Wits end - any similar experiences?

[Dily]

At the risk of being rude, it sounds like you nay be ADHD and have anaemia (cant regulate temperature...part of the diabetes probably) You know you are not hungry as you just had some food, but you are probably reacting to not being free to have whatever you wish to have ...and maybe have food intolerances too...plus maybe addiction to refined carbohydrates ...similar to people who are situation beer drinkers as they cant go without the refined carbs....there is a co called York Tests who will test for allergies and intolerances and environment pollutants that you could be struggling with. All the best

 

[Edwardian Gentleman]

Update on my situation. since last being here, I have seen an endocrinologist and a gastro specialist privately as GP has reached end of ideas.

Had another HSAC1 test all fine, plus a fasting test which was 5.1 so also fine. So it looks like no diabetes causing this - the day before the fasting test I consumed as normal (lots!)...

Gastro specialist is perplexed - is testing for anaemia and pancreatic disorders and malabsorption as a last ditch attempt to see what could be contributing to this.

Meanwhile, it just goes on. The hunger and need to eat is so strong now (getting worse all the time) - I am a grown man who in has never suffered from anything health-wise for decades and was previously fit, healthy and a careful eater, but I am literally in tears with the hunger pains I am experiencing.

I just ate (wolfed down) a large cheese and ham sandwich, crisps, large apple, biscuits (3) for lunch. Afterwards I was literally crying out for more and more food - it is so distressing. I had a large bowl of shredded wheat to try to help the situation (as I often do).... it didn't make an ounce of difference - it was gone in seconds and I was, if anything, suffering from more hunger than before (as is always the case).

All this overeating is not adding any significant weight - I am almost 6 foot and now just over 11 stone. I had been as low as 10 stone 3 pounds earlier this year initially the weight was dropping off me despite the over-eating for some reason. Before all this I was healthy, muscular 12 stone.

I can't adequately put it into words how strong this hunger sensation is now. Perhaps it is what one would feel like if one had walked for 24 or more hours without food - and then imagine that feeling 24/7 and being stronger than ever immediately after eating a massive meal.

My stomach always feels completely, and utterly empty. It doesn't really matter what food is eaten - carbs, veggies, sugar - anything - I am just crying out for more all the time. The only thing I cannot face are very sugary things and alcohol of all types.

I have been told over and over again I do not have diabetes. HSAC1 (I have had 3 over the last 8 months - all fine), random tests (always 4.5-5.5) and now a fasting test (5.1), but the only thing I can liken this to is what I have read (and seen once in my family) what untreated type 1 can do to hunger levels. I have had this now for months.

Sorry to go on, but this (along with a load of other unpleasant symptoms) is driving me (and my poor wife) to despair now. I appreciate all of your helpful suggestions so far. Please note this is not a binge eating thing - this is 24/7.

I keep asking myself if there anyway this could be undiagnosed type 1 diabetes - despite the HSAC1, random and fasting tests.... I have been told in no uncertain terms to drop this idea by my GP but, my goodness, this hunger is so distressing...

 

[lucylocket61]

Have your leptin levels been tested, and your thyroid?

 

[Edwardian Gentleman]

Thyroid was tested. Within range (TSH was just over the low point and T4 was just under the high point) - so near hyper than hypo... but Dr wasn't;t worried.

Leptin - not tested.

 

[lucylocket61]

Thyroid was tested. Within range (TSH was just over the low point and T4 was just under the high point) - so near hyper than hypo... but Dr wasn't;t worried.

Leptin - not tested.

It's important to get leptin tested.

 

[MrsA2]

I've just been reading a book by Stanley Tucci, actor and eater, and a passage stuck in my mind. He had had some food intolerances since childhood , dairy and sugar among them. But now suddenly he can eat these again without side effects. The change has been put down to a protracted fast caused by the treatment for a throat cancer. His doctor described it as a "reset" of his metabolism. It wasn't prescribed for him, just the difficulties, the radiation and a tube meant he chose to stop eating for a while. I stress this was just one passage in a book of memoirs so he isn't promoting it, it's only anecdotal.

