Undiagnosed but high blood sugar

[BooJewels]

Delighted to hear that you're feeling a bit better. If you want to slow down the processing of food and minimise weight loss, try adding some fat into the equation. Make a creamy sauce for your cod, have full fat yogurt, nuts or olives for snacks etc that will be much, much better for you than those horrible shakes the doc gave you - I can't help but think they're a contributory factor for you.

 

[Lamont D]

I'm becoming more convinced that this is some reactive hypoglycaemia type thing! Although I wonder if my doctor will agree...

So I am experimenting with reducing my carbs whilst increasing fibre, which is quite difficult given that I'm also trying to gain weight! Tonight I had a big piece of cod, fried broccoli and peas and half a potato. I do feel significantly better than yesterday when I had eaten two white bread sandwiches and a glucose drink at the hospital in the evening.

Maybe that might not sound surprising to many of you, but recently I learnt that most people (with normal blood sugar) don't feel terrible after eating sandwiches! I've always wondered how people can eat high-carb low fibre foods like I see them doing constantly! They've never made me feel great, but yesterday after I got home, I got the shakes and could barely move about 3 - 4 hours later.

I believe you have had that moment of ' that could be me!'
Let us know how you are doing.
And keep an eye on your blood glucose levels.

If you read my first blog, 'a reactionary', you will see how I got to where I am now.

 

[Ballofwool]

Thank you both, that's very kind!

I did have another question, I was wondering if any of the reactive hypoglycaemics here had tried eating a high fibre, high carb breakfast cereal (e.g. Weetabix or shredded wheat with milk and no sugar). Because this is almost all carb, will it cause the same issues? Or because it is high fibre, will it be ok?

I suppose it's really individual, I'm just wondering whether I should try it. If it will be likely to make me all shaky then I think maybe I would rather not.

 

[Lamont D]

Thank you both, that's very kind!

I did have another question, I was wondering if any of the reactive hypoglycaemics here had tried eating a high fibre, high carb breakfast cereal (e.g. Weetabix or shredded wheat with milk and no sugar). Because this is almost all carb, will it cause the same issues? Or because it is high fibre, will it be ok?

I suppose it's really individual, I'm just wondering whether I should try it. If it will be likely to make me all shaky then I think maybe I would rather not.

Hi, I personally stay away from all cereals.
Everyone one of them spikes me.
All of them have processed or refined sugars in them as well as loads of carbs.
It has nothing to do with fibre, I have had to find other ways to get my fibre, though I don't do anything special. I believe, once you are so low carb that your body looks after you.
I don't do dairy either except full fat yoghurt, which I'm having with a few berries, and black tea for my breakfast. Have full fat milk or cream in your tea or coffee, there is such a thing as a coffee bomb, which a lot of diabetics drink.

 

[Ballofwool]

Thanks again everyone! You've all really helped me get to the bottom of what was making me so rubbish... And just in time, I think!

I'm really grateful for all your advice! I have made an effort to eat hardly any carbs, I've been living off meat and cheese and raw vegetables so far today. I haven't felt faint or shaky or had a pounding heart and I've got so much more energy. To me, this is proof that the carbohydrates were behind my symptoms. I'm sure it probably still needs more investigation by my doctor, but I'm just so relieved to have found something that makes me feel better.

I found a cheesecake recipe with only 3 grams of carbs per serving, so I've made that for dessert tonight.

I feel like myself again! I realise in hindsight that I've been barely conscious for WEEKS until now... Thanks to this forum and it's lovely members

 

[BooJewels]

That post has absolutely made my day - just that you're feeling much better already.

You must, of course, follow up on this with medics - I think you're seeing the doc on Monday aren't you? Don't let them fob you off - politely insist that you really need help and you're willing to do your part, but need some professional support. I would like to think that any doctor that could see your weight loss, your deep hypo in A&E the other day and the way it presented to her before she sent you, would consider the matter serious enough to warrant some urgent attention and hopefully a referral to an endocrinologist. Did the discolouration of your leg resolve itself?

