Sugars dropping repeatedly-help

kitedoc

Well-Known Member
Messages
4,783
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
black jelly beans
Yes, moreso if you come to grief. You have BP readings similar to what lead a friend of mine to suffer a stroke. He had headaches before the stroke happened. Nose bleeds are in that danger list also if you read up on high BP symptoms.
Not sure what your BSLs are like during your hypos but falls and brain damage are possible.
Speak with your endo and get admitted. Waiting for blood tests results does not solve the immediate danger.
Those who say your BP just goes down again are not the ones who will suffer. Ask them how sending you home prevents you having a stroke - and if that happens who do you blame ??
You mention your Dad so there is a family history of heart trouble also and high BPs and low BSLs will not help that.
Please get admitted..
 
  • Like
Reactions: KarenTh

DCUKMod

Master
Staff Member
Messages
14,298
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
@Discovery22 - Sounds like a dire time at the moment, but if I may, I'd like to make a suggestion?

Between now and your appointment, it would be fab if you could find the time to gather some stuff together yourself? I'm thinking about a comprehensive list of your symptoms, and when you have, or had them, including things that "used to happen", but maybe have changed? Also, I'm sure they could (read should) be interesting in your family history.

I know when I went for an second, up the chain referral Endo appointment, for something that was (and to an extent is still) a maystery, the level of questioning and detail that guy went into was mind blowing. Actually, I learned a lot in that session (totally unrelated to me, but particularly in relation to my late father's medical history), but I came home exhausted from it.

I also took notes (note taking time can also be your thinking time), so that I had a decent record of what transpired, but also so that I could expand my own reading when I got home.

I'm a bit of an information sponge when it comes to learning, so it's not the same for everyone, but I would suggest now is a time to invest in your own health and well-being, and sometimes that takes the form of good preparation.
 

Discovery22

Well-Known Member
Messages
51
Yes, moreso if you come to grief. You have BP readings similar to what lead a friend of mine to suffer a stroke. He had headaches before the stroke happened. Nose bleeds are in that danger list also if you read up on high BP symptoms.
Not sure what your BSLs are like during your hypos but falls and brain damage are possible.
Speak with your endo and get admitted. Waiting for blood tests results does not solve the immediate danger.
Those who say your BP just goes down again are not the ones who will suffer. Ask them how sending you home prevents you having a stroke - and if that happens who do you blame ??
You mention your Dad so there is a family history of heart trouble also and high BPs and low BSLs will not help that.
Please get admitted..
Thank you for your help x
 

Discovery22

Well-Known Member
Messages
51
@Discovery22 - Sounds like a dire time at the moment, but if I may, I'd like to make a suggestion?

Between now and your appointment, it would be fab if you could find the time to gather some stuff together yourself? I'm thinking about a comprehensive list of your symptoms, and when you have, or had them, including things that "used to happen", but maybe have changed? Also, I'm sure they could (read should) be interesting in your family history.

I know when I went for an second, up the chain referral Endo appointment, for something that was (and to an extent is still) a maystery, the level of questioning and detail that guy went into was mind blowing. Actually, I learned a lot in that session (totally unrelated to me, but particularly in relation to my late father's medical history), but I came home exhausted from it.

I also took notes (note taking time can also be your thinking time), so that I had a decent record of what transpired, but also so that I could expand my own reading when I got home.

I'm a bit of an information sponge when it comes to learning, so it's not the same for everyone, but I would suggest now is a time to invest in your own health and well-being, and sometimes that takes the form of good preparation.
Hi. I've already started taikng note of what happens and when and when this happens I feel like this...ive also had times where my ankles and feet have swollen too. Plus my husband will be coming with me so he can support how bad I've been. I spent the whole day in bed yesterday feeling unwell. At one point I was having a hypo and my BP was high and my pulse was over 100 too and I felt so rubbish and desperate. It really wears me out. Thank you for your help x
 

Atlantico

Well-Known Member
Messages
85
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Hi. I've already started taikng note of what happens and when and when this happens I feel like this...ive also had times where my ankles and feet have swollen too. Plus my husband will be coming with me so he can support how bad I've been. I spent the whole day in bed yesterday feeling unwell. At one point I was having a hypo and my BP was high and my pulse was over 100 too and I felt so rubbish and desperate. It really wears me out. Thank you for your help x


You are in my thoughts, it must be awful to feel so dreadful. I keep checking your thread hoping you have got some help. I find it so sad that you can't get help NOW. I have sent you a virtual hug xx
 
  • Like
Reactions: Discovery22

Discovery22

Well-Known Member
Messages
51
You are in my thoughts, it must be awful to feel so dreadful. I keep checking your thread hoping you have got some help. I find it so sad that you can't get help NOW. I have sent you a virtual hug xx

Thank you. The support on here is amazing. I don’t think people realise how rubbish hypos make you feel. I had a good blood sugar day yesterday with absolutely no problems with it so today I’ve eaten exactly the same at the same time yet today I’m having hypos again
 

KarenTh

Active Member
Messages
37
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Hi @Discovery22

Sorry you are going through this.
Multiple hypos every day makes you feel helpless and very, very emotional.
Not having a good way to combat them makes everything feel much worse.

