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Hi all. I hope everyone is doing well and finding their answers.
I’ve been struggling the past few years, and my situation is not as straight forward and a bit complicated. I’m hoping that by joining the forum, I’ll be able to get myself pointed in the right direction, find some answers and ultimately better my life.
I will try to cliff notes this as best as possible, but here’s my history:
Always had issues with fatigue, anxiety, depression, etc. Medication helped for a while but I started having really bizarre symptoms about 4 years ago that were horrifying but so vague, I was having trouble getting a diagnosis. (Fatigue, dizziness, weakness, anxiety, DPDR, tremors, etc.) To be honest, to this day, I don’t really know what is happening, or what multiple things are happening, but I do know at this point a huge trigger is my blood sugar.
About four years ago, I started having a lot of issues eating. As soon as I ate, my heart rate would jack-up, I’d feel sick, dizzy, and then ultimately absolutely exhausted afterwards as it “settled down”. Got tested for a million things including POTS, Lyme, vitamin deficiencies, stomach issues/bacteria, etc. All came back “normal”.
So I lived this way for a while. I was having severe acid reflux and ultimately had surgery to redirect my stomach (same as gastric bypass) about two years ago. The acid reflux resolved but as you can guess, the rest did not, and now everything was worse. (I never considered it being an issue because medical professionals were telling me it was not blood sugar related, as all my test and fasting came back ok, so I just trusted them).
Now I’m at a point where I feel like I’m going to lose my life. I am constantly tired, brain fog, and have severe anxiety, depression and dissociation. This was all *drastically* made worse by the fact that they put me on Xanax and antidepressants back when this started, and I had *severe* withdrawal when they pulled me off quickly. The medications were having a paradoxical effect on my body, especially my CNS, after a while and it was a lose-lose situation. Since then, almost every system has been affected. It’s my understanding that it can take years for the body and brain to regrow the damage done from psychiatric meds, and several affects the limbic and endocrine systems, which is what I believe is going on largely.
So, I have several things, if not all, I believe this could be, but don’t know. My current issue is basically that I have a baseline of just feeling like ****. I eat, and then it’s like a downhill slope from there. Carbs and sugars made it far worse, but I seem to get it with anything I eat. Once my blood sugar goes up, even ten, twenty points, it’s like I’m done for the day.
The odd thing is: rarely does my blood sugar go into severe hypo or hyper. Fasting levels are totally normal, yet I feel horrible. I feel a tiny bit better when I eat, for a short period, but often the act of eating seems to fire off my nervous system and make me anxious and severely fatigued. And when my blood sugar drops…it feels like I’m dying. As in, literally. It feels like I’m on a boat, I feel half asleep, can’t think, and have severe muscle weakness and agitation both physically and mentally. Sometimes I’ll start crying for no reason or feel incredibly angry. The doctors diagnosed me with reactive hypoglycemia, which makes sense with bypass surgery/dumping syndrome, but I had this for about two years before that as well.
I also don’t know if I have “actual” hypoglycemia since my numbers rarely fall below 70. It seems like my body just has an extreme reaction to *any* change in blood sugar, and more so to a drop, even if it’s still in normal numbers.
I feel completely lost. I want my life back. I don’t know the cause of all this or how to make it better. This “eat 8-9 times a day” isn’t logical and doesn’t really help, and I almost feel more tired because my body is *constantly* digesting. I get mixed messages on what to eat, how to eat, etc. I would like to try keto but am scared because if my fasting levels at 80-90 make me feel crummy, would that mean I need more carbs? But then how do I stop the roller coaster?
Doctors are no help and keep repeating the same tests and giving me the same advice, which is just Pinterest style charts of eating small meals more frequently, which doesn’t help. My body reacts to even the smallest changes.
I recently had vitamin levels checked and all were within normal range. A few on the lower end, but I’ve felt this way in the past when they were higher.
Some recent testing I had done (December) if it helps:
1. Insulin Antibodies (<0.4 u/ml)
2. Glutamic Acid Decarboxylase Antibodies (<5.0 iu/ml)
3. Fasting glucose level: 89
4. Thyroid Stim. Hormone (1.38 uiu/ml)
5. Insulin-Like Growth Factor 1 (141 ng/ml)
6. T3 (98 ng/dl)
7. ACTH (11 pg/mL)
8. HbA1c (4.7%)
9. EAG (88 mg/dl)
10. Insulin 4.9 uU/ml)
The one test I repeatedly get back as almost double or triple the levels is cortisol. I have almost severe panic in the morning with high cortisol levels, and then afternoon and night are in normal ranges. I don’t have any symptoms of Cushing’s or related conditions. I have heard that withdrawal can cause this imbalance in the body as well.
I have no idea what’s going on other than I’ve been told I have reactive hypoglycemia, possible dumping syndrome, and given basic info from doctors about diet that isn’t helping. I don’t understand why I’m having hypoglycemic symptoms when my levels are in the normal range. The drop/coming down is by far the worst and renders me bedbound at times.
I am currently 35, female, weigh 130 lbs at 5'5".
