Insulinoma
Insulinoma is the most common functioning tumor of the pancreas, and affected patients present a tableau of symptoms referable to hypoglycemia (symptoms of catecholamine release), mental confusion and obtundation. Many patients have symptoms for years. Some have been greatly troubled by emotional instability and fits of rage, often followed by somnolence.
Incidence: This tumors are so rare. Probably the best series of insulinomas is from the Olmsted County (Mayo Clinic). This study (cohort) was seen over a sixth decade period (’27 to ’86). The incidence there was 0.4 per 100,000 person-years (or four cases per million per year).
The diagnostic hallmark of the syndrome is the so-called Whipple triad, wich consists in symptoms of hypoglycemia (catecholamine release), low blood glucose level (40 to 50 mg/dL), and relief of symptoms after intravenous administration of glucose. The triad is not entirely diagnostic, because it may be emulated by factitious administration of hypoglycemic agents, by rare soft tissue tumors, or occasionally by reactive hypoglycemia. The clinical syndrome of hyperinsulinism may follow one of two patterns or sometimes a combination of both.
The symptom complex may be due to autonomic nervous overactivity, expressed by fatigue, weakness, fearfulness, hunger, tremor, sweating, and tachycardia, or alternatively, a central nervous system disturbance with apathy (or irritability or anxiety), confusion, excitement, loss of orientation, blurring of vision, delirium, stupor, coma, or convulsions.
Because cerebral tissue metabolize only glucose, prolonged profound hypoglycemia may cause permanent brain damage. Clinicians need to be alert to this when attempting to induce hypoglycemia by fasting.
Preoperative NPO orders must be accompanied by intravenous administration of glucose.
The diagnosis: Is established by demonstrating inappropriately high serum insulin concentrations during a spontaneous or induced episode of hypoglycemia. Then imaging techniques are used to localize the tumor. The available procedures include spiral CT, arteriography, ultrasonography (transabdominal and endoscopic), and 111-In-pentetreotide imaging. Transabdominal ultrasonography is our preferred initial test.
Insulinomas are small (usually smaller than 1.5 cm), usually single (only 10% are multiple and those are usually associated with MEN 1 syndrome), usually benign (only 5% to 10% are malignant), and usually hard to find. Success in localization often parallels the degree of invasiveness of the study.
Its treatment:
Treatment for insulinoma is surgical. At operation, the incision is dictated by operator preference, either a midline incision from the xiphoid to below the umbilicus or a bilateral subcostal incision. Exposure should be generous, and mechanical ring retractors are an asset. The entire abdomen should be explored, with particular attention being paid to possible liver metastases.
The head of the pancreas should be palpated carefully and examined anteriorly and posteriorly; the body and tail of the pancreas should be palpated, dividing any ligamentous attachments to the spleen, delivering the spleen into the wound, and rotating the tail anteriorly to allow palpation and visualization.
Anyone operating patients with pancreatic islet adenomas should be familiar with techniques for, and limitations of, intraoperative ultrasonography. The higher-resolution (7.5-to 10-MHz) transducers are used in the pancreas; because of its greater depth of penetration. Islet tumors are detected as sonolucent masses, usually of uniform consistency. Several reports attest to the high degree of accuracy of intraoperative ultrasound.
Review of current literature leads to the almost startling conclusion that nearly all syndromes of hyperinsulinism are due to insulinomas and that nearly all insulinomas can now be detected before or during surgery. Having said this, there appears to be scant justification for an empirical (“blindâ€) partial pancreatectomy except in patients with insulinoma plus MEN 1.
Most insulinomas are benign and can be enucleated. Nutrient vessels in the bed of the adenoma should be cauterized.
The 10% of patients with hyperinsulinism who have MEN 1 syndrome have multiple islet tumors, one of which is usually dominant and responsible for the excessive insulin output.
