Diabetes Complications

Diabetes on steroids

Back in October, I had a steroid injection in my hip. And yes, it drove my glucose levels bananas! For those of you who may not be aware of it, steroids are one of the medications that truly mess up glucose numbers for lots and lots of people.  The ultimate craziness only lasted two to three days but the residual crazy lingered a couple of weeks.

Here’s a little of the backstory behind why I got a steroid injection.

I have been complaining about my right hip for some time and I finally did something about it in September 2016. I went to my GP. He referred me to my physiotherapist and we did some “process of elimination” exercises. They didn't work. So then I went for an MRI and was referred to a rheumatologist.

At least now, we think I know what is wrong with my hip! It would seem both my physiotherapist and my rheumatologist agree that I have bursitis. And my rheumatologist injected steroids to reduce the swelling. If you have diabetes and you have steroids that plays absolute havoc with blood glucose.

However, no one could tell me how many days, weeks, months the glucose madness would go on for and how severe it would be.

Here is my experience of what happened to my glucose levels.

Prior to my injection my diabetes management was going fairly well with just the usual ups and downs. I had the shot mid morning and my glucose levels didn’t feel the effect of the injection until after lunch. But after lunch my numbers remained in the high teens until the early hours of the next morning. On day two, I noticed that if I increase my mealtime insulin significantly more than usual it would keep them in check. However, if I forgot to make the increase then I struggled to bring my numbers back down for hours.

Then the effect of the steroid started to wane slowly over the next two weeks and I had the opposite problem: trying to keep my glucose levels above hypo level. I adjusted insulin doses slowly and only making one or two changes at a time to bring them back to my normal diabetes levels (?!?!).

I was grateful that not only was I aware that this would more than likely happen but that both my endocrinologist, rheumatologist and physiotherapist reminded me it would. I'm probably going to have another dose in January but now, at least, I have a good idea of what to expect.

My life with diabetes this week

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It’s been a busy week in my diabetes world and before I launch into it I would like to disclose an event I am attending this weekend. I do a lot of volunteering in the diabetes blog space, advocating space, diabetes event organising etc. Because of the volunteering I do, I was asked if I would allow my name to go into a hat to select the Irish representative to attend Abbott’s European Diabetes Exchange forum (‘dX’) which is being held in Amsterdam, Netherlands from Friday 16th June through to Sunday 18th June.

And because of luck, my name was the one that came out of that hat.

The mission of dX is to create a place where bloggers from all over Europe can meet and exchange ideas in a fun and engaging way, and discuss matters that affect the diabetes community. This is the third year of this event and the theme is focusing on the importance of people with diabetes achieving their dreams:

DREAM BEYOND: YOU’VE GOT THE POWER!

I am very excited about attending this conference to meet other diabetes bloggers and advocates from all over Europe. I’ve already connected with some of the them through twitter. But also I’m excited because unlike other company blogger events the agenda for this one is about helping us become better at what we do without it costing our own personal health. This is something I have struggle with for a couple of years now.

Abbott are paying for my flights and accommodation but all thoughts and opinions will be my own. I will be tweeting, probably not much though, using the hashtag #dXAmsterdam2017 and I will have lots of news to share with you in upcoming blog posts and of course, I will be very interested to hear how the Freestyle Libre is doing in Europe.

And now for my week in diabetes....

 

FOCUS GROUPS

Last week, I was asking myself “why am I volunteering for something else that I CLEARLY don’t have much spare time for?” as I found myself getting up at a not so reasonable hour in the morning to catch a train to Dublin to attend a HSE Focus Group session.

I had asked myself several times why I was going, and was I really a good representative as a health service user? What was I really going to get out of it?

Well, it turns out it was really interesting, really informative and I really, really hope that we have helped shape our health service for the better.

And focus groups work well because people are gathered in a room away from distractions. The information shared in a group like this just can’t be captured on online surveys, emails, or instant messages. So much information came from sharing our experiences, but so much more information came from listening to others and comparing our experiences. It was eye opening! We may live in an online world but some things cannot replace having face to face contact.

“You really don’t know, what you don’t know” from the Dunning Kruger Effect.

 

MY LIFE WITH TYPE 1 DIABETES WITH AN INFECTION

My diabetes related story comes from the train journey to attend this focus group meeting. People with diabetes are susceptible to more infections than people who do not have diabetes because bacteria LOVES glucose!! I’m sure that's the scientific reason.

As I write this post I am uncomfortably aware that my husband's aunt reads my posts religiously and I may be over sharing.

