MikeO

1 hour ago, Pistol said:

@MikeO maybe you need to go to a tanning bed? Or else six weeks in the bahamas? Or at least florida?

I could go for a road trip right about now. First one that calls shotgun gets to come with Lol....

8 hours ago, Sarah Tee said:

@MikeO, will you apply to be a prototype tester?

yes i filled out the survey. guess we will see if i get picked.

Well here @Pistoldocs nurse did call and... D booster for now. i am deficient darn it.

well sure there was a reason for the extra tubes of blood taken. fasting glucose went up and matched my BGM before going in and my anion gap went from 4 to 9.

Sure my PCP wanted some sort of re-test. Sure i will discuss this with him next week.

FYI: Stat is gearing up for pre-orders and beta testers.

9 hours ago, Pistol said:

Vit D usually gets given as a booster dose for a few weeks and then 2000 a day as maintenance

well i had the booster back in 2018 and have been taking 2000 a day since. I need to get more sun. sure the doc will order the booster again as i went from 49 back down to 14.

1 hour ago, MomtoGiuliana said:

Maybe this article is helpful?

https://www.medicalnewstoday.com/articles/321512

Thanks! helps? don't know but so of my other panels came back i am low on vitamin D yet again i take it daily and did not absorb the B12 either. A1c dropped from 5.6 to 5.5 but yet my fasting blood glucose is on the edge 126 which matches my BGM and my blood glucose is all over the place 23 mg/dl to 356 mg/dl.

Endo did suspect a GI/pancreas/malabsorption issue hopefully the data sheds some light. still waiting on the CBC. The tech for some reason held up draws and called my PCP as she wanted additional tests so keep things moving she took one more tube.

every time i get blood work done is a bit stressful for me but one measurement i still don't get is the anion gap. I am glad to see i have stayed in range and most times the gap is 8 but have had 2 tests that i dropped to 4. i just don't understand the test.

any help would help to grasp this.

On 9/18/2023 at 3:55 AM, Sarah Tee said:

Reddit groups

just be careful as to what one reads in the reddit groups. even in the diabetic subs as soon as one cites ketoacidosis or a link to a drug the post is deleted. kinda make you wonder. 

7 hours ago, Neomorph said:

I will try that! Anything to make me more comfortable. 

take smaller bites and chew well as. this does help. beats putting your steak dinner in the blender Lol

12 hours ago, Pistol said:

@MikeO try to get away from numbers and go by how you experience your body ( how you FEEL ). Numbers - in our case - are simply data collected before and after, not WHILE it happens. The symptoms before we have an episode are only apparent to US, therefore it is US that need to respond ASAP. 

I hope you know what I am trying to convey ..?

So yes i know what you are trying to convey but the BP data has been helpful when dealing with providers especially ferreting out the postprandial hypo and drug treatments albeit i don't need vitals to know when i am feeling orthostatic (have this down for sure). Blood sugars i need to track. i do know when they are high cuz i become symptomatic but the lows i get a feeling i lost my ability to adequate recognize them. excessive high BG's i need to keep a eye on as well while elevated.    

6 hours ago, Pistol said:

I can see it will be difficult to determine what is causing your syncope unless you can tell the difference between the two based on how you FEEL.

This one is tuff. I have fight left in me. I have the presyncope down and even can tell you the BP's when this happens (low diastolics ) despite a normal systolic is a indicator. sure when i feel a low my bp's are not what i record but then i do not want to faceplant trying to get the numbers. get into the 60's diastolic wise is consistent. sample event is a 123/62. upside i have learned how to recover from this.

5 hours ago, Pistol said:

I also eat slow, chew well

pretty sure OMA preached this to me. Chew 32 times. I have not been doing it.

On 9/15/2023 at 3:59 AM, Sarah Tee said:

Also called our occasional gardener/handyman to ask him to come and do some weeding. I guess he will be doing the exercise.

sounds like a fun day! Exercise is always better when someone else does it for you Lol.

well more to add to this. can't wait to see endo in a week.

