I have a question. I have ordered Berberine to see if it would help with my blood glucose and whether or not it would stabilise me for the day. Has anyone here tried it and has it worked?
Hello, I am a little bit lost. I don't know if this is related to my reactive hypo. In the morning I am all itchy , everything around my neck feels too tight and it's like my skin is burning.If you wish to ask questions or are interested in asking anything pertaining to hypoglycaemia, diabetic or non diabetic. Ask here.
Hi and welcome back to our forum.Hello, I am a little bit lost. I don't know if this is related to my reactive hypo. In the morning I am all itchy , everything around my neck feels too tight and it's like my skin is burning.
Can I ask who your consultant is? I live up north and am yet to find one I feel listens to me!Make sure you record everything and take it to the doctors and try and convince him for a referral to a specialist in Hypoglycaemia!
You are now able to pick your consultant, wherever they practice! I have to travel 2 hours to see mine in Manchester.
@lovinglife, is it possible to pm @Oh766 please?Can I ask who your consultant is? I live up north and am yet to find one I feel listens to me!
I think you should be able to PM them, give it a try and if not please come back to me@lovinglife, is it possible to pm @Oh766 please?
as I believe the poster needs a few more posts to be allowed to do so.
many thanks.
Did you manage to send the PM @Lamont D?@lovinglife, is it possible to pm @Oh766 please?
as I believe the poster needs a few more posts to be allowed to do so.
many thanks.
According to the pm!Did you manage to send the PM @Lamont D?
Hello Everyone,Hiya, just stumbled on this forum whilst searching my symptoms for months not having a clue what is up with me, a lot of my symptoms point to RH and I have noticed less and less episodes with a controlled diet however one day I am fine with a carrot and the next day not. I have a few questions if anyone could please try to answer them
1. How did you get a definitive diagnosis ?
2. (In the UK) would the endocrinologist give you a perscription for the test strips and/or a glucose monitor ? I’m finding it very expensive
3. Sometimes I feel a sudden drop, like I am having a stroke, I cannot move my fingers very well, I have confusion, clammy, fast heart rate, jelly legs and most of all I feel like my whole body is being pulled to the ground like a force of gravity. Has anyone had these symptoms?
4. When I have a really bad drop sometimes my sugars are showing normal, why?
5. Sometimes it can take me an hour or more (sometimes it’s as many as 4 hours!) to feel normal with 15g of carbs every 15 mins anyone had this?
6. Since I have been experiencing these episodes about a year now I have had blurry vision and when a bad drop happens it’s even worse. Anyone had this ?
7. One time I had a rapid drop from drinking Diet Coke, is that something that can happen?
8. Rice is my biggest trigger I’m finding I can’t even handle a spoonful, but pasta I am ok with, is it not always about the carb content?
9. I’ve read here that RH is usually when blood sugar goes high but I have never seen mine above a 7.3 after a meal, do people with RH usually have hypers? Because I am not technically getting hypers, just hypos from a normal blood glucose level.
10. I have recently had a blood test that showed a raised prolactin level (I’m not pregnant) and I was wondering if anyone has had this? Is raised prolactin a cause of RH or is RH the reason why it is raised? If anyone could shed some light I’d be greatful.
Sorry for the long post but I have been sick so long I’m trying everything to get some answers, I’ve had CT, MRI, Echo, ECG,EEG, chest xray, more bloods than you can imagine, at first they said it was anxiety, then it was vertigo, then ectopic beat panic attacks,then seizures, then silent migraines, took me about 8 months to figure it out on my own that it is usually food related and I am now trying to figure it all out.
Endocrinologist appointment in a few days although she didn’t believe me when I told her I think I have RH.
Trying to find the joy in life again. A bit scared to leave the house without a packet of skittles.
Thanks.
Sam.
Hiya Scott,Hello Everyone,
I'm new to this forum having recently been diagnosed with reactive hypoglycemia. I do not have diabetes. I'm in the process of adjusting my diet and finding it hard to get back to "normal".
I read your post Sam (SwishRadish) and many of the symptoms you mention I am also having. Especially these:
3. Sometimes I feel a sudden drop, like I am having a stroke, I cannot move my fingers very well, I have confusion, clammy, fast heart rate, jelly legs and most of all I feel like my whole body is being pulled to the ground like a force of gravity. Has anyone had these symptoms?
4. When I have a really bad drop sometimes my sugars are showing normal, why?
5. Sometimes it can take me an hour or more (sometimes it’s as many as 4 hours!) to feel normal with 15g of carbs every 15 mins anyone had this?
6. Since I have been experiencing these episodes about a year now I have had blurry vision and when a bad drop happens it’s even worse. Anyone had this ?
Were you able to stablise or even eliminate these symptoms with diet?
Thanks,
Scott.
Scott, if I may,Hello Everyone,
I'm new to this forum having recently been diagnosed with reactive hypoglycemia. I do not have diabetes. I'm in the process of adjusting my diet and finding it hard to get back to "normal".