I don’t often travel by train but the universe aligned and it made more sense for me to train it on this occasion rather than drive. And it was so much nicer! Plus, I could do some writing while i travelled. Bonus!

About an hour from Dublin, I felt a little bit off, a bit flushed and some chills. I felt a certain twinge that I needed to go to the bathroom. And when I did I realised that a full blown UTI was flaring up. And it caused me to double up in pain. Thankfully, it was a spasm and eased. I sat in my seat trying to weigh up whether I should turn around and travel home on the next train or trying to manage the situation for the 4 hours I was going to be in Dublin.

I decided that I would push on as I had had worse UTI’s and adopt a wait and see attitude.

I used to get UTI’s a lot, like a couple of times a year. And they would just suddenly go from zero to horrific in an hour. They also, ALWAYS seem to happen outside of GP surgery hours, which meant a trip to the out of hours GP service in the middle of the night and scrounging for antibiotics.

Thankfully they're not as frequent now and I seem to be able to keep them from becoming horrific all of a sudden with over the counter treatments. Except for this day where I'm trapped on a train, in a room with strangers, stealing everyone else's water, legging it to the bathroom at every break. The worst part of the trip home was the transfer to a 30 minute journey in a carriage where the toilet was out of order. It was excruciating! I want to thank the lady who sat opposite me and kept me distracted.

Once home I have a supply of over the counter treatment which started to work immediately and thankfully I’m recovered. And AMAZINGLY my glucose levels didn't seem too out of whack during this infection.

Til the next one…. :-(

Diabetes 1 Now Study

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Last week was completely mental for me. Definitely not the life of a stay at home parent and way too  exciting. Wednesday, a bunch of us diabetes advocates went to Leinster House to meet with our TD’s and Senators. This is the equivalent of meeting with congress in the US, kindof. I won’t go into detail here but if you're interested in what happened I posted about it here on Thriveabetes last Tuesday.

Thursday was the complete opposite, live moving from a developing country to a developed one. One day, I was asking government to approve the funding needed to improve our diabetes services, the next, I was in the world of research and science. Not a world I’m very comfortable in but I learned a lot about peer support and specifically this research project that Prof Sean Dinneen is leading on how to create a programme for young adults living with type 1 diabetes called D1 Now Study.

“This event was to provide a forum, lead by a diverse group of keynote speakers including Young Adult with T1D, for sharing experiences and developing ideas around the management of t1d during the challenging years of young adulthood.”

It was a jam-packed day with lots of international studies talked about from around the world about type 1 diabetes and their findings.

From The Role of Family in Supporting the Young Adult with Diabetes by Clea DeBrun Johansen from Denmark Diabetes Academy.

Among this study’s findings were that “The influence of the family continues to be very prominent during emerging adulthood, especially the college years.” Her study also concluded that; - Parents play an important, yet complex, role for emerging adults with type 1 diabetes. - Parents can contribute positively to diabetes self-care and psychological well being. - Parents can also negatively influence life with diabetes for emerging adults (absence, disinterest in diabetes, acting in a controlling manner).Interview Findings Emerging adults do not want to be too dependent on their parents - they want parents to be available when needed.

Clea ended with this quote but I would argue that you can do diabetes alone but nobody wants to.

You can't do diabetes alone

Next up was Barbara Johnson who discussed WICKED, a new diabetes education programme in Sheffield. This has to be the coolest name for diabetes education. EVER!

Workin with Insulin, Carbs, Ketones and Exercise to manage Diabetes.

Prior to developing WICKED, Sheffield realised that young adults were taking responsibility for their diabetes often when changes are happening - starting work, moving away to uni, drinking alcohol, having sex and that they may not have received education targeted at them before. They asked for education that was relevant to them.

Will Hadfield from King's College Hospital, London, told us about their Transition Clinics for adolescents with diabetes.

His description sounded very much like an afterschool club with peer activities organised by the patients. He also mentioned that a large number of young adults don’t want to received anything diabetes related in their social media feeds. I can understand that they want to keep at least one zone or area of their lives free of diabetes. I have some of those too.

Sarah Simkin from Jigsaw Galway gave a very enlightening talk about how their

A Service Designed by Service Users.

From the design and layout of the building to how the service would be delivered. They really adopted the “Nothing about us, without us” motto that has been circulating for a couple of years and they owned it.

Young Adults with Diabetes Panel (YAP)

Then we heard from the first of two young adults with diabetes who are involved in the D1 Now study. Monica Mullins, a student in Galway, told of how she became a member of the Young Adult Panel (YAP) and the training they received to become researchers. There was a lot of training and it does make them more effective in the research but now I feel that they have altered their typical YA with diabetes demographic, making them not so typical now. Maybe an an additional YAP is needed so that they research team learn to communicate with them.