It might be worth researching your local health authority and see if any of the consultants in the hospital you're likely to attend might have an appropriate specialism or interest in this area. Many hospitals these days list their consultants in the department information and list their areas of interest - if not, many of them do private clinics too and these often have more detailed profiles on their web sites. Needs a bit of detective work, but if you go armed with a bit of information it might make it easier to get the outcome you want and make the right choice if they offer you a hospital appointment.

Please keep us posted.

 

[Lamont D]

Hi again,
Your post has really pleased me as well.
Keep posting and let us know how you are doing.

Insist on a referral!

 

[Ballofwool]

Hello everyone,

I must say I was very impressed with my GP when I went to see her today. I brought up what happened in the hospital and got out my blood sugar notes, which I had typed up neatly.

At first she laughed and said it could be accounted for by my glucose meter being faulty! However, I was insistent. When she read my notes she saw that I had carried out rather methodical experiments. She said she would refer me to an endocrinologist without me even asking for this.

She was resistant to me eating an extremely low carb diet, particularly because of my low BMI. However, I told her that I was feeling much better and that I can't eat all the carbs and feel terrible again! She seemed to accept this for the time being, and arranged another appointment in two weeks to check on my weight. I am pleased she didn't encourage me to consume more high calorie milkshakes or anything like that!

Without your help and encouragement I wouldn't have got this far! I am so happy!

 

[BooJewels]

I'm delighted. It sounds like you've made the first step towards making some progress, even though the doc was a little resistant at first. But I can't say that I'm surprised, they really don't like us trying to fix ourselves. But we have a vested interest in our own health that only the best of them can truly empathise with.

How could she question your meter after what she saw with your leg and the A&E visit the other day!? Your hypo - after eating quite a lot of carbs - is a matter of record. Surely she can see an improvement in you from the other day?

How have you been over the weekend, has the feeling of improvement with the lower carbs continued?

 

[Ballofwool]

I'm delighted. It sounds like you've made the first step towards making some progress, even though the doc was a little resistant at first. But I can't say that I'm surprised, they really don't like us trying to fix ourselves. But we have a vested interest in our own health that only the best of them can truly empathise with.

How could she question your meter after what she saw with your leg and the A&E visit the other day!? Your hypo - after eating quite a lot of carbs - is a matter of record. Surely she can see an improvement in you from the other day?

How have you been over the weekend, has the feeling of improvement with the lower carbs continued?

I get the impression this isn't something that this doctor has come across before! It seemed like she had been discussing my "case" with both another GP and her secretary, as they both seemed to know me and many of the details of my health. I had to speak to her secretary for a while to make the endocrinologist appointment. The other GP just said hello out of the blue and spoke to me briefly. I think my GP must have asked them for advice about what was going on with me, or something. I feel like I might be infamous in the surgery. Oh well, if it helps get to the bottom of it then I don't mind!

I am still feeling much better, and still haven't experienced any of the worrying symptoms that I had before. I am as convinced as ever that I can avoid my symptoms (and the related blood glucose swings) by sticking to a low carb diet.

I've also found another pleasant side effect. My anxiety has almost totally disappeared. Because of my history of anxiety, I just thought this was "normal for me." Now it seems like a lot of what I thought was a panic attack was actually due to low blood sugar (or maybe just caused by a sudden change in blood sugar). It was something that felt like being shot in the arm with adrenaline every 2 hours. I almost asked to have my antidepressant dose increased because of how bad it was getting. It seems I was barking up the wrong tree!

 

[Lamont D]

I get the impression this isn't something that this doctor has come across before! It seemed like she had been discussing my "case" with both another GP and her secretary, as they both seemed to know me and many of the details of my health. I had to speak to her secretary for a while to make the endocrinologist appointment. The other GP just said hello out of the blue and spoke to me briefly. I think my GP must have asked them for advice about what was going on with me, or something. I feel like I might be infamous in the surgery. Oh well, if it helps get to the bottom of it then I don't mind!

I am still feeling much better, and still haven't experienced any of the worrying symptoms that I had before. I am as convinced as ever that I can avoid my symptoms (and the related blood glucose swings) by sticking to a low carb diet.

