Apparently I'm Complicated!

[Sam McCrae]

Hi, I'm new here and recently been diagnosed with RH, but apparently I'm complicated, so treatment is going to be difficult.

So I had Gastric Bypass in November 2015, but I also have significant pancreatic atrophy, that makes me Creon dependant with severe Exocrine Pancreatic Insufficiency. My Bariatric Team have put this down to me having Alpha-1 Antitrypsin Deficiency (ZZ genotype), which has damaged my pancreas and kidneys. I also have Small Intestinal Bacterial Overgrowth and Bile Salt Malabsorption, both in the very severe ranges, which effectively makes Acarbose contraindicated for me.

The other complication is that my RH occurs with any food, it doesn't have to be carbs and also any food, small amounts or not, can give me pain and diarrhoea. This makes small, frequent meals totally impractical for me, as I work full time and cannot spend all day in the toilet.

With all this in mind, we have decided to give Acarbose a try and if it turns out to be too dreadful, I will try another medication. If anyone else has any other brilliant ideas, I would be very happy to hear them.

 

[Brunneria]

Hi and welcome! (And Merry Xmas )

That sounds like a complex situation.

can I ask if your RH pre-dated the bypass? Or arrived as a consequence of surgery?
I have read that RH can arrive following such surgery, but don’t know how prevalent it is.

 

[Sam McCrae]

Hi.

I didn’t get it until after surgery, but I also didn’t get my pancreas issues until after surgery either. It can be common to get RH following Bypass, but they seem to want to blame mine on my pancreas, although I don’t know if they can really know

 

[Lamont D]

Hi, I'm new here and recently been diagnosed with RH, but apparently I'm complicated, so treatment is going to be difficult.

So I had Gastric Bypass in November 2015, but I also have significant pancreatic atrophy, that makes me Creon dependant with severe Exocrine Pancreatic Insufficiency. My Bariatric Team have put this down to me having Alpha-1 Antitrypsin Deficiency (ZZ genotype), which has damaged my pancreas and kidneys. I also have Small Intestinal Bacterial Overgrowth and Bile Salt Malabsorption, both in the very severe ranges, which effectively makes Acarbose contraindicated for me.

The other complication is that my RH occurs with any food, it doesn't have to be carbs and also any food, small amounts or not, can give me pain and diarrhoea. This makes small, frequent meals totally impractical for me, as I work full time and cannot spend all day in the toilet.

With all this in mind, we have decided to give Acarbose a try and if it turns out to be too dreadful, I will try another medication. If anyone else has any other brilliant ideas, I would be very happy to hear them.

Hi @Sam McCrae,
Welcome to our forum.

Yes, you are complicated!
By the way, I've been called weird by a few doctors, so we have that in common!
Having RH is not simple, nor is it something that can be ignored.

My first response is to listen to your medical team regarding your problem with your pancreatic conditions. I don't have to say that they have the full picture of how much that effects your day to day life.

I can only use my experience with Hypoglycaemia and the cause of going hypo.
Mine is different because I have not had the operation.
I have developed RH, more less naturally.
With gastric bypass, you get gastric dumping, the small intestine, produces the glucose, too much at once, so the pancreas will try to correct this by creating more insulin. This causes the hypo. How the pancreatic conditions you have vary the amount of insulin produces, I have no idea!

It is the usual starting treatment, to eat small meals every time three hours to prevent the continuous hypos, the usual dietary advice is to eat carbs with every meal but that is old advice, I have to avoid carbs as much as possible. And it works!
Control is important, control will help with symptoms.
How you can find that control, is with going on a journey of trying all your dietary intake and which foods trigger the symptoms and hypoglycaemic episodes.
I spent a few months using a food diary, trying all my favourite foods, different combinations and recording everything, carb counting, portion size, testing and experimentation.
Until you understand what is going on, you won't know what foods you are intolerant to.
For example, my worst carbs are potatoes, white bread, lager, then there are others like rice, pasta and so on, I just don't eat them!
It's easier not to, then have to worry about what the reaction will be!

We have had quite a few people diagnosed with RH, and there doctors have tried acerbose, to help with carbs intake, I don't believe it has ever been successful, simply because eating carbs is usually the trigger, so the drug will not stop the rollercoaster ride of fluctuating blood glucose levels, only slow it a little bit, and the after effects are pretty dreadful.

I have been living with RH for many years, over six from diagnosis, and the only way I have found that is a real treatment is by avoiding the trigger, so you don't go hypo. I have not had a hypo since just after diagnosis, it was my last eOGTT.
Since then, my specialist endocrinologist has dismissed me, because I have recovered from my hypo hell and got my life back!

There is a lot of useful information on the forum.

Keep asking questions.

Best wishes