TrialNet Part Seventymillion

To celebrate making sense of these post-it notes, I had a Mary's Doughnut in banana-nutella

To celebrate making sense of these post-it notes, I had a banana nutella Mary’s Doughnut.

Notes on TrialNet phone call. Think about. Helps write down slightly coherent. Only possible audience = self/other person in same TrialNet sitch.

Jack: 200 mg/dL 2h pp. Next step: schedule follow up OGTT Jack/Joslin.

Bigfoot: 271 mg/dL 2h pp. Cut-off = 200; way over edge this time. Next step: ?

Ask obvious question: so we were both higher at the end. Does that mean we’re getting worse?

TRIALNET DOC: Not necessarily. And your c-peptide, I don’t have the result in front of me right now because I’m not at the office, but your c-peptide is still very robust, which would explain the hypoglycemia you experienced after the test

BIGFOOT: Is this related to that first phase thing?

TD: Yes. So this is very typical with type 1. We see the loss of the first phase insulin release, and then a prolonged second phase

BFOOT: Could this mean I have type 2 diabetes?

TD: No, that’s not what this is. Type 2 involves a loss of insulin sensitivity and you’re sensitive to insulin. That helps us explain why you had that episode of hypoglycemia, so I was surprised that the protocol from TrialNet is not what I thought it would be in your case. I thought we would switch you to a mixed meal tolerance test, but TrialNet would actually have you continue to do the oral glucose tolerance test, so it’s up to you. I actually would not recommend continuing with it, unless, I would let you do it if—do you have a peanut allergy?

BF: No

TD: You could continue the study if you would agree to stay and eat some very specific peanut butter snacks that are protein and fat with no simple sugars, because we don’t want you to have that hypoglycemia again. Basically, it’s peanut butter. You would eat some prescribed amount of peanut butter

BF: That sounds okay. I like peanut butter. Meanwhile is there anything I should be watching for?

TD: Do you have a way to test for ketones? And you already know the symptoms of diabetes: being thirstier than usual, also urinating more often than usual…

BF: Is there anything I can do?

In fairness to the Mary doughnuts, I also had an apple.

Or if you’re at a party with people eating doughnuts, maybe don’t eat the doughnut. (To be fair to the doughnut, it was probably more the giant granny smith apple that laid the groundwork for this.)

TD: I would say don’t do anything to irritate* your pancreas. If you’re at a party with people eating cake, maybe don’t eat the cake. For example. Also there could possibly be some benefit to taking 1000-2000 international units of vitamin D each day. Also fish oil. But if there is a benefit, it will be very slight. These have not been shown to offer protection, and if they do offer protection, it is only a very small amount protection

BF: Do you know if my A1c went up? Last year it was four-point-something, very low–right?

TD: Not abnormally low, but low-normal

BF: Do you think that means I’m hypoglycemic a lot?

TD: No, I don’t think so, because you don’t normally eat stone cold simple sugars. And I would be kind of surprised if your A1c is still that low. If it is, I would want to check you for disorders that falsely lower A1c’s. For example if you’ve had a splenectomy…

BF: I definitely haven’t had a splenectomy

TD: Just an example. Or if you are iron deficient, that can cause a false low (lots of words here about hemoglobin, how hemoglobin works, how A1c is measured)

BF: So do you think I have iron deficiency?

JTD: I don’t think so, but I would want to check

Me too!

Conversation also include press doctor Bigfoot traditional line questioning, same thing, perseverate every time: Do you think I might just stay how I am and never get worse?

JTD: Stranger things have happened

BF: So you think it could happen?

JTD: If I had to make a bet on that, I wouldn’t put down any serious cash on that side of the bet, and you mentioned your fasting levels are already starting to creep up

BF: Would you bet the other thing? That I will get worse?

JTD: That’s what we see happen, typically. But look at it this way: we only know about your disorder* because you’re in TrialNet. There must be other people like you walking around in the general population who don’t know they have anything. Because they’re fine. How you’re fine, except during the OGTT. And maybe one day they’ll show up in the emergency room, because they didn’t know the symptoms of Type 1 diabetes. But luckily in your case, we can avoid that

Iron comment set off alarm bell Bigfoot brain because noticed lately tongue often feels…tiny bit weird/swollen, not really swollen but just sometimes feel aware of tongue take up space in mouth, normally take for granted; often think “I must have been allergic to what I just ate,” but never able discern pattern for allergy (Eggplant? Cashew? Chocolate? Tea? Yogurt? Apple?) & also lately crazy legs at night. Occasional crazy seizure legs. Doctor Google diagnose restless leg syndrome. Also often one hand/foot cold while other hand/foot normal. Like corpse hand, only animated. Zombie hand. Or foot.

Mayo clinic iron deficiency symptoms list:

  • Extreme fatigue (LORD YES)
  • Pale skin (I COULD DEFINITELY LOOK MORE ALIVE)
  • Weakness (MAYBE?)
  • Shortness of breath (NO)
  • Chest pain (NO)
  • Frequent infections (NO)
  • Headache (YES)
  • Dizziness or lightheadedness (YESSSSSSS. SO MUCH.)
  • Cold hands and feet (OMG YES)
  • Inflammation or soreness of your tongue (!!!!)
  • Brittle nails (NO)
  • Fast heartbeat (NO)
  • Unusual cravings for non-nutritive substances, such as ice, dirt or starch (ICE! Chomp, chomp.)
  • Poor appetite, especially in infants and children with iron deficiency anemia (NO)
  • An uncomfortable tingling or crawling feeling in your legs (restless legs syndrome) (TOTALLY)

*None of this is even close to actual quotes (except for “robust” and “stone cold,”) but I’m 100% certain he didn’t say irritate. Maybe provoke? Prod? Tease? And not disorder; malfunction?

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5 comments

  1. type1dmom · February 25, 2014

    Quickest free way to check for iron deficiency/low hemoglobin is to go give blood. They will do a fingerstick to check hemoglobin before you can donate. If you can donate then your hemoglobin levels are fine. That was how I found out I had mild iron deficiency anemia a few years ago.

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    • Katy · February 25, 2014

      Great tip!

      I’m ineligible to ever give blood because I lived in the UK in the early 1990’s. I think this has something to do with mad cow disease. But I’m having a physical tomorrow and I’ll ask then. I don’t know why I am HOPING to have anemia. I guess it would just be nice to take a vitamin and feel, look (and behave) better!

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      • type1dmom · February 25, 2014

        Well, of course the dr’s office is even better! I dealt with iron deficiency anemia for many years up until 2012 when I had a hysterectomy. At that point my hemoglobin was so low that I almost had to have a blood transfusion just to have the surgery in the first place. IDA will definitely make you feel like poo. Fair warning though, if you do start taking an iron supplement – pair it with a stool softener because they are very rough on the digestive track and can cause very uncomfortable constipation.

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  2. stacey · February 25, 2014

    Have your IRON LEVELS checked, not just your hemoglobin. I had 3 docs here in PVD tell me that my hemoglobin was just slightly below normal & that I was not anemic. One of my docs in Boston measured my iron, which in fact was very low and now having monthly iron infusions for the next several months.

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  3. Minnesota Nice · March 9, 2014

    I have had RLS for decades, and it’s getting worse. My primary had never even mentioned the iron deal. When he was on vacation, the woman covering for him was married to a sleep specialist and encouraged me to immediately try a supplement. It was really hard on my stomach, but I stuck it out for 4 months. I noticed no difference. The pitts.

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