Hypoglycemia And Othostatic Hypotention

[miranda]

I have OI , however lately I am notising if I eat sugar I feel shakey and anxious half an hour later.

Then last night we went to the gym (trying to strengthen my legs)

and at the end of my workout I came over really ill, shakey and faint.

My husband was with me and he got me to lay down and lift my legs,

usually I will improve doing this.

However I got worse and worse and could not stand up , this went on for 20 mins.

My husband got me some sugar and after consuming it , 10 mins later I could stand up and felt alot better (but still weak).

This got me thinking I must have hypoglycemia , so I looked it up and apparently it can be the cause of orthostatic problems.

Is this right ? Can anyone advise me on this ?

[sue1234]

Okay, this is just too many of us talking about hypoglycemia!! I have got to learn how to do a poll.

Mirry, if you search under "hypoglycemia", you will find that more and more of us are having that problem. I personally have a problem with high insulin, so that contributes to mine. And, exercise is actually used to lower blood sugar levels, so that is definitely what probably happened to you.

[miranda]

oh wow thank you , I will certainly look more into this.

I had some bad news today , I went to my dentist and got told I have gum disease ,

it was a shock because I have no bad teeth and my gums look fine, but I had pain when I ate, the xrays showed the disease.

My dentist said I shouldnt have this disease because I dont smoke and he can see I look after my

teeth very well, he said there is a connection to diabetes in some people and wondered If I have any insulin problems !!!

[juliegee]

There is also a correlation between early gum recession/disease & connective tissue disorders, which can cause OI issues.

Mirrry, where did you read that hypoglycemia can be the CAUSE of OI? I ask because I have never heard that before. I know there is a correlation. I just never heard that hypoglycemia actually CAUSES OI.

We've had many discussions about this before. Do a search on this site for tips, etc.

Julie

[miranda]

I have done so much reading on the subject

and can not recall where I read it ?

but it was this week and I will try to find it again.

Thats facinating Mack's mom , do you know where I can find info on gum disease and connective tissue disorders please , it sounds interesting and maybe relevant.

Thank you x

[sue1234]

Julie,

I don't know if this has anything to do with what Mirry had read, but I have found articles that talk about how insulin has a vasodilation-effect in the extremities. So, I guess when one is hypoglycemic from higher insulin, I could see where the vasodilation could initially cause ortho. hypotension.

BUT, when I read that study, their subjects were "normal" and supine the whole time. Another interesting thing that happened was their norepi. levels rose.

That is kind of why I did that hypoglycemia poll. Couldn't you just imagine this happening:

1. Our blood sugar goes up

2. OUR system overreacts, and the insulin goes really high

3. High insulin causes peripheral vasodilation

4. If lying down, just a little rise in norepinephrine(as per the study)

5. If upright, because of vasodilation from insulin, OUR body then compensates with more norepi. to cause vasoconstriction, and that's how we end up with POTS. (well, it all sounds good, anyway)

I could soooo see that happening to me. I have had hypoglycemia for 15 or more years, so I can see where this could be a factor for me. I have an appt. with my endo next week to address this actual scenario.

I think there should actually be a study somewhere on this!

[juliegee]

I have done so much reading on the subject

and can not recall where I read it ?

but it was this week and I will try to find it again.

Thats facinating Mack's mom , do you know where I can find info on gum disease and connective tissue disorders please , it sounds interesting and maybe relevant.

Thank you x

Hey Mirry-

When my son & I were evaluated by a geneticist, he specifically asked about our gums. The fact that I had early recession & had to have tissue grafts in my 20's (w/o any sign of gingivitis, etc) was further evidence of a connective tissue disorder. All of the medical literature on connective tissue disease speaks about fragile, friable gums as being a symptom of a connective tissue abnormality.

Julie

[juliegee]

Julie,

I don't know if this has anything to do with what Mirry had read, but I have found articles that talk about how insulin has a vasodilation-effect in the extremities. So, I guess when one is hypoglycemic from higher insulin, I could see where the vasodilation could initially cause ortho. hypotension.