Our second voice of diabetes, Liam McMorrow designed a survey on “Understanding Young Adults preferences for Diabetes Clinic care”. It was really interesting and I had a couple of questions about his fantastic questionnaire but there wasn’t enough time to answer many questions.

CHOICE

Last but not least was David Chaney who is the National Director of Diabetes UK Northern Ireland and the only other Irish person I met at the Friend for Life Diabetes Conference in America last summer. David, with diabetes teams across Northern Ireland, developed CHOICE, (carbohydrate and insulin collaborative education). CHOICE is a structured education programme for children and young people with diabetes (aged 0-19 years) and their parents / carers.

I don’t think there is a parent of a child with diabetes in Ireland who does not know about CHOICE. David took us on the journey of how CHOICE came to be and how it has developed and adapted to meet the needs of children and young people with diabetes.

He told us that when a child is diagnosed with diabetes all the education is directed towards the parents, so when a child transitions into the adolescent and young adult service we expect them to have absorbed all that information by osmosis. Barbara Johnson earlier reinforced this point. David believes, as many of us do, that diabetes education is the cornerstone to good diabetes management.

We are kind of putting our young adults with diabetes into the driving seat of their diabetes without giving them a few lessons and a bit of theory. But, you wouldn’t put a person in the driving seat without giving them a few lessons and a bit of theory first. Then as their confidence grows the diabetes team backs away but if there whenever they are needed. CHOICE is teaching adolescents and young adults to drive their own diabetes. David also provide The Best Slide of the conference in my opinion. “If HCPs don’t provide diabetes education, others will” Diabetes Educators?

I did get a little frustrated and “irked” about half way through the conference because it was starting to feel like I was being talked about while in the room but not being included in the conversation. Maybe I needed some YAP training to fully participate? Again, it’s not a world I’m very familiar with so maybe that was it? I also wasn't able to attend the Hackathon that followed the Conference. And I am looking forward to seeing where the research goes and how it develops.

On a personal note the stress of travelling across the country, plus trying to find "volunteers" to look after my children had left the building, along with the high blood glucose numbers:-)

The Blood Sugar Train Wreck

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This train wreck started with a decision to skip the spud at dinner, in my opinion. We were having Chicken Maryland and so there was enough carb on the breading to double my usual dinner carb count and I decided to forego the mash potato.new doc 86_1 This middle/2nd dip below the blue line in my photo opposite shows the low blood sugar after dinner.

I, mostly, eat low to moderate carbs to help maintain good blood glucose management. It’s a decision that I made for myself and I would never try to make it for anyone else.

Having said that, the real, real reason I skipped the spud was to have an ice cream. :-S It was a Saturday and I like to have a special treat on the weekends. Being a stay at home mum, it kind of lets me know there is something different between weekdays and the weekends.

I feel like I’m digging a bigger hole for myself here!

Anyway, here comes the second questionable decision. My blood sugars plummeted after dinner and I was so SICK TO DEATH of eating glucose tablets that I opted for chocolate and jellies instead. I know! I know! Not the smartest idea. (Another big hole) I can’t even use the fact that my hypo was affecting rational decision making because it didn’t.

Lots of jellies!

Ok, now the predictable happen. ↑↑ Yep, blood sugars doing the opposite of plummeting, which eventually lead to rage bolusing because insulin does NOT work as fast as I would like it too.

Next up, the rocket train down again. At this point, I took 5 glucose tablets, I usually only take 2-3, to make sure it was well and truly taken care of and that I would not wake up again before I was suppose to.

There is no lesson in this post. I'm just frustrated!!!

But I survived! I learned! And I shall not beat myself up over it:-)

Diabetes Summit & Future Health Summit Dublin

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I am extremely honoured to have been selected as a patient speaker at the upcoming Diabetes Summit which is part of the Future Health Summit on Friday 27th May. The Future Health Summit runs over two days, May 26th and 27th, in Dublin’s Citywest Convention Centre. The Future Health Summit is actually a series of 15 separate summits covering areas such as mental health, medtech, oncology, wellbeing at work, clinical leadership, diabetes, ehealth, and homecare.

The Summit director David Neville expects 1,500 delegates to attend. There are seven patient forums, more than 100 speakers, over 120 exhibitors, and 15 separate summits being run. He also says “The conference is focused on how we care, what we eat and how we live”.

