Non-diagnosed, trying to figure out my symptoms.

[SpiderKenny]

Hi everyone,
This is my first post.
I have not been diagnosed with diabetes of any type, but have had some health symptoms that I'm trying to figure out.
I know very little about diabetes so please forgive me if I'm in the wrong place!

Over the past few years I've experienced low blood sugar symptoms even when eating regularly and properly.
I start to feel weak, with narrowing and blurring vision, palpitations, shaky hands and headache, and feeling hungry even after eating. (I've started joking that eating makes me hungry). It clears up quckly after eating a chocolate bar or sugary drink. It has been getting progressively more often, happening several times a week now.

So I decided to try the Freestyle Libre system just to get a picture of my blood glucose levels.
Over the past three weeks I find that the 'low glucose' alarm (less then 3.9) goes of several times a day, and the high alarm (above 11.0) goes of at least once per day.

I'm 55. I've been putting on weight, which is probably due to me trying to stave off the low-glucose symptoms by eating little and often, when I can.

So I'm just wondering if it's normal for an otheriwse healthy man for glucoces level to go below 3.9 a few times a day, and above 11 about once a day?

 

[Lamont D]

Hi everyone,
This is my first post.
I have not been diagnosed with diabetes of any type, but have had some health symptoms that I'm trying to figure out.
I know very little about diabetes so please forgive me if I'm in the wrong place!

Over the past few years I've experienced low blood sugar symptoms even when eating regularly and properly.
I start to feel weak, with narrowing and blurring vision, palpitations, shaky hands and headache, and feeling hungry even after eating. (I've started joking that eating makes me hungry). It clears up quckly after eating a chocolate bar or sugary drink. It has been getting progressively more often, happening several times a week now.

So I decided to try the Freestyle Libre system just to get a picture of my blood glucose levels.
Over the past three weeks I find that the 'low glucose' alarm (less then 3.9) goes of several times a day, and the high alarm (above 11.0) goes of at least once per day.

I'm 55. I've been putting on weight, which is probably due to me trying to stave off the low-glucose symptoms by eating little and often, when I can.

So I'm just wondering if it's normal for an otheriwse healthy man for glucoces level to go below 3.9 a few times a day, and above 11 about once a day?

Hi @SpiderKenny ,
Welcome to the forum.
First of all it is normal to get an up and down range of results in your blood glucose levels, because it does depend on what you eat.
But the symptoms may tell a different story.
The symptoms you describe could be as a result of abnormal highs and lows, similarly to a rollercoaster ride.
But that is about it.
Until you have been diagnosed or have done more results with your CGM, we won't know.
Irregular timing of results are not helping.
Do you know your fasting blood glucose levels, first thing about fifteen minutes after getting up?
Could you give us results pre meal and one hour after, two hours, maybe more?
And I would dependant on those results get a appointment to see your GP.

This will be a start.
And if you get those answers, and see what the doctor says, we can move on after that.

Just eat as normal as you usually do, during gathering the results.

Best wishes.

 

[JoKalsbeek]

Hi everyone,
This is my first post.
I have not been diagnosed with diabetes of any type, but have had some health symptoms that I'm trying to figure out.
I know very little about diabetes so please forgive me if I'm in the wrong place!

Over the past few years I've experienced low blood sugar symptoms even when eating regularly and properly.
I start to feel weak, with narrowing and blurring vision, palpitations, shaky hands and headache, and feeling hungry even after eating. (I've started joking that eating makes me hungry). It clears up quckly after eating a chocolate bar or sugary drink. It has been getting progressively more often, happening several times a week now.

So I decided to try the Freestyle Libre system just to get a picture of my blood glucose levels.
Over the past three weeks I find that the 'low glucose' alarm (less then 3.9) goes of several times a day, and the high alarm (above 11.0) goes of at least once per day.

I'm 55. I've been putting on weight, which is probably due to me trying to stave off the low-glucose symptoms by eating little and often, when I can.

So I'm just wondering if it's normal for an otheriwse healthy man for glucoces level to go below 3.9 a few times a day, and above 11 about once a day?

