sorry @iBelle
Please don't let this demoralise you, or put you off doing your own investigations (armed with your meter).
It is an all too familiar story on this forum - but please remember, it is YOU who has to live with this condition, and YOU who needs to find the best way for YOU to manage it. All dieticians will do is make suggestions.
Keep posting, keep asking, keep experimenting, and we will be here to help.
The endocrinologist told me I have idiopathic postprandial syndrome. .. ie my blood sugar stays within normal range. However it is usually in the low 4s before eating and I have had 3.9 recorded a few hours after a hypo. If I exercise extensively ... like a 3 hour walk. .. I then go into a deep sleep for 3 hours. My bg is around 4.1 before I become 'comatose '(?). Although I've had a 3 hour gt test I'm not convinced that my levels don't fall below 4 more often. I've been prescribed metformin which I understand lowers bg. I haven't started taking it yet as I've read it lowers bg and with usual readings in the low 4s it concerns me that it might take it below 4. Any advice /thoughts?
Sorry for the delay. Saw the endo again. I also had I new OGTT done with insulin levels this time. Had to stop taking the Metformin a week before which made me feel real dizzy for 2 days.
Can't say I'm less confused. I don't have my results here so can't give you the levels but same thing happened. I ended the test with a hypo of 36mg/dl - 2.0mmol/l.
My glucose spiked at 118mg/dl- 6.5mmol/l after 1 hour and a insulin level which was still more or less normal. Kind of borderline insulin resistance (depending on the cut off) according to my endo. But the rest of my insulin levels didn't seem to match my glucose levels and had my endo confused. So now I still don't quite know what is causing my hypo's. She was going to present my results to another endo and call me back. Haven't heard from her yet. Meanwhile I've been feeling more fatigued and have more muscle soreness. I don't know whether it's my body adjusting to not being on Metformin anymore or if it was actually doing something for me after the side effects subsided.
As metformin reduces the amount of glucose released by the liver I'd have thought that it would be a bad thing to be taking when you are going low - it might not be causing the hypo but wouldn't it delay the correct response?
Hi,Heard back from the endo. Both she and her coworker endo agreed that my hypo's were quite low, with basically normal insulin levels. I'm not really insulin resistant so as far as I understand it's not high insulin levels that are causing my hypo's. They suggested to do a fasting test to see whether I still go hypo or not.
Do most of you diagnosed with RH have high insulin levels or insulin resistance or do some people also have normal insulin levels?
Metformin doesn't regulate insulin, as far as I know it acts on the liver not the pancreas.I'm not sure... If it regulates insulin you'd have less lows to begin with and wouldn't need the corrective response? Also, glucose released by the liver would also created a new insulin response? This is just me thinking about it, so I'm just guessing. Sorry, not really an answer to your question.
Happy 2018, everyone!
I decided to do the fasting test. I have an appointment next Tuesday.
Quick question:
This morning my bg was 54mg/dl 2 hours after breakfast. I decided to wait it out and see how long it took for my body to correct. I was at 68mg/dl after 10 minutes and 86mg/dl after 20 minutes.
I've done this a few times just to see what happens. Not that I really want to feel miserable ofcourse but I just wonder why it is that I feel at my worst when my bg is already back in normal range. It like the weakness, shakiness, sweating, irritability,... i.e. hypo symptoms set in too late.
With the 2 OGTTs I had the same thing. I was at 40 and 36 mg/dl and the nurse at the time asked me if I felt ok. I didn't feel too bad. It was only afterwards, when I walked out and while my bg was raising that I felt horrible and was wiped out for the rest of the day.
Anyone experience the same thing?
Hi, I'm glad you have learned quite a lot, it's not a great experience is it?So I did the fasting test. Was admitted to hospital for 3 days while doing the fast. It went fairly well. I mean, I didn't go nuts over it. My endo had warned me about possible extreme hunger and emotional effects.
They drew blood twice a day and checked my bg every 2 hours with a glucose meter.
I started with a bg of 64mg/dl which they thought was lowish. The first day/night was the worst. I wasn't extremely hungry but had hot/cold flashes, sweating, restlessness and was feeling fatigued. My levels stayed within the 60 mg/dl range for a day and dropped to 55 mg/dl by the next morning.
It went up and down a bit. But after that my bg stayed at 55mg/dl for a least 10 hours straight. Surprisingly I felt quite 'good'. I mean, I had some weakness when I got up or walked around the room but the other symptoms had disappeared. Both the endo and nursing staff thought it was kind of weird. But apart from some muscle soreness, I felt very calm and wasn't hungry. I actually felt better than the previous day and wondered whether the low but very stable levels had something to do with it.
My bg dropped to 47mg/dl twice but went up again into the 50 range after that. Had some slurred speech but wasn't feeling too bad.
By the end of day 3 I started feeling hungry for a few hours. They stopped the fast at midnight and my bg was back up to 65 mg/dl by then. Weirdly enough I was starting to feel worse again. They made me eat which was hard because I felt nauseous and wasn't hungry. I had whole wheat bread with a cheese spread and half a yoghurt and they drew blood again at 2 am. Afterwards I heard that my bg was at 180mg/dl then which I thought was too high but my endo ensured me this is normal because of the fast. It's normal to have these sort of spikes when you first start eating again. The rest of the night I was back to feeling restless and I woke up 2 hours later sweating. By morning I asked the nurse to check my bg once more as I wasn't feeling well and it had come back down to 68mg/dl. My emotions were all over the place and I felt quite fatigued and weak the rest of that day.
