It’s now a cliché to compare HIV disease to diabetes, but I’ve never heard a diabetologist say “It’s nothing to worry about: it’s just like having HIV really.” 

Recently, returning home from England, I ran into an old friend I hadn’t seen in twenty years in the tunnel between the platforms at Cardiff station: we had a short while to chat and I asked after her painful knee that she thought might be arthritic. When I commented on my diabetes, she made a comment about the “diseases of old age” to which I responded “No, high dose ritonavir, ddI and d4t”. Her reply: “Yep, that’ll do it.” Although my brother has diabetes type 1, that was physically induced (trauma to the digestive system of a young adult can result in the pancreas shutting down) when he lost half his stomach to an ulcer. I developed type 2 in the mid naughties. Otherwise there’s absolutely no family history of diabetes: we both acquired different versions of the disease.

In 1998 or so I started taking high dose ritonavir: within months my blood lipids were in the “high” bracket and I was warned that another possibility of taking ritonavir was diabetes. We’re in the early protease inhibitor zone here, when little was known of dosage, and we basically threw down our throats anything that we thought might keep us alive till the next, better drug came along. In time, my AZT was replaced with d4t and when I came off ritonavir (noticing how ill 800mg of the stuff per day had been making me feel) I started on the enteric coated version of ddI. It’s now known that these three drugs are the leading candidates for sending someone down Diabetes Street.

A number of the drugs we take are capable of start us down the path of metabolic disease (of which diabetes is only one). Coupled with the rarity of wasting syndrome, thanks to the better efficacy of today’s drugs, and the tendency of HIV disease now to make us gain weight (the gut is one of HIV’s favourite hang-outs), diabetes is a real concern for us. At a Long Term Survivors’ meeting not so long ago a third of us either had diabetes or were “pre-diabetic”.

It’s now a cliché to compare HIV disease to diabetes, but I’ve never heard a diabetologist say “It’s nothing to worry about: it’s just like having HIV really.” The fact is that one serious lifelong condition can result in the development of another serious lifelong condition. It’s just that having both HIV and diabetes needs a bit of extra care above and beyond what either condition alone needs.

I was lucky: when I was diagnosed with diabetes I was eating a locally grown wholefood diet: most of what I ate had only travelled forty or fifty miles in its entire existence. (My best friend was less lucky: when I told her I’d been diagnosed she wailed that she’d just bought me a giant jar of jelly beans as a Christmas present!). I didn’t eat much in the way of potatoes, preferred wholemeal bread over white and much preferred brown rice over white. The only changes to my diet were to switch to sweeteners and stop eating the best part of a pack of biscuits with a cup of tea. In my opinion, there’s nothing in the aspartame gives you cancer/brain tumours/ME stories.

It’s not just sugar: it’s any carbohydrate – they all get converted to glucose in the end. Since we’re constantly fighting an infection, I think it’s fair to say that we can afford to let our blood sugars go up a little higher than the 4 – 7 recommended level (I’m afraid I still use the old system of measuring blood glucose as I haven’t figured out the new one yet). That said, we still risk incurring systemic damage if our blood glucose is consistently above 10.

While DiabetesUK don’t appear to be terribly clued up about HIV, the recipes section of their website does contain some good stuff, including a section for people who, like me, prefer the low carb route to glucose control.

A recent trial seems to have shown a reversal of diabetes by eating a diet of only 600 calories a day. Personally, I’d call this dangerous for people with HIV, especially those of us who acquired our diabetes as a side effect of early HAART. 600 calories per day is the equivalent of just two bottles of the meal replacement/supplement fortisip. Fortisip is nutritionally complete except for the fact that it contains no fibre. It’s also 25% sugar – bad news for your glucose levels when trying to re-gain weight after illness.

If you’re suddenly informed that you have diabetes, and that it’s such that you need drug treatment for it, be aware that metformin has GI side effects (it’s not known as metfartin for nothing): gliclazide is the other “beginner’s” medication. Test your blood glucose several times per day, but especially before that first cup of tea in the morning, to get a sense of when your blood glucose is likely to be high and to get an idea of what varying blood glucose levels feel like. Keep Lucozade or energy drinks in the house in case of hypoglycaemia (a blood glucose reading below 4 is considered hypoglycaemic) – I keep a can of an energy dink in the living room, the kitchen and the bedroom.

Men may end up with diabetic neuropathy, which makes it harder to sustain (or even get) an erection. In Wales the NHS has a policy of proactively asking men with diabetes if they’re having problems in this area; I’m sorry I don’t know about the rest of the UK. Anyway, if you have erectile dysfunction (ED), they very generously allow you four viagra a month. The downside is if you have HIV you get the lowest dose because of interactions with HAART, especially protease inhibitors, so there’s little chance of breaking a pill in two for an extra shag. I’ve been known to have a hypo when sex has been, erm, vigorous, so I make sure that he (or they if I’m lucky) know where the drinks are and what they’re there for. When it’s happened the guy I was with has considered it a compliment that he could knock me into a hypo, so don’t be afraid of explaining beforehand.

Exercise helps keep the blood sugar down, but if you go running be sure to have glucose tablets or sweets with you, just in case you overdo it and start a hypo.

Blood glucose is one of the standard tests in the clinic visit. I’ve found it easier to test as soon as I get up which means I can give the clinic a fasting blood glucose reading and have something to eat before I head off to the clinic. A fasting blood glucose ready is a better indication of where your blood glucose is at than a reading when you’ve had breakfast or lunch. Besides there’s no way I’m getting a bus, a train and another bus without having had at least several cups of tea!

If a food is marked as “suitable for diabetics” check for the presence of sorbitol. As well as being a sweetener, it’s also a powerful laxative, as I found out having being given a box of diabetic chocolates for xmas one year. I made the decision to cut sugar from my diet as completely as I could – never had that much of a sweet tooth anyway – if you can’t give up jam on toast, just test a couple of hours after eating it to make sure your blood glucose has returned to your norm. If it’s still too high, spread more thinly next time!

Note that this is all from my own experience of living with HIV and diabetes and shouldn’t be taken as medical advice, but rather as peer advice.




  1. The comment I have on aspartame is how anyone can think it and many of the other so called sweeteners are sweeteners is beyond me. All I get is a really foul acrid taste. But I do love certain flavours – quinine in bitter lemon, whole lemons peeled and eaten like an orange. I could never understand whilst I was relishing my lemon others looked away and shuddered…

    I am fortunate in that my blood sugar on the old fashioned scale you use rarely goes over 4.5, but I do have to be careful as it does have a tendency to drop to lower levels…

    Given that most of my relatives were (mostly dead now) obese and in a few cases morbidly obese diabetes was fairly common in my family. So it is flagged up on my records and is monitored both by my GP’s and clinics. I think it is important to keep your GP in the loop because they do tend to have a more holistic view than specialist consultants


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