I've also found another pleasant side effect. My anxiety has almost totally disappeared. Because of my history of anxiety, I just thought this was "normal for me." Now it seems like a lot of what I thought was a panic attack was actually due to low blood sugar (or maybe just caused by a sudden change in blood sugar). It was something that felt like being shot in the arm with adrenaline every 2 hours. I almost asked to have my antidepressant dose increased because of how bad it was getting. It seems I was barking up the wrong tree!

I've just read your last 2 posts, 3 times.
I'm really made up for you, that since adopting the low carb diet, you feel much better.
Not feeling anxious and your positivity towards tackling your problems is brilliant.

It is so reminiscent of my own battles!
My docs didn't have a clue, either, they aren't trained to recognize the condition of blood glucose problems, that's why we're all diagnosed diabetics!

Well done, keep up the progress reports.

 

[BooJewels]

It doesn't really matter how much they talk about you really, I have much more respect for a doc that says, 'I don't understand this myself, but I will see what I can find out'. GPs are required to be 'jack-of-all-trades', so you can't really expect them to understand everything well, especially rare issues like this might be. So it's good that they don't just try to bluff it and hope you'll go away. My husband has complex medical issues after having septicaemia in 2005 and was on life support for a while with total organ failure. He saw his endocrinologist this morning (who is totally lovely, I hope you get someone like him) and even he said he wanted to further refer him to a 'super-consultant' with very specialist knowledge as he wanted a second opinion before making a decision. So delays can be frustrating, but it's always reassuring to know that they really want to get to the bottom of the nitty-gritty and not just get you out of the door.

Do I remember nosher saying he had sensations of anxiety before diagnosis too? Certainly when you go hypo, there are a cocktail of adrenal gland hormones that are produced to make you attend to it, so if you're perpetually rushing in and out of hypo and hyper states, it's no wonder this would leave you with a constant sensation of anxiety - you have had a shot of adrenalin each time.

I'm just getting my BG down from very high levels, since going on insulin and even at decent BG levels, when it's a bit lower than I'm used to, the first sensation I get is that butterflies in the tummy sensation of unease. It was a month before I figured out what it was and not an allergic reaction to the food I'd had.

I'm thrilled that you're feeling better, it's truly lovely to read.

 

[Lamont D]

It doesn't really matter how much they talk about you really, I have much more respect for a doc that says, 'I don't understand this myself, but I will see what I can find out'. GPs are required to be 'jack-of-all-trades', so you can't really expect them to understand everything well, especially rare issues like this might be. So it's good that they don't just try to bluff it and hope you'll go away. My husband has complex medical issues after having septicaemia in 2005 and was on life support for a while with total organ failure. He saw his endocrinologist this morning (who is totally lovely, I hope you get someone like him) and even he said he wanted to further refer him to a 'super-consultant' with very specialist knowledge as he wanted a second opinion before making a decision. So delays can be frustrating, but it's always reassuring to know that they really want to get to the bottom of the nitty-gritty and not just get you out of the door.

Do I remember nosher saying he had sensations of anxiety before diagnosis too? Certainly when you go hypo, there are a cocktail of adrenal gland hormones that are produced to make you attend to it, so if you're perpetually rushing in and out of hypo and hyper states, it's no wonder this would leave you with a constant sensation of anxiety - you have had a shot of adrenalin each time.

I'm just getting my BG down from very high levels, since going on insulin and even at decent BG levels, when it's a bit lower than I'm used to, the first sensation I get is that butterflies in the tummy sensation of unease. It was a month before I figured out what it was and not an allergic reaction to the food I'd had.

I'm thrilled that you're feeling better, it's truly lovely to read.

I had never had any form of anxiety until about 10 years ago.
When I was really ill, having consistent hypos, anxiety was top of my symptoms, I totally lost my confidence in doing things, Anything was a trial, lethargy, tiredness, anger, frustration. Along with a host of other symptoms.

I really empathize with anyone, who has the symptoms and gets little or no help from their surgery.
My battle to get diagnosed and finding low carbing was the rebirth of my life.
That's why I hang around and try to offer advice, I need to repay the kindness shown to me when I really needed it!

And I love it when a poster gets satisfactory treatment and the difference it makes to their lives.