BUT, when I read that study, their subjects were "normal" and supine the whole time. Another interesting thing that happened was their norepi. levels rose.

That is kind of why I did that hypoglycemia poll. Couldn't you just imagine this happening:

1. Our blood sugar goes up

2. OUR system overreacts, and the insulin goes really high

3. High insulin causes peripheral vasodilation

4. If lying down, just a little rise in norepinephrine(as per the study)

5. If upright, because of vasodilation from insulin, OUR body then compensates with more norepi. to cause vasoconstriction, and that's how we end up with POTS. (well, it all sounds good, anyway)

I could soooo see that happening to me. I have had hypoglycemia for 15 or more years, so I can see where this could be a factor for me. I have an appt. with my endo next week to address this actual scenario.

I think there should actually be a study somewhere on this!

Hi Sue-

Sounds plausible. I'm just trying to apply it. So you are suggesting that our blood sugar is more labile? I have rarely caught highs in myself. Once was during the GTT, it started at 140 then dropped to 50. One other time, it was 110 after eating an apple- is that high? Otherwise mine is always pitifully low, but probably because I'm checking it when I feel symptomatic. You're suggesting that I have highs I don't know about that precede the lows, right? I have learned to avoid all sugar, even in fruit to avoid the lows....so those lows MUST be preceeded by highs.

I never had my insulin checked I have real doubts about mine being high as I certainly don't demonstrate peripheral vasodilation. My hands & feet are really cold, deep purple at times with chillblains.

I read somewhere that OI patients had unreliable digestion, sometimes super fast- other times pitifully slow- or a combo of both depending where in the GI tract the nerve damage was. Low blood glucose occurred as the body attempted to deal with the erratic release of glucose. Have you ever heard that theory?

Julie

Keep your ideas coming. I'd LOVE to get to the bottom of this connection

[miranda]

Thank you for the replys , it means alot to me .

Today I spoke to my gp on the phone and he was really interested in

me now having gum disease. He wants to see me to discuss it further.

So I look up EDS , and I tick alot of the boxes,

please tell me what you think of this .....

my fingers and toes can bend right back , (most of my family have this)

and my daughter can bend her arms inside out.

I have scoliosis , OI , and gum disease.

How should I go about discussing this with my doctor ?

[juliegee]

Thank you for the replys , it means alot to me .

Today I spoke to my gp on the phone and he was really interested in

me now having gum disease. He wants to see me to discuss it further.

So I look up EDS , and I tick alot of the boxes,

please tell me what you think of this .....

my fingers and toes can bend right back , (most of my family have this)

and my daughter can bend her arms inside out.

I have scoliosis , OI , and gum disease.

How should I go about discussing this with my doctor ?

You need to see a geneticist, one that is knowledgeable about connective tissue disorders. Maybe tell us where you live & others here can recommend a doctor somewhat close to you. This may explain your OI and gum disease.

Very rarely patients with connective tissue abnormalities can have weak arteries, heart valves, etc. After you get a DX, it may be a good idea to have an echocardiogram just to make sure everything's OK. One of my brother had an aortic aneurysm. Another had a dissected carotid artery- both are indicative of those kinds of problems. Even with all of our symptoms, we didn't fall into a specific DX. We were simply told that we had an unknown connective tissue disorder. Just knowing, helps us take certain precautions.

Your symptoms sound more indicative of Ehlers Danlos Syndrome. Best of luck sorting it out.

Julie

[avidita]

I have reactive hypoglycemia (plummeted to 35 on the 3rd hour) and the endocrinologist did not find anything that could be causing it as far as excessive insulin production, etc. So said I was just very sensitive to carbs. A funny thing happened to me recently that you might relate to. I was taking a long walk and in stead of feeling progressively better, as I usually do when I walk, I was getting progressively worse to the point where I started getting the same symptoms I did right before I blacked out on my most recent and confusing TTT (where my BP went to 50/25 after years of normal BP on numerous other TTT tests). So I thought I would pass out, sat down and called my husband to get me. When he took me home, I took my BP and pulse - both normal at 110/70 and 70 respectively. But I was still feeling bad and about to pass out....so it dawned on me to check my sugar - 50. There it was, the reason for my symptoms at that time. Pure and simple, I eaten mostly carbs all day and nothing for the 2 hours before the walk. So now I make sure I eat often and especially before any physical activity.