Hazel,
Finally! I am really excited for you. To think that a tumor was there all along, just waiting for the right doctor to discover it. You can start looking forward to a whole new life…I know that having lived with the disease for so long you begin to think that this is the way life is, but it’s not! You almost have to learn how to live all over again. But it is very exciting, as you will soon see. August 7th is so close! I have it on my calendar so I will be looking forward to it for you as well.
I hope that they give you a huge discount since you do not have insurance. My hospital bill was 73,000! But so worth it. Stange that you never had a 72 hour test, but I’m sure you must have had your sugar levels checked with a monitor. How low were your levels?
Well, I will keep you in prayer. Maybe if your recovery goes well we can meet in August when Pamela comes!
Soo happy for you,
Peggy
Hazel just so pleased for you. I know so much how it is to have this illness long term. I have had it twice over since I was 17 and now at 52 it sure is a long slog. I hope all goes well for you with your surgery.If Pamela is anything to go by it looks like you are in good hands. Will be saying prayers for you.
I have a son who is getting married on August 2nd, so even with this horrid illness I have managed to raise a lovely boy, so August is going to be a great month for some of us insulinoma people!! Take care and just keep focused on getting well. Keep right on!
Love Janet x
Kim,
Thank you, I can’t wait! I was 13 when I got ill so I can’t imagine what life will be like for me… how exciting! You know I’ve never had a low blood sugar or high insulin reading (they don’t do 72 hour fasting tests here) so I still have that nagging doubt that it is an insulinoma, but I have all the symptoms and now I have a tumour so it’s looking pretty good. I’m so encouraged by the success stories I’ve read here and have learnt so much from reading the posts. I can honestly say that without this site I would never have found out what was wrong with me and will be eternally grateful to everyone who has shared their stories.
Hazel.
Hazel,
That is such GREAT news! I don’t know how you’ve survived for 23 years. 2 years was plenty long for me! Sounds like you’re in expert hands at USC. August 8th will be here before you know it.
Congrats to you!
Kim
Hi all,
I’ve had great news….they found my tumour! USC called to say they could clearly see a tumour on the CT I sent them. I can’t believe that after 23 years of having symptoms I could finally have found what is wrong with me! It’s so hard to believe that I keep thinking that perhaps it’s another sort of pancreatic tumour etc etc…. I’m booked to have surgery at USC on August 8th with Peggy’s surgeon Dr Dilip Parekh. He said my tumour was on the head/neck area of my pancreas but said they felt they could do the surgery laparoscopically. It will be very expensive as I don’t have insurance and I’ll need to be in the States for 3 weeks but it will be so very worth it. Thanks to what Peggy has told me I’ve got confidence that I’m going to the experts which is something I would not have in New Zealand with our small population.
Hazel
sorry I made a mistake,I was having a moment,I meant to say hi to Kylie not Angie in Australia.Hi to everyone else too!
Nicky
Hi everyone,
It’s interesting to hear people commenting on the effects of alchohol on our symptoms.For the last 15 or so years,and quite out of the blue,I suddenly became almost allergic to having a drink.I never drank that often but when I did I would be violently ill all night after just one glass.I used to put it down to tummy bugs but I soon decided not to drink again.However when we recently made a move across country a friend offered a goodbye toast to which I reluctantly accepted and shock horror, no vomiting! All of a sudden I can drink again,don’t know why?
Hi to Angie on the other side of the country,hope your well.
Has anyone else had or going to have a whipple done? I only have 5 weeks to go and would love some info.
Take care Nicky:)
Hi Pamela,
We live in South Orange County, probably an hour south down the coast from Santa Monica. San Diego is another hour south. Cool place to vacation! 🙂
Hello again!
Raelene, I just saw your blog…….. i missed it….. i guess i was in he hospital! Im curious to hear how your brother is. Let us know what they have found. I have to agree with Peggy, Alchohol is like poison if you have an insulinoma! Nothing made me sicker. Peggy i think I asked you and Susie before how far you all are from Santa Monica. I know Susie is in San Diego, But i cannot remember where you are. I am sure a trip to California will be happening this summer some-time! Have a good day everyone.