The good news: I didn't have a hypo below 40mg/dl which rules out insulinoma.
The not so good news: my other levels (insulin, cortisol, etc.) were within normal range. Both my endo and her colleague think my blood sugar is going quite low and told me that even with a fast they don't normally see levels that low (unless they end up confirming insulinoma with high insulin levels and bgs below 40mg/dl)? But they can't tell me why it's happening?
Considering the fact that I felt worse after I started eating again and was already back down to 68mg/dl by morning my endo thinks it may still be somewhat reactive and started me back on Metformin. Surprisingly she also suggested I try a lower carb diet as she agrees that for some people it works.
So yeah, I don't know. I'm confused. I'm eating less carbs and spread them throughout the day and I'm trying to give it time and another go. But after 10+ years of debilitating fatigue and not getting answers I don't feel that confident anymore.
The good news: I didn't have a hypo below 40mg/dl which rules out insulinoma.
The not so good news: my other levels (insulin, cortisol, etc.) were within normal range. Both my endo and her colleague think my blood sugar is going quite low and told me that even with a fast they don't normally see levels that low (unless they end up confirming insulinoma with high insulin levels and bgs below 40mg/dl)? But they can't tell me why it's happening?
Considering the fact that I felt worse after I started eating again and was already back down to 68mg/dl by morning my endo thinks it may still be somewhat reactive and started me back on Metformin. Surprisingly she also suggested I try a lower carb diet as she agrees that for some people it works.
Hi, I'm glad you have learned quite a lot, it's not a great experience is it?
The good news is you have a type of hypoglycaemia, maybe a different one than me!
But it is great news, you haven't got insulinoma or other pancreatic conditions.
I had the same experience during my fast, finding that not eating was somehow better for me. That continually eating was what was causing me to be ill!
Weird!
Well, yes, it is weird, that a diet that is supposed to be healthy, isn't that healthy for you, and not eating is better, eh?
Weird!
I still don't get the metformin tho!
I can only go by my experience.
The fasting is good for you, so try some intermittent fasting or only have food at certain times like I do! When it suits you.
Yes it is weird, not to eat regular, but we can't eat a so called healthy diet because it makes you and me ill!
So think outside the box, think and experiment about how food affects you, think about which foods send your bloods up, which is the trigger for insulin, which we don't want. Think about how some foods don't give you that spike, because as I have found out, no hyper, no trigger, no hypo! No fluctuations in bloods.
They should never have given you that bread, because even low GI or complex carbs still have too many carbs, which triggers the hyper.
We have to avoid them, you have to discover a balance of protein and fats to satisfy your body needs, which is the way forward.
The reason why your insulin was normal was because you have done quite a bit of low carbing, and fasting before the insulin test, but once you eat carbs, it starts again.
It is not easy, once you get started and find that you can do it and get that feeling as you did in your fasting test, your lethargy will go and your energy levels will increase.
I don't believe that your endo has much experience with Hypoglycaemia, as most don't, because as does mine, he still believes a certain amount of carbs is necessary.
I have been in ketosis, (which is where your bloods where after a day into your fasting test) very low carb for four years nearly. My health has improved dramatically! He won't interfere with my diet because it is working and it suits my lifestyle.
If you don't know why it happens, I will try and explain a little bit more.
When you eat you trigger hormones to get your digestive system working. These hormones process the food in your stomach, your gut biota helps with sorting out what goes where, glucose is derived from the meal to use as a primary energy source.
This triggers the insulin response, if you have like me, a weak initial response of insulin, the glucose doesn't get used to be turned into energy, so your glucose levels rise very quickly as the amount of insulin is too low. So, a secondary response of insulin is required, as our brain is telling your body to use the glucose, convert your glucose into energy, however, this second response, is too much, it is called an overshoot. This overshoot sends your blood levels down into hypo. Your brain tells you because you are going low, that it needs more glucose or energy, so you get that hunger. You eat again, you trigger the hyper, because you have too much glucose again, another secondary insulin response, another low. A viscous circle of hyper, then hypo. Fluctuating blood glucose levels all the time, which is not good!
Too much insulin is not recommended and won't get your health back.
The only way to stop the viscous circle is by eating very low carb and as I do, fasting intermittently.
You can eat very small meals every couple of hours to offset hypos, but you soon get fed up (pun) doing this, it is too much food that you don't really need or want.
You don't need carbs, there are plenty of members on this forum who have improved their health so much by going very low carb.
There is no cure, but if you take control and get your balance of foods right, you will see the difference. Learn from your fasting test, like I did.
And admit, that not being ill, is far better than being ill, and avoid what is causing your condition.
If you are not sure, keep asking, let us know how you are doing.
Best wishes
Am curious, did they measure your ketones level? Typically when our glucose and insulin level goes low, ketones would rise to compensate. If ketones doesn't rise correspondingly, our brain don't get enough energy to function.
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