I read your post Sam (SwishRadish) and many of the symptoms you mention I am also having. Especially these:
3. Sometimes I feel a sudden drop, like I am having a stroke, I cannot move my fingers very well, I have confusion, clammy, fast heart rate, jelly legs and most of all I feel like my whole body is being pulled to the ground like a force of gravity. Has anyone had these symptoms?
4. When I have a really bad drop sometimes my sugars are showing normal, why?
5. Sometimes it can take me an hour or more (sometimes it’s as many as 4 hours!) to feel normal with 15g of carbs every 15 mins anyone had this?
6. Since I have been experiencing these episodes about a year now I have had blurry vision and when a bad drop happens it’s even worse. Anyone had this ?
Were you able to stablise or even eliminate these symptoms with diet?
Thanks,
Scott.
Hi SwishRadish,Hiya Scott,
I am happy to say that with proper management of my diet and exercise I was first able to stabilise and eventually fully eliminate the symptoms! It took me a lot of time and mistakes but I got there in the end.
The sudden drops I was having were before I made any changes to my diet and I was deffo eating carb sugar heavy.
sometimes my sugars would show normal with symptoms because I was also experiencing false hypos or delayed hypos. This is because my body was freaking out at the new changes and everything would set me off, sometimes emotional and stress factors too.
Unfortunately my eyesight never improved and I know the constant battle with hypos was the cause so I now have to wear glasses. That was the first warning I had when the hypos were about to hit. Along with lip tingling and sensory confusion.
Without changing my diet and exercising regularly these symptoms continued for over two years (I didn’t know it was RH for over a year!) and once I got myself into gear properly it took a 6 stone weight loss and a very strict eating routine to kick it. Unfortunately this is not the case for everyone but even if you make the changes and it reduces the number of episodes then that is a win!
Hope that helps.
Hi @nomadinsing and welcome to our forum.
I'm glad you found us.
Scott, if I may,
RH has many differing symptoms, more than you could be aware of.
We have probably had all these and more.
The blurry eyes is my first symptom of a spike happening and gets worse through the effect of the reaction.
If you read the sticky at the top of the thread page. There is a list of symptoms that we noted back then.
What do you mean normal? 3.5 to 6 mmols is normal.
It is the rapidly dropping blood glucose levels, that you get those symptoms of a sugar crash.
Symptoms persist throughout the spike and crash. And this can last as long as your BG levels are in rollercoaster ride, up and down from breakfast to bedtime.
And it is controlled by diet.
there has been a lot of those that have controlled their BG levels and myself included, had success with a very low or keto diet.
What tests have you had?
Do you have a glucometer or CGM, to monitor your BG levels?
do you have a specialist endocrinologist?
What dietary and treatment advice from your doctors have you had?
Has anyone explained why you have the symptoms?
I would advise reading some of the many threads about RH and dietary advice on the RH sub forum.
And ask questions, that is the reason for the forum.
I can understand the importance of understanding how you are feeling, not much support, the lack of information, I know, I went through all this when the condition was less known and most even on the internet, and what was on there was mostly rubbish.
Best wishes.
Hi Scott,HI Lamont,
Thanks for your reply and for all the messages you have posted here. I read a lot on this forum and found it super helpful, the only forum I've come across with such helpful info. If you know of any other sites worth visiting please do let me know.
My journey started 6 months ago when I was rushed to hospital because I thought I was having a stroke. After months of tests and continued "aftershocks" as I called them we finally got the RH diagnosis about a month ago. I did the 5 hour glucose test where they tested glucose and insulin levels and finally had a diagnosis. I am wearing a CGM and have completely flipped my diet to carb free almost keto. And the aftershocks have stopped. But I'm still finding the day to day to be a struggle. Rarely do I have a day when I feel 100% "normal" for the full day.
Some questions / comments from me:
1. My glucose levels are stable now. Always around 5 or 6. I never cross 7 and rarely drop below 4. Yet I still have symptoms almost every second day. I would describe the symptoms as feeling rocky, the sensation of being on a boat. And the feeling of dropping as SwishRadish described. If I'm sitting on the sofa I feel like I'm sinking into it, falling backwards.
2. My diet is very strict now but I wonder if it's too strict. I eat veggies and protein (chicken, fish, pork, eggs, yogurt) and that's about it. But I have to eat every 2 hours max, often every 90 minutes which makes me wonder if I am missing something in my diet.
3. I can't eat any carbs. If I try a small piece of wholegrain /wholewheat toast it sets me off. And even pumpkin or carrots are a no go let alone potatoes. It seems to be the same with fruit for me. I have tried berries with yogurt which seems to be recommended but I believe this also destabilases me. I've tried to reintroduce these foods slowly, but if I have one bad day it has a cascading impact for many days afterwards so I've stopped trying. Any tips on how to reintroduce foods like this slowly? Or I juts have to let them go?
4. Finally, I can't seem to get back to exercise yet. With the rocky symptoms above I even feel uncomfortable going for long walks. Or I simply do not have the energy for any exercise. Before my big episode 6 months ago I was in training to run a half-marathon, and now I can barely manage a long walk. Does the strength come back?
Thanks,
Scott.
