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Reactive hypoglycemia without diabetes newbie

Shiv30

Shiv30

Member
Messages
11
Type of diabetes
Prediabetes
Treatment type
I do not have diabetes
Hi all. Just made myself sign up for support and advice really. At my wits end. In 2012 I had a massive hypo, never had one in my life before then. Ended up in resuscitation with blood sugars of 1.8, very poorly and I was in hospital for 10 days still none the wiser when I left. I've had a baby since then so diagnosis was delayed , however after numerous tests I have now been diagnosed with reactive hypoglycemia without diabetes. I have to take my bloods sugars regularly and I have managed it well for a good while now. However the last 5 days I have been really yo yoing with regards to my results and I've had an awful headache and nausea. I went as low as 2.4 yesterday and I'm just really concerned as I don't know what to do. I went to see doctor and he just said eat. I get so frustrated as I don't think a lot of medical professionals fully understand reactive hypoglycemia . Even if I eat my blood sugars can still drop. Anybody out there experience the same. What should I do. If I go to a&e they will say it's not an emergency, however I feel I'm heading that way help......
 
Hi and welcome. I think some of the members will be along soon who can offer useful advice here. Really sorry I can't offer anything of use, but hope you get sorted out soon and start to feel better
 
SueB743 said:
Hi and welcome. I think some of the members will be along soon who can offer useful advice here. Really sorry I can't offer anything of use, but hope you get sorted out soon and start to feel better
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Thank you for your message. I'm hoping I get some advice from someone that understands reactive hypoglycemia without diabetes , my consultant said it's rare, but I'm guessing I will find many people on here who can help. Or at least I'm hoping xx
 
Welcome aboard, Shiv - I'm going to tag @Brunneria as she is an RH sufferer. I'm sure you will find her to be extremely informative.
 
AndBreathe said:
Welcome aboard, Shiv - I'm going to tag @Brunneria as she is an RH sufferer. I'm sure you will find her to be extremely informative.
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Thank you and breathe. I'm really feeling I need as much support and advice as possible right now. I'm only 29, nearly 30 and I feel so rubbish all the time. I'm a member of slimming world and I tend to eat jacket potatoes and pasta as this is free food and now I don't have a clue what to eat as all I'm seeing is carbs will make me feel worse , thanx again for tagging someone who can hopefully help. Bless u xxxxx
 
Hi @Shiv30 and welcome.

As you will see from the RH thread suggested above, you are not alone!

The key to controlling RH is making sure you wont eat things that set it off - so avoid sending your blood glucose up (with carbs) and you wont get the 'reactive' bit, where your bg drops and makes you feel so ill.

That is the key to it - in a nutshell. You get to eat everything else, proteins, fats, non starchy veg, some fruit (the not sweet ones) and all sorts of low carb baking and treats.

Have a read of the RH thread, and then ask any questions you like.
 
Hi @Shiv30

I have the condition RH.

I know how you feel!

You have probably read the RH thread by the time I've posted.

Ask away, about how controlling the condition by food alone.

It can be done!

And you are right about doctors not knowing about RH!

Welcome to our unique club!
 
Shiv30 said:
Thank you and breathe. I'm really feeling I need as much support and advice as possible right now. I'm only 29, nearly 30 and I feel so rubbish all the time. I'm a member of slimming world and I tend to eat jacket potatoes and pasta as this is free food and now I don't have a clue what to eat as all I'm seeing is carbs will make me feel worse , thanx again for tagging someone who can hopefully help. Bless u xxxxx
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You don't necessarily need slimming world. And eating spuds and pasta would have me really ill!

Please read the RH thread, as it is easier than posting the information again!
 
Shiv30 said:
Thank you for your message. I'm hoping I get some advice from someone that understands reactive hypoglycemia without diabetes , my consultant said it's rare, but I'm guessing I will find many people on here who can help. Or at least I'm hoping xx
Click to expand...

It is a very rare condition!

My endocrinologist quotes single digit numbers in his and other health service areas.
Have you a endocrinologist?
Mine is very special to me!
 
