- Messages
- 19
- Type of diabetes
- Type 2
- Treatment type
- Insulin
My name is George Rodgers I’m 50 years old, I’m mixed race and I’m HIV. In 2000 I started taking a combination therapy regime containing ddI. I was fine for four weeks then started suffering agonising abdominal pain. I stopped my HIV drugs and two days later the pain went away. But by that time the damage had been done.
Blood tests had made it clear I had had pancreatitis (inflammation of the pancreas). As I subsequently found, the ddI regime had turned someone with a family history of diabetes into someone with the condition and quite a severe form at that. It’s resulted in a long struggle (as late as July 2010) to find a HIV therapy that didn’t make things worse.
There is a third type of diabetes that exists, which is caused by toxic damage to the pancreas. Although the most common cause is alcohol use, some drugs can also cause it, including HIV drugs which is what happened to me.
I received different reactions to my pancreatitis from my HIV consultant and a diabetologist I subsequently saw. My HIV doctor said, “Your amylase is up by 25% and we normally only stat worrying if there’re up 50%.” The diabetologists reaction was “It’s a good job you stopped when you did or you would have been dead”
I feel HIV physicians are overly focused on HIV and not given my diabetes sufficient attention. Repeated requests to be referred to a diabetes specialist have been met with some reluctance both at (Hospital names removed) Hospital. I found out about the diabetic team at Hospital name removed) via my GP and I had to use blackmail to get an appointment to see the diabetic team at (Hospital name removed) (more on that incident later).
The pancreatitis had scared me from taking HIV drugs and I went on a treatment break for 18 months. My diabetes at that time was manageable with diet and exercise. When I restarted, with a CD4 count of 150, I went on AZT/3TC (Combivir) and nevirapine, chosen with diabetes in mind and did well for 18 months. Then unfortunately in 2003 I became resistant to the nevirapine and got accused by my consultant that I wasn’t taking my medication properly.
After some chopping and changing I was eventually kept on the Combivir and switched to a boosted protease inhibitor Norvir, indinavir/ritonavir. My glucose levels suddenly doubled to 12mmols/l. I felt really unwell, with high glucose levels you feel kind of speedy. I got bad tempered and emotional, alternated between feeling hyper and exhausted.
When my sugar levels shot up I went back to my HIV doctor. He said, “It can’t be the meds it must be your diet” and didn’t propose any diabetes medications.
I went to Hospital name removed) and met with the same kind of reaction despite the consultant there knowing the problems I had at (Hospital name removed). When I raised concerns about the medication she was giving me and asked, “How is Kaletra lopinavir/ritonavir going to affect my diabetes?” She totally blanked the question telling me it was down to my GP to sort my diabetes out.
Knowing full well that my GP doesn’t know anything about HIV medication I had no choice but to stay of medication. It wasn’t until June 2008 that I went back on medication. By this time my CD4 was down to 29. I was given two choices I could start on a lower dose, something I asked for two years previously when I first transferred to (Hospital name removed) and was told no or hit it hard by going on a higher dose.
I opted for the higher dose but after three days of being on it I was suffering from some serious side effects. I rang the adherence nurse specialist and the response I got was, “This doesn’t happen to other patients” and had the phone put down on me. This was after explaining down the phone that I had previously been diagnosed with pancreatitis. Once again I had no choice but to stop medication
The consultant’s response was no better when I saw her a week later. I was accused that maybe it could be psychological. There was nothing psychological about my sugar levels going into double figures, my metabolism going ten to the dozen and being sick two minutes after taking medication, I was bringing up bile.
I ended up using blackmail and refused to go back on meds until I had spoken to someone from the diabetic team. I did see the diabetologist there, that’s was the very first time someone actually told me my diabetes was due to drug induced pancreatitis. The diabetologist also informed my consultant that I was right to be concerned the effects anti-virals have on my diabetes, as left unchecked diabetes is just as deadly as HIV if left unchecked.
Up until October 2009 I thought I was a so called unique case, I was even prepared to let go of my anger as I was transferring my medical care back to (Hospital name removed)(a consultant there had heard the problems I was having, he had read the article I did for NAM and had agreed to see me).