I know exactly how she feels and that is a very dangerous thing. Any sugar level less than 60 can put you into a coma. I had issues way back when and my endo at the time put me on medication to regulate this. she never really told me what was wrong with me. then she stopped treating patients and went back to research. I had to find another Endo. I was at their office for 11 years and my insurance company switched. The insurance refused to pay for my medication so the Endo switched the medication to Monjouro which regulated the sugar and had a great side effect of weight loss. jump ahead 11 months later the insurance company started refusing to pay for this medication as well. I was not aware that my Endo had me classified as a weight loss patient not a diabetic patient. They refused to help me and told me I had to be off the medication for 5 months to get another bad A1C test so they could tell the insurance that I needed the medication. I spent 3 months miserable and I started tracking my blood sugar every 15 mn after eating for 2 hours and found that my blood sugar was dropping after eating to 45, or 50 or 38 so then I had to eat something to get my levels back up and this was a cycle all day long. I was low blood sugar to high. It was a roller coaster all day long and effected my work. I emailed the endo begged for help only to be told I was getting older and I would just have to deal with it. I started talking to my internal medicine doctor and giving him my blood glucose readings the same information I provided to my Endo. I could not stop crying I was in so much misery. The internal medicine doctor started researching what I was describing and found that what I was telling him was called "gut dumping"/ short bowel syndrome" which leads to a drop in glucose right after eating from over production of insulin. This leads to a condition that is termed "brittle diabetes" which is very dangerous because of the low sugar levels. It took my internal medicine doc 10 min to get an approval from the insurance company to pay for the medication due to my underlying condition. The endo almost killed me and according to everything I have read is that this condition is hard to diagnose because it is based largely on symptoms and blood tests that take blood every 15 to find out how you process glucose. Since the A1C results are 3 month glucose average my test would be close to normal based with mine going up and down all day long will average out to normal. Doctors don't take what their patients say seriously and write them off as lying to get what they want. This is so disgraceful to be told I was getting older instead of the doctor taking the time to investigate what could be a very serious condition; which mine was. They say this is rare, but what I am finding is that it is just rarely diagnosed. just based on what you are saying here.Nosher they advise her to avoid sugary foods as they tend to make her pass out.
I'm sorry that I seemed to have missed your post @leamason.I know exactly how she feels and that is a very dangerous thing. Any sugar level less than 60 can put you into a coma. I had issues way back when and my endo at the time put me on medication to regulate this. she never really told me what was wrong with me. then she stopped treating patients and went back to research. I had to find another Endo. I was at their office for 11 years and my insurance company switched. The insurance refused to pay for my medication so the Endo switched the medication to Monjouro which regulated the sugar and had a great side effect of weight loss. jump ahead 11 months later the insurance company started refusing to pay for this medication as well. I was not aware that my Endo had me classified as a weight loss patient not a diabetic patient. They refused to help me and told me I had to be off the medication for 5 months to get another bad A1C test so they could tell the insurance that I needed the medication. I spent 3 months miserable and I started tracking my blood sugar every 15 mn after eating for 2 hours and found that my blood sugar was dropping after eating to 45, or 50 or 38 so then I had to eat something to get my levels back up and this was a cycle all day long. I was low blood sugar to high. It was a roller coaster all day long and effected my work. I emailed the endo begged for help only to be told I was getting older and I would just have to deal with it. I started talking to my internal medicine doctor and giving him my blood glucose readings the same information I provided to my Endo. I could not stop crying I was in so much misery. The internal medicine doctor started researching what I was describing and found that what I was telling him was called "gut dumping"/ short bowel syndrome" which leads to a drop in glucose right after eating from over production of insulin. This leads to a condition that is termed "brittle diabetes" which is very dangerous because of the low sugar levels. It took my internal medicine doc 10 min to get an approval from the insurance company to pay for the medication due to my underlying condition. The endo almost killed me and according to everything I have read is that this condition is hard to diagnose because it is based largely on symptoms and blood tests that take blood every 15 to find out how you process glucose. Since the A1C results are 3 month glucose average my test would be close to normal based with mine going up and down all day long will average out to normal. Doctors don't take what their patients say seriously and write them off as lying to get what they want. This is so disgraceful to be told I was getting older instead of the doctor taking the time to investigate what could be a very serious condition; which mine was. They say this is rare, but what I am finding is that it is just rarely diagnosed. just based on what you are saying here.
Hi all, I'm new to all of this, got diagnosed a couple of weeks ago (hba1c 51 mmol/mol) and have since got a free libre gsm trial. I seem to get hypos (below 3.9 mmol/l) between 3-6am some nights and occasionally in the day, not sure if that's 'reactive' though, unless it's reacting to the last night's food? Have been eating low carb since I got the monitor. When I had a 'hypo' during the day I felt hungry but basically fine. As an adult I often exercise on no food (cycle to work and don't like breakfast!).
When I was a child I used to faint from time to time and my parents would give me something carb-ey to eat which helped. I'm Jewish and fast for Yom Kippur which has also led to some fainting episodes where I have to sit down, but after no food or water for 20 plus hours. Any ideas please?