Now we are not doctors, and nor is he, but the word "reset" stuck in my mind as it's also used by those who go very low carb or very low calorie to try to lower their bg or diabetes or those who fast for autophagy.

I'm just wondering whether for you, after all other medical avenues exhausted, you read up on fasting and maybe decide to give it a go. It might be difficult at first and you'll have to be determined do override the cravings, and to make sure you get basic nutrients and electrolytes, but I do just wonder...

 

[Lamont D]

I can and I will describe my pre diagnosis of RH. And the symptoms of hunger, craving, even a desperation searching for something I could eat. No matter what I had ate, I still wanted more and more. My brain was aired to eat more regardless of how much I knew it was doing me no good. My head hurts at the front behind the eyes, my mouth was dry, my saliva overflowed and because of the metformin stomach growled and further down....................!
A couple of months before diagnosis, I was barely eating but I still craved but I would have a small meal and do a lot of walking either with the dog, the wife or just by myself to stop raiding the cupboard, I got very disciplined with what I was eating as I went over eighteen stone, regardless of how little I ate, I was still gaining weight.

As @MrsA2 has quoted from the article. My body changed when I was in hospital for a fasting test. This was a diagnostic test to rule out other pancreatic conditions such as insulinoma or pancreatitis amongst others.
This four day fast rewired my head, my brain, my stomach, my craving and hunger went away. My desire for food went away and my weight dropped dramatically. Even a small bite was enough. The symptoms went and my brain fug cleared up so much. It was like switching on a closed part of my brain.

I would enquire about having tests.
I am non diabetic and I have a lot of food intolerance especially dairy and carbs and sugar.
Potatoes make me spike and hypo, so does any wheat product or grain.
I rely on meat and salad, with a few other foods, lots of eggs, a bit of fruit, mushrooms, toms, onions, everything cooked from fresh. I batch cook currys, soups and broths.
I have an intolerance to many oils, veg cooking oils, palm oil, and a lot of ingredients that are in manufacturing processed foods.
It is like, I am intolerant to modern food.

Just wishing for a chip buttie now! Ha!

 

[Edwardian Gentleman]

Thanks for all the info everyone.

 

[Edwardian Gentleman]

All - an update from this end. I am still experiencing all the symptoms mentioned and the one which is getting worse is the constant hunger I am experiencing. I am doing all I can to get to the bottom of this.

My gastroenterologist who tested for enzymes (fat absorption)- reports I am slightly low. My pancreas might not be working as it should, possibly, but a repeated test is advised to be sure. Deep joy. Could some of this be down to malabsorbtion?

In the meantime, as mentioned, the crippling hunger is just getting worse and worse. I couldn't have believed it could, but it has.

It seems to start off as a feeling of (say before lunch) as "I am really hungry must eat". Then as I eat it just gets worse - to the point where I am doubled over in pain (from hunger) and often reduced to tears - straight AFTER eating. This is not normal - I know that.

OK - so today. Before lunch - usual "I feel starving" feeling. I had crisp bread + scrambled eggs and immediately after that.... the previous 9/10 starving feeling was replaced with 10/10 incredible hunger to the extent of tears and gripping my poor stomach in agony. I immediately had a large bowl of shredded wheat to try and fill up and, as ever, it somehow became worse. I had to leave the kitchen, again doubled over with hunger pain. Now I am away from the kitchen the feeling persists. Over the next few hours it will go back to a 9/10 starving feeling again, before the cycle is repeated at dinner time or with a snack in the afternoon.

Living like this is beyond miserable. I have tried everything - from no carbs to high protein, from fasting to giving in to the hunger. Giving in to it is a fool's errand as you can probably see. Last time I gave in consisted of lots of crips and bread whilst cooking a large evening meal, then after the meal more cereal, peanut butter sandwich x 2, handfuls of almonds, cereal bar x2 and then apples x2 - I could have continued... I kid you not - afterwards I still felt hungry to the extent of distress even though I was as bloated as hell and felt sick. I won't repeat that again.