Pamela
Pamela,
I would LOVE to see you, yay!! I hope your vacation plans work out. You should be feeling pretty great by August.
Raelene,
I hope your brother is doing ok. Alchohol is the one thing I couldn’t touch. Every time I did I ended up in emegency. Nothing dropped my sugar as low and as quickly as a drink.
Let us know how the diagnosis goes.
Peggy
Hi Pamela,
So glad to hear that you are getting better so quickly! Keep it up but do take it slow. You’ve had major surgery and your body needs time to heal fully. I’m sure your family is thrilled as well.
Best to you,
Kim
Great to hear from you pamela and that you are doing so well. It should be a clear road all the way now , glad you are back online. Now don’t get carried away and do too much too soon. So glad you got your life back
Love and prayers, Janet xx
H everyone!
Im sorry my phone lines and computer were down for a few days! Im so glad to hear fro you all!! The last two days i have really been feeling better! My back has a little pressure and pain…my swollen belly is going down! Peggy you really said it! I just cant stop thinking how i can work out, travel, even watch my girls worry free! I think my husband and nanny are having a hard time believing i am okay after only having ice tea and a bannana…. i can see them watching me to see if i am acting normal! Food never used to taste good …… but now i am enjoying it! I still think of us all getting together! I think in august we might be going to california to visit family and a small vacation…maybe i can see you peggy and suzie! Anytime anyone wants to come to dallas and has the time….tell me!! we will get it all plannedLove and my prayers to all!
Pamela
Hi Pamela, Peggy and everyone. So nice of Peggy to be enquiring about Pamela, I also endorse that enquiry.
So hope Pamela that you are a feeling little stronger each day. Everyday gets a little bit better. Love and prayers,
Janet x
Hi Pamela
How are you feeling this week? I know every week gets better and better. Hopefully the pain in your back has improved and your tummy is not as swollen. It is all so worth it isn’t it. Continue to take it slow. I know it is hard because, if your like me, my brain wants to do sooo much, all the things you haven’t been able to for so long. I’m so happy for you.
Peggy 🙂
Hi everyone! I’ve recently come upon your lovely family and would love to join in.
I was diagnosed with an insulinoma coming up 3 year ago now and had no idea what it was let alone what I was in for.I’m a 35 year old mother of two girls living in Wagga Wagga Australia. About a month after my second daughter was born I starting getting symptoms like shaking, sweating,numbness in my throat and face.My GP thought it might just be a result of the pregnancy (which I had no problems in) or breastfeeding.After telling me to “eat more” I continued like this for about 5 months wiht the symptoms going from an episode a month to once a week to everyday. Finally I was given a 5 hour fasting test (breastfeeding through it),my sugar levels were 5.3,4.5,4.5,1.7,2.5. Let me tell you the following headache was just wonderful.
Iwas referred to an Endocronologist in Brisbane (I was living there at the time) who told me what was wrong within a half hour of being there.Iwas sent to hospital for a 72 hour fast which only lasted 4hours beforea brought back a 1.7 reading and an hour later a 1.3.
I had an endo ultrasound which showed what they thought was the tumour on the tail of my pancreas.I was booked in for surgery,by this time almost another year had passed.I had the tail removed by laparoscopy in March 2007,they scanned around at the time and couldn’t find anything else so they closed me up and hoped for the best.I was uncomfortable for a couple of days but recovered quickly.All the while my glucose levels were in the 9’s and 10’s so they thought all was well.Then I got the pathology back,not only was the growth not the tumour but the rest of tail was fine too.I had a few complications with fluid leakage and was in and out of hospital over 3 weeks and by the end of it my glucose was low again.
We moved to New South Wales last christmas and I recently got the ball rolling again since I seem to be a walking hypo these days (even as we speak,sorry about the spelling).