Thank you all for your time if you read this. Please help.
I’ve been struggling the past few years, and my situation is not as straight forward and a bit complicated. I’m hoping that by joining the forum, I’ll be able to get myself pointed in the right direction, find some answers and ultimately better my life.
I will try to cliff notes this as best as possible, but here’s my history:
Always had issues with fatigue, anxiety, depression, etc. Medication helped for a while but I started having really bizarre symptoms about 4 years ago that were horrifying but so vague, I was having trouble getting a diagnosis. (Fatigue, dizziness, weakness, anxiety, DPDR, tremors, etc.) To be honest, to this day, I don’t really know what is happening, or what multiple things are happening, but I do know at this point a huge trigger is my blood sugar.
About four years ago, I started having a lot of issues eating. As soon as I ate, my heart rate would jack-up, I’d feel sick, dizzy, and then ultimately absolutely exhausted afterwards as it “settled down”. Got tested for a million things including POTS, Lyme, vitamin deficiencies, stomach issues/bacteria, etc. All came back “normal”.
So I lived this way for a while. I was having severe acid reflux and ultimately had surgery to redirect my stomach (same as gastric bypass) about two years ago. The acid reflux resolved but as you can guess, the rest did not, and now everything was worse. (I never considered it being an issue because medical professionals were telling me it was not blood sugar related, as all my test and fasting came back ok, so I just trusted them).
Now I’m at a point where I feel like I’m going to lose my life. I am constantly tired, brain fog, and have severe anxiety, depression and dissociation. This was all *drastically* made worse by the fact that they put me on Xanax and antidepressants back when this started, and I had *severe* withdrawal when they pulled me off quickly. The medications were having a paradoxical effect on my body, especially my CNS, after a while and it was a lose-lose situation. Since then, almost every system has been affected. It’s my understanding that it can take years for the body and brain to regrow the damage done from psychiatric meds, and several affects the limbic and endocrine systems, which is what I believe is going on largely.
So, I have several things, if not all, I believe this could be, but don’t know. My current issue is basically that I have a baseline of just feeling like ****. I eat, and then it’s like a downhill slope from there. Carbs and sugars made it far worse, but I seem to get it with anything I eat. Once my blood sugar goes up, even ten, twenty points, it’s like I’m done for the day.
The odd thing is: rarely does my blood sugar go into severe hypo or hyper. Fasting levels are totally normal, yet I feel horrible. I feel a tiny bit better when I eat, for a short period, but often the act of eating seems to fire off my nervous system and make me anxious and severely fatigued. And when my blood sugar drops…it feels like I’m dying. As in, literally. It feels like I’m on a boat, I feel half asleep, can’t think, and have severe muscle weakness and agitation both physically and mentally. Sometimes I’ll start crying for no reason or feel incredibly angry. The doctors diagnosed me with reactive hypoglycemia, which makes sense with bypass surgery/dumping syndrome, but I had this for about two years before that as well.
I also don’t know if I have “actual” hypoglycemia since my numbers rarely fall below 70. It seems like my body just has an extreme reaction to *any* change in blood sugar, and more so to a drop, even if it’s still in normal numbers.
I feel completely lost. I want my life back. I don’t know the cause of all this or how to make it better. This “eat 8-9 times a day” isn’t logical and doesn’t really help, and I almost feel more tired because my body is *constantly* digesting. I get mixed messages on what to eat, how to eat, etc. I would like to try keto but am scared because if my fasting levels at 80-90 make me feel crummy, would that mean I need more carbs? But then how do I stop the roller coaster?
Doctors are no help and keep repeating the same tests and giving me the same advice, which is just Pinterest style charts of eating small meals more frequently, which doesn’t help. My body reacts to even the smallest changes.
I recently had vitamin levels checked and all were within normal range. A few on the lower end, but I’ve felt this way in the past when they were higher.
Some recent testing I had done (December) if it helps:
1. Insulin Antibodies (<0.4 u/ml)
2. Glutamic Acid Decarboxylase Antibodies (<5.0 iu/ml)
3. Fasting glucose level: 89
4. Thyroid Stim. Hormone (1.38 uiu/ml)
5. Insulin-Like Growth Factor 1 (141 ng/ml)
6. T3 (98 ng/dl)
7. ACTH (11 pg/mL)
8. HbA1c (4.7%)
9. EAG (88 mg/dl)
10. Insulin 4.9 uU/ml)
The one test I repeatedly get back as almost double or triple the levels is cortisol. I have almost severe panic in the morning with high cortisol levels, and then afternoon and night are in normal ranges. I don’t have any symptoms of Cushing’s or related conditions. I have heard that withdrawal can cause this imbalance in the body as well.
I have no idea what’s going on other than I’ve been told I have reactive hypoglycemia, possible dumping syndrome, and given basic info from doctors about diet that isn’t helping. I don’t understand why I’m having hypoglycemic symptoms when my levels are in the normal range. The drop/coming down is by far the worst and renders me bedbound at times.
I am currently 35, female, weigh 130 lbs at 5'5".
Thank you all for your time if you read this. Please help.