Remarkable Changes

[Providence 62]

Hello LADAs and Type 1.5s

I was rediagnosed formally a couple of months back and have been through the mill a bit since I was first diagnosed as having diabetes. I had lost a ton of weight (30kg plus) had dry skin, dodgy eyes and an HB1AC of 122. As I was 'fat and 50' I was diagnosed as a Type 2 and put on medication - a lot of medication.

I had the side effects from hell. If a medication could have a side effect, I had it, metformin moments, canagliflozin giving me urine infections and glicazide causing weight gain. I felt really under the weather. Keeping my blood sugars down has been a constant battle and my diet has been extremely limited

Having done some reading on this great forum, I started to push for a review of my diagnosis. Finally after nearly 4 years, my diagnosis has been changed from Type 2 to LADA and after a bit more faffing around I was put on insulin.

Since then, things have really changed. My blood sugars are less crazy, I can eat the odd slice of cake or piece of fruit without having a reading of 11 plus the following morning. Now I get morning readings in the 7s and 8s and that is great progress.

The big difference is how I feel in myself, I have my energy and zing back (well, apart from a horrible bout of flu). I am able to go out and socialise without fear of having to run to the loo because my medication has upset my stomach. I feel clear headed for the first time in years and i am starting to show an interest in things other than falling asleep on my bed in the afternoon.

It's been tough, but thank goodness, I seem to be coming out the other side.

Only one thing though, it has been a major struggle to get my doctor to look into my condition a bit further. Why do the medical profession put a label on you so easily? I have been blaming myself for my crazy blood sugar for nearly 4 years and I have to admit to feeling a little bit miffed about that!

That aside, life is looking interesting again and everyone I know and deal with can see a huge difference.

So if you are not convinced by your diagnosis, please raise it with your doctor!

P

 

[kitedoc]

Hi @Providence 62, your user name reflects your advance for diagnostic oblivion to a new life of greater certainty.
That is one great stride against the rigidity of health professional thinking and training. Very well done !!!
My impression of the 'sometimes helpful' professions is that of a curate's egg. Wonderful and fantastic for the most part but occasionally abysmal and potentially dangerous as you have unfortunately found.
That you battled on whilst encumbered by incorrectly controlled BSLs and appalling side effects to medications is a testament to your tenacity and wish for a better life!
Why are some HCPs (Health Care Professionals) like this is a complex issue. Having been 'exposed' to such persons over 52 years of diabetes I have a few conclusions (not proven but reached after experience, time and testing of various theories).
1) There are real gems of HCPs out there who shine in their ability to be flexible and intuitive; to really listen; to embrace one's feelings, fears, doubts and hopes; who go out of their way to help you.
2) I have read that HCPs are supposed to be able to tolerate uncertainty, e.g. when a blood result does not make sense, when a treatment does not produce expected benefits etc That flexibility seems key to finding out what is really happening to a person and that persons do not always present themselves at a time when the diagnosis is obvious and straight forward . Some times time and patience is needed. I co-opted a term called "Premature Diagnostic Reflex" to label the tendency of some HCPs to plunge in with a 100% gilt-edged diagnosis set in stone. They forget that if you set something in stone, you may have to eat it later.
3) I suspect that HCP training, particularly for medical students is about using time pressure in exams to force this tendency to assess and diagnose rapidly - all very well when the situation is an emergency but potentially disasterous for the vast majority of health troubles which, we are regularly informed, is about 'chronic illness' (but not real life, thinking, feeling folks with these illnesses) And guidelines/professional codes of practice etc tend to reinforce inflexibility.
I have asked a number of doctors about a scenario: What if a particular treatment produces great, long-lasting results but the mechanism, reason for the effect is not understood? Does the doctor continue using the treatment or does the fact that it is not part of evidence-based medicine mean that he or she is forced to desist.? (as a devil's advocate how many discoveries about health have been found by accident and used whilst the reason for results was later worked out)? The practice of Health is being so over-regulated that persons suffer.
4) Further, my observations, and I am certain others', show that a lot of HCP training is about following the example of one's teachers and superiors (never forget that the organisation of hospital and HCP heirarchy grew out of the military).
If the trainee HCP is exposed to good role models that may leave a lasting impression which augurs well for their future interaction with persons and best use of their knowledge, skills, flexibility and abilities. The opposite however is likely where the exemplar is purposefully old-fashioned, and shirks anything new, possibly hard-bitten and used to making diagnostic short-cuts in the name of 'efficiency'.
5) HCP training and education is a morass of conversatism vs progressiveness. A new discovery about a health condition is feted and admired but the tried and proven remedies are struck to. One can understand this when some new discoveries have fallen flat on their faces in the past but it maybe politics, economics, self interest are in fact the factors in this. For example, after the discovery that some stomach ulcers were caused by a particular bug in the stomach it took the medical profession 20 years to finally accept the fact. We wonder why low carb diets have taken so long to be accepted in some quarters - look at HCP conversatism and at the influence of Big Food and Big Pharma. Add in the perceived slight to some HCPs' reputations and standing that a change in dogma might cause and you have a prefect storm. Again the practice of Health is being over-regulated/controlled and influenced by outside and internal forces.
6) HCPs are steeped in a subculture, through reasons above, to often feel guilty if they make a mistake. One or more may have been 'burnt' by over-critical consultants or other staff. (and you wonder now why some HCPs treat persons in their care with criticism, fear-provoking pronouncements etc rather than look at their lack of maturity in dealing with their past experiences and try to surgically excise the system in which the so and so's who teach and exemplify though a military-style training and ethos is perpetuated).
For HCPs, being conservative, cautious, inflexible, may be an excuse or unconscious reason to avoid censure and of making mistakes or minimising them. Similarly restrictions on their practice through edicts from regulatory bodies (like GMC etc), hospitals , other health authorities and fear of being reported, complaints raised etc and effect on their reputation can be a potent mix. That some are prepared to think outside the square and challenge beliefs mired in antiquity is a sign that not all is lost!!
How to deal with this?
Try to find HCPs who get can speak WITH (rather than them speaking TO) you; who listens to and acknowledges (the Chinese character of the word 'to listen' consists of the following components - Ears, Eyes, Heart, Undivided Attention) what you say, feel, think; who are flexible in their thinking; will be honest about what they know and not know but who will readily refer to another more skilled in a particular area; who will leave no stone unturned to find out what is happening or what to do about it, and also most importantly have a sense of humour which you can relate to.
I appreciate this may be a tall order and will take time.
Also I found doing my bit in terms of providing information such as BSLs and other data, proffering information from whatever source seems reputable to throw into the mix, working in a teamwork approach with your HCP (an alien concept to some HCPs) can all help.
I know that I cannot provide an answer for all the behavioural influences of subcultures of HCPs but I hope it helps you find the HCP gems amongst the rough. Best wishes to furthering your journey in a direction you choose.