Hello @SpiderKenny ,

Diabetes is a condition of high blood sugars, not low ones. (The lows usually happen because the diabetes is being treated, we don't crash down naturally.) That said, you're still kind of in the right place, maybe... We can't diagnose on here, but if you check your graphs, maybe you can tell whether the following is true for you:

If you eat something carby, do your blood sugars rise well above 8,5, and then after, crash down really, really low? Then when you eat you go back up again, as you have something sugary (carby), and so you keep going up and down all the time outside of the normal range? If that is the case, you might want to take a print of your results to your GP and request something called an Extended Oral Glucose Tolerance Test. Make sure it's the extended one, a short one might miss the blood sugar crash, should there be one. There's a condition called Reactive Hypoglycemia, that might make sense here. Mind you, that's not the only thing that could be happening, so, if this isn't the answer for you, keep looking. You've got a right to feel better than you are right now.

If it is RH, big if mind you, and something to first investigate with your doc before you make any drastic changes (also because it's kind of hard to diagnose something if you've found a way to reduce symptoms), a relatively easy way to keep it under control is to go low carb. If someone with RH eats something with carbs, those carbs get converted to glucose, and they spike.... The pancreas is slow on the uptake, but when it does, it overreacts and then overcompensates with too much insulin, which makes one go too low. If there's no spike, there's no resultant low, basically. No carbs/sugars, no spike, no low. Just a healthy, wavy equilibrium, no more roller-coaster rides.

I can't stress this enough, I'm just throwing ONE single option in there for you to mull over and discuss with your doc. It's not a very well-known condition so they might not have heard of it. But it might pay off to get a referral to an endo or something if they don't hear you. I hope you feel better soon.
Good luck,
Jo

 

[SpiderKenny]

Thank you @JoKalsbeek and @Lamont D for your really helpful replies, and for not berating me for my ignorance!

I do sometimes get the roller-coaster spike, so that's something to think about. I also take onboard that this is not the place for a diagnosis of anything.
Here's what one typical day looks like.


Thank you for all your help. It's appreciated!

 

[Lamont D]

Thank you @JoKalsbeek and @Lamont D for your really helpful replies, and for not berating me for my ignorance!

I do sometimes get the roller-coaster spike, so that's something to think about. I also take onboard that this is not the place for a diagnosis of anything.
Here's what one typical day looks like.
View attachment 68700

Thank you for all your help. It's appreciated!

I would like to see your hba1c levels?
this is the standard diabetes test.
it is a diagnostic tool used for the previous couple of months of blood glucose levels.

I say this as your night time, early morning is above normal levels.
It would be interesting to find out what your two meals were that causes the spikes.Those spikes are not overly rapid if I read them right. But over twelve is high.
Also 3.9 (?) Is not termed a hypo. It is usually below 3.5 and for someone like regular loss of below 3.0 is indicative of hypoglycaemic conditions.

My first step is get an hba1c test.
And keep a record of what you eat and your results.

Best wishes.

 

[SpiderKenny]

Thanks again @Lamont D for the help.
I might try to speak to my GP about the symptoms and see if I can get an hba1c test.

 

[Melgar]

I agree with @Lamont D and @JoKalsbeek if that was my graph I would make an appointment with my Dr. We cannot diagnose here it is against forum rules. Your baseline sugars are at 6 mmol/ls so I would be asking for a HbAc1 test. It’s a simple blood test. The test measures your average blood sugar (glucose) level over the last 3 months. It’s a standard test for diabetes. Your main rise of 12 mmol/ls is higher than it should be, I’m thinking you had a meal that was quite carby. Your brief dip below 3.9 is not a hypo. It is very common for sugars to dip slightly in everyone and it comes after a small rise of 9 mmol/ls so it comes after your pancreas‘ insulin secretion, following a meal, is tapering off. I Wouldn’t be worried if it was mine.
Getting Your HbAc1 will give you and your Dr a better idea what your blood sugars are like. Your symptoms, shaky hands, feeling weak, heart palpitations may or may not be connected to your blood sugars. Without the HbAc1 figures, one cannot know if it’s connected or not.

 

[KennyA]

At 55 and in the UK you should have had an HbA1c done on you as a matter of routine with your regular GP blood tests. If you've not been getting these your practice isn't doing what they should. If no-one's told you anything about blood glucose levels, that probably means you are not at the automatic diabetes diagnosis level of 48 (or more) mmol/mol. If you can see your GP records online it might be worth a look to see if there are any results - or you could ring the practice (I know the problem with that).

(footnote - this level - currently of HbA1c of 48 or above - was agreed less than 20 years ago. It's supposed to be a fallback, so that anyone reaching that level would be diagnosed, but there's nothing to prevent you being diagnosed earlier - eg if you have symptoms etc. Unfortunately many GPs in the UK are using it as the only diagnostic criterion so no matter how many symptoms you have, you will wait for a diagnosis until the "48" is reached)

I'm attaching a link to a bit of research where non-diabetic people wore CGMs - there isn't all that much research on what "normal" looks like. This should show you that BG levels vary all the time in reaction to many things, food is just one.

