Overcoming foh: fear of hypoglycemia

Type 1 and LADA
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WRITTEN BY: Daniela Rojas and Mariana Gómez

Severe hypoglycemia — How do we overcome fears we might have?

Recently, our community was surprised by the tragic news of the death of a minor after an episode of severe nocturnal hypoglycemia. Of course, those of us who live with T1D and our caregivers were not only surprised but were also emotionally affected. Many families approached health professionals from different areas trying to find answers so that patients do not feel as though they have to live with fear.

Currently, we know that hypoglycemia unawareness causes more deaths than we are willing to talk about. Today, we want to talk to you about it because we seek to ease the emotional burden in our community.

First, what is hypoglycemia?

Hypoglycemia is a blood glucose level below 70 mg/dl or 3.9 millimoles per liter (mmol/L), and we know that it is caused by too much insulin or too little sugar in the body. If untreated, hypoglycemia can cause seizures, loss of consciousness and even death.

The American Diabetes Association divides hypoglycemia by levels:

– Level 1: Blood glucose value of 70 mg/dL or less

– Level 2: Blood glucose value of 54 mg/dl which is considered low enough to indicate clinically relevant hypoglycemia

– Level 3: Severe hypoglycemia, refers to hypoglycemia where there is cognitive disability that requires help from a third party for recovery

What is recurrent hypoglycemia?

Recurrent hypoglycemia, as the name implies, refers to several (frequent) episodes of hypoglycemia. This could be defined as two to more than four episodes of hypoglycemia per week. This frequency, according to studies carried out by different health professionals, can lead to hypoglycemia unawareness.

What is hypoglycemia unawareness?

This is our biggest concern recently. Hypoglycemia unawareness refers to the lack or loss of symptoms when there is a low blood glucose level. A severe hypoglycemia episode can be very serious. By not detecting the early symptoms of hypoglycemia, a person may have severe symptoms when there is a really low blood glucose level and therefore they may have seizures and loss of consciousness in many cases. Today we know that the years in the evolution of T1D could be a factor for the development of severe hypoglycemia, but we also know that the frequency of moderate hypoglycemia may be another cause.

What is fear of hypoglycemia?

Today, there are several instruments to measure your fear of hypoglycemia (FOH). There are some questionnaires and other instruments created so that any mental health professional can evaluate this among patients. Why do we want to evaluate it? We see today that the fear of hypoglycemia can be one of the barriers to better glycemic management. Some patients will prefer to keep high blood glucose levels in order to avoid hypoglycemia. As we already know, high blood glucose levels increase the risk of developing complications.

From fears to highs

The fear of developing complications from elevated blood glucose levels is a risk factor for hypoglycemia. People try to maintain low blood glucose levels and these levels are detected when they are at the very low limits.

What can we do?

  1. Evaluating emotional health. Of course, fear is normal and many of us will experience fear. But will fear prevent you from reaching your glycemic management goals? Will fear interfere with your decision making? Do you feel anxiety and does this feeling burst out and affect your daily activities when trying to manage your condition? Seek help from a mental health professional, work on a plan together. Don’t wait too long to seek out and receive the help you need. This doesn’t only apply to those who live with T1D, it also applies to those who care for others with T1D – parents, siblings and partners.
  2. Intervention and emotional health. There is a great need at the emotional level and for people who work in that area, this often leads to fear and if its diverse symptoms are not recognized in a timely manner, this ends up only feeding the fear. We must work hard on improving these programs and incorporating assistance for emotional health.
  3. Technologies for T1D management. We are aware that not everyone can have access to the best systems or technology for T1D management, but some tools – especially continuous glucose monitoring devices – can provide information that in some cases may even save our lives. Even the analysis of capillary glucose monitoring data can help us make fine adjustments to keep our glucose in range for as long as possible and thus avoid episodes of severe hypoglycemia.
  4. Review of knowledge: It is important to eliminate sources of error. Let’s review our knowledge regarding decision-making. We should analyze our carbohydrate counting and insulin dosing skills in order to reduce factors that could interfere with our care and lead to hypoglycemia.

Although the lack of access to technology for continuous glucose monitoring may be a great burden, several studies show that the use of intensified treatments – and by intensified we mean the use of different basal doses – and with a supply of insulin 24 hours a day, the risk of hypoglycemia also increases.

On the other

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I’ve often wondered how many people have been killed by police in a hypo state of mind.

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Solutions: low carb/small insulin boluses, get a CGM. Otherwise, test a lot, test before exercising, during extended exercise, before driving, before bed, etc,etc.

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I agree with Dave except for the fact that after being on a 30 carbs a day diet for 11 years, I now realize that a low fat vegan diet works just as well for excellent control with few bouts of hypoglycemia
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Marilyn Type 1 for 60 yrs no neuropathy of any kind.

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I can’t do vegan myself. :slight_smile:

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The only thing I really miss is bread, but can’t eat that on a strict low carb or low fat plant based diet.

Believe it or not, the body adjusts to a low fat plant based diet. I love being able to eat lots of fruit again.

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I eat fruit! And I have a big salad nearly every day. For a year I stopped eating all the “white” stuff but have resumed some bread (at least I’m no longer baking awesome fresh bread which is impossible to resist).

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Can you share what you eat? What do you not eat? I think if given a choice I would choose vegan low fat over low carb.

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I submit for your consideration, Level 4 Hypoglycemia: I tested at 71 and thought I ought to eat a little something just to make sure I don’t go any lower. But next thing I know, I ate everything in the fridge and end up at 400+.

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Hi Jaymie, I eat lots of legumes, sweet potatoes, white potatoes, lentils, all kinds of fruit and vegetables, garbanzo bean chocolate chip cookies, rice, seeds, banana ice cream.