[miranda]

Thanks Julie , I feel I may be onto something here ,,,

my dads sister (my auntie) died from a subrachnoid hemorage and she had scoliosis.

Both my dads aunties and his great grandmother died from hemorage too.

His cousin also has scoliosis.

My great grandmother had something wrong with her , both her legs bowed outwards but we think it must of been rickets ?

When I was a kid I used to be able to do the splits and put my legs around my head no problem,

I also used to always sprain both my ankles easily and still do.

When I went to have a verucha removed from my foot, the doctor said wow you feet dont sit right cos they are so loose and flop about.

I am scared that I might have an answer but also excited.

[miranda]

I forgot to mention I live in the south Uk.

[juliegee]

Hi Mirry-

You are definitely hypermobile!!! I am afraid that this thread may not be read by too many folks. Maybe consider posting a new topic: NEED A RECOMMENDATION FOR A GENETICIST (who gets connective tissue disorders in Southern UK.) That may get you more responses.

Don't be afraid. Knowledge is power. Knowing the cause of your symptoms helps you better treat them & keep yourself safe.

Keep us posted on your journey towards a DX!

Julie

[Ashelton80]

Julie,

I don't know if this has anything to do with what Mirry had read, but I have found articles that talk about how insulin has a vasodilation-effect in the extremities. So, I guess when one is hypoglycemic from higher insulin, I could see where the vasodilation could initially cause ortho. hypotension.

BUT, when I read that study, their subjects were "normal" and supine the whole time. Another interesting thing that happened was their norepi. levels rose.

That is kind of why I did that hypoglycemia poll. Couldn't you just imagine this happening:

1. Our blood sugar goes up

2. OUR system overreacts, and the insulin goes really high

3. High insulin causes peripheral vasodilation

4. If lying down, just a little rise in norepinephrine(as per the study)

5. If upright, because of vasodilation from insulin, OUR body then compensates with more norepi. to cause vasoconstriction, and that's how we end up with POTS. (well, it all sounds good, anyway)

I could soooo see that happening to me. I have had hypoglycemia for 15 or more years, so I can see where this could be a factor for me. I have an appt. with my endo next week to address this actual scenario.

I think there should actually be a study somewhere on this!

Hi Sue-

Sounds plausible. I'm just trying to apply it. So you are suggesting that our blood sugar is more labile? I have rarely caught highs in myself. Once was during the GTT, it started at 140 then dropped to 50. One other time, it was 110 after eating an apple- is that high? Otherwise mine is always pitifully low, but probably because I'm checking it when I feel symptomatic. You're suggesting that I have highs I don't know about that precede the lows, right? I have learned to avoid all sugar, even in fruit to avoid the lows....so those lows MUST be preceeded by highs.

I never had my insulin checked I have real doubts about mine being high as I certainly don't demonstrate peripheral vasodilation. My hands & feet are really cold, deep purple at times with chillblains.

I read somewhere that OI patients had unreliable digestion, sometimes super fast- other times pitifully slow- or a combo of both depending where in the GI tract the nerve damage was. Low blood glucose occurred as the body attempted to deal with the erratic release of glucose. Have you ever heard that theory?

Julie

Keep your ideas coming. I'd LOVE to get to the bottom of this connection

I find the first theory very interesting. I have major blood sugar problems especially when I am not perfect with my diet and eat carbs. Carbs are very bad for me. I wear a heartrate monitor and notice when I start to get a little lightheaded and know it's because I haven't eaten my heartrates are usually higher. The minute I eat and things start to level out my heartrates go back to being fairly normal. Well, as normal with Pots. Insulin is our most abundant hormone and you know it has to influence other hormones which influence the function of glands (ie thyroid) which influence other glands (ie adrenals) and then we have a cascading complex problem that "doctors" can't figure out because they are not good at putting the whole picture together. That is my measly theory. So maybe the cure is at the ends of our fork.

