Hypoglycemia & Dysautonomia

[juliegee]

Hi All-

I moved this thread from Ramakentesh's topic as we branched off to a different topic- hypoglycemia. I am very interested in your experience, Sandy. I have also found research that does link dysautonomia to hypoglycemia. The two certainly seem entwined for me, and I've got a little mast cell activation disorder tangled up in there too. When I feel symptomatic, my BP plummets, my blood glucose plummets, and I break out in hives. How can they not be related???

I'm curious to find others who think their hypoglycemia is linked to their dyautonomia. One obvious example for me occurs when I try to take a shower. I always eat well before hopping in because showering lowers my BP and blood glucose. No matter how carefully I plan things out, I almost always have to eat again after I finish showering. Very aggravating. MY blood glucose can be 95 prior to showering, then 60 when I'm finished. I also feel exhausted like I've run a marathon. We are talking about a 5-7 minute warm, not hot shower.

I've been DXed with absolute and reactive hypoglycemia. I've been mildly to moderately hypoglycemic my whole life, but this has new wave has come out of the blue with great severity. I now consume no sugar, no caffeine, no alcohol, no fruit, nothing white like rice, pasta, potatoes, bread. I eat often, complex carbs with protein. I wish I could take a pill to resolve this. I am not a candidate for metaformin. Apparently, my insulin levels weren't high; but I can feel those adrenal surges you talked about that cause me to have to eat afterwards to stabilize. I have low BP, low cholesterol and my endo does not think I have diabetes. Diet is my only way to deal with this, but I feel like my doc is missing something.

Any comments, advice? I am 46 y/o and I'm guessing that perimenopause may be contributing to this. I'm praying it's just a phase. I have gained 5-10 lbs that I never had before & can't shake it for obvious reasons.

Thanks-

Julie

[Guest Sandy Sims]

Here's the thing.

My fasting glucose levels are close to norms--ditto my fasting insulin.

BUT!!!

Run insulin levels WITH each stick on a glucose tolerance test and insulin goes thru the roof!!!

Also ask for a proinsulin check--this shows right off the bat.

Even tho my glucose levels aren't awful sort of bad fasting--yet.

Insulin levels DURING the GTT are VERY high--as are even fasting pro-insulin levels way off norms.

Let me excercise tho and glucose hits the floor--until adrenals kick in and the shaking starts--with low BP--high pulse--blurred vision--ringing ears (high insulin levels often cause ringing/full feeling in the ears) ALL THE DYS SYMPTOMS WE ALL KNOW AND LOVE SO WELL!!!

I now, after 2 weeks on metformin at 500mg once a day only--have completely lost 75% of my symptoms--the remaining ones are reduced in severity by 1/2! I feel I will get at least 1/2 a dose added for morning at my next visit--and WILL BE COMPLETELY WELL! It's been nothing short of a miracle!!!

But they DO titrate up the dose slowly --to make sure you get ONLY what you need. And as weight loss you WILL have comes around you may be better able to get by without as much. And I still have vitamin def issues from two years of this to deal with. So it's not instant 100% cure--but it's so much so fast it's remarkable!

My body is changing so drastically in two weeks it's unbeleiveable! I'm growing back muscles--without excercising! Feeling stronger! Tummy is gone! A zillion pains are gone! I can sleep without drugs! Hold my own pulse and BP without drugs! My GI problems are gone!! I can even see better again!

BUT (part two) my adrenals are almost gone from two years of being so ill--levels are getting lower each test. Without metformin I feel sure --at some point--my body would no longer be able to pull up my glucose levels with adrenal surge.

Again, metformin works!!!!!

But some docs may not use it--tho it's not a very new drug--its not a very old one either.

But older docs may not use it or be aware of this. Some think it's like other diabetes meds and will LOWER your already too low glucose number. It won't!!! It doesn't work like other diabetes meds!!!

Ask your doctor about this--and keep asking. If you know you are hypoglycemic ask to go to an endo who specializes in this. ASK FOR A GLUCOSE TOLERANCE TEST WITH INSULIN LEVELS AT ALL STICKS--AND AT LEAST FASTING PROINSULIN LEVELS.

