Wow see that’s so interesting, my hospital’s parameter was under 3.3 I think. Just shows how there’s clearly more standardisation and research to be done. That doctor (different hospital) said it doesn’t constitute a hypo unless below 3 which is crazy because I bet she’d feel rubbish at 3.5! I understand it won’t damage our brains but still, it’s rough!@Oh766 sorry to hear about your struggle. Your hospital sounds proactive, but did they rule out an insulinoma? Your fasting BS sounds low.
If it is reactive hypoglycaemia, reducing carbs is the way forward, while increasing protein and fat. As a fellow RH struggling, the foods that stablize my blood sugar are fatty red meat like a beef steak, lamb.
When I have bad days, I crave meat. Obviously this isn’t that healthy, but it stops the hunger: I sympathise with the crazy hunger caused by the excess insulin.
Could you ask to speak to the diabetics dietician at the hospital? Your hospital sounds great, mine won’t give out CGM’s or discuss them for this condition, which I think is outdated.
I found even something as Innocent as an apple will give me low blood sugar- even if I add nuts and peanut butter.
Learn to read the sugar/ carbs/ protein / fat/ fibre labels on everything and work out what your tolerance of carbs/ sugar is.
My hospital used ensure drink for the mixed meal test- I also went down to 3.6 mmol which is below their testing parameters (by 0.1mmol great!) ensure drink is about 50% carbs.
I agree, I felt horrible at 3.6 too, no way I could drive.Wow see that’s so interesting, my hospital’s parameter was under 3.3 I think. Just shows how there’s clearly more standardisation and research to be done. That doctor (different hospital) said it doesn’t constitute a hypo unless below 3 which is crazy because I bet she’d feel rubbish at 3.5! I understand it won’t damage our brains but still, it’s rough!
Hi,I agree, I felt horrible at 3.6 too, no way I could drive.
I start to feel it when my bs is 4.9 or below. My fasting is usually 5.3
I had wondered if it was an over reaction by my adrenal glands to a blood sugar drop, but no one seems interested in helping and can’t afford private. The faster the drop, the worse I feel.
This area needs more research. I wonder if someone else would be quite happy at the BS levels I have, but then why am I so symptomatic????
So many complicated chemical reactions and hormones involved. Would love to know who could research these mechanisms in more detail.
HiHi and welcome to our forum.
And yes, it is so difficult if you do not understand the reason why you produce too much insulin, and the symptoms and 'reaction' is really awful.
Ok first of all, did the doctors do an hba1c blood panel tests?
How long was the mixed meal test?
3.6 could be a hypo for you. And my specialist endocrinologist said the level is usually 3.5, but some would say under 4 is a hypo. As with all hypoglycaemia conditions, and there is more types than RH, it is individual.
I hope an extended glucose tolerance test is the next step. And that should be around five hours.
That is why some doctors tell you to eat every three to four hours.
It is to stop you going low.
It doesn't stop the excess insulin.
It doesn't stop the spikes if you have too many carbs.
It won't stop the symptoms, side effects as you describe.
It won't help with overeating.
It won't help your bank account.
It won't help you worrying about what to eat six times a day.
It won't stop the overnight hypoglycaemia, if you have a carb filled late meal.
You have hopefully read some threads on our forum.
And if you have, in my experience, going very low carb will help you so much.
You will not, if it is RH, go hypo, without carbs.
Indeed I am an example of someone who avoids carbs as much as possible.
I found through doing a lot of experimenting, that carbs are unnecessary and are not as essential.
And, common with similar conditions, we tend to eat sparingly, as in intermittent fasting or something similar.
Bear in mind, that, after a lot of testing even low GI carbs will still trigger the reaction for me and others that have Hypoglycaemia.
I am from young, lactose intolerant.
My intolerance to any sugars is awful.
it is the same with carbs, which includes Wheat, grains, starchy veg, rice, etc.
This is why, my BG levels spike, with them.
I spike abnormally high.
My body reacts cos of this, by over production of insulin.
This drives my BG levels down, similar to a sugar crash, down into hypoglycaemia.
The symptoms you describe are atypical of RH. It is your body's way of telling you, that something is not right. You are not doing healthy eating for you.
You need a healthy diet for you, for you.
We all have different tastes etc.
And our intolerance levels are different and individual.
Keep asking.
I will try and help as much as I'm able.
