Probably like allot of you reading this, I have a health problem and am an avid Internet user so ive searched the internet for hours reading article upon article about my symptoms, desperate to try and improve my health. This forum is one of the only ones ive found on hypoglycemia so I wanted to share my first hand experience with other people searching the internet.
Im a 26 year old man who has suffered from fatigue, depression, anxiety, dizzy spells, nausea, weakness, blurred vision for my whole adult life. I cant pin point the exact time I first recalled these symptoms but probably around the age of 18. I went to my doctors (NHS) when I was 18 and had all the normal blood tests, all of them came back normal, apart from blood glucose which was very low. They sent me back for a fasting blood glucose test and it came back normal so they wrote off the initial reading as an error and I didnt think anything else of it. For my entire adult life ive believed ive had a mental illness, ive seen doctors, psychiatrists, psychologists, councillors, accupuncture practioners, hypnotherapists all without any result. The whole time being off and on anti depressants which did make the symptoms feel better. The doctors were happy for me to live a half life relying on anti-depressants.
My life has been going well in recent years regarding my career, relationships, family so I decided to leave the medication (April 2008). For the past 9 months ive struggled with my mood, energy levels and symptoms going up and down. Ive always eaten healthy and exercised, ive run marathons and life weights. I tried all sorts of vitamins and minerals and herbs with no luck. I started to link the way I felt with food about 3 months ago, after 2 months I had worked out that simple sugars in excess caused the worst symptoms but I was still quite ill avoiding them. Id read that I should be on a low GI diet, tried it with no luck. I east just porridge as carbohydrate but I still suffered.
I went back to the doctors again, telling them about my findings. I had a normal blood glucose test and it was 1.1mmol. They then sent me for a fasting test, which came back normal. Again the doctor wanted to write it off as a error. I persisted and literally refused to leave the room until he gave me a Glucose Tolerance Test. I was sceptical that this test would find my problem as it only measures post prandial glucose 2 hours after consumption of glucose. Quite often the hypoglycemic dip is 3, 4 or 5 hours after eating. Anyway I was lucky, the result came back as 2.5mmol at +2hours which was enough to convince the doctor I had reactive Hypoglycemia and it was the probably cause of all my symptoms that they had treated with an anti depressant for years.
Im now seeing a specialist and having more tests done to try and find out why im so sensitive to carbohydrate, and I will report back. I know that even a mouthfull of orange juice, a spoon of porridge can give me RH.
Im a extremely healthy individual at a perfect weight who exercises daily. It isnt just people who eat unhealthy that get this condition, or obese people, or unfit people. It can occur to anyone, and it extremely disabling and shouldnt ever be underestimated.
Ive learnt in recent weeks, that drinking plenty of water and eating more fibre helps a little, which is giving me some relief while the doctors come up with a decision, perhaps in months this dietary change will cure it, who knows.
The doctor has suggested im Insulin Resistant, and im awaiting test results, this is quite possible, and they will probably treat it with Metformin which ive read has transformed some peoples lives with our condition.
It is important that everyone gets diagnosed by a doctor and tries and find the cause of the RH, there is drugs which have transformed people allowing them to eat anything they like.
Ive seen alot of people on here are following an elimination diet, which is great if it works for them. Whilst I agree its important to remove anything high GI or refined. For example pure orange juice hits me ten times as bad as just an orange becuase it has lost its fibre. I beleive we should be eating foods in combination with others. Im finding that carbs that when eaten on their own are bad, arent so bad when you eat them with a portion of fibre, protein and fat as well. Fibre slows the digestion greatly, giving a more controlled release of glucose to the blood which is alot easier for the pancrease to deal with. What im saying is a slice of white bread is bad on its own, but fine if you eat lettuce, leaves, vegetables at the same time. Try and aim for 35gram of fibre a day from a variety of sources and eat fibre at every sitting.
Sorry to go on, I truely hope that this helps at least one person. Feel free to contact me if youd like to chat and exchange support.
Hey Tommy. What the doctor says is happeneing and also says its quite common in Insulin Resitance people is the following.
My blood sugar raises and insulin is released, my cells then are resistant to the Insulin and my blood sugar isnt lowered enough. My pancreas then panics and releases more insulin, over shooting the amount required which then takes my blood sugar to low.
Now this is the theory but im quite open to the fact its not fact. My doctor can only diagnose on what he can see, and he thinks he is a "specialist" in Insulin Resistance and insists he has seen lots of people like me.
