Wondering if anyone else has had issues like mine. I realized reading other people’s posts that I was way behind on how much I could eat. I am still under 900 calories a day. I get horribly sick when I try to eat more. Over the last few months some of my pre existing conditions have suddenly gotten a lot worse and I have developed severe reactive hypoglycemia, with my blood sugars dropping as low as 32. After visiting several doctors and specialists a few who told me it was all in my head it was determined that I was slowly starving to death. They said my stomach pouch had not expanded like it should have and some of my organs were starting to shut down. They said it’s rare side effect but it does happen. They now have me eating every two hours even at night. Due to everything I was put out of work on STD. I feel so completely on my own with this and just wondered if anyone else has heard of anyone dealing with this.

1 hour ago, Kat said:

and some of my organs were starting to shut down

um, if your doctors determined this, why are you not admitted to hospital??????

1 hour ago, Kat said:

Wondering if anyone else has had issues like mine. I realized reading other people’s posts that I was way behind on how much I could eat. I am still under 900 calories a day. I get horribly sick when I try to eat more. Over the last few months some of my pre existing conditions have suddenly gotten a lot worse and I have developed severe reactive hypoglycemia, with my blood sugars dropping as low as 32. After visiting several doctors and specialists a few who told me it was all in my head it was determined that I was slowly starving to death. They said my stomach pouch had not expanded like it should have and some of my organs were starting to shut down. They said it’s rare side effect but it does happen. They now have me eating every two hours even at night. Due to everything I was put out of work on STD. I feel so completely on my own with this and just wondered if anyone else has heard of anyone dealing with this.

I'm sorry you're going through all this, especially since like most of us you went through surgery to become healthier.

As far as the "under 900 calories" at 1 1/2 years out, I'm at at 800 at 15 months out myself. I've even asked about increasing my calories at my 12 month checkup having seen most ppl on these forums discuss that they've been put on 1200 calories a day at this point in the journey and I was told I could maybe add 100 calories but they were very hesitant about it. Now you have me worried.

What symptoms are you experiencing? Currently, I have no energy, I feel like I'm dragging my legs and feet... I'm grumpy most of the time and I've started getting nerve or some kind of pain in my right armpit area... My joints ache was just thinking arthritis, I've been very hard on my body with 14 years of gymnastics and being in a physical confrontation job with ppl twice my size..headaches.. . could you if you don't mind share what you've been experiencing? Luckily my co-morbidities have all gone away so far..

Thank you for your post, hopefully I can address this with my GP next month! I hope you start to feel better soon I know this isn't what you signed up for. I take it your bariatric clinic kept you low calorie too?

Edited October 31, 20241 yr by BlondePatriotInCDA

MS.S unfortunately that comes down to healthcare and insurance don’t have enough coverage and can’t afford to pay out of pocket so they are doing what they can

BlondePatriotinCDA- I have been tracking my food and beverages until yesterday I was eating 500-600 calories a day for the last year waking up at night is the only way I am able to increase my intake. My symptoms aside from low calorie intake was severe hair loss, extreme fatigue like I could only be awake for a few hours at a time. I have epilepsy with medication I typically have 1 seizure a month, suddenly I was having severe a week. My mood also changed I am usually a very happy bubble person and my thoughts and emotions started going to a very dark place. I lost the ability to think clearly, could not even watch a 30 min show without losing g focus. I was snapping at everyone and I had a general unwell feeling and I started to get back pain and upper stomach pain. Then my blood pressure dropped low.

1 hour ago, Kat said:

BlondePatriotinCDA- I have been tracking my food and beverages until yesterday I was eating 500-600 calories a day for the last year waking up at night is the only way I am able to increase my intake. My symptoms aside from low calorie intake was severe Hair loss, extreme fatigue like I could only be awake for a few hours at a time. I have epilepsy with medication I typically have 1 seizure a month, suddenly I was having severe a week. My mood also changed I am usually a very happy bubble person and my thoughts and emotions started going to a very dark place. I lost the ability to think clearly, could not even watch a 30 min show without losing g focus. I was snapping at everyone and I had a general unwell feeling and I started to get back pain and upper stomach pain. Then my blood pressure dropped low.

Wow, I seem to have a good portion of those symptoms, especially "was snapping at everyone and I had a general unwell feeling and I started to get back pain" Then my blood pressure dropped low. Along with extreme fatigue and hair loss.