I will be participating in the Diabetes Summit, which is chaired by the Clinical lead of the National Clinical Programme for Diabetes and Consultant Endocrinologist, Dr. Ronan Canavan and co-chaired by Dr. Anna Clarke, Health Promotion and Research Manager with the Diabetes Ireland.

My fellow panel will include;

Future Health Summit Diabetes agendaDr Neil Black, Endocrinology & Diabetes Physician, and Lead Clinician, Electronic Care Record Implementation in Northern Ireland.

Prof Philip Home-Professor of Diabetes Medicine, Newcastle University. Former Chairman of the International Diabetes Federation (Europe). In 2009 he was Programme Chair for the IDF World Diabetes Congress in Montreal.

Professor Gerald Tomkin - Director of the Diabetes Institute of Ireland at Beacon & Endocrinologist, former president of the Irish Endocrine Society, the Irish Hyperlipidaemia assoc.s. Former Chairman, and now President of the Diabetes Federation of Ireland.

Dr Richard Lee Kin-Specialist Periodontist. He is founder of the Mint Clinic in Adelaide Rd., Dublin 2, dealing exclusively with the management and treatment of gum disease in adults and children .

And of course, me, Grainne Flynn-Patient Speaker.

With a panel discussion with all speakers chaired by Dr Eva Orsmond and Prof. Donal O'Shea.  No intro explanation needed for either of those. There is more information on the schedule.

 

Patient Workshops

There are also patient workshops taking place on Friday 27th May, one in particular of interest is the “Living with Diabetes- Personal Empowerment, Information, Choice and Ownership”. Speakers for this workshop include;

11.15 am  – “Living Well with Diabetes, A Personal Experience  – 10 Keys Tips”. Kate Gajewska who is a health psychologist, lives with type 1 diabetes and is a scholar in Population Health & Health Service Research – SPHeRE Programme

12.00     “Making Best Use of Your Professional Diabetes Review”  Prof. Seamus Sreenan, Consultant Endocrinologist at Connolly Hospital and Medical Director of Diabetes Ireland.

Professor Seamus Sreenan will advise individuals to better prepare for their hospital appointments and maximise the benefit of that appointment for the person with diabetes.  Professor  Sreenan is Clinical Director, 3U Partnership, Consultant Endocrinologist at Connolly Hospital and Medical Director of Diabetes Ireland.

Both presentations will be followed by a question and answer session.

 

When you book this event, your ticket gives you access to the open talks at the Summit  (tickets priced at €539). Admission to the workshop is €10 registration fee for members, or €40 to include 2016 membership of Diabetes Ireland. To register call  Diabetes Ireland on  1850 909 909.

Now I have to take care of a "Procrastination Monkey" by rounding up the "Panic Monster". This very entertaining video will explain more:-)

Ketone - Scary or Not Scary?

**** I am not a health care professional nor do I have anything that looks remotely like a medical degree. So take anything I say with a pinch of salt.

For this piece I have combined information I found on;  Diabetes Daily written By Ginger Vieira on January 4th, 2016, from Beyond Type 1 WRITTEN BY: Kyla Schmieg, BSN, RN and from The Type 1 Diabetes Network Australia Type 1 Diabetes Starter Kit

When I was diagnosed in 1993, I don’t remember hearing the word ketone back then. In fact, I don’t think I hear it until the early 2,000’s. Remember, diabetes education didn’t exist in Ireland before then - not to my recollection anyway.

In my 23 years with type 1 diabetes I have never tested for ketones. Firstly I don't often get sick. And secondly, when I’m sick I take all the recommended actions that deal with both being sick and flushing out ketones.

Ketone StixHowever, I hear a lot of talk about ketones and began to think that, maybe, I'm a bit too relaxed about them and need to know a bit more.

So, first, what is a ketone?

When our body can’t access glucose, it looks to burn fat for energy. Burning fat results in ketones.   

“Ketones build up can lead to Diabetic Ketoacidosis (DKA). Signs of DKA include nausea, vomiting, abdominal pain, fruity or acetone (think nail polish remover) breath, rapid breathing, flushed skin, and lack of energy.“ http://beyondtype1.org/ketones-the-6-must-knows/

Why are they so scary?

Ketones usually build up in a person with diabetes if they do not have enough insulin taken and can be fatal.

If ketones happen “too much too fast, it is not natural and it’s important to understand that ‘normally’ produced ketones are very different from ketones that develop due to insulin deficiency.

