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reactive hypoglycemia -- causes and treatments?

sensing progress

Senior Member
Messages
296
Location
Tucson, AZ
Saw this mentioned in the X Rx blog:

"She started Actos for hypoglycemia shortly before starting antiretrovirals and it was immediately helpful."

What is Actos? I thought it was a diabetes drug. It's helpful for hypoglycemia too?
 

Mithriel

Senior Member
Messages
690
Location
Scotland
Stay away from Actos !!!!!!

Actos and Avandia are a class of drugs called TZD which are heavily marketed for diabetes drugs. They work by taking bone stem cells and making them form fat cells which then store sugar so reducing the amount of sugar in the blood.

Unfortunately, this leads to permanent weight gain and osteoporosis.

Also one paper concluded
the only adverse finding was a doubled risk of heart failure

Mithriel
 

sensing progress

Senior Member
Messages
296
Location
Tucson, AZ
More on Actos from Jamie Deckoff-Jones' blog:

Actos addresses several problems seen commonly in this patient population. My daughter's antiretroviral trial was preceded by the addition of Actos. I knew that we were mucking up the experiment, but she was having horrible reactive hypoglycemia, even with severe sugar restriction, and needed an intervention at that point. As it turns out, she had no problems getting on the drugs at all, which seems to be an exception, so I am wondering if the Actos assisted with the cytokine flare that seems to occur when starting the drugs. It activates PPARγ, decreasing insulin resistance, inhibiting VEGF, dropping levels of certain cytokines.

I contacted Jamie and she writes that "[Actos] affected her hypoglycemia positively almost immediately. She can now eat normally." (!!!!)

This is HUGE news to me! Reactive hypoglycemia is one of my worst symptoms relating to ME/CFS. Has anyone else tried Actos??
 

aquariusgirl

Senior Member
Messages
1,732
I have reactive hypoglycemia and it is driving me crazy. Very hard to control blood sugar regardless of dietary adjustments...
 

Mithriel

Senior Member
Messages
690
Location
Scotland
I had terrible hypoglycaemia, everything was worked out round when I had to eat.

I am now diabetic and take metformin. I no longer have such bad hypoglycaemia. I do not know why.

A recent diabetic blog said "Every day you hear about more and more bad side effects from drugs and then there is metformin ....."

Metformin has been used for a long time, appears safe and is being used for more and more conditions.

Actos is heavily marketed to doctors and the side effects down played.

Mithriel
 
Messages
78
Here's what I've tried:

Atkins diet (phase 1) which is extremely low in carbohydrates: This works amazingly well. You feel terrible for the first 4 days or so then suddenly feel great. You cannot cheat even with one crumb of bread. It only works if you give up caffeine as well. After about 7 months I started going nuts becuse you have to restrict many vegetables and have no fruit at all, which means you must take heaps of nutritional supplements. I am not convinced this can ever be as good as a varied diet.

countrygirl said:
I found hypoglycemia to be a major problem and would become suddenly close to collapse as a result. After many years, I have solved the problem very successfully by following a very low carbohydrate diet. It miraculously and rapidly cured both my bloating problems as well as the hypoglycemic attacks. I have found no other way of keeping it under control, but by diet, I'm afraid.

Hypoglycemia is driving me crazy.
I had a glucose tolerance test where my blood sugar dropped to 26 after 2 hours and I lost consciousness, suffering also post exertional malaise for three weeks after.
I have like dozen of drop a day and everything I do, the body compensates to make me feel worse.

For example if I don't eat often I get lows in between meals, if I eat often then I get more lows in a lesser space of time. If I eat every three hours I get a low after two hours. If I eat every hour I get a low after 30 minutes.

Another example: when I eat in the morning I have more drops the all day. But in the late evening and night I feel better, my sugar is more balanced and I don't have lows. So I tried to not to eat in the morning or eat only meat and veggies before 4 pm. And what happens is that then I get lows and huge drops late evening and at night too.

Whatever I do my body makes up for it, as in an attempt to prevent any balanced blood sugar.