Then I broke out in shingles that's how stressed out I had been about the whole thing, the doctor explained to me why I might be having trouble with certain medication and it’s all down to my genetics and something called micro toxicity. Thinking that this was something new I did a google search and found out that this information has been around as late as 1999. Along with articles on HIV related diabetes: A Complex Interaction between liver damage body mass and genetics? Was reported by NAM way back in 2004.
I wasn’t a unique case after all and if somebody had bothered to do their home work then I wouldn’t have had to go through half the stuff I’ve been through and that includes three near death experiences and two biopsies and why because some consultants still have the attitude of one size fits all.
How many other patients out there have ended up facing similar problems and where is the support when things like this arise I had to face this all one my own. None of the support groups offered any help, apart from change hospitals. It was pointless talking to my GP about the situation and I wasn’t to sure about contacting UK Diabetes because of disclosure.
In this day and age there is no excuse. What I went through nearly killed me, it also put such a strain on my relationship that I nearly ended up killing my partner on more than one occasion, as he wasn’t listening either and after eleven years of living together we have split up. Part of that reason was because we were left to face a difficult situation on our own, no one offered us support.
In this day and age there is no reason for consultants not to take the holistic approach when it comes to HIV. I’ve been robbed of something that I’ll never get back and that’s time. For the past six years I’ve only had 18 months where everything was going all right and my life hasn’t been going along like some clapped out banger that keeps stalling every hundred yards.
THT was put together for helping people with HIV, how about some support for people who have ended up with complications because of HIV medication. Living with diabetes is no walk in the park because out of the two I’d say diabetes is more deadly than HIV if things aren’t handled right when it comes to medication. The medication might be suppressing the virus, but if a consultant doesn’t weigh up the situation properly and the diabetes gets out of control then that in it’s self will have an in direct effect on the HIV.
There’s also the psychological side of it to being diabetic as well especially when things go wrong and it’s not your fault. How do you get back on track after something like this without any support?
Isn’t it about time someone started to bridge the gap between these different services and pulling together especially now we are living longer with HIV and anti-virals. Though my problem has nothing to do with being on anti virals long term.
There’s a generation coming up that already have diabetes how many of them will end up HIV and have to learn how to cope with two chronic illnesses and there’s no one to support them!
All so the rules need to be changed when it comes to HIV and diabetes or D.I.D. as I call it (Drug Induced Diabetes) because getting DID through antivirals is a totally different ball game.
Blood tests had made it clear I had had pancreatitis (inflammation of the pancreas). As I subsequently found, the ddI regime had turned someone with a family history of diabetes into someone with the condition and quite a severe form at that. It’s resulted in a long struggle (as late as July 2010) to find a HIV therapy that didn’t make things worse.
There is a third type of diabetes that exists, which is caused by toxic damage to the pancreas. Although the most common cause is alcohol use, some drugs can also cause it, including HIV drugs which is what happened to me.
I received different reactions to my pancreatitis from my HIV consultant and a diabetologist I subsequently saw. My HIV doctor said, “Your amylase is up by 25% and we normally only stat worrying if there’re up 50%.” The diabetologists reaction was “It’s a good job you stopped when you did or you would have been dead”
I feel HIV physicians are overly focused on HIV and not given my diabetes sufficient attention. Repeated requests to be referred to a diabetes specialist have been met with some reluctance both at (Hospital names removed) Hospital. I found out about the diabetic team at Hospital name removed) via my GP and I had to use blackmail to get an appointment to see the diabetic team at (Hospital name removed) (more on that incident later).
The pancreatitis had scared me from taking HIV drugs and I went on a treatment break for 18 months. My diabetes at that time was manageable with diet and exercise. When I restarted, with a CD4 count of 150, I went on AZT/3TC (Combivir) and nevirapine, chosen with diabetes in mind and did well for 18 months. Then unfortunately in 2003 I became resistant to the nevirapine and got accused by my consultant that I wasn’t taking my medication properly.
After some chopping and changing I was eventually kept on the Combivir and switched to a boosted protease inhibitor Norvir, indinavir/ritonavir. My glucose levels suddenly doubled to 12mmols/l. I felt really unwell, with high glucose levels you feel kind of speedy. I got bad tempered and emotional, alternated between feeling hyper and exhausted.
When my sugar levels shot up I went back to my HIV doctor. He said, “It can’t be the meds it must be your diet” and didn’t propose any diabetes medications.