Moderate or large amounts of ketones in your body are very dangerous. They upset the chemical balance of the blood and lead to a condition called diabetic ketoacidosis or DKA. Some people also experience fast and heavy breathing and exaggerated beating of their heart. It is scary! If you experience DKA, you need to go to hospital to be rehydrated and monitored while the ketones in your body reduce to a safe level.

Many people with type 1 diabetes have never had an episode of ketoacidosis, but you may have already experienced DKA during diagnosis. Unfortunately, DKA is life threatening, so you need to understand what it is and what to look out for.” (from the Type 1 Diabetes Network’s Starter Kit page 37)

OK, I’ve got it so far.

This much is easy to follow but when I started hearing about the different type of ketones that were I got a bit lost. Especially when I heard that you can have ketone when you are not sick and have normal blood sugar levels. Until I did this research, I didn’t know if that was a “freak-out” or “not-to-freaky-out” situation.

Different types of ketones.

Illness-Induced Ketones

Illness-induced ketones can be very dangerous for a person with any type of diabetes. People with diabetes who are sick, especially with an infection, a stomach bug, or the flu should always test their ketones while they are sick.

A mild illness can cause low level ketones that are usually not life-threatening or severely serious. If ketones are at low levels, the general suggestion is to consume plenty of fluids and talk to your healthcare team about increasing your background insulin doses.

Even if your blood sugars appear in-range but you are producing ketones when sick, an increase in background insulin can help eliminate the ketones without dropping one’s blood sugar.

On the other hand, a person with diabetes, who is vomiting repeatedly will almost always need to get to the ER as quickly as possible. Vomiting, no matter the cause of the vomiting, will likely induce large ketones and can be life-threatening. Vomiting leads to severe dehydration which will escalate ketones further to a state of DKA.

Since severe ketosis will likely make a person extremely nauseas in addition to their illness-induced nausea, it can be nearly impossible to consume enough fluids at home to re-hydrate the body. An IV drip of saline at the hospital is essential to rehydrating the body, reducing or eliminating ketones, and stabilizing blood sugar levels.

Consult your healthcare team if you have concerns about your state of ketosis.

Starvation Ketones

Starvation ketones are simply the result of not eating enough food over the course of several hours. Both diabetics and non-diabetics can easily produce very low levels of ketones overnight, seeing a faint pink color on a urine ketone strip first thing in the morning. These are not dangerous unless, of course, this person continues to starve themselves.

Nutritional Ketones

Nutritional Ketosis is a state where the body is using ketones as a fuel source efficiently and safely. In individuals without diabetes or in those with controlled diabetes, having insulin on board to maintain healthy blood sugar levels keeps ketone production in the safe range.

This is achieved by reducing carbohydrate-intake to below 50 grams, because when glucose from food is limited, but blood sugars are still in a healthy range and enough insulin is present, the body will begin to burn body fat for fuel instead, producing low levels of ketones in the bloodstream.”

As long as blood sugars are maintained in the normal safe range with insulin, someone with diabetes can very safely be in Nutritional Ketosis.

When you’ve been in Nutritional Ketosis and not even known it:

  • when you skip breakfast and don’t eat until lunch or later, your body is burning body fat for fuel and likely producing low-levels of ketones
  • when babies are born, they are often in a state of nutritional ketosis for the first few days or week of life because they are consuming very little breast milk until the mother’s breast milk production ramps up
  • when you eat a low-carb meal (eggs and bacon) for breakfast and don’t eat again until late lunch or afternoon…or…when you eat a low-carb breakfast followed by a low-carb lunch, your body is producing a low level of ketones until you eat a more significant serving of carbohydrates at dinner, etc.

Can you get ketones with a high blood sugar?

Ketones typically accompany high blood sugar. Ketones indicate your body needs more insulin. Most often if your body needs more insulin, it means your probably have a high blood sugar. Also, when an illness is present, your body releases hormones in response to the stress. These hormones lead to elevated blood glucose. That is why it’s recommended to test ketone levels during illness.

Can you get ketones with a normal or low blood sugar?

Ketones can also be present when your blood sugar is normal or low. These are sometimes referred to as “starvation ketones” or “nutritional ketosis.” During an illness or extreme diet change, if you have a significant decrease in carb intake, this can lead to the body using fat for energy because there are not enough carbs present to burn. Your blood sugar could remain normal or even be low in this case but your body could still be producing ketones.

From; http://beyondtype1.org/ketones-the-6-must-knows/

Conclusion

My conclusion is that, like diabetes, ketones need to be treated seriously. They are not always scary but you need to know why, when and how. And remember, if in doubt call your D-team. A quick phone call equals peace of mind.

Sources of information about ketones;