Reactive Hypoglycemia??

[Debbie Rose]

Hi ALL, I have been trying for over a year now to be given a diagnosis. It seems every 3 to 4 months I develope something new. Most recently I have developed low blood sugars after eating a complex carb meal-like cereal for breakfast.I have dropped as low as 47 (norm-8- to 120) and symptoms don't start until I hit mid 50"s-very scarey...Has anyone else developed this symptom as their autonomic disorder progressed??

Iam new and will tell my story when I get home from work tomorrow.

[Chaos]

I have reactive hypo glycemia and have had it for about 25+ years. I know there are many of us on this forum that have similar issues.

Welcome to the forum! Sorry you have a reason to be here but hope you can get some answers and some treatment ideas to help manage your symptoms.

[corina]

Welcome to the forum Debbie Rose!

I have low blood sugars too. My doc told me that I'm "overproducing" insulin for some reason. I have to eat on a regular base about every 1,5 to 2 hours. I can get in trouble when exercizing (swimming/walking) which is why I always take quick sugars, a bite and something to drink with me.

I can get high in sugars too for no apparent reason which makes it difficult to know what is going on. It's always something isn't it

[sonyasmith12]

I was diagnosed with reactive hypoglycemia 10yrs ago. They sent me to a Endocrinologist at Cleveland clinic last year, and he stated reactive hypoglycemia is not a diagnosis recognized any longer and that I have no hypoglycemia, since my fast glucose is always normal. I never knew what to think after that....never know who to trust anymore. I still always feel sick about 40 mins after I eat any sugary carb without protein. Etc.

[katieindixie]

YES YES YES.....it just started a few months ago and I thought I was just crazy......... it started after drinking a sugared coffee....only 15 gms of sugar in it, but within minutes I was literally so weak and I dropped to a low of 39....

what is everyone doing for it??

I go to Vanderbilt on Tuesday........I can hardly wait to see what they have to say........ Mine I believe is all auto immune related....... I just want so badly to feel better

[vemee]

My edocronologist put me on metformin which helps. Also eating a high protien diet helps. I have heard and read about how reactive hypoglycemia does not exist but this is a case of doctors not beleiving the patient and just looking at what they see in the lab. My blood sugar does fall below 60 and can either stay that low until I eat or bounce back up on its own. There have been times where I have taken my blood sugar in a series of tests that are a minute a part and have found it jumping back and forth by as much as 40 to 60 points in a minute with symptoms. Katieindixie I hope they have something to tell you at Vanderbilt but they did not give me an answer when I wrote them. I don't think it is something they are aware of being a problem.

[sue1234]

I agree, Vemee. I don't think the POTS researchers are aware that ALOT of us have hypoglycemia. I really think they should look into that more.

Debbie, I am another hypoglycemic person also. I've been fighting it for 20 years, but it has been alot worse in the last 4 years. I've been to a handful of endos to try and sort it out, but so far, none can tell me why I have this. I changed my diet to much lower carb, pair any carbs with protein, etc., but it only "helps", it doesn't fix the issue.

Katie, please let us know what Vandy has to say about it. Are you going to Vandy for POTS or to an endo for hypoglycemia?

[sonyasmith12]

Katie, I'm going to Vandy this Monday 7/23- for research study. Good luck!

[Friedbrain]

I was diagnosed with reactive hypoglycemia years ago based on symptoms associated with low but not abnormally low bg. At the beginning, when it was diagnosed, I would get shaky if I didn't eat after several hours. However, 14 ys ago, I started having symptoms associated with *eating*; simple carbs or carb loading (not that I did that intentionally!) caused me to *crash*, fall asleep so hard I couldn't even open my eyeballs for hours. I lost a year of my life sleeping before someone suggested it was diet related (I was seeing my gyn at the time for ovarian cysts, and he patted me on the head and said that fatigue was a female thing and nothing could be done about it-*%$#). Started a low-carb/numerous small meals/protein and fat combined diet and felt so much better (even lost weight). Since then, as my heath deteriorated/symptoms increased, sensitivity to foods has increased. If I eat sugar, like cookies at a holiday party, I will either experience almost immediate tachycardia or crash. Several times, I have experienced what sounds like myoclonus for hours when trying to fall asleep. Not just regular jerks, but intense jerks (and one time, I couldn't talk immediately after), which my dh agrees about. Still....not sure if my bg gets down below "normal" range (tho haven't pricked myself in years). I was diagnosed with adrenal insufficiency 9 ys ago and on replacement hormone; a new doc wanted to give me a glucose tolerance test but I nixed that! I'm too afraid.

OHas anyone monitored their blood pressure after eating sugar? I had a fruit shake (although I'm sensitive to fruit, I used to be ok with these, as they're a combination of foods including yogurt; sometimes, they make me feel nauseous, though; and sometimes I crash) yesterday, and then walked upstairs and took my blood pressure. Granted, yesterday I was not feeling good and most of the morning, that kind of "exercise" was cauing tachycardia and ee on the blood pressure monitor, but I'd eaten salt and was feeling better before this shake; and then my bp was ee again. I have not systematically monitored my bp after eating different foods, so was wondering if anyone has done this.

[katieindixie]

I saw Dr. Bioggioni (spelling?). .. I did get diagnosed with hyperadrenergic pots. He didn't really have very much to say about the reactive hypoglycemia which was frustrating. They made me an appt to see Dr Brio or Buo in the diabetes clinic. I do not have diabetes though and have never had an A1C over 5.6. He just didn't seem to want to discuss it at all. Should I have been pushier??

My own GP decided to "symptom chase" for me and gave me Januvia 100 mg which has helped.