I was booked in at St Vincent’s in Sydney and repeated the scanning.This time a CT and EUS both showed up the tumour on the back of the head of my pancreas,it’s 1.2cm.I’m booked in again for surgery on the 5th August.This time it doesn’t look as though I’ll be so lucky,I’ve been told to expect a whipple.Susie am I right when I say that you’ve been through this proceedure,Could you give me a heads up on what to expect out of it? I’m worried that because I’ll only have one third of my pancreas left that I will be diabetic at the other end, not to mention the lack of a good part of my inards.
I’m sorry this has been a long one but I thought I’d give you the whole picture.Good luck to eveyone recovering and about to have proceedures.I’m over the moon that I’ve found you all,it’s great not to be alone.:)
Nicky
Hi All and especially Pamela
So glad to see you home are doing well. I know exactly the pain you have been in, but every day from now on will get better. Well done!! Take it steady and don’t try to rush stuff, remember you hrlife have the rest of your life to catch up with everything; the work is always there.
God bless.
Love Janet xx
Hi All and especially Pamela
So glad to see you home are doing well. I know exactly the pain you have been in, but every day from now on will get better. Well done!! Take it steady and don’t try to rush stuff, remember you hrlife have the rest of your life to catch up with everything; the work is always there.
God bless.
Love Janet xx
Pamela,
Hooray. I have been thinking about you too and am so happy that all went well. You’re through the hard part and it will only be downhill from here! I remember thinking that my stomach would never be the same but while it isn’t exactly the same (my belly button is crooked!), it is pretty darn close. I also remember that “beached whale” feeliing when it was so hard to turn over, get up etc. I thought, if they have an emergency in the hospital I will be stuck here on my back! But it gets better and better before you know it. I think the more you use your stomach muscles, the more quickly you heal, just don’t overdo it either. So happy to hear from you!
To Pamela,
I was thinking about you and wondering how you have been doing.
I must say the worst part is sleeping on your back. I have been doing it for 3 months on this last surgery, I’m finally sleeping on my sides. I used many pillows to prop me up.
Isn’t it great not to have to eat a lot of sugar or drink sugary drinks. I haven’t touched a glass of orange juice in months and probably never will.
I’m glad you are doing well and I hope you have a speedy recovery. Take care.
Susie
pamela,
congratulations! 🙂 🙂 🙂 what a liberating feeling, eh? i’d say i had a bit of a swollen belly for a while too. (and i didn’t enjoy sleeping on my back either!)…but in a few months you’ll be healed up, so hang in there! I’m very excited for you.
penny
Hello everyone!
I am home now! I spent seven days in the hospital. I have about (i think) a six or seven inch incision. I am happy to say my sugars are doing wonderful! During those seven days i wasnt able to eat for at least 4 of them….and my sugar was a little high and then stabilized! Nothing was short of any of you saying that the pain is excruciating! Holy cow! I am taking pain medicine hear at home… i have a-lot of back pain and feels a little like pressure too! Sleeping at night is the hardest! I hate to sleep on my back! I am assuming it is common and normal to have a full tight belly? Protruded i mean. I guess i am just still so swollen. I think i have drank gallons and gallons of water and unsweetened tea! No juices or dr peppers! I feel i have a long recovery still ahead ….but i am so excited to begin my new life. Love to hear from you all!! I hope everyone is doing well!
Love pamela
Hi,
What a great website. I have got more information from here than any doctor.
I have just left visiting my brother in hospital. He flew in from Bali to Melbourne 2 days ago and was rushed to hospital within a couple of hours, after he passed out at the pathology lab. He has many of the symptoms of insulinoma. They have ruled out malaria. Although his diagnosis has not been confirmed, they think its insulinoma. The doctor thinks he may have had his drink spiked and this is the result. Sounds strange to me… Has anyone ever heard of this happening before?
I wish all of you the best of luck in your recovery.
Thank you.
