Preparing for Low Blood Sugar Episodes

[prettynewyorker]

Hi,

Can you guys please share how do you prepare for Low Blood Sugar Episodes?
I know it should rarely happens...but do you carry something on you to let others know you cannot have standard treatment (juice/candies) to treat low blood sugar?
And what do you use instead if it ever occurs? 
Is Glucolin powder the only safe treatment HFI can use?

Many Thanks!!!!

[colormist]

My purse is full of smarties and slim jims. If I catch the sugar drop early, I eat a couple slim jims. If I catch it later, I eat smarties AND slim jims. Neither of these things are 100% safe for HFIers, but it's better than being severely hypo.

If I happen to catch a sugar drop when I'm near a coffee shop, I order a latte (2% milk) and a small bag of chips. That tides me over for a couple hours.

And if I'm doing an activity (like hiking) I carry a full meal with me and make sure to stop halfway through to eat something (whether I'm hungry or not). Physical activity tends to make hypo set on WAY faster than just running chores.

I don't carry anything with me to indicate my condition, but that's probably a good idea. I just don't know how anyone might think to check it--outside of an EMT. I have become so hypo (really fast sugar drop within 10 minutes) during a hike that I had to sit down and eat something on the side of a cliff. Even while I was eating, my vision slowly disappeared. That was my scariest incident to date. I had a friend with me and I kept telling her what was happening. She kept me calm, but I was worried she would have to run for a helicopter to lift me out of the area. After 30 minutes or so, my vision returned and my blood sugar stabilized enough to finish the hike (much more slowly and without so much zeal).

It can be very scary, but I recommend keeping food with you at all times. Any shelf-stable foods that you like would work.

[tummyache]

I carry a little zip lock bag of nuts [plain almonds, walnuts, and Brazil nuts] in my purse at all times to nibble on, just a few* for quick energy, when I feel a bit low. Some HFIer's may have a problem with nuts...those Asian rice crackers work well, too.

I just looked up the sugars in the nuts [for 1 cup]:

  NUT         TOTAL       SUCROSE       GLUCOSE       FRUCTOSE       MALTOSE

almonds      6.8g            6513mg         55.2mg          0.0mg             193mg

walnuts       3.1g            2843mg         93.6mg          105.0mg          0.0mg

Brazilnuts    3.1g            3099mg         0.0mg            0.0mg             0.0mg

* a tipical snack : 1 brazil nut, 2-3 almonds + 2-3 1/2 walnuts. Remember, I am an adult, not a bity child -- for me, this a good snack, if I am going to eat soon afterwards.

[ukbill]

I cannot handle ANY sweet flavours (thank goodness, because so much so called safe glucose and dextrose is highly contaminated) If I am doing a heavy day on physical work or a posible long gap between safe foods (over 12 hours) I will take a milkshake with added cornflour.

That is a 50/50 mix of plain probiotic (any plain yogurt will do) Yogurt and milk with a couple of table spoons full of highly refined corn flour starch mixed in. This gives me an 8 hour blood sugar support which helps hold off any hypo events.

If going on a long hill walk I take sandwiches, hard boiled eggs, cheese, salami sticks and lots of water and tea! I can easily go Hypo if short of fluids.

I did a 10 hour walk up and down the highest mountain in Wales in May this year no problems at all! I had also piled in the protein the day before and had a massive "welsh" breakfast before heading off at 8.30am this all helped of course. The walk would have only taken 6 hours but we took a "short cut" on a different route down.. 4 hours of working through a massive bog and still had dry feet at the end !

I forgot to pack the cornflour so did not have a milkshake before this walk.

The cleaner your diet the less Hypos's you will get.

I do not know what Glucolin powder is... but I would avoid it myself.

[Katie535]

Colormist- are Slim Jim’s another name for pixi stix?

[colormist]

Ha! No. I've never thought to carry around pixy stix. They break so easily.



Slim Jims are meat sticks (very greasy and not very yummy at all). If you can find a safe jerky or safe meat stick (or make your own), I would recommend them over Slim Jims any day.

[gerri]

Wish I had taken your advise Colormist. I had change my diet around where I ate my big meal at lunch time. Yesterday I woke up really feeling funny (off). I hadn’t had a hypoglycaemic episode in so long that I am aware of - I sorta forgot. On the verge of passing out and my personal support worker arriving - She helped me grab some bacon and toast not the best - no smarties - thought if I just get some breakfast in me I would be alright - felt wee bit better - had more breakfast an hour later. Today I ate my breakfast earlier and my main meal a little later in the day. Now I have to contend with acid reflux - never win. Going out tomorrow get myself something for emergencies - so I don’t crash like I did yesterday. Also get new test strips to show how low my sugar has gotten - so I can act quicker to emerency dropping sugar level. My last AIC level was at 4.4 - normal here in Canada is 4 and 6.

Gerri

[jenn123]

Trader joe has come out with a new product that is a crunchy - moochi rice nuggets. They are my kids new go to. I always have her with homemade beefy jerky, crackers, potato chips, milk, laughing cow cheese, and smarties. As soon as she wakes up and before she goes to bed, i try to give her a glass of milk. She has only had one episode after a difficult workout in many months. Lots and lots of water.

