Conspiracy Theory

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Judd10

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Relationship to Diabetes
Type 1
Hi,

In 1990, at the age of 30 and about 14 stone in weight, I started getting male thrush and atheletes foot, this was every 6 - 8 weeks or so. I played football twice a week and went swimming every weekend.

After attending my GP, both myself and my wife were sent for STI tests at a local hospital, this was towards the end of 1991, around the time of Freddy Mercurys death.

Both of us tested negative. My GP carried on treating me for Thrush etc for the next 9 years until in December 2000 when I passed out in a local supermarket. The hospital notified my GP that my blood sugar was very high and suggested possible diabetes. I visited my GPs in February regarding a chest infection. The GP did not mention the hospital notification and it was not until I saw another GP at the same surgery, in June of the same year that I was informed of the Diabetes issue.

Following 24 hour Urine tests, etc, I was formally diagnosed with Type 2 diabetes. I started with metformin but within 9 months I was put on Novamix insulin. I have not had Trush or atheletes foot since, in 23 years.

In 2009 I was prescribed medication to treat Autonomic Neuropathy, however, I was only told that it was because of my diabetes, it was only after I investigated the medication, via the internet, that I relised that it was for Autonomic Neuropathy.

In 2010 I became aware, again via the Internet, that constant thrush and atheletes foot is a possible sign of diabetes so I went to my GP and had an appointment with the senior partner in the practice. We went through my notes and she agreed that instead of a STI test I should have been sent for a Blood glucose test in 1991.

In 2014 I started getting pins and needles in my feet, my legs had already started scaring a few years earlier. The pain and numbness became so bad that I needed crutches to walk. I visited my GP in November 2015 and was diagnosed with PDPN and signed off sick from work. 6 months later in April 2016 I had to take ill health retirement. I then approached my GP in the summer of that year and asked if the obstacles I had encountered at work regarding management of my Diabetes could have contributed i making my condition worse, She thought not.

In November 2016 there was a fire at a storage facility and all patient notes up to the year 2000 were completely destroyed. The fire had been deliberately started. Since then I have fought an uphill battle with medical authorities just to get my diagnosis changed from Type 2 to 1.5.
 
Wow! Really sorry to hear you have had such a poor journey with diabetes and that, by the sound of it, there have been missed opportunities to diagnose you in the early stages. Also really sorry to hear that you are suffering diabetes complications now. I wouldn't like to comment on the destruction of medical records as I imagine a lot of patients were impacted by that and no doubt some may well have had similar issues with misdiagnoses so it might not be related to your records specifically, but I can understand it making you wonder! Misdiagnoses still happen all too frequently although the high result from the hospital attendance should have sparked some action in your case you would have thought. I know it was a long time ago, but did the hospital provide any treatment before they discharged you?

I am not sure what you mean about the obstacles you encountered at work regarding your diabetes management as you don't provide any information as regards that but emplyers are supposed to make reasonable adjustment. I very much doubt a GP would have enough in depth knowledge of insulin managed diabetes to make a call on whether your employers intransigence impacted your diabetes and lead to your complications if that is what you mean. Sadly, if you had high BG levels for 9 years before you were diagnosed, then that may well have laid the foundations for the complications you experience now, assuming your diabetes was reasonably well managed once you started on insulin.

I think it is certainly possible that you were a slow onset Type 1 rather than Type 2 (I am not a fan of the Type 1.5 label as it means different things to different people and even diabetes consultants use it in different contexts) and it might be worth pushing for Type 1 testing, (GAD antibody and C-peptide tests) although they may not be conclusive at this late stage and you would ideally need to be referred to a diabetes specialist clinic for the tests and interpretation of the results. Not sure if you are already treated at the diabetes clinic with being on insulin?

Are you happy with your insulin regime as mixed insulin is rather restrictive and there are more modern options now which whilst they take a bit more headspace in calculating doses etc, can provide a lot more flexibility with lifestyle and diet. For instance, you can skip meals when you want or eat later than usual and if you are ill, you can counteract high BG levels caused by illness, whereas with mixed insulin that is not so easy.

