Wits end - any similar experiences?

[Edwardian Gentleman]

I posted here some time ago as I was worried about diabetes due to some symptoms but with BG levels in range.

Since then I have had another Test (the 3 month range one) and it is fine - no diabetes or pre-diabetes. When I do a finger prick test, same again - all is within range. e.g. 6.8 after lunch (sandwich, apple, biscuit).

However, I have the most incredible gnawing hunger all the time which is just off the scale now. It seems to be getting worse and worse. For example I am hungry 24/7. Breakfast of shredded wheat and 2 slices of thick toast and an apple. Do not feel full at all. Eat more and more toast, protein bar.... still not full or even remotely satiated. I know I could eat the whole thing again but will-power makes me move away from the kitchen.

This is getting to the point it is debilitating. I do not crave sugary food, but mainly carbohydrates. Bread is the one I keep going back for more of.... all the time. I could eat a whole load of bread in one sitting without too much difficulty and not feel full.

I am also thirsty at night - 1 litre of water is taken to bed each evening. I can get through it no problem (and of course means extra trips to the bathroom).... my mouth is incredibly dry all the time.

I have lost weight, not gained it despite this hideous over-eating. I do not have a recognised eating disorder - I do not 'void' or whatever it is called. I feel incredibly unhealthy now (I used to be fit and healthy)...possibly due to months of not caring what I eat, just that the quantities are high!

I have stopped drinking alcohol - I just seem to have lost the taste for it completely. Same goes for tea which I used to love - that is odd, perhaps a red-herring.

I am so sorry it this is an inappropriate forum for this post. I sort of at my wits end with this now. To have gnawing hunger 24/7 no matter what and how much is eaten is so awful. It ruins meal times, eating out - it ruins concentration levels and I just cannot get to the bottom of it. As mentioned it is ruining my health too.

My GP says not to worry, just eat when hungry! Well that would mean eating every single minute of the day and night....

Again, apologies if it is wrong to have posted here. I am trying various sources to try and get to the bottom this as. My only clue so far is that it is related to a nerve signal or thyroid issue.... as I am also experiences intolerance to both hot and cold temperatures along with a dry mouth....

Anyway thanks for your time...

 

[Rokaab]

However, I have the most incredible gnawing hunger all the time which is just off the scale now. It seems to be getting worse and worse. For example I am hungry 24/7. Breakfast of shredded wheat and 2 slices of thick toast and an apple. Do not feel full at all. Eat more and more toast, protein bar.... still not full or even remotely satiated. I know I could eat the whole thing again but will-power makes me move away from the kitchen.

I had something very similar to that caused by my undiagnosed coeliac disease (gluten-intolerance) at the time, in essence the gluten annoyed my system, so the villia (or something like that) in my colon decided to lie down flat and therefore I was absorbing very little in the way of nutrients from what I was eating, so basically I was suffering malnutrition - I was hungry all the time, and was eating 3-4 times what anyone else was and was still slowly losing weight over a number of years.

Have you had checks for any intolerances?
Your issue may not be that but it may be worth considering as a wild stab in the dark if there are no better ideas

 

[Edwardian Gentleman]

Thanks Rokaab.

 

[Lamont D]

Carbs beget carbs beget more carbs beget even more carbs!
you mentioned a lot of carbs. This is not good for anyone!
reduce your carbs to a minimum, eat more good fats to satiate you, instead of bread, eat some cheese!

 

[Ronancastled]

Yes @Edwardian Gentleman, The advice above from @Lamont D is correct
You'd probably need to wear a CGM to tell you this but you're riding the blood glucose rollercoaster

Ditch the carbs, think meat, salad, nuts, cheese, eggs, eat until you are full
Your brain has become hardwired to the addiction of carbs, get off the rollercoaster

Eat low carb meals tht will fill you longer & fuel you longer

I'll send on my Revolut for this consultancy
Good luck

 

[Edwardian Gentleman]

Thanks for all the info so far. In the best scenario the carbs issue would be the thing... I am craving carbs but would happily ditch them for the rest of my life if it sorted this out.

