Just like a rollercoaster, my health has had ups and downs over the last 28 years.
Kalydeco has helped my lungs significantly; my FEV1 has been stable at close to 70% for one year and I have only had IVs once in the last year, a 20 year record.
However I noticed that my energy levels have not matched my new lung function. My energy levels have improved, but not to the same extent that I have heard about with others on Kalydeco. Although I have been attending university much more often, and completing subjects unlike last year, I have struggled to keep up at times. In particular I have often felt tired in the afternoons and evenings.
I assumed this was normal CF tiredness. I think I’ve been tired since about 2008. This seems normal to me, I really cannot understand people who jump out of bed in the morning. And who aren’t tired. To me this seems very abnormal.
I came back from South America and my lungs were slightly below my new baseline of 70%. We decided it was time for my first IVs for two reasons 1) I had dropped slightly to 66% and 2) I still have pseudomonas in my lungs and have not had IVs yet, so it made sense to try IVs to get my lungs in the best possible shape.
I decided it would also be a smart idea to monitor my blood sugar levels. I have had impaired glucose tolerance since 2001, with OGTTs between 11 and 15. This means I have been pre-diabetic for about 12 years. For the last few years my self monitored blood sugar levels were 8-9 after meals on average and insulin was not needed. I am supposed to monitor these sporadically and generally have done this when on IVs.
After monitoring my blood sugar levels for a few weeks, I noticed they are higher now. I am about 10-12 on average after a reasonable size meal. Below about 8 is normal. I noticed that when I am high (above about 9), I feel tired. Sometimes I also had a headache. I realised that this potentially fits with what has been happening all year, I have often felt tired after lunch and dinner, and in April-May I had frequent headaches late evening.
I had another OGTT and this time it was 22. I felt terrible, first I was high, very tired, and basically could not function and use my laptop. Then 5 hours later I was down at 2.4 and felt terrible as I was really low. This is reactive hypoglycemia, with CF diabetes my insulin response is delayed, so I often get high and then low. I first felt reactive hypoglycemia in 2006.
So how does this relate to the rollercoaster? Well I feel that my lungs have been pretty much ‘fixed’ for now. I hoped that CF diabetes might be avoided (along with other CF complications) now that I’m on Kalydeco. Sadly this has not happened, and it appears that the CF diabetes has been having a pretty significant impact on my energy levels. I have just started taking insulin, I am hoping this will help.
Kalydeco & Cystic Fibrosis Diabetes:
My doctor mentioned that they had heard that blood sugar levels could vary more once on Kalydeco. I looked back through my named patient program information and found that it was suggested that close monitoring of blood sugar levels was needed, as high and low blood sugar levels can occur. I have heard anecdotally that some people have needed to increase their insulin dose after starting Kalydeco or that their blood sugar levels have increased. However, I have also read a recent article that suggests that Kalydeco may help increase the amount of insulin (and hence decrease the blood sugar levels). At this stage this is based on a very small study, it will be interesting to see the results of larger studies. In my case I was in the pre-diabetic category for many years, so it is not surprising that I am now diabetic. I hope those who start at a young age/before significant damage can avoid these types of complications.
- Recent research suggests almost half of those with CF will develop diabetes by age 30.
- Recent research also suggests that few people with CF have normal glucose metabolism. It is thought that all CF patients with pancreatic insufficiency have a degree of endocrine insufficiency (ie decreased insulin), however many CFs still have near normal glucose metabolism as their pancreas can compensate.