hi im new and need some advice please.

[samarah86]

hi a friend said that some1 might be able to advice me on what to do regarding my situation.
I am not diabetic or prediabetic as far as I've been told by my gp and apparently there is nothing wrong with my blood glucose levels.
The thing is I feel really fobbed off and as though the gp didn't do everything she should have.
I first noticed a problem when I was 17 and I would suddenly feel really dizzy, be able to see these weird coloured blobs, have headaches and would feel really sick. A few times I passed out. My GP at that time ordered blood tests and when the results came back she said I needed to eat more carbohydrates. I admit at that time my diet was atrocious due to the food available to me and I would regularly on eat once a day in the evening and never more than lunch and dinner, but I followed her advice and felt an improvement. Despite, this improvement at 19 my diet plummeted after I lost my nan. My intake consisted of 1 roosters chicken burger on my lunch break and then either a microwave burger for dinner or a frozen meal for 1. I suddenly started passing out again and many times it was without notice (ie not feeling dizzy) and I put on a lot of weight (I've never been slim but I moved straight to the obese category within about 4 months). I moved in with my now husband and almost immediately I noticed a difference. I was having proper food again (mid morning snack, late lunch, dinner and then a light supper) I wasn't tired all the time, I was sleeping better, I stopped passing out and although I didn't lose much weight I wasn't putting anymore on either. Fast forward to 2 years ago (I'm now 31) and I started suddenly piling on the weight again, the headaches returned with avengance (to the point currently if I have a day with only a slight 'pre headache' it's a good day), constantly tired and random dizzy spells although I haven't passed out in many years I have felt close on a few occasions.
Anyway, I eventually went to the doctors several times and eventually the GP order some fasting blood tests and then about 3 weeks later my surgery contacted me with a referral for a GTT. I went and did the test but was taken ill about 35-40mins after drinking the liquid. Felt very sick, sweaty, dizzy and felt quite muddled and was taken 2 a room where I was instructed to lie down for the next hour and a half.
I phoned for the test results after 2 weeks and the GP told me everything was satisfactory but didn't offer my actual results and that it was my weight that was causing my symptoms and was going to refer me to the weight management team. That was the last I heard back in June. Haven't even recieved this referral for weight management.
My best friend said it sounded 2 her like my blood sugar was dropping and that my symptoms were very similar 2 her brother who has fasting hypoglycemia, that I should have been given more tests than the 2 the GP ordered and adviced if I didn't feel able 2 go back 2 my GP then to come on here and see if any1 has any advice.
I don't care if I'm ill, I will cope with that and find a way to manage it but I just want some1 2 listen 2 me without thinking I'm either crazy or making it up because nothing is showing on blood tests.
Sorry for the long post but I didn't know how much was relevant.
x

 

[Squire Fulwood]

Obviously us bunch of amateurs can't start diagnosing complex medical conditions but I will page @Brunneria for you. She has a controversial condition that sounds a bit like yours. Maybe she can comment.

 

[samarah86]

thank u. I understand about the diagnosing thing but any advice on anything I can do 2 get the help I obviously need (cos I don't think feeling as I do all the time is normal lol)
x

 

[slaxx]

Hi there.
First off, disclaimer: im not an expert on this.
I'm a diabetic and i have experienced *some* of your symptoms, but the difference is that i know what is happening or happened to my glucose levels so i have an explanation.
For your case though... well, hypoglycemia only happens if 1) you have a problem similar to diabetes/DM (unable to control blood sugar), and if you have DM: 2) you ate too little, and/or 3) you injected too much insulin.
One more thing: undiagnosed diabetes usually makes a person thinner as far as i know, because he is unable to use or absorb whatever he is eating, + other reasons.
So your symptoms seem to not exactly match..? But as a lay person, my first thought for your condition is possibly a thyroid problem. Have you had your thyroid checked?
Im sure there are other people here who can answer you better. These are just my 2... well, 5 cents, lol. Hopefully something to start with.

 

[Squire Fulwood]

In the meantime you can read this to see if it rings any bells.

http://www.diabetes.co.uk/reactive-hypoglycemia.html

 

[Antje77]

Hello, and welcome to the forum, @samarah86 !
I'm diabetic on insulin, so nothing in common with your situation. I think you're right in that your problem COULD have something to do with blood sugars. I think the best thing you can do is tell your GP that you want to see your test-results. If you feel like it you could also ask him to explain how your weight is causing these problems. Weight alone doesn't do that.

 

[kokhongw]

@samarah86 You may want to consider getting a glucose meter to check your glucose level when you feel unwell. That wil help determine if the symptoms you are experiencing is due to low glucose level. This may be due to high insulin response to certain food, typically this is called
http://www.diabetes.co.uk/reactive-hypoglycemia.html

or it could be due to other medical conditions that require further investigations.

 

[samarah86]

Hi there.
First off, disclaimer: im not an expert on this.
I'm a diabetic and i have experienced *some* of your symptoms, but the difference is that i know what is happening or happened to my glucose levels so i have an explanation.
For your case though... well, hypoglycemia only happens if 1) you have a problem similar to diabetes/DM (unable to control blood sugar), and if you have DM: 2) you ate too little, and/or 3) you injected too much insulin.
One more thing: undiagnosed diabetes usually makes a person thinner as far as i know, because he is unable to use or absorb whatever he is eating, + other reasons.
So your symptoms seem to not exactly match..? But as a lay person, my first thought for your condition is possibly a thyroid problem. Have you had your thyroid checked?
Im sure there are other people here who can answer you better. These are just my 2... well, 5 cents, lol. Hopefully something to start with.