Im on Day 3 of Glucophage, one 500mg tab a day to start with, which I will build up on. Haven't noticed any difference yet.
i also suffer from reactive hypo and ur experience sounds pretty similar to mine, i eat healthy enough but dont belive that diet can control this in certain ppl. maybe if i go back to the docs for sum more tests, i have thought for a wile that this could be to do with insuline response. i also have been looking into cortisol and believe this also has something to do with it, i fink my body cannot release the right amounts of cortisol and insuline at the right times. just a thought tho
Hey Tommy. Have you been tested? Im completely deflated at the minute, im on day 4 of this drug Metformin and it has done nothing yet. Really got me down as the doctor suggested that I would notice an improvement after the first day. He started me on a low dose, so I will ring him and ask him if I can up the dose. Dont have much confidence however.
Yup ive read that cortisol plays a part as well, I believe it is factor in how effective insulin is in removing glucose from the blood. Ive had a blood cortisol test which was normal. Ive just sent off for an Adrenal Stress Index test which measure cortisol and dhea throughout the day. Ill let you know if anything comes out from that.
Do let us know if you find anything interesting about cortisol.
ive bin looking into cortisol quite a bit but have never bin tested, but i believe i could have high levels of cortisol which is causing me to get stressed and also atrophy (muscles get smaller) as i regularily weight train and am finding it so hard to gain muscle like i used to in the past which is annoying also, it could be worth me checking up on that also
Tommy, you sound much like me. Im usually a keen weight lifter, but my fatigue has got the better of me in recent months so cant last more than a single set of squats before I run for the door.
Been reading about Candida build up in the gut today, seems interesting. Notably for me as I used to take tetracycline anti biotics for acne which are well known to cause candida problems. I took this simple test today during the day and failed badly, indicating a candida problem. Your meant to do it in the morning, so ill try it tomorrow morning. Give it a ago, its free and easy. Symptons listed are similar to ours, and hypoglycemia is linked to it some places, on this forum to if you search deep.
My treatment with Metformin isnt working, I feel no better but have an upset stomach to add to my symptons. After some 12 days on it, I dont think it is the answer.
Ive received the results from a Adrenal Stress Test today and my cortisol levels where mostly normal other than slightly low at midnight. However my DHEA levels where elevated greatly throughtout the day, averaging 4.30 nmol/L the reference range is 0.40-1.47.
Hi, Im a 23 yr old female in your same boat. I have been diagnosed with RH for a year now with no underlying conditions or reasons for it. I have been put on mediaction to try and aide some of the sympthoms and flair ups but its not enough.. friends and family dont understand it and i dont know anyone else with my condition.. id like to talk more with you since ur aroudn my age and can prob relate better to my social experiences as well.. send me a message to let me know if you are interested.
Hey Jessica, Yeah id love to share experiences. Im not sure how to private message you on here? Do you ? Or do we exchange email addresses? Guess we could just message on the thread here.
Ive only been diagnosed for a month, and desperately looking for a cause, ive been through great expense with private doctors in the last month and am last very frustrated and desperate. Guess I need to exhaust all possible avenues before I give up and just try and live with the symptons.
What medication do you take? Does it help? Did your RH show up on a GTT?
Hi! but for now...
it actually took me two years to get diagonsed they kept saying I just had "really fast metabolism" or possible anemia...it finally took me passing out to get looked into more by the doctors.. they did routine blood work first and everything was normal but my blood sugar was a little low.. they had me do a fast and do blood work and of course i showed low.. when i was in the ER i first popped positive on a test for thyroid which made no sense because i was quite opposite of all the sympthoms so they retested me at the clinc there and of course it didnt show up again... when they finally did the 5 hour glucose test they ended up having to stop it at the 4 hour mark because my blood sugar fell down to 53 which they concluded i had RH... they first just sent me to a nutrional class for a diet change.. well this really didnt work and i was more frequent and severe episodes... thats when they decided to give me a blood monitor and keep a journal of what i ate and where my blood was when i was feeling low.. they put me on a medicince called "precose" but i found the generic version "acarbose" worked better for me..(plus its SIGNIFACTLY cheaper) they started with the lowest dose 25 mg a day.. (this is an inhibitor that slows down how ur body breaks down carbohydrates) take it BEFORE u eat..this worked for a bit but after a month it was back to normal so they increased my dose to 25 mg 3 times a day.. once before each meal.. in the morning (this is when im most sensitive) i avoid fruits or fruit juices as these cause episodes and instead go for oatmeal or bagel with creamcheese.. or even a glucose shake.. then at night before bed usually have a peanut butter sandwhich or tuna to prevent episodes in the night.. i was told to actualy increase carb intake when working out hard but follow with a protein (so like pasta with chicken)... so far so good im coming up on my 4 month appt (no real bad episodes in that time).....