It is the sheer gnawing hunger that doesn't add up. To be able to wolf down an enormous pasta dish and not feel at all full during and after eating at any stage... so it is not waiting for the subsequent craving to happen - there is no let up.

I am more than happy to move to good fats, nuts, no bread or pasta etc, if that allowed me to feel full.... I know it won't though. I could eat a jumbo bag of mixed nuts, 1lb of cheese and a 5 egg omelette with low fat ham... and still feel hungry and completely empty.

It is getting to the point that I would do anything to feel full or satisfied after eating. I honestly feel like someone who has fasted for 24 hours immediately after eating a large fish and chips with vegatables.... and for the hours that follow. the hollow feeling is awful...

To try and put the feeling into context, imagine if you skipped breakfast and lunch whilst having a very physically demanding day... then by, say 5pm, a superb roast dinner was wafted under your nose! That is how I feel all the time, even after eating the roast :-(

This tends to lead to snacking all day long too.... the only way I know I have had enough is when I have eaten so much my belly is swollen and I feel nauseous ... but even then the hunger urge is still telling me to eat more.

As mentioned my weight is not affected upwards. I lost as stone (I couldn't afford to lose) early this year for no reason and it will not go back on despite my carb-fest :-(

 

[Rokaab]

As mentioned my weight is not affected upwards. I lost as stone (I couldn't afford to lose) early this year for no reason and it will not go back on despite my carb-fest :-(

And that's why (and the no rise in obvious blood sugar) I reckon it is something not related to diabetes

 

[lucylocket61]

how are your thyroid levels?

have you tried cutting out carbs to see if the craving goes - it can take a few weeks to go.

 

[Daibell]

Hi. Eat more fats and proteins. By fats I mean any fat type - don't worry about so-called good or bad. Your problem may be more complex than that but reducing the carbs should help.

 

[EllieM]

As mentioned my weight is not affected upwards. I lost as stone (I couldn't afford to lose) early this year for no reason and it will not go back on despite my carb-fest :-(

Can you get a referral to an endocrinologist ? Unexplained and unwanted weight loss is a serious issue that needs investigation and I suspect is above your GP's pay grade. To be honest, am not even sure if an endo is the right specialist here, but I would definitely push your GP to refer you to someone who might be able to explain your symptoms. Maybe keep a food diary to demonstrate to your GP that you are eating enough so that he/she takes your issues seriously?

Forum rules (no diagnosing), my own lack of knowledge and not seeing you in person mean I have no idea what is going on here, but there are lots of possibilities to look at - food intolerances, hormone issues, digestion issues .... ????

I hope you can get an answer as soon as possible. Lots of virtual hugs.

 

[Vanessa C]

This may help.. I was diagnosed in 1987 and have had many years of high HbA1c with a constant need to eat and eat and eat but never ever felt satisfied, similar to you. I have never eaten many carbs but possibly hidden ones I just didn't realise. Then I bought a CGM 5 years ago. Finally it showed me my sugars would go from 4 to 12 mmol even with only drinking 2 cups of tea with milk and then it would come back down so I didn't know... my basal needed changing. Once corrected, I could see if I kept my sugars under 11, I was no longer monster hungry. In fact, some days now I fast for a couple of days and only eat in the evening to reset. I can keep to between 6 and 8 mmol all day and have no hunger pangs at all. My HbA1c is now 6.9 but as soon as I indulge and my sugars go above 11 for a couple of hours I'm starving again. You really have to reset with a low carb program to get off the roller coaster.

 

[Edwardian Gentleman]

Thanks again everyone - this is a really friendly and helpful place to be. I am trying to cut the carbs - this is not easy. On the thyroid levels I had blood test. GP said all OK. I got the numbers. TSH 0.4 (this is low). T4 18.8 (this is normal - high).... so there is something there but the symptoms I am experiencing are so extreme so I have privately had to book an Endo. Sadly earliest is not for weeks.

The hunger is the worst of it - my goodness, today I literally climbing the walls trying not to eat every piece of bread, cracker, biscuit, apple, cereal in the house.... it's so rubbish to live like this. I don't think I can take another day like this. (no experience but I expect this is how a junkie feels going cold turkey!)