HI,
no I have never had my thyroid checked
x

 

[samarah86]

hi thanks for the link. I've had a look and all the symptoms are very familiar 2 me. I tend to get the anxiety after the other symptoms though and start 2 panic that I'm going 2 start passing out again.
I'm not sure about the after eating and carbs bit though.
I tend 2 experience the symptoms first, then eat a small meal (usually a sandwich or pot noodle if it's the middle of the day) and then probably 5 hours later I start feeling unwell again and eat something bigger like my evening meal.
it feels like a constant cycle of feeling ill and eating as it's the only thing I've found that relieves the symptoms.
x

 

[Squire Fulwood]

hi thanks for the link. I've had a look and all the symptoms are very familiar 2 me. I tend to get the anxiety after the other symptoms though and start 2 panic that I'm going 2 start passing out again.
I'm not sure about the after eating and carbs bit though.
I tend 2 experience the symptoms first, then eat a small meal (usually a sandwich or pot noodle if it's the middle of the day) and then probably 5 hours later I start feeling unwell again and eat something bigger like my evening meal.
it feels like a constant cycle of feeling ill and eating as it's the only thing I've found that relieves the symptoms.
x

Well I think the answer is in there somewhere. Perhaps if, when you have your next small meal, you can leave out the carbs and see if it changes anything. It will be very interesting if it does (or doesn't even).

 

[kokhongw]

To illustrate...when I have a fatty meal...my glucose level remains steady all day long...

But when I have a carby meal...it turns out to be a glucose roller-coaster...and this is highly repeatable...

 

[samarah86]

ok thanks,
I've just had my lunch which was a chicken and bacon salad (the lowest carb thing i could find in the fridge) so I will see how I feel later
x

 

[Brunneria]

Hi and welcome @samarah86

There are a few of us on the forum with Reactive Hypoglycaemia, and we even have a subforum about it here

I should have a look at some of the threads - I think you will find that your experiences resonate.

It is a very, very different thing from type 1 diabetes.

 

[paulus1]

that sounds like me from years back when i was eating 4-500cals a day it could be simply that your body is telling you that you need to eat more. i often went dizzy and needed to hold onto things. i would head back to the dotor passing out is never a good sign. just to check you dont get migraines do you.

 

[Resurgam]

I used to have symptoms of hypoglycemia in mid to late afternoon, back when I was in my early twenties were the worst - the doctors did not help. I then found that eating low carb stopped it and went on perfectly happily for over forty years, but after diagnosis I began to have the same thing happen - I was trying periods of fasting, but found that two meals widely separated were what did the trick for me.
I would not expect that everyone would find the same thing, there might need to be some experimentation, but a first meal with a small amount of carbs then a later meal with more carbs, as my insulin resistance drops during the day. and my blood glucose stays fairly steady, with no flashing criss cross lines and whistles in my ears and no nose dives onto the bed to sleep for several hours.

 

[slaxx]

Just to quip, discussions like these are so informative, even i with 21yrs dx under my belt am learning something new.
Hope you find your answers soon @samarah86 (i'd say to never mind my earlier comment and prioritize researching reactive hypoglycemia), and if you can share your results, would be awesome too

 

[samarah86]

that sounds like me from years back when i was eating 4-500cals a day it could be simply that your body is telling you that you need to eat more. i often went dizzy and needed to hold onto things. i would head back to the dotor passing out is never a good sign. just to check you dont get migraines do you.

Yes I do get migraines actually. Have suffered with them since I was 20ish.
I probably don't eat enough actually. I don't eat 'breakfast' until 9 at the earliest (usually 2 pieces of toast) then have a light lunch somewhere around 1.30, dinner is 5.30 and then a light supper about 10ish. I haven't calorie counted in a long time but probably somewhere between 1000-1250 a day.
x

 

[samarah86]

Just to quip, discussions like these are so informative, even i with 21yrs dx under my belt am learning something new.
Hope you find your answers soon @samarah86 (i'd say to never mind my earlier comment and prioritize researching reactive hypoglycemia), and if you can share your results, would be awesome too

yes I was in research mode earlier.


Thanks 4 every1s replies I'm taking everything on board and I am seriously considering getting a glucose monitor(?) tomorrow cos so far with the exception of during my GTT I haven't managed 2 be with the doctor when I've had symptoms and it wld be intresting 2 see if anything is happening with regards to my glucose levels.
Is there a thread or sticky that any1 knows of that could point me in the right direction testing wise?
There was something I read that jogged something in my memory about ketones?earlier.
I remember vaguely when I went to be induced with my daughter 3 years ago that the midwife did a urine test and said I needed to eat and drink something as there were ketones present and I might not have the energy to make it through labour on my own. Don't knw if it's relevant but as I said it jogged something when I read it
x

 

[Bluetit1802]

I think you would be better posting a thread on the reactive hypoglycaemia forum about testing and ketones. You may get some more knowledgeable answers on there. Meanwhile, do get hold of a meter. It will help you, and you can save the readings as evidence to show your doctor.

 

[kokhongw]

Is there a thread or sticky that any1 knows of that could point me in the right direction testing wise?

Some additional thoughts...

Home glucose testing will only serve to confirm if the symptoms experienced are due to low glucose. And perhaps help you to relate it to meals and as a point of further discussion with your doctor.

For a full and proper diagnosis, it will likely require further test by healthcare providers for fasting insulin levels, extended OGTT with insulin response testing etc. The idea is to find out why there appears to be high level of insulin being released...is it triggered only in response to meals (reactive) or it is always high and you need to constantly eat to maintain a stable glucose level.

Ketones can appear when insulin levels are low, eg when we fast, as ketones can serve as an alternative fuel. But it can also appear when glucose is very high, leading to ketoacidosis, in which case it can be life threatening. Hence knowing the glucose level is always helpful in providing a context.

Hope you will be able to figure it out soon. All the best.