IF POSSIBLE I THINK WE SHOULD DO THIS TEST IN A HOSPTIAL OUTPATIENT LAB SETTING. Most hospitals do any and all lab work for walk in folks with a prescription for it--and then if something goes wrong you're in the right place to get help.

Also you mention gaining weight. This may be fluid from kidneys dealing with hypoglycemia. A microalbumin urine test will tell this. I DO have some kidney fucntion troubles from years of this. But it seems to be coming back. WHEW! I lost--18 lbs of tummy fluid in 10 days of metformin!! At one 500mg pill per day-- 1/4 of a normal dose!

Please keep asking--please keep trying to get treatment for your hypoglycemia!!!

I don't want to see ANYONE live thru what I have for two years of my life I wiLL never get BACK!

XOXOX

Sandy

[ajw4790]

Wow! Interesting thread (along with other recent conversation on the topic). My drs still have yet to do a GTT... Something to think about and look into...

I too have had hypoglycemia problems, they tend to come in spurts, just recently I have been having less than I had. So, far my testing does not show anything.

I do think that hypoglycemia and dysautonomia are linked. It maybe a case of which came first a condition causing hypo. that then causes dysautonomia or vice versa. The autonomic nervous system controls blood sugar regulation, so with autonomic neuropathy hypoglycemia can be seen.

[EarthMother]

I wonder about the perimenapause onset issue as well. I have always been sugar sensitive and have not eaten refined sugars for many years, but as I entered peri it seems like all broke loose and my whole system turned upside down. I also have similar problems with the shower. But I wouldn't even attempt at eating before I enter because I don't have enough blood volume to both digest and be upright at the same time. I also had to switch to showering at night. Since I am no longer working I don't have to worry about having a bad hair day in the morning. But I find my blood sugar as well as my POTS are both much less trouble at night. Of course "showering" for me means, sitting on the shower floor with a hand held shower head and getting out of there within five minutes. I simply can't maintain my body temperature yet.

Good luck to all finding the right combination of things to help you in your personal healing journey.

~EM

[juliegee]

Earth Mother, my hypo and autonomic symptoms are also much better later in the day, but I'm soooo tired by then. I get up really early...Sandy, why is the pro-insulin test so different? Why isn't it commonly done? I will talk with my endo about it. I think he only took my fasting insulin prior to my GTT. Gee, I'd hate to repeat the GTT (with insulin levels checked), but if it yeilded helpful info it would be worth it. It felt like a TTT for me, I broke out in hives and had trouble breathing when my blood sugar dropped from 140 to 50 in one hour. I'd love to try metaformin, but I suspect that my endo will say that I'm not a candidate. I will research it further. Thank you everyone for your help.

Julie

[juliegee]

Sandy,

I was able to locate the research you cited. Very interesting. I will bring it to my endo. Do you have any other research you can recommend? Please PM me if you prefer. The cycle they describe perfectly fits what happens to me. I feel my adrenalin rush and I have to eat to calm everything down. I'm not even hungry. So frustrating!!! BTW, I'm so glad the metaformin is working for you. You found the magic pill we are all looking for

THANK YOU,

Julie

[carinara]

I too have hypoglycemia problems. Before i got diagnosed with POTS i went through so many years of searching what is going on with me. Hypoglycemia was a major problem i had back then. When i get bad POTS Episodes now i do get the hypoglycemia problems again, then they are very hard to controll. I changed my food 4 years ago. I changed my whole eating habbits and it does help me a lot. If i stick to my food plan i can manage ok at the moment.

[MomtoGiuliana]

How does the ANS affect blood sugar regulation?

Are we talking hypoglycemia or rapid changes in blood sugar? What is the definition of hypoglycemia?

I was told at one point by a nurse that my blood sugar rose quickly and then dived (based on a test at one point), but I was told by doctors that I didn't have hypoglycemia (after several glucose tolerance tests). I sure felt like I did, but I was told by my POTS specialist (and my endo) that POTS patients have symptoms that merely mimic hypoglycemia. I've never seen anything in the (scant as we all well know) literature that links POTS to hypoglycemia--is there anything?