[colormist]

Worst part with hypoglycemia is the brain fog. If your brain was functioning normally, you'd instantly know what was causing those weird feelings. I've grabbed a hot pan from the oven and 20 seconds later put my hand directly on a burner I had just turned off--all because I was hypoglycemic. I was so mad at myself for doing dumb things and not eating regularly.

Rice nuggets sound amazing! I wish I had a Trader Joe near me.

[ukbill]

Gerri are you confirmed HFI? if so then the effects you describe indicate a damaged liver.. This is not uncommon at all.

If this is the case then after about 6 months of a low Fructose diet you will suddenly start to feel much better and stronger by the day.

The reason I say this is because of the acid reflux and morning hypo which both point that way.

If you get a hypo in the night a milk shake made form 50 / 50 milk and yogurt (plain none sweetened) with added corn flour starch will support your blood sugar for a full 8 hours while you sleep.

The uncooked corn flour makes the "mouth feel" of the milk shake a little powdery in texture but has little to no adverse taste at all.

There is no hard and fast rules on how much corn flour starch to add start low and add a little more each time to get to a satisfactory level of support. Over doing it may result in you being very warm for about 8 hours.. or that is what happened to me when I over did the corn flour anyway.. but that might well be just me.

Do not have a hot drink just after drinking a cornflour milk shake.. I did this once and cooked the corn flour in my stomach.. I felt physically full for about 3 days until it had very very slowly digested!

I am not a doctor however or trained medical professional.

It seems there may be 32+ slightly different types of Fructosemia / HFI so being exact on this is hard for anyone.

I now have a meeting with Dr T Cox the UK's top research scientist who has looked into Fructosemia for the last 35 years, on the 6th November I will report back when I know more about the current situation with Fructosemia and what is known about the condition.

[gerri]

Aug 26, 2018 10:46:22 GMT -5 ukbill said:

Gerri are you confirmed HFI? if so then the effects you describe indicate a damaged liver.. This is not uncommon at all.  2nd time at trying to post.  Forgot to log in lol - I have been diagnosed with HFI - but gastroendocrinologist doesn’t want hospital to pay for genetic testing - so I am saving up myself to pay to have testing done.  A cousin was diagnosed as a baby.  My boys both adults have shown signs as well as to having HFI - as does my grandchildren - my DIL will not have them tested.   

If this is the case then after about 6 months of a low Fructose diet you will suddenly start to feel much better and stronger by the day.  When I was a baby premee - came home from hospital with jaundice - I was fed carnation milk with corn syrup - When my mother put me on whole milk, rice pablum - I showed improvement - but never great - had croup, pneumonia - constantly had ear infections - in first year of my life.   (When going to school - by weekend - I was sick - peanut butter jam or honey sandwich made me sick - holidays all the sweets made me sick) - so many earaches.  These ear infections have cause a life time of dealing with auditory processing disorder - Hyperacusis and Misophonia.   I am dealing with other autoimmune diseases.  HFI had caused severe damage to my body.  I believe the gastroindocrinologist was right to diagnose me with HFI - but too cheap to have hospital pay for genetic testing - he wanted to do an severely invasive liver biopsy first.  

In my 40s my liver enzymes were elevated - as I wasn’t a alcohol drinker or into drugs nothing further was done. Few years later- I went to see a gastroindocrinologist who suggest to me to have a gastro bypass done - I told her no way.  She had looked at me - seen my pregnant 15+ month stomach - diagnosed me with NASH - I told her I had been following her diet - that was eating my fruit and vegetables - nearly killed me.   She as much called me a liar.  I left her office and never went back.  I continued to cut things out of my diet - onions - garlic - fruits - etc  Then I came across the fructose malabsorption diet - felt better but not - then I crashed - thought I was dying.  Then I said to myself try going total HFI - within short period of time - I loss 60 pounds - liver enzymes were under control - NASH diagnoses dropped - I am feeling better - but now back to having hypoglycaemia.  I am 65 in March.  

I  have many allergies.  I am lactose intolerant - allergies to corn, wheat, eggs - anaphyaltic to sulfites - most drugs.  The milk shake sounds good - but must find a yogurt that is lactose, corn, wheat free and free from many other intolerances and allergies.  I make my own bread - have resorted to eating a slice of toast (made from teff/arrowroot/rice flour) at night hoping it works for me and no more morning hypoglycaemia.

[gerri]

Hope the above post can be read?  If not will change backto black and white.

[Stefanie (Ziba)]

"It seems there may be 32+ slightly different types of Fructosemia / HFI so being exact on this is hard for anyone."


UKBill, please tell me where you saw/heard this. Are all 32 types tested for with currently available genetic testing? If so, my son tested negative for ALDOB through both Whole Exome and individual ALDOB gene testing.