Do you have Freestyle Libre or other CGM. Some Type 2 diabetics on insulin can get them prescribed but others sadly struggle to get access to them. There is a bit of a two tier support system within the NHS between Type 1 and Type 2 as you are probably aware, which is totally unfair but the current guidelines are for all Type 1s to be prescribed them and Type 2s using 2 or more insulin injections a day I believe.... (edited to add.... providing they meet certain criteria) They are a great bit of kit for helping you manage your diabetes once you understand how they work.

Anyway, just wanted to respond to your post and offer support and if we can help you in any way, just ask.
 
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What a stressful time you’ve had @Judd10 It sounds very wearing quite apart from the physical issues.

Your avatar says MODY - is that right? You mention Type 1.5 in your post?
 
Hi,

In 1990, at the age of 30 and about 14 stone in weight, I started getting male thrush and atheletes foot, this was every 6 - 8 weeks or so. I played football twice a week and went swimming every weekend.

After attending my GP, both myself and my wife were sent for STI tests at a local hospital, this was towards the end of 1991, around the time of Freddy Mercurys death.

Both of us tested negative. My GP carried on treating me for Thrush etc for the next 9 years until in December 2000 when I passed out in a local supermarket. The hospital notified my GP that my blood sugar was very high and suggested possible diabetes. I visited my GPs in February regarding a chest infection. The GP did not mention the hospital notification and it was not until I saw another GP at the same surgery, in June of the same year that I was informed of the Diabetes issue.

Following 24 hour Urine tests, etc, I was formally diagnosed with Type 2 diabetes. I started with metformin but within 9 months I was put on Novamix insulin. I have not had Trush or atheletes foot since, in 23 years.

In 2009 I was prescribed medication to treat Autonomic Neuropathy, however, I was only told that it was because of my diabetes, it was only after I investigated the medication, via the internet, that I relised that it was for Autonomic Neuropathy.

In 2010 I became aware, again via the Internet, that constant thrush and atheletes foot is a possible sign of diabetes so I went to my GP and had an appointment with the senior partner in the practice. We went through my notes and she agreed that instead of a STI test I should have been sent for a Blood glucose test in 1991.

In 2014 I started getting pins and needles in my feet, my legs had already started scaring a few years earlier. The pain and numbness became so bad that I needed crutches to walk. I visited my GP in November 2015 and was diagnosed with PDPN and signed off sick from work. 6 months later in April 2016 I had to take ill health retirement. I then approached my GP in the summer of that year and asked if the obstacles I had encountered at work regarding management of my Diabetes could have contributed i making my condition worse, She thought not.

In November 2016 there was a fire at a storage facility and all patient notes up to the year 2000 were completely destroyed. The fire had been deliberately started. Since then I have fought an uphill battle with medical authorities just to get my diagnosis changed from Type 2 to 1.5.
Glad that you have found the forum after such an uphill battle that you have had.
There are a quite a few of us on here who have been diagnosed with T1 later in life. This is often referred to as T1.5 or LAD. I prefer to just stick to the T1 label my consultant uses as our management is much the same, and once all our beta cells have gone, it doesn’t matter how long it has taken.

The late and slower onset often results in misdiagnosis and can cause some of the issues that you have experienced. You mention that you were out on mixed insulin. Are you still using that? How are you managing with that? Life can be a lot more flexible by switching to two separate insulins (A Basal/Bolus regime) but it does involve more injections and that doesn’t suit everyone.

Very pleased that you have found us. Do fire away with any questions that arise.
 
Hi all, sorry for the the late reply, had a rathert nasty urinary tract infection. Been on Humalog 200 and Toujeo for many years now, not sure where the Mody came from.
 
Hi all, sorry for the the late reply, had a rathert nasty urinary tract infection. Been on Humalog 200 and Toujeo for many years now, not sure where the Mody came from.
Sorry to hear that. How are your Blood Glucose levels? It can be a nightmare to keep them under control if you’ve got an infection. I see from your 'About' section on your avatar that you are on quite high doses of insulin, 52 units per meal, and 116 basal, I wonder if you have a degree of insulin resistance, which won’t help trying to keep your levels steady, Are you still on Metformin, or any other of the drugs that are normally prescribed to people with Type 2 to try and overcome resistance? (it’s not unusual to be on a mix of therapies) I’m just wondering if you are on one of the ones that makes you pee out more glucose, because this can cause UTIs.
 