 

[Japes]

I was also instantly labeled as "fat and 50" so had to be Type 2, struggled to get a GP (until a change of GP) to believe I was telling the truth about what I was eating, and was just getting congratulated for steady weight loss over three years. Life's just so much easier since getting the LADA diagnosis. I'll take the bit of weight back on again, (and am slowly losing it now I'm less in the clutches of a clinic who push "one size fits all" eating) over the craziness of the lead up to the re-diagnosis.

 

[Fenn]

Sounds like you are doing great.

What changed for you guys to have a different diagnosis?

 

[Providence 62]

Sounds like you are doing great.

What changed for you guys to have a different diagnosis?

Hi Fenn,

Because I had such a huge weight loss and extremely high blood sugars when I was diagnosed as T2 I was always a bit uncertain about my diagnosis. I was unable to keep my blood sugars at the levels that others seemed to be able to. Despite high levels of medication the sugars still remained at a higher level. It was very clear that I was not making much insulin at all. Doctor finally gave in and sent off for the relevant tests. When they came back it was very clear that my antibody levels were higher than they should have been.

So in a nutshell, nothing really changed - I had to persevere until a very dear friend of mine told me to go and put my foot down. She lives with a life altering condition and after I was diagnosed with cardiomyopathy earlier in the year, she told me to go to the GP and mutter about co-morbidities. So after a long time, I got the diagnosis I probably should have had from the start. So not much changed really. However, what has changed is how I feel. I am finally getting some control back now I am on the insulin and that is a great feeling.

Hope this helps,

P

 

[Fenn]

Hi Fenn,

Because I had such a huge weight loss and extremely high blood sugars when I was diagnosed as T2 I was always a bit uncertain about my diagnosis. I was unable to keep my blood sugars at the levels that others seemed to be able to. Despite high levels of medication the sugars still remained at a higher level. It was very clear that I was not making much insulin at all. Doctor finally gave in and sent off for the relevant tests. When they came back it was very clear that my antibody levels were higher than they should have been.

