I have diabetic symptoms which I have been living with for years. When I first saw the doctor about it they said I'm diabetic and ordered blood tests. I wasn't able to get them done as I was bedridden with my Fibromyalgia. I ended up in hospital not long ago with hypoglycaemia and they all said I need a blood test from doctors and that it sounds like I'm diabetic. I'm not sure whether I have Type 1, Type 2 or Pre-Diabetes but my main issue was always with low blood sugar. Lately my blood sugar has been going borderline high to high. It is constantly going up and down. I have a blood glucose meter and usually check my blood sugars a minimum of 4 times a day. I check when I wake up and after eating etc. If it is really low and I have a hypo then I have 15g of sugar in the form of either glucose tablets or fruit juice. I was initially diagnosed with non diabetic hypoglycaemia and I believed that what was the problem up until recently. Things are getting worse. I have all the typical diabetes symptoms such as constantly urinating, very thirsty no matter how much I drink, dry mouth, blurred vision etc. When my blood sugar is high I get migraines, become very sleepy/fatigued, rapid heartbeat etc. When it is low I get extremely shaky, weak, sweaty, dizzy etc and I also experience nausea with both low and high blood sugar. I have no idea what to do anymore when the doctor is refusing to believe me after being the one who suggested diabetes in the first place and now changing their mind. I have a diabetic friend who believes I am experiencing diabetes, another person with Type 1 thinks I am diabetic, I always get asked if I am diabetic in hospital because of my blood sugar, and many other people believe I am diabetic although undiagnosed. I have also been experiencing mini seizures along with the severe blurred vision and eyes going out of focus, convulsions, tremor, jerking movements of the whole body etc and it is terrifying me. I know this isn't an alternative for medical advice but I wondered has anyone been through this and what type does it sound like I could have? Sorry for the long post and thank you if you take the time to read and answer.
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Doctor Refusing to believe I am diabetic
- Thread starter EmoPanda
- Start Date
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- 19,165
- Type of diabetes
- Type 1
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- Insulin
Hi,
Welcome to the forum.
What sort of numbers are thrown up on the meter when these episodes occur?
- Messages
- 19,165
- Type of diabetes
- Type 1
- Treatment type
- Insulin
Thanks, we cannot diagnose you on the forum.
But,
I'll tag in a couple of members.. @Brunneria @Lamont D
In the meantime. Look up "reactive hypoglycaemia."
Lamont D
Oracle
- Messages
- 18,221
- Type of diabetes
- Reactive hypoglycemia
- Treatment type
- I do not have diabetes
Hi, and welcome to the forum.
I have what is now called reactive hypoglycaemia.
It used to be called idiopathic postprandial Hypoglycaemia or non diabetic Hypoglycaemia. It is actually a condition that has very similar symptoms to T2 diabetes and like myself was misdiagnosed with T2.
RH is a food derived condition. That means I am intolerant to certain foods depending on your reaction to them, mostly from carbs, sugars and starchy vegetables.
You produce too much insulin when you eat these foods. I have a very weak insulin response, so my blood sugar levels go high very quickly, that triggers an overshoot of insulin, which keeps on going into hypo levels. These symptoms are typically as you have described and I have experienced most of them.
What diagnostic tests have you had?
What dietary advice have you had?
What meds are you on?
Do have a read of our sub forum on Reactive Hypoglycaemia.
I am sure that some of it will bring a few bells.
Ask questions, ask advice, no questions are daft.
I was over a decade trying to get a true diagnosis, it seems that you are going through it all now.
Keep safe
I have what is now called reactive hypoglycaemia.
It used to be called idiopathic postprandial Hypoglycaemia or non diabetic Hypoglycaemia. It is actually a condition that has very similar symptoms to T2 diabetes and like myself was misdiagnosed with T2.
RH is a food derived condition. That means I am intolerant to certain foods depending on your reaction to them, mostly from carbs, sugars and starchy vegetables.
You produce too much insulin when you eat these foods. I have a very weak insulin response, so my blood sugar levels go high very quickly, that triggers an overshoot of insulin, which keeps on going into hypo levels. These symptoms are typically as you have described and I have experienced most of them.
What diagnostic tests have you had?
What dietary advice have you had?
What meds are you on?
Do have a read of our sub forum on Reactive Hypoglycaemia.
I am sure that some of it will bring a few bells.
Ask questions, ask advice, no questions are daft.
I was over a decade trying to get a true diagnosis, it seems that you are going through it all now.
Keep safe
- Messages
- 14,295
- Type of diabetes
- I reversed my Type 2
- Treatment type
- Diet only
@EmoPanda - Depending on when you are testing, those numbers aren't necessarily indicative of diabetes.
Depending upon what has been eaten, and the subsequent timing of the blood test a spike at 9ish is credibly non-diabetic. Under other circumstamces it can indicate diabetes.