Absolutely no oil of any kind. No dairy, no meat.

See Mastering Diabetes if you are interested in low fat plant based eating for people with diabetes. If you want to lose weight, you will. I eat 300 carbs daily on 23 units of insulin. I make no insulin since after 60 yrs of this illness my beta cells are shot.

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I’ve been guilty of doing just that. A few times. OK! More than a few times. COUNTLESS times! :slight_smile:

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No matter how many times I fingerstick, or look at my pump/cgm, I will always be afraid of the next big hypo. If and when that day comes I hope I survive the seizures and the aftermath. Until that day comes I am very comfortable running 150 or so and having my A1c be 7-7.5 regardless of additional tangential health problems. It’s about choices - fear vs quality of life.

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Done this many times. I use 1/2 of energy gel (Hammer)for 30 and a whole pack for 75 points.

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Testing frequently is important. Crazy that insurance/Medicare limits the number of test strips.

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I can REALLY relate to this topic! I was DXed (incorrectly) T2 in my early to mid thirties. I should have known better. I went through the “honeymoon” period taking metformin and glyburide but was scared to death of the possibility that I would need insulin in the future. You see, my Dad had been T1 or LADA since I was a small child. He would have severe hypo events and usually my Mom would help him recover treating the low with OJ or Insta-Glucose Gel. She would call the event an “Insulin Reaction”. This was just the beginning of my growing fear. My Dad was very big on exercise, especially long distance bicycling. He would some times not be able to take in enough carbs while exercising and would go low. He eventually developed Hypoglycemia Unawareness. This led to some terrifying hypo events or “Insulin reactions” as my Mom called them. When in my mid teen years, I remember being woke from a sound sleep at around 2 or 3am hearing my Mom calling my name in near panic. I’d rush into their bedroom and see my Dad having seizures from a severe hypoglycemic event. I would pick up the phone and call 911. Then my Mom would get out the Glucagon kit and I would help her mix it and give him an injection. The paramedics would show up and usually start an IV just about the time that he was starting to come around. This happened to many times. So, when my own honeymoon period came to an end, I took to long to admit that I needed insulin and stopped seeing doctors. This, denial on my part probably did quite a bit of permanent damage to my health. In my early 40s I finally started talking to doctors again and was correctly diagnosed as LADA. I started MDI with Humalog and Lantus. Unfortunately, some complications had already started to take their toll. I have diabetic peripheral nephropathy. I am also very “brittle”. Control has been very difficult. To avoid the hypo events that I fear so much, I preferred to stay on the high side of 150 sometimes over 200 or 300 for extended periods. When I did go low, I found it very hard to resist eating everything in the fridge. Last May, 2018, I started seeing a new endocrinologist and she got me started on the Minimed 670G insulin pump. This thing has been a life changer! I have struggled and still do struggle with all of the shortcomings that many on this forum have noted with the 670g. But, my overall control is WAY better! Last May, my A1C was 9.5. Last month, (Feb. 2019) my A1C was 6.9!! The CGM does a good job of warning me before I go low. I am much less tempted to eat everything in the fridge because the severe hypo event is headed off before it develops. I’m looking forward to seeing and maybe trying the next new technology that comes about. Whether it comes from Medtronic or a competitor. My FOH is not gone, but I feel I’m getting a handle on it. I do want to avoid hypoglycemia unawareness as long as possible. It was the unawareness that made it necessary to have my Dads drivers license taken away permanently. That was very hard for him and the rest of us who loved him to go through.

Greg

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Hi @GregS you and I have very similar experiences, except mine was slightly more in line with your Dad’s. I was diagnosed T2 early mid 30s with results that didn’t support T2 longterm. Re-diagnosed LADA early 50s and things are much much better. My advice to you is don’t fear insulin, embrace it. Learn all you can about how it affects you specifically (everyone is slightly different) and work that to your advantage. There are many many good threads on insulin management here.

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This too was my worst fear when I started using insulin. A few years before I was also diagnosed with T1, I had to inject my son to bring him out of a coma. As the ambulance arrived, he opened his eyes and wanted to go to work because it was his double overtime pay shift. He ended up spending a day in hospital.

I too resisted insulin and tried to control BGL by diet and exercise but within 6 months I was recording readings of over 30 mmol/L (540 mg/dL).

After starting insulin, it was not long before I had my first hypo. I was in a chemist shop after a dentist appointment when the symptoms started. I was sure I was going to pass out.

Since that day I have had countless hypos and say I am not working hard enough if I don’t have a hypo a day.

Although my hypo awareness is low at 2.8 mmol/L it has not changed in the 10 years and counting since being diagnosed. It is unusual for me to have a BGL of 2.2 mmol/L and all readings under 2.0 mmol/L were due to misadventure.

I too suffered from peripheral neuropathy which was due to fluctuating BGL and being in the hyper zone too long. Tighter control solved the problem and I still have good feeling in my feet.

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Want to go on the 3 day fishing trip. Scared cause all that rock and roll of the boat probably burn the sugar down faster plus being up to 100 miles out away from medical help and I would not want to inform the crew watch out if I get sick on the trip and be looked at different.

I have noticed regular busy activity such as cleaning stuff up will burn down my sugar faster sometimes then weightlifting at the gym.

37 is my lowest number since this started and that was after a bottle of wine or about 5 glasses.

I would love to have 2 of those continuous monitor monitors redundant systems.

Why don’t they invent a continuous monitor that injects sugar if you go to low ? I can’t be the first to think of that.

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There is a insulin pump that does that in development but it probably won’t come to market for a few more years.

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Thank you for this. I am going to spend some time reading this. The major problem from hypoglycemia in terms of causing death is it can cause your heart to stop. I have had sugars so low that the machine just says LO.