I am also freezing cold most of the time - goosebumps - this is opposite of what I read should happen with hyperthyroid! Struggling to keep warm in a perfectly warm house.

...I am also hyper .... a lot. By which I mean literally opening and closing kitchen cupboards (looking for food, of course) - this is so out of character and is driving me mad.

In my non-medical opinion, it feels like my metabolism, hormones, whatever are completely messed up - like someone has plugged a 240v supply directly into my system and left it there!

thanks all.....

 

[bulkbiker]

Thanks for all the info so far. In the best scenario the carbs issue would be the thing... I am craving carbs but would happily ditch them for the rest of my life if it sorted this out.

It is the sheer gnawing hunger that doesn't add up. To be able to wolf down an enormous pasta dish and not feel at all full during and after eating at any stage... so it is not waiting for the subsequent craving to happen - there is no let up.

I am more than happy to move to good fats, nuts, no bread or pasta etc, if that allowed me to feel full.... I know it won't though. I could eat a jumbo bag of mixed nuts, 1lb of cheese and a 5 egg omelette with low fat ham... and still feel hungry and completely empty.

It is getting to the point that I would do anything to feel full or satisfied after eating. I honestly feel like someone who has fasted for 24 hours immediately after eating a large fish and chips with vegatables.... and for the hours that follow. the hollow feeling is awful...

To try and put the feeling into context, imagine if you skipped breakfast and lunch whilst having a very physically demanding day... then by, say 5pm, a superb roast dinner was wafted under your nose! That is how I feel all the time, even after eating the roast :-(

This tends to lead to snacking all day long too.... the only way I know I have had enough is when I have eaten so much my belly is swollen and I feel nauseous ... but even then the hunger urge is still telling me to eat more.

As mentioned my weight is not affected upwards. I lost as stone (I couldn't afford to lose) early this year for no reason and it will not go back on despite my carb-fest :-(

Sit down in from of a 250g block of butter and see how much of it you can eat.
You will then appreciate the satiety of eating fat.

 

[NicoleC1971]

So sorry you are struggling with this. Although we would all love to be able to spend all day eating and not gain weight, it sounds uncomfortable and rather all consuming not to mention expensive!
Not diagnosing here but ask for a full thyroid panel from an expert when you get to see them. As I understand it some GPs don't have the expertise to know the best tests to order and how to interpret.
Your hunger is real so caused by something and nothing to do with calories ingested or excess carbs clearly! All our hormones are connected so if out of whack can produce disease.
From a the gastro specialist point of view if you were to cut out gluten by going low carb you would at least get an indication of whether the bloating is caused by intolerance or even coeliac disease.
Hope you get some answers.

 

[Rokaab]

Do note though if you do cut out any foods like gluten - then any tests for intolerances may show up as negative - for instance for the coeliac test they need you to have been eating gluten for at least a fair number of days beforehand

 

[Edwardian Gentleman]

Thanks again all. I am at the point now where I will try anything. I tried to go carb free yesterday.... I physically couldn't do it, so strong are the hunger / need to eat feelings. It's like as soon as the tiniest morsel of food is eaten something is triggered in me and I literally cannot stop without slamming the door on the kitchen and walking away (and that is incredibly hard to do). I know something is seriously wrong here - it's not just a craving, my brain/body is literally screaming out for more and more food. If I make a sandwich, it's gone before I get to the other room - I just cannot slow down or stop once I start.
g If it even put some of my lost weight back on, I'd be slightly happier, but it never does.

I have told my GP who is not interested as he has done a diabetes test in Jan and repeated that again in May and my thyroid, whilst on the upper end of the scale is within guideline limits, just.

I have told a Neurologist who cannot help or even seem to understand how desperate it can be - seems to think it is just an extra slice of toast here and there (i.e. what's the big deal?) no matter how strongly I describe this.

The only thing I do not enjoy scoffing at 100mph are sweet things or sweet drinks (including all alcoholic drinks and tea/coffee)... I did, somehow, end up eating a chocolate bar last night - it tasted foul to me. I used to love all of these things I suddenly despise now.