 

[Ballofwool]

I can completely relate to what you are both saying, and I feel like I have had a bit of a re-birth myself. I can't believe the huge, dramatic difference in how I feel.

It's all finally coming together for me. I mentioned I've been doing some infrequent and quite horrible agency work... Well, now I've been offered a permanent job somewhere else! I start next week. The best thing is that I actually feel well enough to do a good job now, for the first time in ages. I think my confidence and health improvement showed, and this helped me get the job.

I am only sorry that other people have had to struggle with this longer than I have, or had doctors that were not as helpful as mine. I hope I can stick around the forum, and give advice to someone else the way you have for me. I feel I must do something to pay it back.

I will keep you updated if anything else happens, and will definitely report back after I finally see the endocrinologist.

 

[Jo123]

Ballofwall, just read this thread really pleased you are feeling better.
A little tip to help your weight, macadamia nuts! They are I think, 600 calories in the small bag and they are healthy fats! The weight fell off me when I first low carbed and I think these helped stabilise it.

 

[BooJewels]

Congratulations on the new job - that sounds like it will be better for you than agency work - put a bit of stability into your routine. It's obviously your time for good things to happen for you.

I really am delighted at the positive changes you've experienced in such a short time and how relatively easily fixed too.

When I found that I was diabetic, like yourself, I'd been so poorly for a long while and struggling to get a diagnosis and solution that when the doc said it, I was so relieved that was all it was and a change of diet would sort me out, I was delighted. Some people struggle coming to terms with being diabetic, but I've never felt that sense of mourning over it as I was just so happy to be so easily mended. I too cut out bread and potatoes and the like for a week and was like a new person.

Good luck with the new job - a lovely piece of news to start my day. Please keep us updated, your posts have been a joy to me.

 

[Lamont D]

I can completely relate to what you are both saying, and I feel like I have had a bit of a re-birth myself. I can't believe the huge, dramatic difference in how I feel.

It's all finally coming together for me. I mentioned I've been doing some infrequent and quite horrible agency work... Well, now I've been offered a permanent job somewhere else! I start next week. The best thing is that I actually feel well enough to do a good job now, for the first time in ages. I think my confidence and health improvement showed, and this helped me get the job.

I am only sorry that other people have had to struggle with this longer than I have, or had doctors that were not as helpful as mine. I hope I can stick around the forum, and give advice to someone else the way you have for me. I feel I must do something to pay it back.

I will keep you updated if anything else happens, and will definitely report back after I finally see the endocrinologist.

That's brilliant!

Do stick around and you can help by giving advice. That's what the forum is all about!

Isn't it great to feel human again, it's a pity they can't do nothing about old age?

 

[Ballofwool]

Hello again everyone,

I'm still waiting for the appointment with the endocrinologist , but I just got back from the cardiologist appointment. As I've been feeling so much better (although finding it hard to find enough low carb foods I can eat), I really expected them to tell me nothing is wrong and that I can go home. I've gained a kilo in a week!

But when the nurse did some blood pressure tests on lying down and standing, I could tell she thought something is wrong. The consultant made me stand up for 10 minutes without moving, and my feet and hands turned very purple. I said I'd been feeling better since I started a low-carb diet.

She said that I had a dysfunction in my autonomic system, making my blood pressure and pulse abnormal, called Postural Tachycardia Syndrome (POTS). Apparently a high carb diet does make this worse. I am very upset, as I wasn't expecting this! She gave me a leaflet about POTS. It says one of the causes is diabetes... It made me wonder if there was any connection!

The consultant said that she would wait to hear the endocrinologist's position before reviewing in a few months, as she said "it sounds a lot like it could be reactive hypoglycaemia". I didn't mention my hypo in the hospital, but maybe she read it on my notes.

The mystery continues.... But I feel quite down about things because I seem to have some sort of heart condition? I wonder if it is connected to blood sugar!

 

[Rillum]

It does not necessarily signify a heart problem. It could be that the nerves in your blood vessels have been damaged by high glucose levels and so cannot contract on standing, as they should.

 

[Rillum]

Bernstein claims neuropathy (damage to nerves) can be reversed by eating low carb, keeping blood sugars down. So don't despair!