Rh Or Not?

kiwi gal

Newbie
Messages
4
hi all, since my teen years (in my 50's now) between meals I have had symptoms on and off over the years of what I assumed was low blood glucose (sudden weakness, jittery/anxious, starving, lightheaded, can get angry, cannot think rationally) and eating relieves symptoms. But since I came down with a gastro virus last year the symptoms are often worse, with the sensation of what I think is adrenaline release, I feel funny all over like something serious has happened in my body and I get very cold and heart starts racing, dizzy, weak. over the past year I have called the ambulance 6 times as I do not know what is happening. I seem to get hungry every couple of hours these day and have put on weight, due to eating more but in the past I have always been underweight. I eat a pretty clean diet, do not consume biscuits, cake sugary drinks,sugary cereals etc. It seems to be the mornings that I get these symptoms rather than afternoons. Been to endocrinologist, and did a 20 hour fast at hospital clinic. Was fine during that, no symptoms other than feeling a bit weak and hungry but could walk around fine and read and do crosswords.BG at start of fast was 4.7, insulin 5.8. end of fast BG was 4.2 insulin 1.5 . Normal fasting BG in New Zealand where I live is 3.5-5.4 mmol/L normal fasting insulin 2.6-24.9 mlU/L.

I also did a mixed meal test over 5 hours where they tested my BG every half hour. I had to bring in my own breakfast that was a combo of fats, protein, carbs (porridge oats, full fat milk, nuts and seeds, blueberries) fasting BG was 4.8, insulin 8. I was OK until about 3 hours after eating then I had one of those adrenaline release episodes, heart rate and BP went high, felt all weak and shaky, dizzy, came on suddenly. The nurses tested my BG and it was 4.3, they said that was normal and therefore its not due to low BG so must be something else causing these symptoms. Looking at my clinic notes, 30 mins after eating my BG went up to 6.4, then 30 mins later it was down to 4.9 then every half hour following it was 4.1, 4.4, 4.4, 4.5, and then to the 4.3 when I had the low BG symptoms. Is it possible that my BG had dropped lower and caused an adrenaline release to increase BG so that when tested it was normal by then?
The endocrinologist said everything is fine and not hypoglycaemia. Told me its probably panic attacks.
I have been to see a cardiologist as since the virus I have been getting heart flutters, which he says are ectopic beats and normal. Also seen a gastroenterologist and neurologist, they say everything normal. All my blood tests have been normal.

HbA1C was 32mmol/mol, there was a comment from the lab saying if diabetic then this number suggests excellent control but risk of hypoglycaemia is increased ( I am not diabetic by the way). Does this mean that my BG have been going low over the past 3 months?

Any advice as to what you may think is happening is much appreciated.
Am I having false hypo's?
I feel like my life is on hold, pretty much house bound and not driving now due to this.
thanks
 

kitedoc

Well-Known Member
Messages
4,783
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
black jelly beans
Hi @kiwi gal, Sorry to hear of your trials and tribulations over so many years.
I wonder how your blood sugar levels (BSLs) were measured during these prolonged fasting tests, as the finger prick glucose meter measurements where you place a droplet of blood on a plastic strip will have an error range of +/- 15%.
So taking 4.3 mmol/l as the Blood sugar measured at the time of your symptoms and allowing =/- 15% gives a range of 3.65 to 4.95 mmol/l. (= +/- 0.65). You will note that 3.65 mmol/l is very close to the lower end of the fasting BSL and that some people I have read about do report low blood sugar symptoms at that level. Also diabetics in particular have noted that even at higher levels of say 4.5 or 5.0 mmol/l they may note low blood sugar symptoms, if their BSLS are falling rapidly.
For whatever blood sugars were measured by drawing blood off from a vein puncture with a needle
you would need to enquire from the lab test results what is the range of error in the test results to see whether say, the 4.3 mmol/l result could have a range including the lower level near 3.6 mmol/l.
A therapeutic test I have used on myself as a diabetic is if I feel 'low in sugar' is to have some glucose in the form of jelly beans, say 3 to 4, and see whether I feel better in 10 minutes or so.
Please also look at the Reactive Hypoglycaemia forum to see what others have to say and how they deal with their condition.
I am not qualified to provide health professional advice or opinion, and so cannot give you a diagnosis etc.
If you have the opportunity to hire/buy/have given to you a glucose meter and strips (some GPs and chemists are given samples by glucose meter companies) you may wish to test at the approx. 3 hours after meals mark to see what readings you obtain (+/- 15%) and present these to your GP.
Also if you google OGTT (oral glucose tolerance test) pictures or graphs, there are some where the person tested has an under-active thyroid condition. The graph of the blood sugars is much 'flatter' than a 'normal' reading and it may be worth asking your GP whether your thyroid gland has been tested with a blood test to rule that out as a cause of or extra factor in your BSL readings.
Best Wishes !!
 