So in a nutshell, nothing really changed - I had to persevere until a very dear friend of mine told me to go and put my foot down. She lives with a life altering condition and after I was diagnosed with cardiomyopathy earlier in the year, she told me to go to the GP and mutter about co-morbidities. So after a long time, I got the diagnosis I probably should have had from the start. So not much changed really. However, what has changed is how I feel. I am finally getting some control back now I am on the insulin and that is a great feeling.

Hope this helps,

P

Thankyou, I was curious, my nurse and dsn have both expressed doubt over my dx but gad came back as 5, plus im proper struggling with bgs, ive been put on insulin (humalin I) although my numbers have come down from high teens, they still dont want to be below 10 at 2 hours, Its kind of frustrating, I was also dx t1 years ago by doc and spent the night in hospital because I had keytones and bg 26 but fixed myself with very low carb and extreme excercise, ive slowly got worse bgs over the last couple of years upto this point despite largely still avoiding carbs and never being “naughty” with food, I have been on 3 maxed out meds but still going into teens and staying there before the insulin (1 week today) so I do wonder, i suppose im being treated the same either way now so its just curiousity.

Everyone in my family is diabetic bar my brother, including both my daughters so...

Thanks for the reply

 

[Japes]

I was suspicious from the start also, with an Hba1c of 144, 4 stones weight loss and initial random blood test of 18.2. My next Hba1c was 57, where it stayed for 2 years with a lot of hard work on the LCHF way of eating and a lot of walking to keep bloods under control, along with another 4 stones weight loss and maximum Metformin until that stopped working. Hba1c crept up to 109 with other meds being upped all the time. I finally got a GP who referred me to the hospital where my ketones, bless them, finally decided to appear on a test at 5.4!

I'm just relieved I'm getting the correct treatment, but also am pleased my gut instinct about it all was correct as well.

 

[Fenn]

I suspect im T2 with both IR and a failing pancreas, my DSN is 100% about my pancreas as she says my weight is ok (I do have a belly but nothing anywhere else, my wife says I have chicken legs and a tiny bum lol) but who knows I dont think it much matters now, glad you guys got the dx you deserved

 

[Providence 62]

Thankyou, I was curious, my nurse and dsn have both expressed doubt over my dx but gad came back as 5, plus im proper struggling with bgs, ive been put on insulin (humalin I) although my numbers have come down from high teens, they still dont want to be below 10 at 2 hours, Its kind of frustrating, I was also dx t1 years ago by doc and spent the night in hospital because I had keytones and bg 26 but fixed myself with very low carb and extreme excercise, ive slowly got worse bgs over the last couple of years upto this point despite largely still avoiding carbs and never being “naughty” with food, I have been on 3 maxed out meds but still going into teens and staying there before the insulin (1 week today) so I do wonder, i suppose im being treated the same either way now so its just curiousity.

Everyone in my family is diabetic bar my brother, including both my daughters so...

Thanks for the reply

Your story sounds very similar to mine. At least you are on the insulin now- are you ramping it up gradually? I am on Lantus. My DN has kept me on the Glicazide and I am going up by 2 units of Lantus every other day. I have to say I am feeling so much better. I am even going out to help my residents association deliver the district with leaflets tomorrow. That would have been unthinkable a few months back. We have a few diabetics in the family, self, cousin, uncle and now my younger brother is being tested after his hb1ac turned up some interesting numbers. (I hope for his sake that it was a fluke, he LOVES beer).

Thanks for your reply, it's good to hear from others who have had similar issues to mine.

P62

 

[Providence 62]

I was suspicious from the start also, with an Hba1c of 144, 4 stones weight loss and initial random blood test of 18.2. My next Hba1c was 57, where it stayed for 2 years with a lot of hard work on the LCHF way of eating and a lot of walking to keep bloods under control, along with another 4 stones weight loss and maximum Metformin until that stopped working. Hba1c crept up to 109 with other meds being upped all the time. I finally got a GP who referred me to the hospital where my ketones, bless them, finally decided to appear on a test at 5.4!

I'm just relieved I'm getting the correct treatment, but also am pleased my gut instinct about it all was correct as well.

@Japes - wow, your numbers on diagnosis sound even grimmer than mine! Glad you got referred to the hospital and are getting this treated at last. It's been quite a weight off my mind, it was very dispiriting checking my FBG and having all sorts of horrible numbers. I also agree wholeheartedly about the gut instinct. Are you on insulin now?



P62

 

[Japes]

@Japes - wow, your numbers on diagnosis sound even grimmer than mine! Glad you got referred to the hospital and are getting this treated at last. It's been quite a weight off my mind, it was very dispiriting checking my FBG and having all sorts of horrible numbers. I also agree wholeheartedly about the gut instinct. Are you on insulin now?