All I can do is tell you about my experiences. I have never been investigated for a tumour, and am confident that I don't have one. So if you have one, then what I am about to say is not relevent.

But if you have RH from overproduction of insulin in response to carbs, driving you into a hypo some time after eating, then what I am about to say may be very relevant indeed.

FOR ME the amount of brown bread and crackers you are eating would GUARANTEE that I had hypos. And then every time I reached for carbs to deal with the hypo, I would be GUARANTEEING another hypo a few hours later.

FOR ME the only way I was able to get off the hypo rollercoaster was to STOP eating the carbs that caused it.

And really, it is a very simple solution.
I took all the bread, rice, pasta, crackers, noodles, sweets, choc, sweet fruit, carby yogurts, desserts, sweet drinks and root vegetables out completely.
Then I replaced them with more non-starchy veg, kept the protein the same, and added in butter, coconut oil, and other healthy fats to replace the calories from the carbs.

I heartily recommend that you try this. Just for one day.
Start with a good breakfast of scrambled eggs and very low carb sausages or bacon. With butter on the eggs. No bread.
Then see how you go all morning.
If you have a wobble, then some cheese will sort that out.
Lunch of salad with lots of mayo and a protein source. I like chicken or tinned oily fish.
Same snack in the afternoon, if you want it.
Then a good dinner of meat or fish, with veg, and cheese or butter on the veg.

All very simple, and the only carbs are the ones in the green veggies.

Make sure you eat plenty. Forget about calories. Forget about the horrors of fat stabbing you in the heart. You are only doing this for one day as an experiment.

If your RH works like mine, you will have a comfortable day, no
Thank you. The support on here is amazing. I don’t think people realise how rubbish hypos make you feel. I had a good blood sugar day yesterday with absolutely no problems with it so today I’ve eaten exactly the same at the same time yet today I’m having hypos again
I am really feeling for you as all these symptoms sound horrendous. It sounds as if your pancreas is extremely sensitive and overreacting to many food types. After being placed on a 4 month waiting list to see an endo and feeling so ill I opted to go privately and was seen in 3 days. Is that an option for you? I got an immediate diagnosis of RH as it was very obvious to the consultant and all was confirmed after a 5 hour GTT. So pleased your husband is going with you. I was so tired and confused at the first consultation. I took nothing in - brain fog and low BS. Cutting out all carbs and sugars has saved me but it has taken 4+ months to start to level out. Keep us posted and get help ASAP.
 

KarenTh

Active Member
Messages
37
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
I am really feeling for you as all these symptoms sound horrendous. It sounds as if your pancreas is extremely sensitive and overreacting to many food types. After being placed on a 4 month waiting list to see an endo and feeling so ill I opted to go privately and was seen in 3 days. Is that an option for you? I got an immediate diagnosis of RH as it was very obvious to the consultant and all was confirmed after a 5 hour GTT. So pleased your husband is going with you. I was so tired and confused at the first consultation. I took nothing in - brain fog and low BS. Cutting out all carbs and sugars has saved me but it has taken 4+ months to start to level out. Keep us posted and get help ASAP.
PS porridge for breakfast is the only thing I can eat without my BS dropping. And eating every 2.5 to 3 hours. No bread, rice, pasta, potatoes, root veg, sugar, caffeine (very important) and no exertion as this lowers BS very quickly. Definitely no glucose tablets for me as this just sets up another spike and crash. Keep a supply of oatcakes with you at all times including your bedside table for during the night. My endo swears by oats!
 

Discovery22

Well-Known Member
Messages
51
PS porridge for breakfast is the only thing I can eat without my BS dropping. And eating every 2.5 to 3 hours. No bread, rice, pasta, potatoes, root veg, sugar, caffeine (very important) and no exertion as this lowers BS very quickly. Definitely no glucose tablets for me as this just sets up another spike and crash. Keep a supply of oatcakes with you at all times including your bedside table for during the night. My endo swears by oats!