I have all of the above.

Thank you for sharing, I think I need to bring this up when I go in for my check up. Thank you!

I really hope you start to get better soon!

I also had low white blood cell count before I forget, memory issues have also been a problem

1 hour ago, Kat said:

I also had low white blood cell count before I forget, memory issues have also been a problem

Thank you!!! I really appreciate it.

Have you seen a bariatric specialist? It sounds like something other than a small pouch to me
I am over 6 years out, but I still have a lot of restriction. My capacity for the last 5+ years has held steady at about 4 oz. So a small frozen burrito, a taco bell taco, etc. But that does not restrict the amount I can eat in a day, and certainly not necessary to stay up at night. Is there a reason you can't eat slider foods, calorie dense foods, eat more frequently?

To be truthful I have seen everyone I can with the insurance coverage I have and just looking for support. I am too tired to justify things to anyone else, even if they are asking with good intentions. I know it’s a rare side effect but it does happen and just like you to many doctors don’t believe it.

https://pubmed.ncbi.nlm.nih.gov/9717429/

If you have been diagnosed with this, I don't understand why healthcare coverage is an issue. What insurance will cover a bypass and a panni, but not organ failure?

Because I have been but on leave and they are blaming it all my epilepsy and heart failure and please don’t respond again I want support not to defend my self here I already feel alone

It's not that we're trying to pick on you or force you to justify yourself. But honestly, what you're saying doesn't make sense. How is it your insurance covered your surgery and a panni but won't cover you for organ failure? How are you not in the hospital now? If your organs are shutting down, no way would they have just sent you home. I work in healthcare, and we've sent people to the hospital for way less than that. I would suggest eating carb and calorie dense slider foods. Mashed potatoes are great for that. Add sour cream and butter. There's a lot of stuff you can have that will add weight. I've been struggling to get my weight up, but adding protein shakes, avocado on nearly everything I can, slider foods, etc... And eat every 2-3 hours during the day and the evening before you go to bed. You shouldn't have to get up through the night to eat.

I struggled to eat enough to slow my losing though not as much as you are. I reached goal at 6 months and was barely eating 900 calories. It took another year to get to about 1300 calories and for my weight loss to stabilise. To increase my intake I was eating all day long or it certainly felt that way. I had three meals and 5 or 6 snacks, predominately in the afternoon and evening. It took another year +/- to get to around 1600 calories which is about what I eat now to continue to pretty much maintain that initial stabilised weight.. And yes I still snack but only 3 or 4 times a day now to meet my caloric needs. So, yes, some of us do take time to get those calories up. But you are a more extreme case.

If this has happened in rare other cases, what did they say what treatment was used in those cases? Can they stretch your pouch via an endoscopy or balloon? Have they suggested you incorporate those nutrient dense, high calorie smoothies like Ensure used for those with digestive and eating issues?

On 10/31/2024 at 18:18, Kat said:

To be truthful I have seen everyone I can with the insurance coverage I have and just looking for support. I am too tired to justify things to anyone else, even if they are asking with good intentions. I know it’s a rare side effect but it does happen and just like you to many doctors don’t believe it.



https://pubmed.ncbi.nlm.nih.gov/9717429/

People aren’t responding with questions because they don’t believe you, rather because more information about the situation gives us more to go off of in order to give you good advice. This is in general a kind and helpful community with lots of folks with many years experience under their belts.

On 10/31/2024 at 9:18 PM, Kat said:

To be truthful I have seen everyone I can with the insurance coverage I have and just looking for support. I am too tired to justify things to anyone else, even if they are asking with good intentions. I know it’s a rare side effect but it does happen and just like you to many doctors don’t believe it.

https://pubmed.ncbi.nlm.nih.gov/9717429/

hi again, the article you quoted is a good resource to share with your medical team. if you are suffering from the same symptoms outlined in said article is *should* be pretty clear that you will need intervention. now you didn't mention frequent vomiting, but i'm going to assume this is an issue as you referenced the article, yes?

run, do not walk, to your emergency room if your organs are failing. insurance coverage will be a non-issue as organ failure would be classified under emergent care! seriously, we are talking life or death, man.

i get that you are looking for support, but really, what you describe requires PROFESSIONAL MEDICAL support that is waaaaay beyond the scope of these public forums.

please take care.