Thank you both loads . I'm working my way through the thread. I'm so happy I found this site. I felt so alone and confused. Obviously I wouldn't wish this on anybody but I'm so happy to have people that will understand what I'm talking about and how I feel when I'm crashing.
Some days I get so shaking and feel so unwell that I feel like my body is screaming for all the chocolate in the world. I'm sure some people just feel like I'm being greedy but I feel if I don't I will end up back in resuscitation . And that was so scary. I never want to end up in that position again. Xxxx
 
Yes, been there, done that, (except the hospital bit!)
I know all the symptoms.
You are not on your own, we are here as well as others in our forum with RH.
Hope you can get your head around the way to control the condition!
 
nosher8355 said:
It is a very rare condition!

My endocrinologist quotes single digit numbers in his and other health service areas.
Have you a endocrinologist?
Mine is very special to me!
Click to expand...
nosher8355 said:
It is a very rare condition!

My endocrinologist quotes single digit numbers in his and other health service areas.
Have you a endocrinologist?
Mine is very special to me!
Click to expand...
I'm very special when I've been in for my appointments. I usually have a whole team in and loads of students! I had the test last year where I had to drink the glucose drink and then fast for 6 hours whilst they took my blood sugars every hour and my bloods. It turns out even after the glucose my blood sugars dropped way to low, then in May I had to go into hospital to fast for 72 hours. Even the nurses were asking me why I was there and what is reactive hypoglycemia! I couldn't believe it , I was on a diabetes ward. He tells me he is a diabetic consultant, which is confusing in itself as I don't have diabetes lol! Grrrrrr......
 
Shiv30 said:
I'm very special when I've been in for my appointments. I usually have a whole team in and loads of students! I had the test last year where I had to drink the glucose drink and then fast for 6 hours whilst they took my blood sugars every hour and my bloods. It turns out even after the glucose my blood sugars dropped way to low, then in May I had to go into hospital to fast for 72 hours. Even the nurses were asking me why I was there and what is reactive hypoglycemia! I couldn't believe it , I was on a diabetes ward. He tells me he is a diabetic consultant, which is confusing in itself as I don't have diabetes lol! Grrrrrr......
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I'll repeat my last post, but I did do the hospital fast (80 hours!)
Have had the OGTT, many times and do have to go again soon!
They don't know!
My endocrinologist is also a diabetic specialist. But he has a PhD in blood glucose condition of the pancreas and liver!
I was misdiagnosed as T2. And I'm still on the diabetic register, so I don't have to pay for my prescription, for my meds and my testing strips.

Have you a meter?
 
nosher8355 said:
I'll repeat my last post, but I did do the hospital fast (80 hours!)
Have had the OGTT, many times and do have to go again soon!
They don't know!
My endocrinologist is also a diabetic specialist. But he has a PhD in blood glucose condition of the pancreas and liver!
I was misdiagnosed as T2. And I'm still on the diabetic register, so I don't have to pay for my prescription, for my meds and my testing strips.

Have you a meter?[/QUOTE
Click to expand...
 
Ah yes, i treated choc as a major food group for decades.

Do you want to know why it appeals to us so much? :)

The sugar in it feeds the low blood glucose, but the fat in it feeds The Hunger, making us feel satiated. But the problem is that it never lasts, so you always go backf or more...

Don't worry, you will get some real help here, and it has the potential to make a real difference to your life.
 
Yes, the hospital provided me with one. I've never needed to buy strips and lancets as my step mum has diabetes and has hundreds, so quite handy as she gives me some. I've been testing all day today. I'm feeling a little better this evening. Hubby had forced me to eat, although as you will know it's a vicious cycle as I feel sick and don't want to eat.
Honestly thank you so much for your messages tonight. You really don't know how much you have made a difference. It was really getting to me today. I was really at my wits end so thank you so much Xxxx
 
I'm so
Brunneria said:
Ah yes, i treated choc as a major food group for decades.

Do you want to know why it appeals to us so much? :)

The sugar in it feeds the low blood glucose, but the fat in it feeds The Hunger, making us feel satiated. But the problem is that it never lasts, so you always go backf or more...

Don't worry, you will get some real help here, and it has the potential to make a real difference to your life.
Click to expand...
I'm so happy for you both coming to my rescue. Thank you
 
I've also been told to purchase a medical tag incase of emergencies. My only concern is if I get it engraved with reactive hypoglycemia without diabetes , no one will know what it is haha! Sorry I've gotta laugh. Only way I get through this some days
 
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