[Debbie Rose]

When I first crashed from drinking a large glass of Orange Juice and then went to work, my blood sugar was dropping an hour and a half leter and was 71 (friend diabetic tested me) I bought myself a glucometer..Having only carbs-like cereal and then nothing else for 2 hours drops me to 47-51 range with alot of symptoms. Ususally eat small meals all day ONCE I start eating but rarely eat breakfast. So this was a surprise. I am a carb addict-ice cream and chocolates in particular but have learned to eat a protein and veggie meal before indulging.

[Sheila1366]

I also have hypoglycemia. So far we feel it is due to my motiltiy disorder and the lack of food I take in. But I wonder if it is more to do with my autonomic system going downhill.

It is very hard to manage.

[Serbo]

i have this. best thing for it = exercise and high protien diet

[DoozlyGirl]

For anyone who has caught a blood glucose below 60, I suggest that you request that you have a hypoglycemic panel drawn during symptoms (insulin, proinsulin and c-peptide ). If any of you have hypoglycemia (even reactive hypoglycemia) simultaneously with elevated insulin (or any fraction), then you need to be evaluated for insulinoma. It is possible to have this panel drawn after eating, so fasting is not always indicated.

I spent last summer chasing down my reactive hypoglycemia. My OH will trigger plummeting blood sugars. And my OH is triggered by anaphylaxis.

Protein taken in everytime you eat will help stabilize blood sugars.

Lyn

[gertie]

I've been battling this for years. I've blacked out several times from it especially if I'm nauseous & can't eat or if I'm having a

reaction to a medication. If my glucose gets to the 50's I know I better eat some protein in a hurry. I could never finish a

cleanse for a colonoscopy because the more prep I drank the sicker I became. Six hour into the cleanse is as far as I ever

got. Dr's finally told me not to try it again. Fasting for early morning blood test don't work for me either.

[sue1234]

Lyn, I have to say that I had the mixed meal test a few months ago at a prestigious clinic. According to the standards for glucose testing purposes that I've read relating to endocrine practices, it states that in glucose tolerance tests, a certain amount of "normal" people will have hypoglycemia because the glucose is an unusual stimulant. It says that using a mixed meal test(good ratio of protein, fats and carbs) will turn around and show that these people, IN FACT, DO NOT actually have hypoglycemia. Welllllll, my numbers dropped into the 50s for a full hour, and in the 60s for a half an hour during the MMT. At that same time, my insulin and c-peptide were definitely elevated. I had the exact same results with my OGTT. Those elevated numbers were blown off as nothing but that I must have something like insulin resistance. I was told I could not have an insulinoma because that only happens when fasting numbers of glucose are low and the others elevated. In essence, I was told to just keep eating often. In other words, go home, I don't know why you are like this and I don't want to figure it out!

I would like to say that I do not agree with this doctor's statement, and there is a medical article published by a doctor from this SAME institution that proved in a study that 6% of insulinoma patients react to glucose ONLY. I am not sure if someone like me has an insulinoma or something maybe like what bypass patients get--nesidioblastosis, where there is an increased number of insulin-producing cells. Either way, the body is producing too much insulin. I have had this for 20 years, and never had any diabetic-like numbers. I think there is something "different" about our hypoglycemia cases, and I wish they would take them seriously.

I guess my point is, good luck to anyone that can get a doctor to agree that post-prandial hypoglycemia is anything other than insulin resistance.

And, if anyone that finds that doctor that takes hypoglycemia seriously with us, please let me know!!

[Fussybug]

I am just realizing this might be a part of my problem too, but dont have much information.

Is there an endocrinologist anywhere that treats hypoglycemia not related to diabetes?

[Friedbrain]

I could never finish a

cleanse for a colonoscopy because the more prep I drank the sicker I became. Six hour into the cleanse is as far as I ever

got. Dr's finally told me not to try it again.

Sorry for going off-topic but Alicia, do you know *why* you reacted so strongly to the colonoscopy prep? I had to do it earlier this year-against my better instincts!-and had HORRIBLE reactions to the two dosings, too. Very bad body shaking, both times; and myoclonus that night (after the first) trying to fall asleep. Dh and I sat in the ER parking lot while I drank the preps because four minutes after taking the first sips, the reaction hit me like a mack truck and we didn't know what would happen. I've had bad shaking spells before, though usually didn't know the cause, and have been to the ER for it before and since I learned I wouldn't die from it, didn't bother going into the ER this time. But it sure was scary and I would love to know why it happened!

[HyperPOTS8]

I had a glc of 46 on my electrolyte panel (done since I am on Florinef). I felt fine. I have also had glc 200's prior to dx on more than one occasion when feeling very ill from POTS (in the ED or clinic). Catecholamines are "insulin counter regulatory hormones," meaning that they counteract insulin to increase your glucose during times of stress (when the catecholamines are supposed to be released). I believe the hypoglycemia in those of us with hyperPOTS is then due to a release of insulin to counteract the high glucose from the excess catecholamines.

[frustratedmother]

PLEASE- does anyone have a doctor that will recognize this blood sugar issue?! I have a 14 year old daughter with Ehlers Danlos and severe hypoglycemia since birth (kept 10 days in the hospital post birth because she kept crashing!) She wants to go to high school like other kids (been home schooled because of it). I can't find a doctor in east TN that recognizes this. In order to go to school she will need a continuous glucose monitor prescription and a permission script to eat in the classroom. All I get is lectures about a low carbohydrate meal and regular eating.  She can crash 20 minutes after the "perfect" meal one day and on another day that meal keep her stable for 4 hours. If she snacks all day long it INCREASES her risk of cycling. If I get another lecture designed for diabetics I swear I may hit the next doctor!! My daughter just wants to go to school like other kids. I need to find a doctor who is familiar with this condition. We will travel where ever we have to go in order to finally get a doctor who gets it.