[sue1234]

Ashelton, I agree that alot of us keep having this odd issue. "Normal" people's blood sugar doesn't normally drop below around 60 or maybe 55ish before rebounding. It seems some of us get REALLY low. The USUAL cause for such a low is the pancreas did not shut off its insulin production. It can happen from either a tumor overproducing(insulinoma) or just that the pancreas has too many beta cells secreting insulin, and they oversecrete. There could be a rare reason where the body doesn't make glucagon or something like that, where it doesn't make glycogen to offer the glucose(it gets over my head).

I know when the blood sugar goes down past something like 60, our counterregulatory hormones kick in-epinephrine, norepinephrine, glucagon, and to some extent, cortisol. They are all kicked out to increase our glucose. I have to think that my body has been doing this for years, and wonder if it could have made my system just too sensitive. Maybe if my insulin can be controlled, thus keeping the blood sugar more stable, then the autonomic system can have a rest.

You know, when I think further, having higher autonomic hormones(catecholamines) can cause a lowered blood volume. I know if people with a pheo, they have "restricted" blood volumes and that's why they have to get on an alpha blocker first, if I remember correctly, to build their volumes up before starting the beta blocker. So, even though we don't have the cats as high as a pheo person, a roller coaster of high cats might, in the long run, cause a lowered blood volume. AND then the orthostatic issues begin.

Hey, Julie and Mirry, y'all start a poll about "if people have symptoms" related to EDS/connective tissue. There really are alot of y'all that have the issue, but if you just list EDS, people might miss that they are connected.

I go to my endo next week, so this story will be repeated and asked!

[Sarah4444]

Dumb question - I suspect I might fit in here too, but kind of don't want to - enough to worry about, check... What do you use to check your blood sugar? A home monitor like those for diabetics? Are they expensive, accurate, etc?

[sue1234]

I bought a monitor from the drug store. The strips are expensive, but I don't test often. I only test when I feel "good"(rarely) or definitely if I am in a low. I want to make sure I am not getting used to my lows, and thus end up with symptoms waiting to show when my lows are lower!

They are somewhat precise, but I guess in a relative way. The blood from the fingertip is something like 10% or so higher or lower than the blood they test from a lab draw. But, if you get symptoms and show up low, it has meaning.

Unfortunately, insulin can only be checked by labs. Best is during the GTT to see what the pattern of release is.

[vemee]

I have been diagnosed with insulin resistance and have had a problem with hypoglycemia for 30 some years. I remembered that the first real hypoglycemic attack that I know of happened the same year I can definitely point to my first physical pots symptoms. They may or may not be related.

Usually my sugar drops and then can correct itself without food. Does anyone else do this? I can drop below 30 with symptoms and then pop back up to the normal level in minutes. I have even been fasting for a couple of days due to stomach bugs and my sugar has dropped and corrected itself. I have been tested for an insulinoma and one was not found.

There is a NIH clinical study on hypoglycemia but my doctor told me that you have to have a documented glucose drop from a venous draw in order to qualify.

[sue1234]

Vemee,

Wow, dropping to 30 is low! Can I ask why you don't eat before that point, or was this done under the supervision of a doctor?? I panic when I catch a 40-something, and eat something sugary right away. I am so afraid of passing out and injuring myself, or just that no one will be around to give me glucose.

Are you going to try to go to NIH? If it wasn't so far a drive for me(I don't fly), I would consider it. I was also tested for an insulinoma with the 72-hour fast, but didn't go below 62. I just seem to OVERreact when any carb is consumed. I have read some medical articles that specifically say it IS possible to have an insulinoma and ONLY react after meals.

I have had hypoglycemia for a long time too, about 15-20 years.