Thank you for your help. I’ll have to ask my endorsement about the oats and I’m not supposed to eat them with my diverticular disease. No harm in asking though
 

KarenTh

Active Member
Messages
37
Type of diabetes
Reactive hypoglycemia
Treatment type
Diet only
Thank you for your help. I’ll have to ask my endorsement about the oats and I’m not supposed to eat them with my diverticular disease. No harm in asking though
I really hope you can. There are many variations and I find pin head/steel cut oats from a health food shop work the best.
 
  • Like
Reactions: Discovery22

kitedoc

Well-Known Member
Messages
4,783
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
black jelly beans
Thank you. The support on here is amazing. I don’t think people realise how rubbish hypos make you feel. I had a good blood sugar day yesterday with absolutely no problems with it so today I’ve eaten exactly the same at the same time yet today I’m having hypos again
Please - you can get help now - please go to hospital !!!
 

Lamont D

Oracle
Messages
15,796
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
I am really feeling for you as all these symptoms sound horrendous. It sounds as if your pancreas is extremely sensitive and overreacting to many food types. After being placed on a 4 month waiting list to see an endo and feeling so ill I opted to go privately and was seen in 3 days. Is that an option for you? I got an immediate diagnosis of RH as it was very obvious to the consultant and all was confirmed after a 5 hour GTT. So pleased your husband is going with you. I was so tired and confused at the first consultation. I took nothing in - brain fog and low BS. Cutting out all carbs and sugars has saved me but it has taken 4+ months to start to level out. Keep us posted and get help ASAP.

Yes, a five hours test will give you a Hypoglycaemia diagnosis. But it is not a complete diagnostic in detail. In my experience a 72 hours fasting test, will only give the true diagnosis of which type of RH you may have.
This test, will give your endocrinologist, the proof that it definitely is RH or another pancreatic condition. The tests are only ruling out other conditions until it cannot be anything else but RH!
I don't mean to put down your endocrinologist, but not doing the fasting test could be because he is unaware of hypoglycaemia, RH and its many types!

I'm really glad you have got really good control and not suffering as many hypos.
PS porridge for breakfast is the only thing I can eat without my BS dropping. And eating every 2.5 to 3 hours. No bread, rice, pasta, potatoes, root veg, sugar, caffeine (very important) and no exertion as this lowers BS very quickly. Definitely no glucose tablets for me as this just sets up another spike and crash. Keep a supply of oatcakes with you at all times including your bedside table for during the night. My endo swears by oats!

My endocrinologist was really hoping I could go back to having oats as a healthy option for breakfast, unfortunately, oats are only another spike waiting to happen for me. But because before diagnosis oats was my saviour, you see my GP, then my endocrinologist (twice) noticed that I was having a hypo during appointments and convinced them something other than my misdiagnosed T2 was happening to me!
Also my endocrinologist advised me to try a list of so called healthy foods that are not well known, but contains low amounts of carbs and contain high fibre and good nutrition, such as pumpernickle bread, but alas, after showing him the results from my food diary, he too had to admit, that for me, I'm carb intolerant.

Best wishes
 
  • Like
Reactions: Discovery22

Discovery22

Well-Known Member
Messages
51
@Discovery22 - Sounds like a dire time at the moment, but if I may, I'd like to make a suggestion?

Between now and your appointment, it would be fab if you could find the time to gather some stuff together yourself? I'm thinking about a comprehensive list of your symptoms, and when you have, or had them, including things that "used to happen", but maybe have changed? Also, I'm sure they could (read should) be interesting in your family history.

I know when I went for an second, up the chain referral Endo appointment, for something that was (and to an extent is still) a maystery, the level of questioning and detail that guy went into was mind blowing. Actually, I learned a lot in that session (totally unrelated to me, but particularly in relation to my late father's medical history), but I came home exhausted from it.

I also took notes (note taking time can also be your thinking time), so that I had a decent record of what transpired, but also so that I could expand my own reading when I got home.

I'm a bit of an information sponge when it comes to learning, so it's not the same for everyone, but I would suggest now is a time to invest in your own health and well-being, and sometimes that takes the form of good preparation.

Hi all, 2 days ago I had a severe hypo that happened in just a couple of minutes. Luckily I managed to get 3 fast acting glucose tablets down me before collapsing on the bed. My other half came home and although I could hear him I couldn’t move or talk. He suspected a hypo and checked my blood but I couldn’t tell him that I had used the hand he was testing on to eat my glucose tablets and would have residue. With a reading of 4.4 he thought I was ok and went downstairs. Once I could move I went down and told him and he asked what my levels were now (which were 3.1). I advised him to wash my finger before testing if it happens again.

