T1D and Insulin. in my CCG area, the hospitals deal with those aspects, and GP's generally do the follow on care and prescriptions. I too have had run ins with hospital specialists as I have reported elsewhere in the forum. To them I am in danger of serious and life threatening hypo's because I am not eating properly and my sugars are below the normal range (for them, an 8 mmol/l reading is close to hypoland, and 12 is a 'normal' reading. 21+ is hyper and 32+ is in the clouds and playing a harp). They have completely the wrong ideas about oral meds which to them are sweeties and not the real stuff (insulin) Actually the only severe hypo;s I have ever had is when I was on a pump and under their total care after an operation. So don;t worry about it. They are gods in their domain, but mere mortals outside it. You are doing very well and steering your ship well. Do not deviate.
 
Thank you all so much....I had just typed a reply to all, and then discovered I had was not logged in and lost everything I had written. I'm so sorry as I don't wish to be rude (which I now feel) and I had taken time to answer queries and to respond properly as I really do very much appreciate all your help and your support.

Em xx
 
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