[vemee]

Vemee,

Wow, dropping to 30 is low! Can I ask why you don't eat before that point, or was this done under the supervision of a doctor?? I panic when I catch a 40-something, and eat something sugary right away. I am so afraid of passing out and injuring myself, or just that no one will be around to give me glucose.

Are you going to try to go to NIH? If it wasn't so far a drive for me(I don't fly), I would consider it. I was also tested for an insulinoma with the 72-hour fast, but didn't go below 62. I just seem to OVERreact when any carb is consumed. I have read some medical articles that specifically say it IS possible to have an insulinoma and ONLY react after meals.

I have had hypoglycemia for a long time too, about 15-20 years.

The first time I was fasting it was because I had a colon bug so I just gave everything a rest for a couple of days. After the 48 hour mark I felt bad but thought it was from pots but I took my blood sugar anyway. It was 38; I got excited because I knew it wasn't suppose to do that unless I had an insulinoma but when I retook it it popped back to 77. I thought it might be a fluke so I hesitated mentioning it to my doctor but I did and then was put in the hospital for a 3 day fast. My glucometer matched the results of the venous draws everytime. Again sometime after 2 days I was feeling euphoric and after about 5 to 10 minutes I took my glucose which read "lo" my monitor won't read below 20. Again I got excited and called the nurse who was busy but came when she could. My sugar reading on her monitor was in the normal range and when I retook mine after her it matched her glucometer. I think a shot of adrenalin has something to do with my glucose being able to correct itself. At the end of the fast I was given a high carb breakfast and my glucose shot up past 200 (actually it did hit 300 and dropped down to just over 200 before the first official hour measurement. I was put on metformin which has helped under normal circumstances but if I go out to eat or eat sweets/a lot of carbs I bounce around and feel bad but so far I have not caught it going below 60.

Without the med my glucose would bounce around above 60 but vary between 30 and 60 points within just a few minutes. It might jump 30 points and then drop 40 points 2 minutes later only to repeat the cycle for a half hour. My endo said that in order to go to NIH I am required to have a reading less than 60 from a venous sample which is hard to get when I self correct. The times where I have not self corrected I am in no mood to be around people and I am afraid, if alone, to drive to the dr.s office to get a draw.

[sue1234]

You sound just like me! I went to my endo yesterday and was prescribed Metformin to try and stabilize the insulin. I don't really get "highs" after I eat, so I don't really have diabetes, it is just too much insulin.

When I got there, I had not eaten for 3 hours. I normally eat every 2 waking hours to prevent hypos. I tested my glucose when I sat in the room there, and it was 64. I thought, okay, now it will just keep going lower and I'll have an "episode" right there at the office. I checked again 10 minutes later and it had gone up to 79, then 5 minutes later, up to 103!!! Jumped almost 40 points in a 15 minute period!! So, I totally get what you are talking about. This is kind of unusual for me, as I usually just keep sliding lower and lower. But, I know the catecholamines are involved(and glucagon) in getting the sugar back up. It kind of makes sense that we, POTS people who are very sensitive with fluctuating catecholamines from just standing, also have gung-ho catecholamines when the glucose drops. I feel like I am in a constant state of push-and-pull regarding glucose dropping and then rising, and then dropping again and rising again....

I have a venous draw of 39 from a random draw at a doctor's office. Plus, my 5 hour GTT had a low of 55, so I guess I would have two qualifying labs.

I still think the basis is the pancreas putting out too much insulin to begin with.

[vemee]

You sound just like me! I went to my endo yesterday and was prescribed Metformin to try and stabilize the insulin. I don't really get "highs" after I eat, so I don't really have diabetes, it is just too much insulin.

I still think the basis is the pancreas putting out too much insulin to begin with.

Last Christmas I ate candy not a whole lot but enough and I did not have any problems until the day I got back on my diet and cut the sweets out. I did not have a glucometer then because the doctors just told me to eat crackers between meals but I was in a rare altered mentality which just happened to change a few minutes after eating a hotdog on a bun. I knew then it was hypoglycemia and that the cheese crackers did not help a bit. Probably my body was use to producing enough insulin to handle the candy and did not adjust to the stopping of the candy.

