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Undiagnosed and need help

O

olivebuttercup

Member
Messages
6
Hi everyone,
So I don’t have diabetes and am undiagnosed. But feel my symptoms are close enough that this might be the place to post my question. I feel at the end of my rope and would love any info if anyone has any.

My symptoms are similar enough to diabetes or some sort of metabolic disease that I think it’s worth investigating but I’m losing hope in ever finding out what’s wrong. I’ve been sick for 13 years. My main symptoms are heart related but there’s so much more.

Symptoms: my heart palpitates and races if I eat any carb. I mean if a banana so much as touches my tongue my heart starts skipping beats. If I drink a sip of juice...heart palpitates. If I drink diet soda: no palpitation. I just ate breakfast...eggs I was fine, bites of potato and my heart palpitates and skipped beats. About fifteen minutes after eating my heart will race very badly with chest pains for about half an hour. My blood pressure during these times is generally very low. But I feel very generally unwell.

I go through separate periods where I become very, very ill. I believe in those times I am in Ketoacidosis. The reason is because my symptoms match it perfectly and I am off the charts with ketones in my urine. I am not just feeling unwell...I feel like I’m knocking on death’s door...I can’t get enough water to the point I’m panicking but I stop peeing even though I’m drinking litre after litre. My urine at that point is maybe a couple ounces in a day and it is bright orange and almost looks syrupy. My blood pressure raises in this time. My heart won’t feel great but it isn’t as bad as when I’m not getting these symptoms.

The confusing part is my glucose is always fine! E.r doctors assume I’m a diabetic when I come in because of ketones and symptoms but when glucose comes back normal they scratch their head and send me home on deaths door. I’m so confused and feel hopeless. I get many other symptoms but it’s just too much to type...I’m unfunctional right now. If I eat or move my body my heart goes insane and I feel like I’m dying but doctors aren’t helping me. Does this sound like anyone’s experience?? Thank you for listening!
 
olivebuttercup said:
Hi everyone,
So I don’t have diabetes and am undiagnosed. But feel my symptoms are close enough that this might be the place to post my question. I feel at the end of my rope and would love any info if anyone has any.

My symptoms are similar enough to diabetes or some sort of metabolic disease that I think it’s worth investigating but I’m losing hope in ever finding out what’s wrong. I’ve been sick for 13 years. My main symptoms are heart related but there’s so much more.

Symptoms: my heart palpitates and races if I eat any carb. I mean if a banana so much as touches my tongue my heart starts skipping beats. If I drink a sip of juice...heart palpitates. If I drink diet soda: no palpitation. I just ate breakfast...eggs I was fine, bites of potato and my heart palpitates and skipped beats. About fifteen minutes after eating my heart will race very badly with chest pains for about half an hour. My blood pressure during these times is generally very low. But I feel very generally unwell.

I go through separate periods where I become very, very ill. I believe in those times I am in Ketoacidosis. The reason is because my symptoms match it perfectly and I am off the charts with ketones in my urine. I am not just feeling unwell...I feel like I’m knocking on death’s door...I can’t get enough water to the point I’m panicking but I stop peeing even though I’m drinking litre after litre. My urine at that point is maybe a couple ounces in a day and it is bright orange and almost looks syrupy. My blood pressure raises in this time. My heart won’t feel great but it isn’t as bad as when I’m not getting these symptoms.

The confusing part is my glucose is always fine! E.r doctors assume I’m a diabetic when I come in because of ketones and symptoms but when glucose comes back normal they scratch their head and send me home on deaths door. I’m so confused and feel hopeless. I get many other symptoms but it’s just too much to type...I’m unfunctional right now. If I eat or move my body my heart goes insane and I feel like I’m dying but doctors aren’t helping me. Does this sound like anyone’s experience?? Thank you for listening![/QUOTE ]

Hi @olivebuttercup Welcome to the Forum. I'm not in any position to diagnose or offer medical advice, but reading the two links below might be a start. In you shoes I would certainly ask your doctor for a urinalysis, just to make sure there is nothing awry. Have they done this? If not, I can't understand why they are not helping. Was this at a Hospital or at a GP surgery? In either case you can refer your problem to the practice manager or to PALS who investigate hospital complaints. I would only do this is you have not undergone blood tests, urinalysis and blood pressure check. Good luck!
https://www.disabled-world.com/calculators-charts/urine-facts.php
https://www.healthline.com/health/h...tations-after-eating#when-to-get-medical-help
Click to expand...
 
If the blood tests show your glucose level are normal then you don't have diabetes. The symptoms that you are getting sound pretty severe but would not really be typical of normal diabetes symptoms it sounds more like it could be heart related. We can't really recommend anything here while your problems are undiagnosed. I think you need to see your doctor again or even if you feel very ill perhaps go to A&E Hope you can get it sorted out soon
 
I would go to hospital or call 111.
Otherwise see your gp tomorrow
 
I’ve been to my doctor...I’ve been to the hospital so many times. They never test further than the general tests. It’s so frustrating. I can’t find anything online that matches my symptoms but I feel it’s metabolic due to my reaction to eating carbs of any kind and ketones in urine.
 
Hi @olivebuttercup ,

Welcome to the forum.

We can't diagnose your syptoms online here. That's the job for your HCPs..

OK, so it seems you get an adverse reaction to carbs. How long does these symptoms actually take to occur from the first bite..?

Could you give a brief breakdown of your diet.. What you eat to avoid these symptoms..?

Also tagging in @bulkbiker & @DCUKMod to say hi.
 
