Does anyone have knowledge of 'reactive diabetes'?

[UKMoss]

Have not been checking in for awhile. My health was detetiating from August 2021. I was told that my lupus is not active but I have something call 'reactive diabetes' and my C-peptide is anbnormal. To me this seems worse that the SLE. Lupus came with unexpected, constant pain. This comes with eating every 2 hours, ringing in my head, faigue and a general state of unwellness. Does anyone haave knowledge of 'reactive diabetes'?

[Blearyeyed]

I have heard of reactive hypoglycemia ( postprandial hypoglycemia) which involves the body continuing to make too much insulin after a big meal and so the body swings into low blood sugar. That causes the sort of symptoms you discuss and often involves changing your diet and eating smaller , less carb rich , portions every two to three hours.

The diet change reduces the low blood sugar swings and the dizziness, fatigue , aching and brain fog symptoms that you can get with most types of diabetes.

Some people suffer with hypoglycemia long term , and some people can have a temporary reactive form triggered by drugs or certain illnesses and infections. It can be well controlled but I understand when you first experience these symptoms it can feel very scary.

I haven't heard of Reactive Diabetes except as an alternative way of describing this type of hypoglycemia , my husband is a Type 1 Diabetic and I have relatives with Type 2 and a very rare Type 3 so although I have a lot of experience of many types of diabetes I am not sure if there is another reactive form I haven't come across.

The condition often involves making diet life changes and moderating your eating habits in the hope that the condition will be reversed without long term use of medication much like other conditions like Prediabetes or Type 2 Diabetes. There is a possibility that some people might call either of these conditions reactive as well but usually only to describe why the condition happened and how the symptoms occur rather than it being the correct name for them.

An abnormal C-peptide result is an indicator that your body is making too much insulin at that current time and can be a sign , reactive hypoglycemia or the potential of insulin resistance occurring in the body which can be a cause of Type 2 diabetes.

The hope is that through a strict diet regime , and sometimes with tablet medication that these three conditions can be treated and rectified so that you can return to a healthier but more normal eating pattern with no need for additional medical support.

If you have any of these conditions in the long term they are often well controlled with a tablet medication , sugar monitoring and a healthy diet plan and exercise.

You may benefit from asking other people on the Lupus site if they have it and what their experience was , or checking into one of the Diabetes forums on HU and asking for more help and advice from there.

Take care and try and stay as calm as you can and hopefully your symptoms will be under control and this will be resolved very soon.

[UKMoss in reply to Blearyeyed]

Thank you so much for your quick respond. You are correct -- it is reactive hypoglycemia. The symptoms you described are exactly what I am experiencing. It is good to know that there is hope in that it can be treated.

At present, I feel I have been given a death sentence as it is difficult to find the right food to eat and it is a task to have to eat every two hours.

I was put on Metformin to reduce the sugar spikes and the sudden drop of the sugar levels. It seens to have corrected the spikes, however, the 500 mg lowers the sugar to a level that I feel shaky and is left with hardly any energy. There is no day that I am well.

My diet consists of oatmeal and eggs with walnuts and blueberries in the morning. I wake up to 3 breakfasts --one at 6 am, 8 am and 10 am -- to satisfy the every two-hour hunger. I have very little carbs on my plate during the day because I am afraid that the Metformin will lower the sugar too much. I take in more veggies and protein. Snacks are rare as I do not know what snacks are filling. It is truly frustrating.

I am appreciate that you gave me reason to endure this new illness.

[DorsetLady PMRGCAuk volunteer in reply to UKMoss]

Have you looked at the diabetes site - diabetes.co.uk/food-and-rec...

[Blearyeyed in reply to UKMoss]

Have you been given the phone number to your local Diabetic Unit or Nurse?

I really think you should use it and tell them what is happening , giving them a food diary of what you have eaten.

You may find that you need to make some adjustments in your diet or they might want to make an adjustment in your dose of Metformin.

You may even find that they will be able to explain to you what snacks you are allowed or you may be allowed a little more carbohydrate than you are getting , but your diary of food each day will be essential for them to help you do that.

What you and your Diabetic Care Team are aiming for is to create a plan that stops the symptoms but also keeps you feeling fit and healthy enough to live your full life everyday.

When you get a new diet plan that works for you it will feel less scary to cope with day to day.

Many people get feelings like yourself when their eating pattern has to change dramatically because our emotions are so closely linked to our experience with food.

If you still aren't getting the benefit in feeling better from your new diet it can make you feel very deflated.

So , keeping regular contact with your unit will be really important to get things right.

The Diabetic links that Dorset lady has given you are really good and worth a read , but at first you might need more help knowing which of the menus you can try on them , so definitely speak to your nurse or contact Diabetic UK sites or the forums with an email or post and ask for a little more guidance specific to you.

Don't feel like it's just you . Most people whom get some form of Diabetes feel like this when they have to make their changes. If we can help give you the mental support to get through it we will , take care , Bee x

[UKMoss in reply to Blearyeyed]

Thank you so much. This has really been helpful. I live in The Bahamas but am now with an endocrinologist through telemedicine. Blood work is being done to get to the root of it. It is hope she will also assist with a diet plan. I will also follow your suggestion of using other duabetic groups. Thank you

[DorsetLady PMRGCAuk volunteer]

Have a look at this - diabetes.co.uk/reactive-hyp...

..and maybe the diabetes forums on here -

healthunlocked.com/united-d...

healthunlocked.com/drwfdiab...

[PMRpro Ambassador]

I have never heard of reactive diabetes - and like Blearyeyed, I wonder if you mean reactive hypoglycaemia?

mayoclinic.org/diseases-con...