Finally, the last definitive diagnostic test, is called a fasting test
This is because, if you go hypoglycaemic whilst fasting it is not RH.
If you don't go hypoglycaemic whilst fasting for more than three days, then it is RH.
So why would you keep eating all day, every day?
Every test is a test that is designed to eliminate other conditions, there is no diagnostic test for RH.
Best wishes.
And yes, I do long posts.
Hi, this shows how much confusion there is medically. I agree! I'm not sure I understand the comments about not having RH if you experience hypos during the 72 hour fasting. I had the 72 hour fasting test. I had several hypos, dropping to low 3's and down to 2.5. I did a lot of reading about this test ( googling medical information rather than the general patient info)Just to let you know, I don't agree with their thinking!
However, having a CGM will be very useful in understanding it all.
You clearly are going low. And I do think you are over producing insulin. But I'm not certain that going hypo without having food, is what I have been told and experienced.
I have never had a fasting BG levels reading in hypo levels. And of course RH (unless T2 is in the mix) is non diabetic.
Even if you Google RH, it is food that causes the reaction. It was called post pandrial hypoglycaemia, cos of the hypo after (post) food, before getting the description of Reactive Hypoglycaemia, cos of the reaction post food.
And not being a single type of diagnosis as there are different types of hypoglycaemia.
So, if you had RH, you would not get fasting BG hypo levels, and not get hypos during the day unless you have eaten.
Unless, you are doing strenuous exercise or work. But that is not the reason for the overnight sweats and lows.
I do think that the information you gather and the information from the CGM, and understanding what is happening to you. I think you should ask for more tests.
Think I mentioned all diagnostic tests for RH eliminate other conditions until the final test is a 72 fasting test.
And only if you don't go hypo on this fast, it is RH.
Do you see what I'm saying?
I would gather so much information from reliable sources.
And keep a diary of what foods and readings you are getting.asking them for more tests. Because of the discrepancies, of the evidence from the results
I had a decade of telling doctors, that I had been misdiagnosed, you sometimes have to battle your way through it all. And it is so hard to find you are quite alone and not finding the answers from those who should know.
Is it alright if I PM you?
3.3 sounds lowHello everyone. This is my first post on here, as a short-time stalker of the forum. I’m really struggling with what we believe to be RH. I had a mixed-meal test which didn’t show a hypo low enough to confirm the diagnosis (my BG was 3.6 and it has to be 3.3 I believe…). They’re now checking it’s nothing else but they gave me a libre 2 and I’ve been verifying the readings with finger pricks. Even if I don’t go low after everything I eat, I go back to 4 after an hour of eating, sometimes less. It definitely seems I have more insulin than I need! I constantly feel weak, tired, starving hungry and get a lot of headaches. I’m just wondering how people cope, as it’s not possible for me to always eat every 90mins as I’m having to do. I know some people find keto helpful but I don’t understand how I won’t just be hypo all the time if I have no carbs! I’m limiting high GI foods but it’s doing next to nothing. The extreme hunger and tiredness is horrible. Thank you so much and sorry for such a long post..
It does seem your homeostasis is out of whack.Hi, this shows how much confusion there is medically. I agree! I'm not sure I understand the comments about not having RH if you experience hypos during the 72 hour fasting. I had the 72 hour fasting test. I had several hypos, dropping to low 3's and down to 2.5. I did a lot of reading about this test ( googling medical information rather than the general patient info)
Whilst carbs are a cause ( it seems) they can't therefore be the only cause. My hypos happened after not eating for over 24 hours and continued through to about 50 hours in where I then hit a hazy lovely flattening out of sugar levels. For whatever reason my body can't regulate its blood sugars
after eating or during fasting. I completed the 72 hour test. It wasn't halted because sugar levels need to drop to 2.2 before your bloods are sent to the lab for further testing and the test is stopped. At the end of this 72 hour test, I had 2 and 4 hour record of ketone and sugar levels. Due to my inability to regulate my sugar I was diagnosed with RH.
@Oh766 sorry to hear about your struggle. Your hospital sounds proactive, but did they rule out an insulinoma? Your fasting BS sounds low.
If it is reactive hypoglycaemia, reducing carbs is the way forward, while increasing protein and fat. As a fellow RH struggling, the foods that stablize my blood sugar are fatty red meat like a beef steak, lamb.
