Hi All,
T1 for 32yrs, currently on an omnipod and g7. Little bit of background, about 10yrs ago my insulin requirements increased quite rapidly. I was on 28u of insulatard and around 36u of actrapid a day. This doubled within 2wks, GP was basically useless as was stating I had no control and was doing it all wrong. Was then put under the diabetes team at Durham, who during the 1st 5mins of conversation told me to get away from the gp practice. So, thinking they were in agreement with me I worked with them.
Started by changing my insulins to Glargine and novorapid, 2wks in on that and was dosing 100u glargine and 120u novorapid a day. So this didn't work and was eventually moved to Humilin I basal and Humilin S. Still insulin requirements remained the same and hba1c was now 72. They then decided to move me to Tresiba and Apidra as they told me Tresiba lasted 48hrs, pffft. Well after 2wks on that I was using 260u Tresiba and 300u apidra a day. Was then accused if not taking it seriously by the team. As we have MHS choices I moved to Newcastle under Professor Shaw and his team. They were brilliant and went in depth looking at everything, diet included. They could find no issues and placed me back onto the Humilin insulins with a caveat that Humilin I was injected 3 times a day. This seemed to bring back some control for a while.In the background a new GP was checking my testosterone levels as they were dropping quickly over 5yrs, from 34 to 11.1 where I am now.
At the turn of 2026 my insulin demands had again shot up, weight gained no matter what i tried and cpap pressures had to be increased. I had been doing my research anyway and cortisol appeared to be the cause. Managed to speak with an endo at the diabetes clinic and he agreed to a supression test. This was done in March and I heard nothing back. Curiosity got the better of me 2wks agaoband brand to request the results were emailed to me. The endo's admin said it needed signing off and would be with me in a couple of days. Well it never appeared so I called the dsn team and asked them. Cortisol was 103nmol after suppression test, dsn hadn't realised this and said it looked fine.
Within 30secs of that call ending, a consultant called me and apologised profusely for their **** up and explained that after a suppression test my cortisol should be lower than 50nmol. Was informed that they would have a meeting this week regarding the next steps and further tests.
10yrs it has taken, 10yrs of being told I wasn't taking t1 seriously and accused of lying. If i had not agreed to a pump, which has helped as data is there for them to see the daily fight, i would probably have never had a supression test.
All makes sense now, drop in testosterone, huge insulin resistance, fat accumulation front of neck and stomach. Inability to lose weight, huge fatigue.
As much as I fought against getting a pump, I am now grateful as it has done a job and shown the team I am not goofing off with my control.
Hopefully they can get to the cause and surgery can fix the issue, looking forward to not changing a pump every 24hrs, adding 16u humilin I and watching the dawn phenomenon and foot to floor surge me well into the 20's every day.
T1 for 32yrs, currently on an omnipod and g7. Little bit of background, about 10yrs ago my insulin requirements increased quite rapidly. I was on 28u of insulatard and around 36u of actrapid a day. This doubled within 2wks, GP was basically useless as was stating I had no control and was doing it all wrong. Was then put under the diabetes team at Durham, who during the 1st 5mins of conversation told me to get away from the gp practice. So, thinking they were in agreement with me I worked with them.
Started by changing my insulins to Glargine and novorapid, 2wks in on that and was dosing 100u glargine and 120u novorapid a day. So this didn't work and was eventually moved to Humilin I basal and Humilin S. Still insulin requirements remained the same and hba1c was now 72. They then decided to move me to Tresiba and Apidra as they told me Tresiba lasted 48hrs, pffft. Well after 2wks on that I was using 260u Tresiba and 300u apidra a day. Was then accused if not taking it seriously by the team. As we have MHS choices I moved to Newcastle under Professor Shaw and his team. They were brilliant and went in depth looking at everything, diet included. They could find no issues and placed me back onto the Humilin insulins with a caveat that Humilin I was injected 3 times a day. This seemed to bring back some control for a while.In the background a new GP was checking my testosterone levels as they were dropping quickly over 5yrs, from 34 to 11.1 where I am now.
At the turn of 2026 my insulin demands had again shot up, weight gained no matter what i tried and cpap pressures had to be increased. I had been doing my research anyway and cortisol appeared to be the cause. Managed to speak with an endo at the diabetes clinic and he agreed to a supression test. This was done in March and I heard nothing back. Curiosity got the better of me 2wks agaoband brand to request the results were emailed to me. The endo's admin said it needed signing off and would be with me in a couple of days. Well it never appeared so I called the dsn team and asked them. Cortisol was 103nmol after suppression test, dsn hadn't realised this and said it looked fine.
Within 30secs of that call ending, a consultant called me and apologised profusely for their **** up and explained that after a suppression test my cortisol should be lower than 50nmol. Was informed that they would have a meeting this week regarding the next steps and further tests.
10yrs it has taken, 10yrs of being told I wasn't taking t1 seriously and accused of lying. If i had not agreed to a pump, which has helped as data is there for them to see the daily fight, i would probably have never had a supression test.
All makes sense now, drop in testosterone, huge insulin resistance, fat accumulation front of neck and stomach. Inability to lose weight, huge fatigue.
As much as I fought against getting a pump, I am now grateful as it has done a job and shown the team I am not goofing off with my control.
Hopefully they can get to the cause and surgery can fix the issue, looking forward to not changing a pump every 24hrs, adding 16u humilin I and watching the dawn phenomenon and foot to floor surge me well into the 20's every day.
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