I went to Hospital name removed) and met with the same kind of reaction despite the consultant there knowing the problems I had at (Hospital name removed). When I raised concerns about the medication she was giving me and asked, “How is Kaletra lopinavir/ritonavir going to affect my diabetes?” She totally blanked the question telling me it was down to my GP to sort my diabetes out.
Knowing full well that my GP doesn’t know anything about HIV medication I had no choice but to stay of medication. It wasn’t until June 2008 that I went back on medication. By this time my CD4 was down to 29. I was given two choices I could start on a lower dose, something I asked for two years previously when I first transferred to (Hospital name removed) and was told no or hit it hard by going on a higher dose.
I opted for the higher dose but after three days of being on it I was suffering from some serious side effects. I rang the adherence nurse specialist and the response I got was, “This doesn’t happen to other patients” and had the phone put down on me. This was after explaining down the phone that I had previously been diagnosed with pancreatitis. Once again I had no choice but to stop medication
The consultant’s response was no better when I saw her a week later. I was accused that maybe it could be psychological. There was nothing psychological about my sugar levels going into double figures, my metabolism going ten to the dozen and being sick two minutes after taking medication, I was bringing up bile.
I ended up using blackmail and refused to go back on meds until I had spoken to someone from the diabetic team. I did see the diabetologist there, that’s was the very first time someone actually told me my diabetes was due to drug induced pancreatitis. The diabetologist also informed my consultant that I was right to be concerned the effects anti-virals have on my diabetes, as left unchecked diabetes is just as deadly as HIV if left unchecked.
Up until October 2009 I thought I was a so called unique case, I was even prepared to let go of my anger as I was transferring my medical care back to (Hospital name removed)(a consultant there had heard the problems I was having, he had read the article I did for NAM and had agreed to see me).
Then I broke out in shingles that's how stressed out I had been about the whole thing, the doctor explained to me why I might be having trouble with certain medication and it’s all down to my genetics and something called micro toxicity. Thinking that this was something new I did a google search and found out that this information has been around as late as 1999. Along with articles on HIV related diabetes: A Complex Interaction between liver damage body mass and genetics? Was reported by NAM way back in 2004.
I wasn’t a unique case after all and if somebody had bothered to do their home work then I wouldn’t have had to go through half the stuff I’ve been through and that includes three near death experiences and two biopsies and why because some consultants still have the attitude of one size fits all.
How many other patients out there have ended up facing similar problems and where is the support when things like this arise I had to face this all one my own. None of the support groups offered any help, apart from change hospitals. It was pointless talking to my GP about the situation and I wasn’t to sure about contacting UK Diabetes because of disclosure.
In this day and age there is no excuse. What I went through nearly killed me, it also put such a strain on my relationship that I nearly ended up killing my partner on more than one occasion, as he wasn’t listening either and after eleven years of living together we have split up. Part of that reason was because we were left to face a difficult situation on our own, no one offered us support.
In this day and age there is no reason for consultants not to take the holistic approach when it comes to HIV. I’ve been robbed of something that I’ll never get back and that’s time. For the past six years I’ve only had 18 months where everything was going all right and my life hasn’t been going along like some clapped out banger that keeps stalling every hundred yards.
THT was put together for helping people with HIV, how about some support for people who have ended up with complications because of HIV medication. Living with diabetes is no walk in the park because out of the two I’d say diabetes is more deadly than HIV if things aren’t handled right when it comes to medication. The medication might be suppressing the virus, but if a consultant doesn’t weigh up the situation properly and the diabetes gets out of control then that in it’s self will have an in direct effect on the HIV.
There’s also the psychological side of it to being diabetic as well especially when things go wrong and it’s not your fault. How do you get back on track after something like this without any support?
Isn’t it about time someone started to bridge the gap between these different services and pulling together especially now we are living longer with HIV and anti-virals. Though my problem has nothing to do with being on anti virals long term.
There’s a generation coming up that already have diabetes how many of them will end up HIV and have to learn how to cope with two chronic illnesses and there’s no one to support them!
All so the rules need to be changed when it comes to HIV and diabetes or D.I.D. as I call it (Drug Induced Diabetes) because getting DID through antivirals is a totally different ball game.