Your lower numbers, in a non-diabetic aren't abnormal. The 3.2 is quite low, but I (with officially resolved diabetes) have numbers under 4 almost every day. It would usually be when I'm about ready to eat, so late afternoon/early evening. I feel absolutely fine with it.
What tests have you had done to ascertain your diabetes status, and what other medical conditions are you living with? I notice you mention fibromyalgia. Do you have your thyroid monitored?
Depending upon what has been eaten, and the subsequent timing of the blood test a spike at 9ish is credibly non-diabetic. Under other circumstamces it can indicate diabetes.
Your lower numbers, in a non-diabetic aren't abnormal. The 3.2 is quite low, but I (with officially resolved diabetes) have numbers under 4 almost every day. It would usually be when I'm about ready to eat, so late afternoon/early evening. I feel absolutely fine with it.
What tests have you had done to ascertain your diabetes status, and what other medical conditions are you living with? I notice you mention fibromyalgia. Do you have your thyroid monitored?
Thanks
I am supposed to be having a A1c test and also fasting blood glucose test. I find it strange how my doctor said I'm diabetic and has now changed their mind. I am very confused as I have never had an A1c test, so until I have that done they can't rule out diabetes. My symptoms are very worrying and because I have all the symptoms of diabetes and am very unwell from it, they shouldn't be trying to fob me off.
Oh and I forgot to say that my dietary advice was initially to eat every 3 hours (little but often) and have dark chocolate for snacks when my blood sugars are low. Although now I have high cholesterol and have been told to cut down on dietary fats. I am on Fluoxetine 20mg, Clonazepam 1mg, Gabapentin 300mg, Vitamin B Compound, Thiamine 300mg, Fexofenadine (for my allergies)
Rokaab
Well-Known Member
Are you sure, or have they just not bothered to tell you because the results were normal? (this is a distinct possibility)
I know my mum said her gets tested on her yearly check-up with the docs
I test everyday upon waking and after each meal or anything sugary. Under what circumstances would a reading of 9ish indicate diabetes? I've had this reading many times regardless of whether I've fasted or eaten. Whenever my blood sugar is 4 or under I feel very unwell, shaky and hypoglycemic. Whenever my blood sugar is 7 or over I also feel very unwell and get blurred vision and feel hyperglycemic and feel like I am dying.
I am still awaiting tests for diabetes as I delayed having them done due to being bedridden from my Fibromyalgia and Chronic Fatigue, but now doctor is saying I don't need the tests when they put the tests down as urgent and looked worried and told me to get them done ASAP. My thyroid has been tested a lot and always comes back as normal. I am convinced whatever I have is diabetes or possibly something that can mimic it. This doctor put the idea in my head that I'm diabetic and I didn't agree at first until I noticed my symptoms getting worse. Now my symptoms are full blown this doctor chooses to change their mind and say I'm not diabetic. I can't keep living like this and I feel like giving up now.
I'm starting to think maybe it could be possibly I am pre-diabetic which is another thing that was suggested by a doctor. But what I'm unsure of is whether pre-diabetes only ever leads to type 2 diabetes or whether pre-diabetes can lead to type 1 diabetes, although I think the case is pre-diabetes is a pre-cursor to type 2 right?
Yes I am sure I have never had an A1C in my life. Because the A1C is more accurate and extensive this is why the doctor decided to do this one which I haven't had done yet, as I have been unwell and now put off by the doctor saying one thing then another. Very confusing when they keep changing their minds.
KK123
Well-Known Member
Good question. I was diagnosed as 'pre diabetic' 5 years ago. 3 years later I was rushed into hospital with DKA and diagnosed as type 1. At the time of the pre diabetic diagnosis, I did not fit ANY of the so called 'criteria' for pre diabetes/type 2 other than age and an hb1ac in that category so their advice to 'change your lifestyle' was mute as I was slim/ran 5 times a week/ate carbs but none of the 'sweets/cakes stuff), I say that knowing that is a stereotype but it's one that they live by! I strongly believe that the pre diabetes was in fact slow onset type 1 (LADA) but because they don't do ANY further tests on a pre diabetes declaration, I ended up getting more and more ill unknowingly. x
JoKalsbeek
Expert
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- The Netherlands
- Type of diabetes
- I reversed my Type 2
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- Diet only
If nothing conclusive comes from the HbA1c, request an extended oral glucose tolerance test. That would check you for Reactive Hypoglycemia. People without T2 see nines and threes regularly, it's semi-normal depending on what they're eating, but if you hit those numbers fast, so quick spikes and quick drops, they can leave you reeling. If you do suspect RH, and the doc is unwilling to try an (E)OGTT, usually because they don't know what it is, just try going low carb. That should even out your blood sugars a little and prevent spikes and dips, should RH be the issue here.
Good luck!