Can you update us on how the acarbose is working for you? I will be starting that next week and I'm a bit scared because I've read that only glucose tablets work to bring up the blood sugar fast when it begins to go down. how has acarbose worked for you?
Just to put in my two cents. I recently went on acarbose for "vague" fatigue/depression type symptoms, like Jake's, that have been with me for 20+ years (I'm 35). Things aren't perfect now, by any means, but I'm feeling better, more "solid" and alive than I have since childhood. I was wondering whether combining with metformin would be helpful and Jake's experience is not encouraging. I would urge Jake and anyone with these types of symptoms, for whom diet alone is not enough (I have completely avoided sugar, fruit, and sweets for almost 15 years) to try acarbose, which is a fairly benign substance, as medications go. I'm still waiting for an appointment with an endocrinologist to try to tease out what's going on, but not holding my breath. I'm just glad to be feeling better.
White flour, white rice, white pasta all trigger RH for me just like sugar, but whole grains are fine. I make sure to have protein and fiber at every meal, and it helps. It doesn't eliminate the problem, because some days, it's just like I wake up with low blood sugar, but at least I know how not to make it worse. Hope this helps...
I am 28, i have a thyroid problem for which i take Armour and i now feel much better, the problem is that i have a busy, stressful teaching job and i cannot do it without eating constantly. I try to be healthy, i eat fruit/wholegrain/protien whenever i can except sometimes i just have to go with high sugar foods because i feel so ill. I have been checking my blood glucose every day. It always starts off around 4.5 and i feel fine, but by the time it is 9am i am starving, if i dont eat, by 10am it will be around 3.7-4.2. If i leave it i get very ratty and confussed/dizzy etc but it does not tend to drop any further, instead i get the shakes and tired/feel sick. once i do eat i get tired and headaches. My endocrinologist wants to try and control it with diet which helps a little. Could this be reactive hypoglycemia or is this not low enough. I have passed out at work, but like i said my levels have never been lower than 3.5. any help would be much appretiated. cheers
It may or may not be low enough to be called RH (some consider anything sub 70mg/dl with symptoms to be indicative of HG) but it sounds like your problem could be blood sugar related regardless. When actual hypoglycemia does not occur this is called "posprandial idiopathic syndrome," (though in your case thyroid may be the cause) but the mechanism seems to be about the same (Google "postprandial hypoglycemia brun" for a very good review paper on the topic) The shakiness/dizzy/confused feeling you experience may be caused by adrenalin your body is pumping out to try to keep your BG up (which is why you never see it drop lower than 3.5). A high fiber, high protein/fat, relatively low carb diet with small frequent meals may help--and you really should try to get a good breakfast in the morning (a handful of almonds is better than nothing at all) In my case Acarbose (precose) seems to be helping where diet did not. This is a relatively benign medication, and worth a try if dietary measures are impractical or don't work for you, or work incompletely. If it does work, my experience is that you should notice the effect very quickly. Good luck...
I'm in the same boat. Sounds exactly like my symptoms. Gave up after years of trying to get somewhere with doctors who were keen to fob it off as being all in my head. I'm not sure if the NHS in england even acknowledges the condition.
I've noticed an improvement using Glucobay(acrabose), but still not quite ideal. Plus it gave me horrendous gas! I want to try Diazoxide, which is used in treating insulinoma, so it inhibits the release of insulin. It's got possible nasty side effects (probably kill you in high enough doses) but from my research appears the most effective in stopping insulin release. I've tried Nifedipine, which is a calcium channel blocker so has a similiar effect but not as strong, however I didn't notice a big improvement, I may give it another go though. It gave me light-headedness however, as it lowers blood pressure, so not the most pleasant side effects.
Do thorough research before you take either Nifedipine or Diazoxide as they are very powerful drugs, unlike Glucobay which is very safe (impossible to overdose, someone tried to commit suicide with 10x dose and failed).
Will let people know how I get on with Nifedipine (Adalat OROS, slow release). I can't find a source of Diazoxide so looks like that's out of reach for me.
I can believe Metformin may help as I noticed an improvement with intense exercise (decrease insulin resistance I assume), and I *think* I can tell an improvement with Alpha Lipoic Acid, which decreases insulin resistance also. I think next I'll try Glucobay + Metforming, before giving Nifedipine another go.