Continuous Glucose Monitoring Profiles in Healthy Nondiabetic Participants: A Multicenter Prospective Study - PMC

Use of continuous glucose monitoring (CGM) is increasing for insulin-requiring patients with diabetes. Although data on glycemic profiles of healthy, nondiabetic individuals exist for older sensors, assessment of glycemic metrics with new-generation ...

www.ncbi.nlm.nih.gov

Thing is that many other things can cause similar symptoms, so it might not be wise to jump to the conclusion that this is diabetes.

Best of luck

 

[FinishedWithEngines]

Thanks again @Lamont D for the help.
I might try to speak to my GP about the symptoms and see if I can get an hba1c test.

You are not alone SpiderKenny, I believe I am in the RH cycle (I hope its just that lol).

I had Hb1Ac in February it was 43 and was told I was pre-diabetic. The last 2 weeks have been a foggy, numb head and headaches, immediately thought I had reached the 48+ mark! I bought the patch last week for Freestyle Librelink2 app and found out it was Low glucose that was causing issues. It never went over 8.0, frequently during the day below 3.9 lowest was 2.9 scary stuff for a newby! . I had the Hb1Ac test done today so a few days time I should see what the level is.
Trying to get an appointment with the Diabetic Dr is the next challenge even though I can see I am not Diabetic! But of course the Dre will be an expert at Low Glucose events. I need that step, to get an appointment with an Endocrinologist as of course it could be other issues if you type in NHS site Low Glucose and not diabetic! Good luck SpidderKenny dont delay.

 

[Lamont D]

You are not alone SpiderKenny, I believe I am in the RH cycle (I hope its just that lol).

I had Hb1Ac in February it was 43 and was told I was pre-diabetic. The last 2 weeks have been a foggy, numb head and headaches, immediately thought I had reached the 48+ mark! I bought the patch last week for Freestyle Librelink2 app and found out it was Low glucose that was causing issues. It never went over 8.0, frequently during the day below 3.9 lowest was 2.9 scary stuff for a newby! . I had the Hb1Ac test done today so a few days time I should see what the level is.
Trying to get an appointment with the Diabetic Dr is the next challenge even though I can see I am not Diabetic! But of course the Dre will be an expert at Low Glucose events. I need that step, to get an appointment with an Endocrinologist as of course it could be other issues if you type in NHS site Low Glucose and not diabetic! Good luck SpidderKenny dont delay.

Hi, @FinishedWithEngines ,
Welcome to the forum.
You are doing everything right As far as I can see.
The specialist endocrinologist is important in getting the diagnostic tests to get a true diagnosis.
Your surgery cannot do these tests.
Having the readings of hypoglycaemic episodes from a cgm, will help with persuading your doctor for you to get a referral.
First question, Was the hba1c test a fasting test. This is because if you have had carbs before the test, it could skew the results.
Are your fasting levels normal range (4-6 mmols)?
Are you already lowering your carb intake?
What symptoms are you getting?

A bit more information for you.
And it would be useful to refer to the RH forum.
The tests (if you can get them) is usually an extended oral glucose tolerance test. This is five hours and blood samples will be taken, from a cannula and every fifteen or half hour blood glucose readings are done.
They should also do c-peptide and GAD tests from the blood taken.
Insulin should also be measured.
Or a mixed meal test done.
Let's see how you get on.
But all these tests are used to eliminate other conditions, as there is no diagnostic test that will give you a true RH diagnosis. It is the last test that confirms RH. Which is the 72 hours fasting test.

Again welcome to our forum.

 

[Melgar]

Welcome to the forum @FinishedWithEngines . Feel free to explore all the sub-forums. And @Lamont D has already connected with you do you are in good hands with anything RH related.

 

[FinishedWithEngines]

Hi, @FinishedWithEngines ,
Welcome to the forum.
You are doing everything right As far as I can see.
The specialist endocrinologist is important in getting the diagnostic tests to get a true diagnosis.
Your surgery cannot do these tests.
Having the readings of hypoglycaemic episodes from a cgm, will help with persuading your doctor for you to get a referral.
First question, Was the hba1c test a fasting test. This is because if you have had carbs before the test, it could skew the results.
Are your fasting levels normal range (4-6 mmols)?
Are you already lowering your carb intake?
What symptoms are you getting?