I also find I feel best on a low-glycemic diet--and I think that is recommended for POTS patients...?

Katherine

[ajw4790]

Hi,

Thought I would pop in quickly and add a couple things I found. I have not read them over yet, but they look like they may be useful. I will have to look at it all more later when I have more time.

http://www.springerlink.com/content/kh7807...text.pdf?page=1

http://diabetes.niddk.nih.gov/dm/pubs/complications_nerves/

[juliegee]

Ajw, that first link looked so promising, but I could only access the first page. Drats! I, too, am looking for more proof of this connection that I believe to be true for me. Katherine, hypoglycemia is a blood glucose reading less than 70, with symptoms. What you describe: a swing too high followed by a crash is most definately hypoglycemia, and most likely reactive hypoglycemia.

I kept on getting this really panicky, impatient, shaky feeling (like after a shower) that I couldn't figure out. It was definately autonomic, lightheaded, etc, but I also was able to rectify it be eating. So weird. I bought a blood glucose meter (around $20 at Wal-Mart) just to see what my blood glucose was doing during those periods. (Mind you, I eat right before I take a shower.) My blood glucose was crashed. I actually got repeated "Low" readings which are supposedly 20 or below. I doubt it really got that low, but I got pretty pitiful a few times. I actually had to call the EMT's once. My sugar was so low, I was actually pouring sugar in my mouth and couldn't bring it up. The EMT's checked my meter and it was reading accurately.

During my GTT, my first reading was 145, second 144, third 70, fourth 55, fifth 60. I was DXed with both absolute and reactive hypoglycemia. Keep in mind that many endos know almost nothing about hypoglycemia as an issue separate from diabetes. My endo ruled out an insulinoma, a tumor of the pancreas, which can be responsible for repeated crazy low blood glucose. Aside from that, he's not been very helpful. A low glycemic diet has been only only resource. Helpful, but I still feel like I'm eating too much just to "stabilize." Luckily, I exercise a lot and am not gaining too much weight....but I need to figure this out so I can get some control of my life again.

Thanks everyone for the help.

Julie

[EarthMother]

When I first started doing what I thought was a hypoglycemic diet, I did a lot of "quick fixes" when I noticed I was in a crash ... like orange juice, a piece of hard candy etc. What I now know for my own body is that these were only making the problem worse. My system simply can't handle any kind of sugar load, even when it is in attempt to correct a problem. I found this out also in the ER when they gave me a glucose push (injection) which rightly brought me up to 135 only to crash to 63 within the hour.

Over a few months I began to document what things caused me to crash, and what foods helped to stabalize my blood sugar. Orange juice and any refined sugars are not tolerated by my system. On the other hand four ounces of whole milk works like a charm. There is enough natural sugar in whole milk that it will bump up my blood levels, and then there is enough protein which will kick in within the hour to keep them elevated and then finally the FAT from the whole milk will kick in several hours later. For me, fat has been an important part of the balance. A slice of whole grain toast with real butter on it helps to keep me stable and couple it with some fresh nutbutter and I'm good for the whole night.

I imagine that the way we react to foods is very unique and indeed may change over time. When I started my dietary changes, I couldn't even eat a quarter of a potato with the skins on without sending my glucose soaring. Now that I am much more stable and have totally removed any food triggers, I can eat a potato half without a problem -- mindful of course that I eat it with a protein (tonight I had two hard boiled eggs with two little red potatos) and it was just what my body needed.

Good luck finding something that works for you.

~EM

[juliegee]

EM, I'm so with you. Can you believe my PCP gave me a hypoglycemic diet with OJ and cornflakes for breakfast!!! I eat very carefully, only complex carbs, protein, and no sugar. I've not graduated to a skinned potato yet. Pouring sugar in my mouth was an absolute last resort as I was losing consciousness. Thanks for your help. I hate that you're dealing with this too, but it help me feel less alone.

Julie