Sugars

** CAUTION *** I  do not know how any of this affects people with diabetes.  I am basing every thing on research about sugars and my porphyria needs.

We need glucose during an attack and to hold off an attack.  Well, that is a little simplistic, in that we all need glucose; but, most people without porphyria derive enough glucose from their diets, where we cannot.  Anyway, here is the result of my research into sugars:

Monosaccharides are simple, basic sugars:  glucose, fructose, galactose

Disaccharides are a combination of monosaccharides:  sucrose (table sugar) = glucose + fructose, lactose (milk sugar) = galactose + glucose, maltose = glucose + glucose.

Glucose (AKA dextrose) – this is the type sugar that powers our bodies; carbs and starches are broken down in our bodies to produce glucose.  When you eat glucose tablets, the glucose goes directly into your bloodstream.

Fructose – sometimes called fruit sugar.  Fructose is processed in your liver.  High levels of fructose act as a signal to the liver to store glycogen.  For people with porphyria, fructose should be avoided.   The problem with this is that most processed foods have high fructose corn syrup as an ingredient.

Honey contains both glucose & fructose as monosaccharides.  The crystals that form in honey as you cool it is glucose.

Where I get glucose:

Powdered glucose (dextrose).  I get this in large bags.  Here is the cheapest source that I’ve found.

http://www.amazon.com/Home-Brew-Dextrose-10lb-Bag/dp/B0013NJWKW/ref=sr_1_2?ie=UTF8&qid=1383244770&sr=8-2&keywords=dextrose+10+lbs

For tablets, I would prefer to get them at Publix, but, Target is cheaper.   Publix $5.99 for a 50 count jar; Target is $3.99 for the same thing.  No brainer.   I also carry around little tubes that hold 10 tablets; they are easier to fit in my pocket.

5 Responses to Sugars

  1. Caro says:

    Hi Greg,
    Sorry for asking again! I finally found the glucose powder, I was so happy but it made me feel very nauseous. I took it dissolved in water. Do you have any suggestions? Does everybody tolerate glucose? or should I mix it with something else?
    thanks for your help!! I love your blog!
    Caro

    • Greg says:

      Hi Caro,

      Feel free to ask as often as you wish.

      It is ironic that you asked about nausea. My normal routine is to mix 2 heaping teaspoons of glucose into a glass & mix in water. Then, I’ll sip it, to gradually add glucose; if, I am feeling real porphyric, I’ll drink the whole glass. However, today, I was having a hard time thinking & felt some discomfort in my torso; so, I decided to use a lot of glucose. And, I did feel nauseous. So, I ate some potatoes and the nausea passed. My logic on using a lot of glucose is that if I go to the hospital with an attack, they use IV glucose; and, the amount they use is far more than I generally do. Anyway, by greatly increasing the amount of glucose that I generally use, I was able to think enough to do my job. So, it worked.

      So, I guess the moral of the story is that there is some level of glucose that can cause nausea; but, in my case, it can be corrected with food.

      Please try eating to see if that cures your nausea.

      Greg…

  2. Caro says:

    Tank you Greg!I think you are right, sounds reasonable to me. I will try with one teaspoon of glucouse at first ( my weigth is about 49 kg. or 107 lbs, may be it was too much for me) and I´ll try eating bread or potatoes.
    I wish you feel better now..I have very hard time thinking the bad days too.
    thanks for your help!
    caro.

  3. srinivas says:

    Hi, im srinivas from india. I read ur blog and its very useful. Recently my brother diagnosed with AIP. He recovered by taking glucose therapy. Now he is doing good. The main reason behind triggering the attack is his SEIZURES. During one of the episode, his shoulder dislocated and we operated him. After the operation he suffered with this desease. Now what’s my question is even after his shoulder surgery, he’s unable to lift his hand. On x-ray we found that one of the anchors placed is disturbed during the later episodes i.e., after surgery. Now he is okay can we proceed with operation what are the chances of getting the attack again durin/after the surgery. And one more doubt is my brother now taking 450gms of glucose every day i.e., 75gms diluted in 100ml as prescribed by the doctors. shouldn’t we depend on any other foods rather than taking that my raw glucose.

    • Greg says:

      Hi Srinivas,

      I am sorry to hear about your brother’s problems. Before addressing that, I must point out that AIP is hereditary; other members of your family are at risk & should keep this in mind when considering surgery or if they have unexplained health problems.

      You must work in conjunction with your doctor on all medical decisions; but, it is your brother is ultimately the final decision. Fortunately, your brother has been diagnosed with AIP. My major problems appeared because of surgery; the doctors had no clue that I have porphyria.

      Danger – even when it is known that the patient has porphyria and the doctors do a thorough research on safe/unsafe drugs, there can be serious porphyria problems resulting from the surgery. Porphyria patients do not react the same to the drugs in question. An example is that I take Donnatal regularly for pain; it contains phenobarbital, that is extremely bad for most porphyria sufferers. Another example, is that I had carpal tunnel surgery a couple years ago and all the doctors (hematologist, neurologist, neurosurgeon, anesthesiologist, nurses) were well aware of my porphyria problems; they researched and talked in length to each other. Everyone was so hyper-aware of the situation, that other doctors and nurses in the surgery center, who were not involved with me, came over to discuss porphyria with me. I had a massive attack, post surgery.

      If he can’t lift his hand, it seems he must have the surgery. Just be careful & confer with all the doctors to prepare for porphyria. And, expect that there will be significant porphyria problems afterward.

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