  • Like
Reactions: kiwi gal and Knikki

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
Hi and welcome @kiwi gal

All I can tell you, based on my own experiences of RH is that what happens with me, is that my blood glucose dips low enough to trigger my body into thinking it needs to boost blood glucose. And it does that by dumping adrenalin and other stress hormones into me - which is what causes all that awful shakey panic feelings.

In effect, the low blood glucose happens before I get the shakey symptoms because they are a side effect of the adrenalin release and by the time I test my blood glucose has already risen - so any test at that point won't show how low I went.

Hope that makes sense?

The only way I actually saw how low I was going was by buying and using a Freestyle Libre. This was most illuminating! And made me realise that my blood glucose could dip down into the 1s and 2s before the stress hormone release, then rise (within a matter of a few minutes) back into the normal 4+ range. Which meant that by the time I got it together to test my bg, I was already showing 'normal'.

I had been experiencing this for years! But it was only getting the Libre that gave me the full picture.

Obviously, I cannot say that this is happening to you, but it is a possibility.

Oh, and I really wish I could express my disgust at any medical professional who blithely says 'oh, they are panic attacks'.
The question should be 'what is causing these symptoms that look like panic attacks?' because a massive stress hormone release gives very similar symptoms!!! Mainly because a panic attack involves a massive stress hormone release, doesn't it?
 
  • Like
Reactions: kiwi gal and EllieM

kiwi gal

Newbie
Messages
4
Hi and welcome @kiwi gal

All I can tell you, based on my own experiences of RH is that what happens with me, is that my blood glucose dips low enough to trigger my body into thinking it needs to boost blood glucose. And it does that by dumping adrenalin and other stress hormones into me - which is what causes all that awful shakey panic feelings.

In effect, the low blood glucose happens before I get the shakey symptoms because they are a side effect of the adrenalin release and by the time I test my blood glucose has already risen - so any test at that point won't show how low I went.

Hope that makes sense?

The only way I actually saw how low I was going was by buying and using a Freestyle Libre. This was most illuminating! And made me realise that my blood glucose could dip down into the 1s and 2s before the stress hormone release, then rise (within a matter of a few minutes) back into the normal 4+ range. Which meant that by the time I got it together to test my bg, I was already showing 'normal'.

I had been experiencing this for years! But it was only getting the Libre that gave me the full picture.

Obviously, I cannot say that this is happening to you, but it is a possibility.

Oh, and I really wish I could express my disgust at any medical professional who blithely says 'oh, they are panic attacks'.
The question should be 'what is causing these symptoms that look like panic attacks?' because a massive stress hormone release gives very similar symptoms!!! Mainly because a panic attack involves a massive stress hormone release, doesn't it?

Yes that makes sense and from what I have read online also, this could very well be what is happening to me also.
I have glucose monitor but the lowest I have managed to capture is 4.1.
Yeah, I was totally peeved by the endo comments, he actually gave me a referral to a psychiatrist!
It was a big let down as I honestly thought he would be able to find out what is going on with the whole BG thing. It took me ages to get an appointment to see him as a private patient, and he is actually a professor and also head of the medical programme at the biggest university here.
I can buy a Freestyle Libre here, pretty expensive but would be worth it to see what is going on and as you say, then I will hopefully have some evidence to take to GP. Over the past year I have been several times to my GP clinic and seen 4 different Dr's there to try and get some help. All trying to tell me it's in my head, one saying I should consider hormone replacement therapy, other saying I am getting the symptoms because I am thinking about them, and all of them pushing for me to go on anti anxiety meds!

I think I read on one of your posts that it is in the morning s that you have problems with your insulin?
The mornings are the worst time for me and when I am most likely to get the symptoms of low BG, after lunch I am feeling much better. I can be hungry afternoon or evening but not get the low BG symptoms its just weird and I cannot make sense of it!
In the morning I have very little energy and have to be careful what I do as even just going up and down stairs will set my symptoms off. It feels like my body is not making use of glucose even though I have eaten, or not getting to the cells to provide energy or something like that.

I think there is some type of genetic component to this as my niece is very similar to me and I worry of her. We are both small boned and look similar,any weight is gained around hips, both have problems with iron levels (anaemic many times with no apparent reason), both had/have difficulty conceiving a pregnancy and miscarriages. she has BG problems too but she actually passes out, but still Drs say there is nothing wrong her BG!
thanks for your reply!
 