I'd go to a new doctor or go to a different hospital's emergency department. Get more opinion from the medicals. Maybe it's an allergy. For symptoms as serious as yours, I would not rely on self-google-diagnosis.
 
olivebuttercup said:
Hi everyone,
So I don’t have diabetes and am undiagnosed. But feel my symptoms are close enough that this might be the place to post my question. I feel at the end of my rope and would love any info if anyone has any.

My symptoms are similar enough to diabetes or some sort of metabolic disease that I think it’s worth investigating but I’m losing hope in ever finding out what’s wrong. I’ve been sick for 13 years. My main symptoms are heart related but there’s so much more.

Symptoms: my heart palpitates and races if I eat any carb. I mean if a banana so much as touches my tongue my heart starts skipping beats. If I drink a sip of juice...heart palpitates. If I drink diet soda: no palpitation. I just ate breakfast...eggs I was fine, bites of potato and my heart palpitates and skipped beats. About fifteen minutes after eating my heart will race very badly with chest pains for about half an hour. My blood pressure during these times is generally very low. But I feel very generally unwell.

I go through separate periods where I become very, very ill. I believe in those times I am in Ketoacidosis. The reason is because my symptoms match it perfectly and I am off the charts with ketones in my urine. I am not just feeling unwell...I feel like I’m knocking on death’s door...I can’t get enough water to the point I’m panicking but I stop peeing even though I’m drinking litre after litre. My urine at that point is maybe a couple ounces in a day and it is bright orange and almost looks syrupy. My blood pressure raises in this time. My heart won’t feel great but it isn’t as bad as when I’m not getting these symptoms.

The confusing part is my glucose is always fine! E.r doctors assume I’m a diabetic when I come in because of ketones and symptoms but when glucose comes back normal they scratch their head and send me home on deaths door. I’m so confused and feel hopeless. I get many other symptoms but it’s just too much to type...I’m unfunctional right now. If I eat or move my body my heart goes insane and I feel like I’m dying but doctors aren’t helping me. Does this sound like anyone’s experience?? Thank you for listening!
Click to expand...
Sounds more like a thyroid problem to me, actually. (I have Hashimoto's myself, and this sounds rather familliar). If you're avoiding carbs because they make you feel this way, you may be in ketosis, not ketoacidosis. (One is fine, the other isn't, but both will show up with ketones in pee and bloodstream) So that might explain the ketones, and could thus be a red herring. I did find this after a google, maybe that'll help?; https://www.webmd.com/heart-disease/guide/what-causes-heart-palpitations

In any case, do NOT give up on this. It's severely affecting your quality of life. Find a new doc and don't let go of this. Get foodintolerances checked, your heart, thyroidfunction, what have you. Maybe keep mum about ketones as they might not look any farther than diabetes because of that. *If* you're eating around 20 grams of carbs a day or less, you enter ketosis. That's perfectly okay, and won't harm you. Except for when a doc gets stuck on it and won't take uou seriously because ypu don't fit their ideas and profile.

Wishing you all the best!!!
Jo
Ps; foodintolerances can be tested for privately I believe, just in case the doc's a let down!
 
Thanks for replies everyone...

The ketones appear even when I eat a lot of carbs. The reaction with my heart to food happens the second a carb hits my tongue. I’ve been in emergency room hooked up to heart machines and ate a banana to show them my reaction to eating. My thyroid always comes out fine. I am trying not to give up but I’ve seen so many doctors and they have all been subpar. Which is why I’m writing on a diabetes forum because I know if anyone would know about metabolic disorders or ketones it would be you...in hopes maybe someone has been through something similar so I can ask a doctor to test further for it. I will still go to emergency rooms and doctors but because that isn’t giving me answers I’m desperate and am just hoping for a miracle really. Oh also I sometimes have high liver enzymes. I’m 36 yr old female if this means anything. I got sick when I was 23.
 
Oh I also have been to 2 allergists and can’t find anything. I’ve cut out foods. I’ve done a lot of things. Nothing seems to make a difference (magnesium or potassium pills make it worse but my electrolytes always come up normal in hospital).
 
olivebuttercup said:
I can drink diet pop with no reaction...and I tried eggs today and no palpitations. When I put potato in my mouth I started palpitating.

It’s SO weird.
Click to expand...


I always knew food affected it but didn’t clue in it was only carbs until this week when I realized DIET pop caused no reaction so I started trying different things separately (carbs and proteins).
 
olivebuttercup said:
I always knew food affected it but didn’t clue in it was only carbs until this week when I realized DIET pop caused no reaction so I started trying different things separately (carbs and proteins).
Click to expand...
Well, you said it yourself; it's weird. And I have no proper answers for you, but... If you find you feel better when cutting carbs, a ketogenic diet might be a solution for you. Ketones on their own won't hurt you, so.... Maybe check dietdoctor.com? They have low carb and ketogenic meal ideas. There's more in life than eggs and diet soda, so you might find meals there that won't make you feel ill and you'd actually enjoy. For today: Enjoy any chicken/turkey/ham/whatever meat you're serving for christmas dinner, just stay away from the spuds. ;)

Merry Christmas, and I hope 2019 is a better year for you!
Jo
 
I know it is very distressing for you to feel like you do but it seems the medics are also struggling to find a reason why you are like you are when all your tests come back as normal at least that is positive. Has anyone ever suggested that perhaps you see a councillor or phycologist as you are so worried by your symptoms when no reason can be found for them is just making you worse. It is a vicious circle the more you worry the worse it becomes and talking to someone about it could help you to relax and then maybe the symptoms will ease
 
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