Over the last few years i have been struggling with a unknown cause of syncope. while i have made great progress in understanding my orthostatics and adjusting to it along with everything else i have found that i have health wise the syncope cause has been elusive.

I have been haltered numerous times, had a ILR put in, two tilt tables tests, stress tests, echo's and tracked my blood pressure to no end and nothing popped out as a cause to the episodes.

Last year a smart university dietician suspected hypoglycemia and had a OGTT test ordered which showed a atypical glucose response which got me a diagnoses for diabetes.

so the DM diagnose open up the door for support. right off the bat i had a CGM put on so we could see what was going on and it did clearly show periods of low blood sugars (was dismissed by the DM trainers sigh) but at least i was able to recognize symptoms that came with the lows (suspect i am a bit hypo unaware) but feeling anxiety and walking like i am drunk is consistent. The CGM also showed that if i eat the same foods i can either go low or go high which is confusing. Blood sugars are about as liable as my HR and blood pressures.

Not sure how much a dysfunctional functional autonomic system (has been suggested) affects my blood sugars but it seems to me that my system either pumps out a ton of insulin or at times none at all.

So i have trended my blood sugars (1219 sticks so far) and have seen the highs and low but earlier this week i caught a really low reading (23 mg/dl) started feeling anxiety and drunk so i immediately went for corrective measures and by chance had purchased some glucose packs. so took the pack and followed it up with a half sandwich and my blood sugars recovered 106 mg/dl.

This is kinda scary and i get a feeling when i have gone full syncope it was BG related. I feel i was working on automatic during the low. i don't even remember where or what i was doing prior (which is consistent when i flat out pass out) 

Not sure if other folks have seen or have to deal low blood sugars or have any tips      

Good presentation! Unfortunately i don't have POTS so...i continue to look for answers. 

Update. we made some progress with some of the spikey weight gain. Cardiology is holding off on the lasix and has me trending my just out of bed numbers. last six days i have kept it stable at 179. What i have done was reduced my water intake and only drink if i feel thirsty or a bit dry mouthed or if my urine is on the yellow side. during the day i have only seen a couple of pound variance so IMO something is working. not sure why the increased fluid intake affects me or why i retain fluids but last week i did have a new high during the day of 190 so i hope i am on the right track.

Last two evenings i switched what i have been drinking to a flavored water drink mix (stevia) and have made it thru the night without the need to get up and pee multiple times

More to come i am sure. 

well i find when i get spun off from a flare up, illness or finding out i have one more issue to deal with is that when i am ready is to get back into a routine. I start with my moring's so a cup of coffee and something to eat then into the shower right away (gets me moving) and whatever follows after like house chores, meal prep and even some treadmill time.

I find the longer i wait the harder it is for me.

Easy no fuss breakfast meal. Eggs are cooked in the instant pot on high pressure for 5 mins then immediate release and into a cold water bath for a couple of minutes. eggs peel really easy. cleanup is a breeze.

2 hours ago, Pistol said:

When will you open your restaurant, and can I get the family discount?

Absolutely!

One more healthy and easy meal to make. the black beans i did cook in the instant pot. 1 cup beans and three cups water a pinch of salt and a small onion. 30 mins high pressure and then let the pot sit 30 more mins before relieving the pressure.

Did not spike my BG at all.

2 hours ago, Sarah Tee said:

SPECT brain scan

yeah this one hits home. again there are players that write this stuff up and then don't practice it. NIH write up's just suggest it needs to be further investigated. just my 2 cents worth.

Good luck!

Can't say that i have to deal with OI per se as much as getting fatigued or leg discomfort from standing too long. My biggest problem is that i get transient swings in blood pressure and when i go low i end up waking on on the floor.

I can have bp's that range from 160's over 102's down to 74/50 while standing. my heart rate can be just as messed up especially with the low bp's. can go from tachycardia (115's - 130's or so. i am beta blocked) to never budging from 86 no matter what my bp's are.

i just had a sudden low when i was standing in line at the grocery store (felt it) so i sat down on the floor and pretended i was looking at a magazine on the lower rack.