I can hardly work, sleep, read, concentrate or exercise. I wake up at 3am feeling absolutely starving with the usual hunger pains every single night. I do not give in to them at night as I know through experience that eating will just make them worse...

 

[lucylocket61]

Are you sure you are not defining your pain as hunger, when it is not? I admit, I have never felt hunger as physical severe acute pain, even as a child when poverty meant I sometimes cried myself to sleep with hunger

Your severity and description of the pain just doesn't sound like it is due to hunger. Have you been tested for stomach ulcers ?

 

[Edwardian Gentleman]

Hello - thanks for replying. Perhaps the pain would be best described as not a sharp pain or like pain I have ever experienced. I don't think it is an ulcer.

It is a feeling like my stomach is empty (which it is not) .... but then some. Like it is a complete vacuum which worsens, not gets better, the more I eat. The message to my brain is one of emergency - eat or die - not to put too fine a point on it, but then I eat and it becomes more and more urgent.

 

[lucylocket61]

Hello - thanks for replying. Perhaps the pain would be best described as not a sharp pain or like pain I have ever experienced. I don't think it is an ulcer.

It is a feeling like my stomach is empty (which it is not) .... but then some. Like it is a complete vacuum which worsens, not gets better, the more I eat. The message to my brain is one of emergency - eat or die - not to put too fine a point on it, but then I eat and it becomes more and more urgent.

If your stomach is full, it's not a hunger pain. It's something else. Has your stomach lining been checked? How do you know it's not an ulcer? I don't know what country you are in, but what tests have actually been done?

Doctors may be assuming it's hunger because that's how you are defining it, so are not looking for anything else.

 

[Edwardian Gentleman]

Thanks so much for the conversation.

It's a thought (the ulcer thing) but perhaps my description of 'pain' is not correct. There is no traditional pain, just that message that I need food but really need it urgently.

How can I compare it.... like anyone would have if they had not eaten all day and were on their feet all day is how I feel as the baseline all day. that would be bad enough but that exact same feeling intensifies to the point of 'panic stations' as soon as eating commences and the persists for hours until retreating to baseline stage again.
I get extremely distressed about it, not because I am in actual pain in the traditional sense, but because it has removed all pleasure and normality from life. I guess the trouble with all symptoms is that only the person suffering is the one to experience it.

Even reading my own posts, I can see how the medical people I have spoken too are having a tough time with this. It's sounds almost unbelievable...

 

[lucylocket61]

Thanks so much for the conversation.

It's a thought (the ulcer thing) but perhaps my description of 'pain' is not correct. There is no traditional pain, just that message that I need food but really need it urgently.

How can I compare it.... like anyone would have if they had not eaten all day and were on their feet all day is how I feel as the baseline all day. that would be bad enough but that exact same feeling intensifies to the point of 'panic stations' as soon as eating commences and the persists for hours until retreating to baseline stage again.
I get extremely distressed about it, not because I am in actual pain in the traditional sense, but because it has removed all pleasure and normality from life. I guess the trouble with all symptoms is that only the person suffering is the one to experience it.

Even reading my own posts, I can see how the medical people I have spoken too are having a tough time with this. It's sounds almost unbelievable...

you talk about being doubled over in agony. How long did you try with no carbs? @Lamont D gave some sound advice and suggestions around the subject of food intolerance. Maybe re-read and try his ideas?

Perhaps you can try to describe why you think the sensation is hunger - what makes you say that? I am not doubting you, just trying to help you articulate what is going on, which may help you describe it to your medical people.

Hunger involves a rumbling stomach, which can be clearly heard - does that happen? People on here, including me, are familiar with the sensations from fasting, so if you can put into words more about the specific sensations and thoughts you have around this, it may help us help you. Where do you feel this sensation you are having? Why do you think its hunger? - again, not doubting, simply trying to help you clarify maybe.

