Gilberts Syndrome & T1

Type 1 and LADA
1

As well as progressing very quickly, at the age of 56, to T1 diabetes, I was also diagnosed with Gilberts Syndrome; high Billirubin levels.

I know that paracetamol is a no no for me and could be toxic. Although my levels can be very high at times when I am working hard, I don’t present with yellowing of the whites of the eyes or the skin.

I can suffer from fatigue and take a long time to recover from sickness, suffer from abdomal pain, itching with no rash and can not tolerate much polyunsaturated fats or saturated fats.
The good side effect of high Billirubin levels is that it lowers your risk of coronary artery disease and future heart disease.

I have always had trouble with controlling BGL and I am asking if there are any T1 diabetics with Gilberts Syndrome who have a similar problem.

I am a MDI and have been advised not to use a pump. At times a casual walk when all of my Bolus insulin (NovoRapid) should be out of my system, can cause a fast falling Hypo which is hard to turn round.

I had two such events this last weekend; once driving a hire car, the other after walking 800 yards to get fish and chips.
Although my BGL was high when began to walk and in the normal range when I started eating the chips first, my level fell to 2.5mmol/L (45). A bottle of ginger beer, 50g of Carbs, brought me up to a safe level after 15 minutes.

Although I have asked my endo if high Billirubin levels could cause insulin by increasing the time NovoRapid remains active and his response was he did not think so.

Who else with Gilberts Syndrome, thinks that bolus insulin stays in there system much longer than what it should?

2

I don’t have Gilberts syndrome but when I was on Humalog I could not take a correction dose unless my BG was over 250 because the Humalog would stay in my system so long that many hours later I would suddenly go very low which of course led to higher A1Cs because I was avoiding correcting highs.

When I switched to Afrezza and Tresiba that problem went away. My BG’s stabilized and my A1C came down under 7 for the first time in my life. Getting a CGM has made it much easier as well but I’ve only had one for a few months and I managed to get my diabetes under control before I got my Libre.

3

Thanks for the reply Firenza and we all do have different experiences with insulin and I am finding out even although my HbA1c is stable and just below 7, there a lot of T1D who are in a similar situation and struggle to keep BGL stable on a daily basis.

I started with Lantus and Aprida about 9 years ago and both insulins did not suit me. I have recently retried Aprida, still with no success.

I use Levemir as a basal and have to change my daily am/pm split ratio along with my Levemir dosage according to my physical activity. For the same reasons, I would not be able to use Tresiba as it would stay in my system too long.

As a cane farmer, I some times have to set up irrigation pipes in the middle of the night. I found out very quickly that hypos would occur with very little exertion and well after 5 hours of my last NovoRapid injection.

I do not think Afrezza has been approved in Australia but I do know that some people with T1D are using it but paying for it out of their own pocket.

The ideal insulin for T1D would be a fast acting insulin that you inject but only lasts for 30 minutes.

My son who is a marine biologist but now is a professional mud crabber, was diagnosed with T1D at a young age. He also has similar problems with Hypos but uses Humalog along with Levemir.

I will be giving Humalog a trial when my lifestyle becomes less hectic.

I have had one trial with the Libre and found it very useful with trends but it is not subsidized in Australia.

4

Just curious why they recommend no pump? Do you want to use a pump?

A pump makes all the difference for me. I change settings frequently and without a pump it’s impossible to avoid daily highs and lows.

I don’t have the condition you do, but I do have other health conditions and they can definitely play into how difficult it is to control blood sugar.

5

I don’t have Gilberts Syndrome, either. I believe that the info published by the insulin maker with regard to duration of insulin action is a nominal value. It will not be exactly the same across the population using NovoRapid and duration can vary from dose to dose within the same person.

I think your best tool will be a glucose monitoring system of some sort. When you plan to be active, even near the end of nominal insulin duration, even getting a fingerstick will help you to pre-empt going too low.

I use a CGM and I know it’s expensive, especially if you need to pay for it fully out of pocket.

How many times per day do you get a finger-stick reading? The strips are available at reasonable prices online. Perhaps adding a few strategic readings during your day will help increase your safety. I performed 12-15 fingersticks per day for many years. I think it helps a lot with making timely adjustments. Good luck!

6

I have had Gilbert’s syndrome for at least 20 years. Great to hear it may reduce heart issues. I had not heard that before.

I have bilirubin tested every year, and it does fluctuate between slightly higher to a bit more higher. But there is nothing obvious in my diet or routines that correlate with the changes, and doctors have not been concerned about it. Have had T1 diabetes for 50+ years.

1 Like
7

Jen, apart of my income comes from professional net fishing. I use a 4.3 meter aluminum boat to run 180 meters of net in shallow water. I move the net 6 to 8 times in 6 hours and I can press myself onto the nose of the boat out of waist deep water. The apparatus I use, the environment I work in and how I get in the boat is not suited for a pump. (I am a grey nomad past the age of 65 but consider myself to be very fit.)

But the real reason is because I have too many hypo events, like last weekend, where I have my carbs /insulin correct, waited for the insulin to clear before physical activity, only to have a stubborn hypo which I have to over treat to raise BGL. At times with readings of 10 mmol/L, I can double my NovoRapid injection only to see my BGL keep rising only to fall fast when I become active.

When I was a regular gym junkie, I would have to take reading every 10 minutes to prevent BGL falling too fast. No amount of carbs eaten while at the gym could prevent my BGL from falling if my Glycogen reserves were low. I would also inject 2 units of NovoRapid as I left the gym to prevent the massive Hyper rebound, one hour after I had finished the workout.

I have had the same Endocrinologist since I was first diagnosed and he is very switched on. I know I’m his “Lab Rat” and he blames me for his loss of hair.

Without a background in sugar chemistry this diabetes would have done my head in along time ago.

I find it enlightening reading how people deal with this chronic disease and the suggestion they put forward.

When I am having a bad day I can make over 20 tests, Terry4. I am over 65 and classified as a pensioner in Australia so test strips are cheep, around $2.60 per 100. When I have a bad hypo event, like last weekend, I test every 5 minutes to make sure my BGL has turned around and keeps rising. Normally it takes 5 – 7 minutes to see a response after I treat a hypo.

I have tried the Libre and found the trends to be very helpful. But I found all other functions of the Libre to be very much lacking in accuracy and user friendly. Don’t get me wrong, I would defiantly use it if was not for the price. For one sensor I paid over $100 and the sensor only lasted 14 days to the minute. Even in the environment that I have to work in, I know that the sensor can be taped on so it is impossible to be knocked off and it still work when I get wet.

For me, I know the BGL trends are the major indicators that would help me greatly with the stabilization my daily BGL.

8

Thanks for the reply MM1.

My Bilirubin levels never fall into the normal range and also fluctuate but never into the extreme range. They are checked with every blood test, four times a year.

I also blame high Bilirubin levels for feeling like I have been run over by a truck after I have been working very hard for a few days. It takes me over two days to recover from such an event.