Jo
- Messages
- 14,295
- Type of diabetes
- I reversed my Type 2
- Treatment type
- Diet only
There are many reasons why a person might see a high blood glucose reading - extreme physical or mental stress, believe it or not, extreme hunger, leading to the body "rescuing" the individual by dumping glucose into their system, dawn phenomenon, lake of sleep, infections, and the list goes on.
The reason I asked about thyroid is, where it is off-kilter, it can meddle with the blood sugar, as it is at the epicentre of our metabolic processes. There have also been papers written on how fybromialgic pain can be a sign of badly managed hypothyroidism. (I don't have any links to hand at present.)
In UK hypothyroidism has a diagnostic threshold of a TSH reading of 10, although with extreme symptoms a doctor can trial medication from 5. In the US hypothyroidism is diagnosed from 3, with a careful watch on anything 2+, so in my view, some of our "normal" thyroid readings may be overly optimistic.
The reason I focused on hypothyroidism is with hypERthyroidism, the person is often in over-drive, as opposed to becoming bed-bound.
To be clear, I am absolutely not diagnosing you with anything, or suggesting you should be diagnosed with any particular thing. I am trying to encourage you to look wider and further than what you seem to be focused on.
I really do hope you get this sorted out. Being under the weather of any length of time isn't good at all.
Dark Horse
Well-Known Member
- Messages
- 1,840
The criteria for diagnosing diabetes can be found here:-
https://www.diabetes.org.uk/profess...nitoring/new_diagnostic_criteria_for_diabetes
https://www.diabetes.org.uk/profess...nitoring/new_diagnostic_criteria_for_diabetes
Lamont D
Oracle
- Messages
- 18,221
- Type of diabetes
- Reactive hypoglycemia
- Treatment type
- I do not have diabetes
A little insight into why it can be very confusing. Hypoglycaemia is not covered in a GPs training because it is rare. If a GP gets a case where symptoms are similar, they have a protocol to follow.
In the case of RH, because your fasting levels are normal, and your Hba1c levels are normal. If you have the standard two hours glucose tolerance test, the result will show that your insulin response is quite low, because of insulin resistance (in T2s) and your two hours readings will still be around normal levels. The symptoms are very similar, so the doctor from reading this result is you could be prediabetic or you are not diabetic. The surgery you go to will probably not have the facility or equipment or the finance to do the necessary tests.
Do remember that it costs your surgery, even though it is free for you (in theory) money to get treatment or tests or a referral to a specialist endocrinologist, but that is what you need.
The only other thing is as has been suggested, going very low carb, keeping a food diary and recording all your readings, test, test, test!
Hope this helps
Keep safe
Leanne1981x
Newbie
- Messages
- 1
Hi there,
Sorry to hear you are having a bad time of it.
Reading your post is like reading about my situation. I have had all tests for diabetes and have a strong T1 family history. I was told years ago I was T2 as I was carrying nearly 5st more than I am currently. I have recently had a diagnosis of reactive hypoglycaemia which is what your symptoms sound like. This is by no means intended to replace any advice professionals may give you, it’s just your numbers are also like mine. I can go into the high 11’s at times and be as low as 1.8. I’ve had the antibody test for T1 and def isn’t that in my case. My endo gave the advice on sometimes it can be a waiting game for people and RH can (but not always), lead to diabetes. We have to look after ourselves and eat well and avoid trigger foods which tend to be carbs and refined sugars for me. The extended oral glucose tolerance test seemed to lead to diagnosis for me.
I hope you get some answers soon.
Sorry to hear you are having a bad time of it.
Reading your post is like reading about my situation. I have had all tests for diabetes and have a strong T1 family history. I was told years ago I was T2 as I was carrying nearly 5st more than I am currently. I have recently had a diagnosis of reactive hypoglycaemia which is what your symptoms sound like. This is by no means intended to replace any advice professionals may give you, it’s just your numbers are also like mine. I can go into the high 11’s at times and be as low as 1.8. I’ve had the antibody test for T1 and def isn’t that in my case. My endo gave the advice on sometimes it can be a waiting game for people and RH can (but not always), lead to diabetes. We have to look after ourselves and eat well and avoid trigger foods which tend to be carbs and refined sugars for me. The extended oral glucose tolerance test seemed to lead to diagnosis for me.
I hope you get some answers soon.
Lamont D
Oracle
- Messages
- 18,221
- Type of diabetes
- Reactive hypoglycemia
- Treatment type
- I do not have diabetes
Hi @Leanne1981x
Welcome to our forum.
I'm so glad that you have a diagnosis. It took me a long time to get one.
Have you had any other tests than an extended oral glucose tolerance test?
Did you record your blood sugar levels through the test?
How low into Hypoglycaemia did they stop the test?
What dietary advice have you had?
How did they treat the hypo in hospital?
Sorry about the questions but it gives us something to know and then advise you on the way forward.
We have our own sub forum on Reactive Hypoglycaemia, scroll through forums and our is there. There is a lot of knowledge and experience with RH.
Keep safe