Sorry to hear that. How are your Blood Glucose levels? It can be a nightmare to keep them under control if you’ve got an infection. I see from your 'About' section on your avatar that you are on quite high doses of insulin, 52 units per meal, and 116 basal, I wonder if you have a degree of insulin resistance, which won’t help trying to keep your levels steady, Are you still on Metformin, or any other of the drugs that are normally prescribed to people with Type 2 to try and overcome resistance? (it’s not unusual to be on a mix of therapies) I’m just wondering if you are on one of the ones that makes you pee out more glucose, because this can cause UTIs.
 
I was on Dapagliflozin for a couple of years, this helped and I managed to lose a lot of weight so I could have a TAVI at New Cross Heart and Lung Centre in April 21. After a couple of UTI's my consultant took them off me. I have tried metformin again but to no avail. Currently I have another UTI. My blood glucose levels are normally in the high teens.
 
Good afternoon
I have suffered UTI's for many decades. Three/four years ago my doctor prescribed what here, in Spain, is called Britapen which is mainly Ampicilina. It took 10 or 12 days for it to clear the infection. One tablet every 8 hours which meant of course setting the alarm because a tablet had to be taken during the night, but they worked but only for 6 weeks or so.
Eight months ago following the clearance of the infection, I decided to take one tablet before bed every night. I have not had a UTI since then.
 
UTIs are notoriously tricky to treat because it depend on in which part of the system the infection is as it requires different antibiotics and without lab tests to ascertain that it can take a while to find which one will work.
However high blood glucose will not help.
 
Sorry to hear you’ve had such a rough time @Judd10 and that you are now having to manage nerve damage alongside everything else. Sustained high glucose levels can play havoc with various parts of the nervous system and fine blood vessels.

Are you getting regular eye checks?

When I was a gym goer I used to regularly pick up athlete’s foot and/or ‘jock itch’ (I always suspected it was in the changing rooms and showers). Since we got a dog and I swapped gym treadmill for long dog walks I’ve not had athletes foot over the past 7 years. I wonder if your swimming and football changing rooms may also have had a few of those pesky spores lurking in the early years?

My average BG levels weren’t elevated at the time, but those thrush/yeast/fungal infections sure do love a warm sugary environment!

With your relatively large insulin doses, and the positive effects you’ve had from meds like Dapagliflozin over the years my money would be on your being an insulin-dependent T2 or LADA rather than T1, though that’s just an unqualified hunch on my part from what you’ve shared.

Welcome to the forum!
 
After being told that I am now unsuitable for Dapagaflozin by the Q.E. and my new G.P. I did a bit of investigating myself where I discovered that it had been withdrawn for Type 1 Diabetics in November 2021, 7 months after my TAVI. I am now more than certain that I am Type 1 and should have been diagnosed as such in 1991 instead of Type 2 in 2000. Unfortunately the time limit for medical negligance cases is 3 years.
 
After being told that I am now unsuitable for Dapagaflozin by the Q.E. and my new G.P. I did a bit of investigating myself where I discovered that it had been withdrawn for Type 1 Diabetics in November 2021, 7 months after my TAVI. I am now more than certain that I am Type 1 and should have been diagnosed as such in 1991 instead of Type 2 in 2000. Unfortunately the time limit for medical negligance cases is 3 years.
3 years from when the harm occurred due to negligence.
 
Ten years before I was given a diagnosis of type 2 I had a blood test flagged for high glucose.
The clinic dealt with it by deleting the test from the annual check on my thyroid hormone levels.
Sigh.
 
Just an update, after requesting a C-Petide test at the Q.E. I finally have the results, my Levels are 487. I am sure that if I had been sent for a blood glucose instead of a STI test with my wife in 1991, I might not have become so disabled and forced into early ill health retirement. I will never trust a medical professional again. They are more concerned with protecting their colleges that helping their patients.
 
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