Anyway, I'll keep posting in various places and pursuing the medical people. I spoke to the people at BEAT (eating disorders) they cannot help as it is nothing they have heard of (unless it is classic binge eating - it is not).

I am so worried if this could be a blood sugar/pancreatic issue even though BG levels are OK... or, given I have also some other symptoms (heat AND cold intolerance - which is so horrid - I'm never comfortable), blurry vision and lots of numbness and tingling in my limbs and now hands suggests something is seriously out of kilter somewhere in my nervous system...

I know this is getting further off topic for the forum so I will respect that and keep plugging away elsewhere, but obviously if someone here has suffered from any of this (specifically the eating) and would be happy to share their experiences that would be great.

 

[Lamont D]

Yes, I have had that experience, one of the major symptoms of RH not in control or keto is craving.
the only thing I did after getting blood glucose control by going keto, is to stay the course of not eating carbs! It ain't easy, no one who has been through it, will say so.
empty your cupboards, empty your fridge, your freezer, your stash of secret goodies and find something that will give you something else to do instead of eating, go for long walks, go for short walks, intermittent fasting or full fasting, you have to get out of it the habit of eating all the time. Buy food for your one or two meals a day, each day, don't eat breakfast.
It sounds mad but it worked for me.
And I have done it a few times in the last ten years.

I have craved a chip butty with tomato sauce on for about a decade and more!
And I know it's not right!
But your future health is more important!

Best wishes.
Give your body a rest from food. It is not designed for that much food!

 

[Edwardian Gentleman]

Thanks Lamont... I do understand the craving sensation.. your post was really interesting...

Do you remember never feeling full at all though - and I mean never.... For example, I have just had, for dinner, a large piece of baked fish, broccoli, green beans, followed by mixed nuts and a large apple... and then caved in and had a peanut butter sandwich (brown bread)... I felt completely empty when starting, during and after eating all of this.... I was eating extra broccoli raw when preparing the meal... I know I could eat the whole thing again, and again and again.... without feeling full. I will be physically full of course (I must be now) but the feeling is not there.... I feel like I haven't eaten all day long.

I'd liken it to a car with a fuel cage stuck on EMPTY, with a loud warning beep going off all the time... The driver fills the tank - 1/4 full, 1/2 full, 3/4 full or completely full to overflowing... but the gauge still incorrectly says EMPTY and beep keeps going off all the time...

 

[AloeSvea]

@Edwardian Gentleman - when you write about trying to feel full - you are still listing carby and high carb food - not a leg of chicken, roast lamb meat , pork slices, crackling to chew on, (the low-fat ham doesn't cut it in my food-book!), soft cheeses, hard cheeses, fathead pizza (made with almond butter and mozzarella - the singly most filliing thing in my weekly menu).

I had a giggle with @bulkbiker's block of butter, but I can't eat butter on its own... can you? But LOTS of butter on that non-diabetic-you's bread is not bad at all. And we mean butter - NOT marge!

Olives, and lots of cheese if you are dairy-tolerant. ie - fats and proteins.

Salads and coleslaws with low-sugar/no-sugar added mayo and aioli. (The salad won't fill you - but it's a great way to eat the mayo! Which should/could.)

And write it all down in your food diary - which I do believe you should absolutely be keeping for those endo appointments. (Do endos do food though? Probably not, come to think of it...)

It is very hard for we humans to not feel satiated with high healthy fat and protein. I am not convinced from reading your above that you are giving high healthy fat, and high protein a good go. When you do - and if you are still feeling hollow and empty inside - that is very good info for the dietician (which I suspect the endos will direct you to...).

 

[EllieM]

Again, apologies if it is wrong to have posted here. I am trying various sources to try and get to the bottom this as. My only clue so far is that it is related to a nerve signal or thyroid issue.... as I am also experiences intolerance to both hot and cold temperatures along with a dry mouth....

If it's thyroid then hopefully an endocrinologist will be able to get to the bottom of it. Do let us know how you go. Good luck.