When I have bad days, I crave meat. Obviously this isn’t that healthy, but it stops the hunger: I sympathise with the crazy hunger caused by the excess insulin.
Could you ask to speak to the diabetics dietician at the hospital? Your hospital sounds great, mine won’t give out CGM’s or discuss them for this condition, which I think is outdated.
I found even something as Innocent as an apple will give me low blood sugar- even if I add nuts and peanut butter.
Learn to read the sugar/ carbs/ protein / fat/ fibre labels on everything and work out what your tolerance of carbs/ sugar is.
My hospital used ensure drink for the mixed meal test- I also went down to 3.6 mmol which is below their testing parameters (by 0.1mmol great!) ensure drink is about 50% carbs.
That is great news @CatkysydneyI had a glucose tolerance test with insulin level, I had 3.2 mmol/L with severe symptoms , but I was told this was not low it was normal . Also I did not have insulin resistance. But these were completely ignored , I was diagnosed with type 2 diabetes, because I was not a kid ( I was told like this last time), instead of reactive hypoglycemia. I have been treated as type 2 for more than 5 years . And he does not support Keto !
I have found a new doctor , who does not ignore my hypo and also support Keto diet .. what a relief!!
My previous doctor is old and he does not remember what he said .. he said ,” You don’t have diabetes “. He made me confused and frustrated..
I have a hope for my new doctor .
Yep; I had similar experiences. The clinical guideline for the fasting test being 2.2 makes no sense as most would be unconscious at that point. I know I would be, based on how I feel at 3. They don’t seem to care unless we’re on the verge of death, even if our quality of life is completely rubbish. I hope your new doctor is more helpful! I’m feeling pretty sad and frustrated about my situation at the moment, but eating low carb doesn’t seem to be harming!I had a glucose tolerance test with insulin level, I had 3.2 mmol/L with severe symptoms , but I was told this was not low it was normal . Also I did not have insulin resistance. But these were completely ignored , I was diagnosed with type 2 diabetes, because I was not a kid ( I was told like this last time), instead of reactive hypoglycemia. I have been treated as type 2 for more than 5 years . And he does not support Keto !
I have found a new doctor , who does not ignore my hypo and also support Keto diet .. what a relief!!
My previous doctor is old and he does not remember what he said .. he said ,” You don’t have diabetes “. He made me confused and frustrated..
I have a hope for my new doctor .
That is great news @Catkysydney
Now you can move forward with a doctor that is concerned with being non diabetic and have hypos.
Maybe you can teach him a few tips about RH.
Being misdiagnosed is a road that is not good for your health.
Best wishes.
Yep; I had similar experiences. The clinical guideline for the fasting test being 2.2 makes no sense as most would be unconscious at that point. I know I would be, based on how I feel at 3. They don’t seem to care unless we’re on the verge of death, even if our quality of life is completely rubbish. I hope your new doctor is more helpful! I’m feeling pretty sad and frustrated about my situation at the moment, but eating low carb doesn’t seem to be harming!
That is more good news for you @Catkysydney and I'm only giving you advice through my experience.Thank you very much for your kind reply , Lamont !
New doctor organised blood tests, so I will know I have type 1 or not. ( I would like to make sure … I don’t have insulin resistance and also never been overweight.. now nearly underweight…lol )
I think he takes my situation seriously , so my next appointment will be 40 min. He told me that we would have a lot to discuss.
My blood sugar was 3.2 mmol/L, it was low enough , but I was told it was normal it should be below 3.0 to be low , and completely ignored. Just 0.2 difference …
We all need a supportive and reasonable doctor .
My fasting blood sugar is still high ( below 7.0 but higher than 5.5 ).
I will keep doing Keto diet. So far so good . No spike and no hypo ..
Thank you very much for your helpful advice !!
Without your advice , I could not do Keto ….
That is more good news for you @Catkysydney and I'm only giving you advice through my experience.
No spikes and hypos is always good.
And hopefully a lot less symptoms.
I would still ask if one hypo at under 3.5 is normal.
What if you have consistent hypos at those levels?
One is fine but five in a day?
Even two in a day when you react to food should give any doctor, that something is not right, especially with the symptoms. And being like me, non diabetic.
It is not logical.
Best wishes.
I gave an optimistic rather than a winner emoji. Though you deserve both.Hi Lamont ,
I don’t have hypo at the moment .. happy .. because of Keto diet , I don’t have spike !