Last edited:

kiwi gal

Newbie
Messages
4
Hi @kiwi gal, Sorry to hear of your trials and tribulations over so many years.
I wonder how your blood sugar levels (BSLs) were measured during these prolonged fasting tests, as the finger prick glucose meter measurements where you place a droplet of blood on a plastic strip will have an error range of +/- 15%.
So taking 4.3 mmol/l as the Blood sugar measured at the time of your symptoms and allowing =/- 15% gives a range of 3.65 to 4.95 mmol/l. (= +/- 0.65). You will note that 3.65 mmol/l is very close to the lower end of the fasting BSL and that some people I have read about do report low blood sugar symptoms at that level. Also diabetics in particular have noted that even at higher levels of say 4.5 or 5.0 mmol/l they may note low blood sugar symptoms, if their BSLS are falling rapidly.
For whatever blood sugars were measured by drawing blood off from a vein puncture with a needle
you would need to enquire from the lab test results what is the range of error in the test results to see whether say, the 4.3 mmol/l result could have a range including the lower level near 3.6 mmol/l.
A therapeutic test I have used on myself as a diabetic is if I feel 'low in sugar' is to have some glucose in the form of jelly beans, say 3 to 4, and see whether I feel better in 10 minutes or so.
Please also look at the Reactive Hypoglycaemia forum to see what others have to say and how they deal with their condition.
I am not qualified to provide health professional advice or opinion, and so cannot give you a diagnosis etc.
If you have the opportunity to hire/buy/have given to you a glucose meter and strips (some GPs and chemists are given samples by glucose meter companies) you may wish to test at the approx. 3 hours after meals mark to see what readings you obtain (+/- 15%) and present these to your GP.
Also if you google OGTT (oral glucose tolerance test) pictures or graphs, there are some where the person tested has an under-active thyroid condition. The graph of the blood sugars is much 'flatter' than a 'normal' reading and it may be worth asking your GP whether your thyroid gland has been tested with a blood test to rule that out as a cause of or extra factor in your BSL readings.
Best Wishes !!
I do not think I would be able to get the error range from the lab unfortunately. They used 2 different method for the BSL, the placed a drop of blood on a small machine thing (not like a home monitor it looked more professional) which gave a instant result and also sent a sample to the hospital lab. Yes I can have symptoms at levels in the 4's or 5's but also can feel fine in the low4's, seems to vary.
I have read a lot of the info and posts in the reactive hypo forum and it is very helpful. I have a home monitor and use ti to check from time to time but never recorded a proper low yet, lowest has been 4.1. will do as you suggest and measure at 3 hours, but tricky for me to go that long without eating!
Dr never done a OGTT test on me yet, but I have had my thyroid levels measured several times of past year but they say levels are normal: TSH, free T4 and free T3. Although they did not test thyroid antibodies which a friend has said they should be tested also.
Thanks for your reply!
 

kitedoc

Well-Known Member
Messages
4,783
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
black jelly beans
Hi @kiwi gal, The trouble is that few doctors are likely to have experienced low blood sugar themselves. (And for those that are male I wonder how some of them know so much about childbirth)!!!
If my blood sugar gets low enough it messes with the functioning of my brain and at face value I could be thought to be a real nutter (one that is cured by several jelly beans - a strange 'psychiatric illness' indeed)!!! and I have heard stories of diabetics suffering low blood sugar and being jailed as the police thought they were drunk !
Building up a bank of BSL data with the Libre for presentation to your GP(s) sounds like a great idea, but please read up threads on this site about the Libre, as it's accuracy at lower BSL levels is a bit suspect, according to some. They have tended to re-check low levels say, less than 4 mmol/l, with a finger prick test, always allowing that the finger prick test is going to be +/- 15%.
As those who post on the RH forum on this site say, low or no carb diets seem to work best for them. But for you to document your BSLs looking for the 'elusive' low blood sugars my guess is that you would need to include some carbs in the meals (just a thought, a GP could advise on this) and of course comparing low carb to higher carb meals and the resulting BSLs could be quite informative as well. Best luck with your sleuthing !!
 

Lamont D

Oracle
Messages
15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
I concur with @kitedoc, having experienced hypoglycaemia and eOGTTs.
The reason that glucose is given in the recommended dosage, is because the test can be recorded from a baseline.
I have 'late RH' and my blood sugar levels do not drop down into hypo levels until after three to three and a half hours.
Keeping a food diary, like I have will also help when you are experimenting and recording your pre meal, one hour, two hours and up to three and four hours after, you will see the way you digest and if your glucose levels are imbalanced. Record your meals, how much, when and how cooked, timing and how cooked, cos even using a different cooking method or what you cook with, animal fats, vegetable fats or olive oil will give different results. It is essential that you have a a good working method in discovering what certain foods (carbs) do to your glucose and insulin, as well as other hormonal responses.
Most doctors don't have the experience of knowledge about hypoglycaemia in its many forms and symptoms.
You know something is not right, there are answers to your questions, but only diagnostic tests performed in a supervised way will do this, getting those tests is really hard, having a reference to what happens when you eat, with a food diary or a cgm, will help with your doctor's appointment.

Best wishes