Well today my other half came with me for my appointment and you was right. The endocrinologist wants me back in hospital to do a whole load of tests....further ones for Pheochromocytoma and a 72hr fasting glucose test. He said this situation is far too dangerous and will try to find me a bed as soon as possible. He advised if I have another bad hypo in the meantime to go to A&E or call an ambulance

I really don’t want to go back into hospital but he said it’s too dangerous to do the tests he wants as an outpatient

Thank you all for your advise and support. It has stopped me feeling quite so lonely and it helps knowing that people understand how rubbish hypos make you feel
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
I am so glad you came back and updated us!
And incredibly glad that your endo is taking this seriously and moving urgently.

Please be careful, and ring the emergency services if you need to.
 
  • Like
Reactions: Discovery22

Atlantico

Well-Known Member
Messages
85
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
Hi all, 2 days ago I had a severe hypo that happened in just a couple of minutes. Luckily I managed to get 3 fast acting glucose tablets down me before collapsing on the bed. My other half came home and although I could hear him I couldn’t move or talk. He suspected a hypo and checked my blood but I couldn’t tell him that I had used the hand he was testing on to eat my glucose tablets and would have residue. With a reading of 4.4 he thought I was ok and went downstairs. Once I could move I went down and told him and he asked what my levels were now (which were 3.1). I advised him to wash my finger before testing if it happens again.

Well today my other half came with me for my appointment and you was right. The endocrinologist wants me back in hospital to do a whole load of tests....further ones for Pheochromocytoma and a 72hr fasting glucose test. He said this situation is far too dangerous and will try to find me a bed as soon as possible. He advised if I have another bad hypo in the meantime to go to A&E or call an ambulance

I really don’t want to go back into hospital but he said it’s too dangerous to do the tests he wants as an outpatient

Thank you all for your advise and support. It has stopped me feeling quite so lonely and it helps knowing that people understand how rubbish hypos make you feel

Very pleased to hear that you are now going to get some much needed help. Please keep us updated.
Thinking of you. xx
 

Discovery22

Well-Known Member
Messages
51
Update: I was admitted for the 72 hr test and it has confused the drs even more. Overall my sugars dropped to 2.7. During the test I discovered when laying on my left side me sugars dropped. When laying on my right side they went up and walking up and down stairs made them go from 2.7 to 3.8! Yet other times my sugars drop quickly and even slow walking makes it worse. So my consultant is wondering if this Pheochromocytoma/paraganglioma (a new suggestion) is causing even more problems than first thought. By the way, I had a hypo on the way home from the hospital

He said he may re-admit me and repeat the test. I’m due to have a 24 tape as my heart rate spiking has got worse. The other day I was rushed to hospital with chest pain and my pulse was around 158 for nearly 2 hours while resting. They discovered this is also caused by postural tachycardia (by standing) and that I also have postural hypertension.
While I was in there he took blood to test my adrenals and said it’ll take a while to get the results as it’s a rare test and is only processed in 2 places in the uk
 

Brunneria

Guru
Retired Moderator
Messages
21,889
Type of diabetes
Type 2
Treatment type
Diet only
Update: I was admitted for the 72 hr test and it has confused the drs even more. Overall my sugars dropped to 2.7. During the test I discovered when laying on my left side me sugars dropped. When laying on my right side they went up and walking up and down stairs made them go from 2.7 to 3.8! Yet other times my sugars drop quickly and even slow walking makes it worse. So my consultant is wondering if this Pheochromocytoma/paraganglioma (a new suggestion) is causing even more problems than first thought. By the way, I had a hypo on the way home from the hospital

He said he may re-admit me and repeat the test. I’m due to have a 24 tape as my heart rate spiking has got worse. The other day I was rushed to hospital with chest pain and my pulse was around 158 for nearly 2 hours while resting. They discovered this is also caused by postural tachycardia (by standing) and that I also have postural hypertension.
While I was in there he took blood to test my adrenals and said it’ll take a while to get the results as it’s a rare test and is only processed in 2 places in the uk

Goodness, I hope they get to the bottom of it - and thank heavens your symptoms appeared on command, so they believed you.
Glad they are investigating properly.
 

Discovery22

Well-Known Member
Messages
51
Goodness, I hope they get to the bottom of it - and thank heavens your symptoms appeared on command, so they believed you.
Glad they are investigating properly.

Trouble is they couldn’t complete the test as they can only test C Peptide apparently if they go on or below 2.2. Forgot to mention he has now started me on metformin 500mg twice a day and if I’m honest it seems to have improved it. I’m still getting drops but they don’t seem to drop below 3.0. Not sure if it may need increasing?