P62

Yes, I've been on insulin since February when I turned up for my first appointment at the clinic with the second set of numbers and the ketones of 5.4. I was taken off Metformin and Gliclazide that day and put straight on insulin. Nurses were hysteric and wanted to keep me in, consultant and registrar took the more reasonable response that I'd been living with those high numbers for some time, (I had never been so thankful for my obsessive record keeping) and that with certain parameters I had to follow, they were fine with me leaving that day.

Nurses were also really anti-low carb and a good couple of hours were wasted whilst they tried to re-educate me. I'm eating more carbs than I like, but fewer than they would like, mostly because I'm also convinced I'm at the very least gluten intolerant but the coeliac screening came back as negative as I'd not been eating any gluten!

I'm highly likely to be discharged back to GP care next time and am looking forward to reverting to my preferred way of eating. (On which I'd never felt healthier when the blood sugars were controlled by diet, oral meds and exercise. These days I'm always feeling slightly sluggish especially if the carbs have been bready!)

 

[_petal_]

Everyone in my family is diabetic bar my brother, including both my daughters so...

Have any of your family members been tested for monogenic diabetes? The number of your family members with diabetes suggests it's a possibility...

Have a look at https://www.diabetesgenes.org, they have a MODY probability calculator so you can check whether it's likely or not.

_petal_

 

[Fenn]

Have any of your family members been tested for monogenic diabetes? The number of your family members with diabetes suggests it's a possibility...

Have a look at https://www.diabetesgenes.org, they have a MODY probability calculator so you can check whether it's likely or not.

_petal_

Thanks, That test is for people diagnosed at 35 yrs or less, I was 40, I looked at the monogenic diabetes but that is too little insulin, my youngest was diagnosed at 2 yrs with hyperinsulinism, she went into a coma when they gave her ogtt, so the opposite, my other at 13 yrs, both are on metformin only but we were told to expect them to become t1 at some point, the 2yr old is 15 now and so far so good apart from ramdom hypos

Thankyou

 

[_petal_]

@Fenn, it does sound like there is something unusual going on with your particular diabetes, and I wouldn't necessarily rule out a genetic cause unless you have already been tested for this.

Everyone is different, and some MODYs have been diagnosed in their 40's (have a search for posts from @desidiabulum and @Rodney from Canada as these may provide some insight as both have been diagnosed in their 40's), so it does happen.

It could also be that your family has a particular gene change that hasn't yet been identified as a cause, although I can appreciate this may be unlikely due to the hyperinsulinism. The genes being discovered as the cause for rare diabetes types is increasing all the time, so even if they can't pinpoint the cause now, if it is down to a single gene then it could be uncovered in the future.

Edit: I hope your current treatment is working well for you, and you can get to a correct diagnosis!

_petal_

 

[DCUKMod]

Hi Fenn,

Because I had such a huge weight loss and extremely high blood sugars when I was diagnosed as T2 I was always a bit uncertain about my diagnosis. I was unable to keep my blood sugars at the levels that others seemed to be able to. Despite high levels of medication the sugars still remained at a higher level. It was very clear that I was not making much insulin at all. Doctor finally gave in and sent off for the relevant tests. When they came back it was very clear that my antibody levels were higher than they should have been.

So in a nutshell, nothing really changed - I had to persevere until a very dear friend of mine told me to go and put my foot down. She lives with a life altering condition and after I was diagnosed with cardiomyopathy earlier in the year, she told me to go to the GP and mutter about co-morbidities. So after a long time, I got the diagnosis I probably should have had from the start. So not much changed really. However, what has changed is how I feel. I am finally getting some control back now I am on the insulin and that is a great feeling.

Hope this helps,

P

Providence, reading your post, it could be useful to update your signature? As you state you are now using insulin, it seems your meds listed may be out of date?

 

[Providence 62]

Providence, reading your post, it could be useful to update your signature? As you state you are now using insulin, it seems your meds listed may be out of date?

Done, thanks for pointing this out.

P

 

[DCUKMod]

Done, thanks for pointing this out.

P

No worries. It can just sometimes cause confusion.

Are you still taking the Gliclazide?

 

[Providence 62]

No worries. It can just sometimes cause confusion.

Are you still taking the Gliclazide?

Yes, just while I am easing onto Lantus.

P

 

[DCUKMod]

Yes, just while I am easing onto Lantus.

P

Thanks for clarifying.