A bit more information for you.
And it would be useful to refer to the RH forum.
The tests (if you can get them) is usually an extended oral glucose tolerance test. This is five hours and blood samples will be taken, from a cannula and every fifteen or half hour blood glucose readings are done.
They should also do c-peptide and GAD tests from the blood taken.
Insulin should also be measured.
Or a mixed meal test done.
Let's see how you get on.
But all these tests are used to eliminate other conditions, as there is no diagnostic test that will give you a true RH diagnosis. It is the last test that confirms RH. Which is the 72 hours fasting test.

Again welcome to our forum.

Thanks Lamont D
Q1 I timed my breakfast (I was at 4.0 at wake up) so I could show the nurse how low my Glucose was after 2 hours after breakfast, at time of the sample it was 3.6!
I haven't tried doing fasting levels presume you mean fasting level at first wake up?
I am actually increasingly my intake of slow release carbs, as I am scared it will be too low in the morning, in fact last night at 11pm I had a bowl of porridge.
I feel symptoms when it goes below 5.0 its light head, numb head almost like a bad hangover, headache, inner thigh cramps when below 3.9 on getting out of bed in the morning or during night
I didn't know there was a RH forum. Thanks will look for it.

 

[SpiderKenny]

Thanks everyone.
I will keep an eye on my symptoms and the readings from the LibreLink app, and will try to keep a diary of food & times.
Right now I'm experiencing the symptoms I mentioned in the OP and LibreLink says my bllod glucose leve is 3.5. I'll get something to eat and. I'll feel fine again pretty soon.
In repsonse to @Melgar - I don't get regular blood tests done. Haven't seen a GP since 2019 for any reason. My local practice doesn't do regular routine testing as far as I know! I'll give them a call and try to get an appointment.

 

[Melgar]

Thanks everyone.
I will keep an eye on my symptoms and the readings from the LibreLink app, and will try to keep a diary of food & times.
Right now I'm experiencing the symptoms I mentioned in the OP and LibreLink says my bllod glucose leve is 3.5. I'll get something to eat and. I'll feel fine again pretty soon.
In repsonse to @Melgar - I don't get regular blood tests done. Haven't seen a GP since 2019 for any reason. My local practice doesn't do regular routine testing as far as I know! I'll give them a call and try to get an appointment.

Just a small point, CGM’s are not as accurate once you you get out of the ‘normal’ range. So high blood sugar readings and low readings should be x checked with a glucometer for accuracy. The blood reading is the one to go with.

 

[FinishedWithEngines]

Thanks everyone.
I will keep an eye on my symptoms and the readings from the LibreLink app, and will try to keep a diary of food & times.
Right now I'm experiencing the symptoms I mentioned in the OP and LibreLink says my bllod glucose leve is 3.5. I'll get something to eat and. I'll feel fine again pretty soon.
In repsonse to @Melgar - I don't get regular blood tests done. Haven't seen a GP since 2019 for any reason. My local practice doesn't do regular routine testing as far as I know! I'll give them a call and try to get an appointment.

Hi SpiderKenny our nurses at GP surgery have a healthy heart club each year we are invited for blood tests for cholesterol and Hb1Ac along with Blood pressure etc etc believe it starts at over 55's surely all Health authorities are supporting similar? Definitely ask your receptionists

 

[Lamont D]

Thanks Lamont D
Q1 I timed my breakfast (I was at 4.0 at wake up) so I could show the nurse how low my Glucose was after 2 hours after breakfast, at time of the sample it was 3.6!
I haven't tried doing fasting levels presume you mean fasting level at first wake up?
I am actually increasingly my intake of slow release carbs, as I am scared it will be too low in the morning, in fact last night at 11pm I had a bowl of porridge.
I feel symptoms when it goes below 5.0 its light head, numb head almost like a bad hangover, headache, inner thigh cramps when below 3.9 on getting out of bed in the morning or during night
I didn't know there was a RH forum. Thanks will look for it.

If your by levels when texted is low 3.6, then unless they don't have an idea about hypoglycaemia, that is a good start.
because of other factors, particularly dawn phenomenon, I would always say that waiting half an hour after waking is a good time to take your fasting levels before eating.
Be aware there is no such thing as slow release carbs. This is because of intolerance.
Which means, your BG levels will be abnormal the more carbs you eat.
A carb is a carb, sugar is sugar.
It will effect you, symptoms and abnormal spikes if you have RH.
Keep asking, I will try and help.