 

[Edwardian Gentleman]

Thanks - appreciate all you say.. I tried very low carb for about a month. This didn't help, I lost some weight though, however didn't really need to. they intense hunger feeling was just as strong. A 5 egg omlette (yes really) with cheese for example would just cause more hunger.

No to rumbling stomach. The feeling is really difficulty to put into words. I guess it is almost as if my brain never ever registers that I have eaten - and instead sends a signal that I need to eat urgently which oddly gets even worse the more I eat not the other way around... It almost takes my breath away and I can think of nothing other than eating more - it is so intense, especially once I start eating.

I tried fasting.... it was difficult and once the fast was over I had to use so much willpower not to eat too much too quickly - I was only partly successful in this....

Guess we could back and forth trying to work out what is going on. Thanks though for all the time taken.

 

[Rokaab]

Did you ever get any food intolerance tests done as suggested?

My food intolerance caused malnutrition - I did literally feel like I was always always hungry no matter how much I ate - wasn't fun

 

[lucylocket61]

Thanks - appreciate all you say.. I tried very low carb for about a month. This didn't help, I lost some weight though, however didn't really need to. they intense hunger feeling was just as strong. A 5 egg omlette (yes really) with cheese for example would just cause more hunger.

No to rumbling stomach. The feeling is really difficulty to put into words. I guess it is almost as if my brain never ever registers that I have eaten - and instead sends a signal that I need to eat urgently which oddly gets even worse the more I eat not the other way around... It almost takes my breath away and I can think of nothing other than eating more - it is so intense, especially once I start eating.

I tried fasting.... it was difficult and once the fast was over I had to use so much willpower not to eat too much too quickly - I was only partly successful in this....

Guess we could back and forth trying to work out what is going on. Thanks though for all the time taken.

That would indicate a food intolerance, like animals who endlessly graze due to not getting the nutrients they need. What food intolerance and coeliac testing have you had done?

I must say, I am awed by the quantity you can eat at one time. I can barely manage a two egg omelette as a whole meal.

 

[lucylocket61]

Guess we could back and forth trying to work out what is going on. Thanks though for all the time taken.

Isn't that the point of the thread? Trying to work out what is going on so you can seek the right help and articulate your symptoms in a way your medical people can understand. Would you like me to stop asking questions? I don't want you to feel uncomfortable.

 

[filly]

I have had hunger when it hasn't been. Quite a lot but with no physical pain.
Feels more like Duodenal ulcer possibly. With ulcers you often feel very hungry after eating.
Also the other thing that has crossed my mind is are you drinking enough water. There is a thinking that you can feel very hungry but are actually thirsty.

 

[Edwardian Gentleman]

Isn't that the point of the thread? Trying to work out what is going on so you can seek the right help and articulate your symptoms in a way your medical people can understand. Would you like me to stop asking questions? I don't want you to feel uncomfortable.

Hi there - oh no sorry - I don't feel uncomfortable at all - pleased to keep going - I was more worried about how much of your time I am taking up!
The food intolerance is worth thinking on. I wonder, though, at the age of 50+ why I would develop a food intolerence now after never having a single issue with food or diet ever before.

Duodenal Ulcer is another thing I hadn't really thought of - but surely that would have a pain of a different kind? And feeling full quickly - I think my mentioning pain might have been misleading - it is not pain but more an intense feeling of hunger. It is like hunger I have experienced when well (for example when I skipped meal due to work pressure) but multiplied many times in its intensity and, as mentioned, 24/7.

On the drinking water - yes I am drinking a lot of water. I am also suffering from a very dry mouth amongst other things, so I am never far away from a water bottle!

What brought me here in the first place was a belief (before my HSa1c Tests, fasting test and random test) that I had developed Type 1 Diabetes. The hunger, thirst, pins and needles, initial weight loss (fast) and generally feeling awful (plus the history of it in my family) meant I was scared this had happened. Now I am at loss as to what is causing all this unpleasantness. I will take on board all of the suggestions.

Thanks all.