Low-carb and Atkins didn't work for me.
I usually become neurotic with restless legs while on such diet.
I tried many times, following them for 2-3 weeks but no adaptation occurred.
I felt more and more sad without a reason and more fatigued than usual.
It's actually seems my body is not good at creating energy from proteins or fats, eating 1 pounds of meat gives me no energy at all to me and it feels like fasting.

The weird thing is that the low-carb diet improves the "reactive" aspect of hypoglycemia, so that I seem to get lows less as a reaction to what I eat.
But on the other hand the "hypoglycemia" itself gets worse. It's like as if low-carb diets turns momentarily my "reactive hypoglycemia" into a "fasting hyoglycemia" or "chronic hypoglycemia".

Anyway, without a source of sugar, even after the so called adaptation period, my mood sucks and CFS is bad enough without adding in the inability to laught, be self-ironic and smile.

Eating whole food (like whole grains, whole bread and whole pasta) doesn't work for me. Whole stuff and grains have a lot worse effect on my blood sugar than white flour. Indeed they have an higher glycemic load. Also I don't tolerate foods that have liquid with them; so soups and broths don't work for me. Maybe the liquid makes the sugar absorption faster.

I tried the Paleo diet but didn't work.
What worked a little was the Zone diet although I couldn't tolerate the "mathematical restrictions" and it was very hard to compile a meal.
Maybe a variation of the Zone diet would work.

Another good resource is "Life Without Bread"
The author suggests 70 grams of carbs per day from whatever source including chocolate bars.
He shows graphics of glucose tolerance tests of people with reactive hypoglycemia, to show how the hypoglycemia disappeared after 1 month on the diet.

I actually seems to tolerate things like eggs, lasagna, pasta, meat pie, hamburgers, breaded meat, sausages, ravioli.
What I don't tolerate is lean meat, expecially game meat or lean steak as they have an identical effect as a high-sugar dessert to me, soups and broths, beans (unfortunately) fruits (except small pieces or few strawberries or grapes) high-volume veggies as when my stomach is filled with fibers it feels like I ate something low-fat and high-sugar (in fact a big meal has the same effect on an high-sugar meal to me, I read it's called the "chinese restaurant effect") dried fruits, oats (old fashioned, the food that scored the highest of any food in raising my blood sugar) corn (corn has a terrible effect on me)
 

sensing progress

Senior Member
Messages
296
Location
Tucson, AZ
any more suggestions for this?

I take a small dose beta blocker for POTS, and that also seems to help with lessening the heart palpitations I get from the adrenaline surge with a hypoglycemic reaction. still only treating a symptom and not the underlying cause though. I asked on the Hunter Hopkins facebook page about hypoglycemia sometime back and Dr. Black responded that "it's probably a manifestation of the endocrine disruptions seen in CFS". She didn't seem to have any treatment ideas unfortunately.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
. The odd thing is that Ive read that this reaction usually occurs about 2.5 hours after eating. In my case it happens within 45 minutes of eating anything with high fructose corn syrup. I dont get this reaction with any other sweetener (or to other things containing fructose for that matter). Like everything with this illness a mystery.

Forbin.. I have issues with too much insulin and hypoglycemia. I can get a severe reaction as early 15-20mins after food, I think due to the insulin spike.
 

sensing progress

Senior Member
Messages
296
Location
Tucson, AZ
Forbin.. I have issues with too much insulin and hypoglycemia. I can get a severe reaction as early 15-20mins after food, I think due to the insulin spike.

Yes, same here. My hypoglycemic reactions can come on in just a few minutes. The amount of time before it occurs varies quite a bit for me.
 
Messages
1
Thank god for forums and another penny drop's in my understanding in the confusions of CFS and my test results etc.
Last 3 Doctors and i quote; "never seen these type of results in an O.G.T.Test", "hmm yes thats strange", "well this last test i did was normal" end of story..... So as one does I found out what the fluctuating results in B.S.levels and results could mean myself, and that (eventually and after much frustration) led me to the knowledge of Reactive Hypoglycemia existance.
This website below on R.H is great for the basic facts (though not related to CFS, thats too much info for my past and present Dr to digest grrrr) and it even has a letter that you can print out and give to your dr...another quote, but from this website is..."What to Say to Your Doctor & How to Approach Your Doctor"
"Most doctors have a problem understanding Reactive Hypoglycemia and this frustrates them. For this reason Im including a letter to the doctor that you should download and which should help you get a satisfactory response from your doctor"
Anyway its great to understand now, and via this forum that this "issue" too, seems to be relative in CFS etc, thanks everybody for sharing this info and helping me "get it" even if my Dr's arn't... x