I was diagnosed with type 2 diabetes ( I don’t have insulin resistance ) 5 years ago, but last time when I saw my GP, he told me that I don’t have diabetes …
I have found a new GP , I would like to be understood and monitored my health situation by my doctor . I heard reactive hypoglycemia people may develop type 1 or type 2 later..
My new doctor did not ignore my hypo . He ordered blood tests for me. I feel relieved .
I will ask my new doctor if blood sugar under 3.5 is normal .. I thought under 4.0 is low (according to website…)
I found him from “defeat diabetes Australia “, they have a list of doctors who support low carb diet .
Thank you very much for your experience and knowledge!! I think you know about hypo more than most of doctors…
I gave an optimistic rather than a winner emoji. Though you deserve both.
RH can be a precursor to T2, I have been borderline due to my Anxiety issues etc.
But I'm battling.
I'm so glad and you are finding keto to your liking.
For T1, under 4 is not good, and needs treating.
For T2, the level is below 4, and below 3.5 with symptoms needs treating.
With RH, under 3.5 needs a nudge up, but below 3 needs more than a nudge, but you do have to watch out for the rebound effect. Which is when because of a hypo, you overtreat the hypo, which causes another spike and reaction, which then causes another hypo.
I would like to think the hypo hell period before diagnosis (I didn't have a clue) And according to my endocrinologist, when I asked him, how bad was I? He answered, that I was very ill, he said if it wasn't for my fasting bloods being normal and continuous hypoglycaemic episodes. It would have been very difficult to diagnose. The second appointment I had a very bad hypo, much worse than the first appointment, and it was below 3. A cuppa and a couple of biscuits later, I was feeling better.
It was the recommended dietary regime of porridge, (no milk, no sugar)that was causing it.
Hence, he demanded to stop eating the stuff.
And from the first eOGTT, after full panel bloods, good diary and testing, testing, testing. The hypos started to be less frequent. Until the fasting test, when, I found that not eating was so good for me.
Weird or what? I do understand the science behind hypos.
Our hormones (including insulin) are probably the causes of so many health issues, and the health industry, don't know the half of it. From the first phase response, to our gut biome, and digestion, our organs. It is so complicated. Then throw in, that each of us is completely different in so many ways. Where we live, our lifestyle, our favourite foods and more.
Do let us know how you get on.
Best wishes.
I will try though the tests do use different measurements.Hi Lamont ,
You know a lot .
According to website low blood sugar is below 3.9 ..
I agree with this , because the symptoms start around that number .
Could you interpret my insulin numbers , please ??
When I had a glucose tolerance test with insulin level. I did not have insulin resistance . My insulin level was not too high , in a normal range.. Fasting was 4mU/L( under 10 was normal ) Drinking 75g of glucose , 2 hour after that insulin was 29, ( under 60 was normal ) then dropped to 9. How can I interpret this, please ?? It is complicated to me…
Do you have any idea ?? What happened when you had a test ??
I will try though the tests do use different measurements.
I will apologise before I carry on.
I am convinced that you have a lower response than normal, it is clearly not high, as your fasting is quite low, this correlates with my fasting and first phase results.
The second reading is obviously low. I would like to see the second phase result, which should have been around the spike, at around the hour mark. I'm going my spike.
And I think it is near your normal levels, clearly low again, similar to your fasting pre test levels.
I do think that the important reading is the pre test. It's low.
That is why you have an abnormal spike with the glucose.
As with RH during an eOGTT, low insulin pre test.
High insulin after spike, then as the BG levels drop toward's normal, it drops to your normal (ish) laevels.
no insulin resistance, but I think you have insulin sensitivity.
I tried.
I know from my talking with endocrinologist that insulin levels tend to 'react' to glucose levels depending on the sensitivity and production of it to the levels of insulin resistance. Which I did.
So most, including me, tended to overproduction of insulin. Hence the weight gain. And when I went low carb/keto, the weight dropped off.
Further to this, the blood tests look for kidney and liver function tests, to show how they are coping with the misused insulin and high glucose cos of the abnormal spikes.
I always go with my endocrinologist, who told me for Hypoglycaemic patients that are non diabetic, 3.5 is a better yardstick. And I'm not going to argue with the guy that changed my life.
Don't forget we all feel the symptoms of rapid drops and hypos at different levels.
Hope this helps.
Best wishes.
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