Re: the milkshake, I make a yogurt/goat milk/corn starch milk shake for my son, too. I do not put ice or blend in blender; I only mix these three ingredients with a fork in a cup. I use Stonyfield Organic Whole Milk Plain Yogurt, Myenberg Goat milk (so much easier to digest than cow) and Rumford non-GMO corn starch. It is the best "meal" for bedtime and for mornings. I also bought a dehydrator and made jerky successfully with thin london broil, marinated it in soy sauce 24 hours prior.

We are such a resourceful group! I love learning and hearing all your stories and tips. One day, doctors may understand Fructosemia as well as we patients and parents do.

[colormist]

I'm going to have to try these yogurt milkshakes. I would love something quick to eat in the the morning that doesn't need a follow up meal two hours later.

[rysmom14]

I make a "smoothie" for Ryan. its just yogurt and then thinned out with milk so he can drink it. I think I may try the corn starch. does anyone have a particular brand? and does the corn starch change the flavor at all?

Thanks!

[prettynewyoker]

Thanks guys!
Any thoughts about Tapioca Dextrose Powder as hypoglycemia treatment?

[ukbill]

Aug 28, 2018 9:41:35 GMT -5 Stefanie (Ziba) said:

"It seems there may be 32+ slightly different types of Fructosemia / HFI so being exact on this is hard for anyone."


UKBill, please tell me where you saw/heard this. Are all 32 types tested for with currently available genetic testing? If so, my son tested negative for ALDOB through both Whole Exome and individual ALDOB gene testing.

Re: the milkshake, I make a yogurt/goat milk/corn starch milk shake for my son, too. I do not put ice or blend in blender; I only mix these three ingredients with a fork in a cup. I use Stonyfield Organic Whole Milk Plain Yogurt, Myenberg Goat milk (so much easier to digest than cow) and Rumford non-GMO corn starch. It is the best "meal" for bedtime and for mornings. I also bought a dehydrator and made jerky successfully with thin london broil, marinated it in soy sauce 24 hours prior.

We are such a resourceful group! I love learning and hearing all your stories and tips. One day, doctors may understand Fructosemia as well as we patients and parents do.

It seems that there are 4 genes capable of encoding for aldolase B if the loss of any 2 can cause Fructosemia or a form of it then we can have possibly 4x4x4 variants of the condition (if I have done my maths right?) OK I just got 64.. I know one gene is likely to encode for the Aldolase B created in the kidneys.. which is a tiny amount.. so 32 is likely to be closer to the actual number I think.

To be honest this is a key question to put to Dr T Cox when I see him.

Certainly there is a massive variance between what some of us can eat and others not. This might explain why?

Getting medical professionals better informed is a key aim for the support group! Believe me I am working on that one

[ukbill]

Aug 29, 2018 14:54:21 GMT -5 prettynewyoker said:

Thanks guys!
Any thoughts about Tapioca Dextrose Powder as hypoglycemia treatment?

No sugar "cure" is advisable due to posible (almost certain in all Glucose products) contamination with Fructose. Better to stick to Milk, Lactose (if a pure sugar is needed), or safe starches like crackers made from wheat starch or corn starch with butter or similar hi food value item included.

I think I read somewhere on here that Lactose has a different metabolic pathway and is less affected by the blocking of gluconeogenesis by Fructose phosphate, so that should be the goto. A carton of milk (cow,goats, etc.. whatever is available) or plain Yogurt or a milkshake (yogurt/milk 50/50) with a little corn starch to support the blood sugar levels for some time after the event.

I hope this helps?

What is your interest in this if you do not mind me asking?

[ukbill]

Aug 28, 2018 13:58:40 GMT -5 rysmom14 said:

I make a "smoothie" for Ryan. its just yogurt and then thinned out with milk so he can drink it. I think I may try the corn starch. does anyone have a particular brand? and does the corn starch change the flavor at all?

Thanks!

It doesn't really change the flavour at all however it makes the milkshake a little powdery in mouth feel.. or very powdery if you over do the cornflour.. best start very small perhaps as little as 1 teaspoon full in a large glass then slowly increase it to avoid rejection as a result of mouth feel?

[ukbill]

Aug 20, 2018 8:40:00 GMT -5 tummyache said:

I carry a little zip lock bag of nuts [plain almonds, walnuts, and Brazil nuts] in my purse at all times to nibble on, just a few for quick energy, when I feel a bit low. Some HFIer's may have a problem with nuts...those Asian rice crackers work well, too.

I just looked up the sugars in the nuts [for 1 cup]:

  NUT         TOTAL       SUCROSE       GLUCOSE       FRUCTOSE       MALTOSE

almonds      6.8g            6513mg         55.2mg          0.0mg             193mg

walnuts       3.1g            2843mg         93.6mg          105.0mg          0.0mg

Brazilnuts    3.1g            3099mg         0.0mg            0.0mg             0.0mg




Sucrose is a disaccharide of Glucose and Fructose 50/50 so Almonds are really not safe.. not for a low fructose diet.. no nuts really are. I used to eat large amounts of sunflower seeds but then got sick from eating them.. I still love them but no more than a few teaspoons full a day.