Seeking Advice Carb Related Symptoms

[Blackberry82]

Hello,

This is my first post and I’m posting on behalf of my Mum, who has been suffering with a wide range of symptoms since 2019. Her symptoms first started after a long course a steroids for fibromyalgia, she became so ill that my Husband and I had to move in with her for a couple months. She had a full range of bloods done, urine output test twice to rule out an adrenal twice and an abdominal scans, all thankfully negative.

We consulted a private endocrinologist, who has been wonderful and diagnosed type2 diabetes. But, her numbers have always been good, but there definitely a link between sugar/carbs and her symptoms and I’m hoping there are people on here that can offer their own experiences.

It was previously a intermittent problem, but now seems to be continuous to varying degrees. She follows a strict low carb diet and now lives on such a restricted range of foods in an attempt not to aggravate ‘it’. She follows a max 45g carb allowance for small lunches and dinners, as GP advised and cut out sugar. She normally feels ok before breakfast, but when she is experiencing excessive urination is bad in the mornings before food.

She has been waiting for an extended glucose test, since before the pandemic, but not sure this would be of much help according to the endocrinologist. Any advice that she can try to help herself in the meantime would be appreciated, as her quality of life is non existent at the moment.

When she is like this her symptoms include:
- extreme excessive urination
- urination immediately after drinking
- causing serious dehydtaion- admitted twice with it
- skin sticks together despite drinking excessively when like this and having low sugar/
- low carb hydration tablets
- extremely fast heart rate- over 200 when admitted last time (normalised with IV fluids)
- describes feeling like she is dying
- bad headache that she describes the her head will explode
- shaky,dizzy and feeling faint
- always feels hungry, even after meals
- weight loss
- extreme fatigue/constant yawning
- brain fog/blurry vision
- persistent nausea even when excessive urination stops
- Feeling like she has a temperature (normal temp)

When she was last admitted they suspected diabetes insipidus, but the endocrinologist isn’t convinced as ordinarily she doesn’t drink a lot. She is doing fluid/food diaries and will be booking another consultation once the bloods are back. She is also going to restart her glucose readings to see if anything has changed.

Any input would be greatly appreciated. You can literally see the difference in her visually, she’s like a completely different person when she’s like this. She needs help, as its becoming more prolonged and she gets weaker with every episode.

Many Thanks in advance.

 

[Inka]

Hi @Blackberry82 🙂 Sorry your mum is struggling with all those problems. It sounds like their might be something else going on in addition to her blood glucose/diabetes.

I presume she’s had tests to rule out conditions connected with her fast heart-rate? Frequent urination can be linked with that.

Is there any particular time she has these episodes? Eg standing up, lying down, etc.

As far as her blood glucose goes, I’d be doing regular testing of that so at least you’d know whether that was implicated in any way. I’d also test when she was having an episode.

 

[rebrascora]

Hi and welcome. So sorry your mother is having these episodes. It sounds awful.
Testing her BG levels first thing on a morning before she gets out of bed and then when these episodes happen would be a good idea. I think that you are saying it happens before she has breakfast rather than after?? If so, does she have anything to drink before the episodes start?

Obviously a lot of the symptoms sound like diabetes and diabetes insipidus did cross my mind but if it is only occasional then maybe not although you suggest that the frequency of the episodes is increasing.

The other thing that crossed my mind was reactive hypoglycaemia but that would generally cause an episode after eating and what happens is that the blood glucose spikes very high after eating (particularly carb rich foods) and then plummets as the beta cells in the pancreas over produce insulin causing the person to suffer both hyperglycaemia and then shortly after hypoglycaemia. If these episodes happen before breakfast then it is unlikely to be that as food triggers the cycle to start.

 

[Inka]

POTS was in my mind above, if we’re ok to mention possibilities. The fast heart-rate, urination, etc, would fit with that. It might also explain the feeling of heat she has.

 

[mikeyB]

Postural Orthostatic Tachycardia Syndrome is a possibility if the symptoms appear or get worse when sitting up or standing. That said, other symptoms described would fit, as would thirst. One of the treatments for the condition is a high fluid intake, and it’s interesting that IV fluids helped.

No blood tests can help with the diagnosis, it is diagnosed entirely on clinical findings. An ECG should confirm normal but rapid sinus rhythm. Also, there is no treatment for it apart from assiduously keeping up a high fluid intake, at least 2-2.5 litres per day. Any fluid will do, water, tea, sugar free soft drinks. Even beer.

It’s nothing to do with Diabetes. The good news is that it tends to get better on its own after a time. Until it does, it’s just the fluids. The other good news is generally it isn’t life threatening, though it can certainly feel like it is.

 

[Blackberry82]

Thanks All,
@Inka Her heart is fine, she was previously under the Brompton for an irregular heartbeat. This is not related and she was reviewed by cardiology during her last admission. It was the dehydration, as a result of the urination that brought it on. Researching, I also thought of POTS

@rebrascora it is 100% after food but as this is now virtually a permanent thing it's so hard to pinpoint it when she is doing everything she possibly can to get well. I also think reactive hyperglycaemia is also a possibility, but we seem to be going round in circles.

She's awaiting a new glucose monitoring kit, but her fasting glucose with her old machine yesterday before the blood test was 6.7

She will definitely start doing regular monitoring, so again we can try and identify trends with specific foods. But, seems there are certain carbs she just cannot tolerate.

The urination is also key to how severe the symptoms are and that is caused by some reaction to the carbs.

 

[Blackberry82]

Postural Orthostatic Tachycardia Syndrome is a possibility if the symptoms appear or get worse when sitting up or standing. That said, other symptoms described would fit, as would thirst. One of the treatments for the condition is a high fluid intake, and it’s interesting that IV fluids helped.

No blood tests can help with the diagnosis, it is diagnosed entirely on clinical findings. An ECG should confirm normal but rapid sinus rhythm. Also, there is no treatment for it apart from assiduously keeping up a high fluid intake, at least 2-2.5 litres per day. Any fluid will do, water, tea, sugar free soft drinks. Even beer.

It’s nothing to do with Diabetes. The good news is that it tends to get better on its own after a time. Until it does, it’s just the fluids. The other good news is generally it isn’t life threatening, though it can certainly feel like it is.

Thanks for the reply. I also researched POTS as like you said has overlapping symptoms, but she does drink in excess of that when she's bad. I'll look into this more, as I'm not sure if this just flares up. I looked at so many things with overlapping symptoms, but come back to diabetic related causes

 

[Blackberry82]

As that's the only solid starting diagnosis. Thanks for your time, much appreciated

 

[rebrascora]

Please keep us posted,
if it is diabetes related the BG readings before she has a meal, 2 hours after and when she has these episodes should highlight the problem and recording her readings in a diary along with a record of what she ate for each meal she tests and what she ate before an episode in particular and how long after eating the episode happened will all be very helpful..

 

[rebrascora]

Out of curiosity, does she drink coffee on a morning and if so, is it normal or decaf? The reason I ask is that I have started weeing a lot on a morning after my coffee (can't seem to keep fluids in me) and if I have 2 coffees my heart races.
Just wondering if your Mum might be having an extreme reaction to caffeine?