So it has been a few years since my gastric sleeve weight loss surgery. How am I going?
About 18 months after the surgery, I started getting some strange symptoms that would come and go. It was maddening.
The symptoms increased and became more debilitating, and my weight started to creep back on.
Over a year, I did every test under the sun with my GP, trying to pin down whether it was “just the pandemic”, or my vitamin levels or something else.
One day, in the middle of an episode, I had a nudge to dig out my blood glucometer that had been gathering dust when my type 2 diabetes had disappeared along with the 3/4 of my stomach during the surgery.
I hit Dr Google and found I was having a sugar low. My blood sugar was hovering at 2.6. I found something sweet in the cupboard, and 15 minutes later, my blood sugar returned to normal … until about an hour later when the symptoms kicked in again.
After a lot more Googling, I suspected I had post-bariatric reactive hypoglycemia (or hypoglycaemia for us Aussies) – called PBH for short.
I started taking my blood sugar levels every hour I was awake, recording it to track what was happening, and matching it to the timing of my symptoms.
What I found was about 90 minutes after eating or drinking, my blood sugars would crash to a greater or lesser degree depending on what I ate or drank, and the symptoms would kick in.
What are the symptoms of post-bariatric reactive hypoglycaemia?
I had all the textbook symptoms.
- heart palpitations/irregular heartbeat/heart racing
- feeling very shaky
- irritable (my kids tell me I lose my non-swearing filter and become “bitey”)
- blurry eyes
- hungry (feeling like I could eat through my pantry)
- brain fog/forgetting words
- sleep problems (waking at 2 am is very common – many people get hypos when they sleep)
- feeling weak
- fainting (yay!)
Luckily I have not gone to the coma or seizures stage, but that is also possible.
These were not gentle little blips – they are debilitating and have a huge impact on day to day life.
Over to the specialists
I saw my GP with my records, and she agreed with my thinking. She referred me to an endocrinologist who ran yet more tests and agreed with the diagnosis.
By this stage, I was having multiple crashes a day and could no longer drive (which, given my fierce independence, was a challenge).
Mild crashes would see me mentally and physically wiped for a few hours until I could have a nap. Bigger crashes or repeated crashes would wipe me out for days.
I had to run my business and work around brain fog and generally would have only 1-2 “good” hours a day when everything was firing as it used to do, followed by blah for the rest of the day.
The endocrinologist referred me to a dietician specialising in PBH to work on food triggers and solutions.
A non-medical summary of post-bariatric hypoglycaemia is either late-stage dumping or insulin resistance (hyperinsulinemia), where your body can’t regulate insulin correctly in your body.
Most patients with post-bariatric hypoglycaemia present within 1-5 years of surgery. Some have symptoms within a few months, and some many years later.
Those with a gastric bypass are more likely to have PBH, (about 40% of all bypass patients will get it by some estimates), although increasing numbers of people who have been sleeved are coming forward with symptoms (between 20-30%).
Symptoms typically appear 1-3 hours after a meal and improve when food/drink with glucose is taken.
There are a few key differences between PBH and diabetic reactive hypos.
- With PBH, your sugars can go from ordinary to crash within 15-30 minutes. It is darn fast!
- Just having glucose will put you on a merry-go-round of crashes. You need a sugar hit to quickly get back to normal levels and then a protein hit to stabilise your levels.
- Each person is unique. What works for one may not work for another, so each potential solution has to be tested and adjusted.
- What works today may not work tomorrow. You can eat and drink the same thing day after day, and your sugar levels will still vary each day. You have to adjust to whatever your body is doing that particular day.
Now the bad news if you have a gastric sleeve: If you have PBH, you have it for life,
Some surgeons have reversed gastric bypasses, which resolves PBH in 50-75% of patients (but they gain their weight back). You can’t reverse a sleeve.
The first treatment they try is dietary modification. For me, this started with having to give up all sugar in my teas and coffees and all alcohol. It made no difference.
I then saw a correlation between my sugar levels and my teas and coffees. Despite my endo and dietician being insistent that caffeine should make no difference, I tried giving up all caffeinated drinks (so only decaf coffee and tea). Given that I am a web designer/writer, my life was fueled by caffeine, so losing it was confronting.
It made a difference, but not enough.
I then was moved to a very low carb and sugar diet. Think brown, seedy, and lumpy, which seems to be translated in most manufacturers minds to linseed with everything (not great if you hate the taste of linseed).
If diet modification doesn’t work, there are only a handful of medications you can try, all with nasty side effects (you tend to live “that” scene from Blazing Saddles 24/7).
By this stage, I had depression and anxiety starting to kick in (not knowing if you can safely drive to the corner store or book a client meeting will do that to you).
With my GP’s OK, I went back on St John’s Wort to help manage those issues. Interestingly, a tiny handful of clinical studies show St John’s Wort can suppress the insulin response, but not enough research has been done to prove its effectiveness for PBH.
Many people with PBH have to wear Dexcom or Libre sugar alert monitors to alert them to sugar falls. These are insanely expensive each month (each sensor lasts 14 days and cost over $100 a sensor) and often come with their own problems.
I am heading down the Dexcom path now as nothing is working to stabilise my sugars.
I am still in the care of my GP and specialists as we constantly tweak and adjust things, and my weight has stabilised again at 20kg over my lowest weight point.
My eyes have deteriorated dramatically in 12 months and I struggle to shop or garden without support.
In some PBH cases, people need assistance dogs to alert them and keep them safe, and the people are so debilitated that they can no longer work in paid employment.
On a plus, there are some clinical trials underway in the USA looking at new treatment options, but these are still few and far between.
There is also a brilliant Facebook support group, Post Bariatric Hypoglycemia, that has people worldwide sharing their experiences and tips as they try to work through their response to the challenges. It contains loads of helpful info and support if you are newly diagnosed.
Would I have the weight loss surgery again?
Simple answer – HELL NO! That is why I have deleted my original post extolling the virtues of surgery. If I had my time again I would not go through with the surgery.
Yes, it made a vast initial difference to my weight and life, but even with all my pre-surgery research, I was unaware that PBH was a potential risk.
My life consists of tablets, brown and lumpy food, constant exhaustion and needing care to manage day to day life. I just feel into the unlucky 20-30%.
All I can advise is that like all surgery, be careful to understand the potential risks and benefits, and discuss everything with your family and loved ones before going ahead.