It seems that the prevailing idea out there is that it is very rare for people with reactive hypoglycemia to have their glucose levels drop below 60. In fact a lot a doctors say there is no such thing as reactive hypoglycemia and people are just overly sensitive to changes in their glucose levels. Even the psychiatrists have their opinion on the matter. Fortunately I do have the meter to show I have a real problem.

[Friedbrain]

<disclaimer: I'm only now starting to work on a possible dysautonomia diagnosis> but I have a PhD in a healthscience field, and have been researching my health issues for years, so I wanted to respond to a few comments in this thread.

First: to the author of this thread-I am VERY interested in why someone would have problems after exercising! That's one thing I was searching for here. I started a heart monitor last week, so thought I would test an hypothesis: that I knew how to kind of compensate for my condition while exercising by withholding the compensation while I worked out, thereby provoking a "recordable incident"....and about ten minutes after working out, I started having seizures (or what the ER had called seizures a month earlier, which may have been a cop-out diagnosis, long story). Initially dizzy, then heart racing, then all-over body shaking for about a half hour....until my husband drove over to get me and gave me my "self treatment"-Salt! Several months ago, I had noticed that I would eat salty popcorn after working out to make myself feel better. So then I started supplementing my workout water with those electrolyte packets with the highest salt content I could find-and I felt FINE afterwards. Well, only drank water for my "test" and WHAMO (the reaction was a little more severe than I was looking for!).

Secondly-hypoglycemia. I was told years ago that I had "reactive hypoglycemia"-that, at a low normal blood glucose level (like 60), I would feel sick and shaky. My guess now is some insulin resistance, such that I eat sugar, get a huge release of insulin in response that ***** sugar out of the bloodstream, resulting in crash (I either get the shakes, fall asleep, or both). Normally, the body compensates by releasing stored glucose into the bloodstream, but that that mechanism is defective (one time, I was feeling shaky from hunger right before getting an ACTH stimulation test...and then felt a whole lot better after the injection! Fwiw). I don't have diabetes, but I once had a diabetes diet counselor explain the diabetes diet to me and I went on my own version of it; lost a LOT of weight and never felt better. My understanding of why is that by eliminating simple sugars, and combining complex carbs with fats and protein (along with smaller, more frequent meals), my body has a steadier level of blood glucose and I don't get that huge insulin dump.

[Chaos]

Like all of you...trying to figure all of this out. It's all so obviously connected in my body, but my mind certainly isn't grasping all of these complex connections.

I've been asking at the cardiac rehab program I'm in, what a "normal" drop in blood glucose would be for exercise. No one seems to have an answer except "it depends on the individual." The endocrinologist I see said it really shouldn't drop with exercise because the system is built so that you would replace any glucose you used during exercise; therefore,it should stay pretty stable. I've checked my CBG before ex. and after ex. and have had it drop by as much as 43 points doing my cardiac rehab program. I've also had it stay within a point or two on other days. And, I too have been out for walks where I felt nearly as symptomatic as I do with the TTTs.

I had heard that reactive hypoglycemia "doesn't really exist", but my glucose dropped to 37 with a 3 hour GTT. In talking to several different providers, it seems the consensus is that reactive hypoglycemia DOES exist in some people but it's been way over-used and used incorrectly as a diagnosis. Apparently a lot of us here do actually have true reactive hypoglycemia. It's GOT to be tied in with all this autonomic dysfunction. Both my GP and Endo agree but haven't been able to explain why to me..at least not in a manner that my brain-fogged state can comprehend.

Julie-interesting numbers you had. They look a lot like mine. My fasting insulin level was low too, but I sometimes wonder if I don't have an extra reactive insulin system. Sometimes when I expect a high 1-2 hour post prandial CBG it's right back down in the 60s or 70s again. Other times, like you, after eating an apple it'll be up in the low 100s which is high for me.