http://[URL="http://www.hypoglycemia.asn.au/articles/testing_hypoglycemia.html"][/URL]
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I finally got a glucose monitor today as a pharmacist had previously told me that the levels my sugar was dropping too were dangerous and that it should be being monitored. It had a $40 company rebate so only had to pay a bit and my health insurance fortunately will pay the rest of it.

I saw my specialist and also found out that an episode i had in which i got dysphoria (went so high it was like i was on illegal drugs), then collapsed then went into seizure like symptoms resulting in an ambulance being called (but i refused to let them take me to hospital so they carried me out to the building and to a car to be taken home) was probably a severe hypoglycemic attack as that can be the pattern serious ones often can follow.
 

Gavman

Senior Member
Messages
316
Location
Sydney
My question is, did anyone have troubles with fructose before they got CFS/ME? I could never handle fruit. And had chocolate addiction from an early age.
 

sensing progress

Senior Member
Messages
296
Location
Tucson, AZ
My question is, did anyone have troubles with fructose before they got CFS/ME? I could never handle fruit. And had chocolate addiction from an early age.

Hmm, good question. I probably had hypoglycemia to some degree before getting ME/CFS. But I believe it's gotten a lot worse since. I used to be able to tolerate chocolate and now I can't tolerate it at all.
 
Messages
50
Location
australia
I have suffered hypoglycaemia for years and it has gradually gotten worse over time. My doctor suggested I try his super energy breakfast that has a low GI and therefore slowly releases energy throughout the day. He swears it works for him and I have found it has solved my issues with hypoglycaemia. This is the recipe:

- oat bran, rice bran, barley bran, flaxseed, linseed, pepito's, sunflower seeds, walnuts, hazelnuts, almonds, dried blueberries or cranberries.

- put a packet of each in a large container, mix it around.

- serve with milk in cereal bowl

Hope it work's for someone else!!!
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
My question is, did anyone have troubles with fructose before they got CFS/ME? I could never handle fruit. And had chocolate addiction from an early age.

Not that im aware of.. I thou never was tested for any insulin issue or hypoglycemia before I got sick and as far as i know, i had no issue back then with foods. My food issues with carbs came in after many years of having ME. (thou i did have a preexisting condition which could of caused such issues before then).
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I have suffered hypoglycaemia for years and it has gradually gotten worse over time. My doctor suggested I try his super energy breakfast that has a low GI and therefore slowly releases energy throughout the day. He swears it works for him and I have found it has solved my issues with hypoglycaemia. This is the recipe:

- oat bran, rice bran, barley bran, flaxseed, linseed, pepito's, sunflower seeds, walnuts, hazelnuts, almonds, dried blueberries or cranberries.

- put a packet of each in a large container, mix it around.

- serve with milk in cereal bowl

Hope it work's for someone else!!!

Probably help some but not all with this issue. I have an issue with the complex carbs giving me reactive hypoglycemia too. Things like milk (milk has lactose) , nuts and grains all put sugar levels up and then cause my insulin to spike.. then leading to hypoglycemia. I have to keep my milk restricted and my specialists who are treating me for this issue have put a limit of only 10 nuts a day upon me to try to avoid insulin spikes which lead to hypoglycemia.

One of the best breakfasts for ones who suffer from bad hypoglycemia is protein.. lots of protein at breakfast eg a couple of eggs with some steak (no grains) .. low carb veg can be added to this. This will avoid any carb spikes and the breakfast helps set one up for the rest of day.
 

Tulip

Guest
Messages
437
I have found that following the paleo diet has helped my hypogylcemia bigtime. No grains, legumes, starchy carbs, milk, sugar, caffeine and processed foods. Paleo is recommended to people with type 1 diabetes, type 2 diabetes and those with insulin resistance. There are several studies that back this up.