Oh my! You should be out of surgery by now! I’ve prayed for a successful operation with no complications. I hope you woke up o.k. Yes their will be pain, as I’m sure you have discovered already. Fortunately the pain meds work well. I only needed them the first day. But do be patient and know that time will pass much quicker after tomorrow. consentrate on how great life will feel in just a few short weeks! Today I’ve only eaten yogurt an apple and a vegetable juice, and I feel great!
I can’t wait to hear about your results and the whole experience, which should be hopefully 75% behind you.
I’ll continue to pray for your recovery.
🙂
Peggy
Hello! Well i spent the night here at the hospital…and its now 7:30 a.m. I am patiently waiting for 12:00 noon for my surgery. I just have this huge knot in my belly from my nerves! I do have wireless on my computer… so my mom or i will write as soon as we can. we will let you all know! everyone take care!
Love pamela
To Pamela,
You will be fine. You sound like me. Since my surgery I have had a huge craving for iced tea. I have been drinking it everyday. I too have lost so much weight, I am the thinnest I have been in years. Those insulinoma’s sure put on the weight. Now I can go hours without eating and nothing happens to me. No more crazy behavior. If i can make it through 2 huge surgeries you can make it through a laproscopic surgery.
Good luck, you will do great.
Susie
Laura,
thank you for the info! i got a wireless hook-up for my lab-top….. so hopefully i can catch up with you all sometime after surgery! if it is laproscopic , i am hoping to be in for only a few days! we will see! i just want to eat fresh spring rolls… and iced tea and go walking in the evening! tell me its possible! pain medicine seems to always make me sick….. i guess they will give me anti-nausea meds. i would love to loose 35 pounds! your story gives me hope!
thank you
pamela
Pamela,
They know instantly if the procedure works. I went into surgery with a glucose drip, the minute they took out the tumor, they switched it to an insulin drip as my sugar instantly went way up. In fact, I had to stay in ICU the first 30 hours because my sugar was too high, crazy huh? As for the pain, I had an epidural that they put in before surgery before they put me out. The thought was that when I came out of surgery, I would be in a lot less pain. Great thought, but not truly successful. Because the incision goes so high up (to my bra line), the epidural is placed very high. What this means is you can’t be laying flat for it to work. When I came out of surgery, they had me almost all the way flat and I was in a lot of pain. They gave me drugs, but they were very puzzled as to why the epidural was not working. Once they figured out the epidural was “pooling” and sat me up, the pain almost went away. I definately recommend the epidural and the PCA when you are done with that. the PCA is the machine where you get a constant stream of drugs and when you need more you push a button. By the time I went home, I was on oral meds, but none were as good as the epidural or PCA.
Good luck! You will not believe how great it is not to eat all the time! I dropped a ton of weight and have never felt better!
Laura
Peggy
Hello! Im so glad to hear from you! Hope everyone is well too!!! For days i have been preparing like i am going to the hospital to have a babY! Packing…and all! Everyone is asking me if i am scared and i do not really think i am…… just anxious and excited. I am scared that i will wake up and it did not work. I just cant seem to come to terms with that i may actually be cured if successful! When you wake up is it painful if the operation was done lapriscopically? (cant spell!)
Does anyone know how long it takes to see if it might have worked? They will be admitting me into utsw med center about 4:00pm tuesday afternoon…and i am scheadualed for a 12:30 operation on wednesday. I am taking my computer to the hospital…. (If i get wireless by then..) so as soon as i can i will write! If not i will have my mom drop a note!
Thank you Janet for your prayers…my prayers are with you as well!!
Love pamela
Hello Peggy glad you are well. My prayers too are with Pam and everyone else with these horrible insulinoma thingies! I am ok at the moment, still taking the pills- 14 a day LOL! Hope everyone is ok.
Love Janet x
Pamela?
I think your surgery should be coming up…let us know the date so we can kep you in prayer.
How is everyone doing?
I forgot how full a normal life is! 🙂
I am the mother of a 30 year old male, he was born (8/12/1977) with nesidioblastosis, when the umbilical cord was cut, he went into seizure, he weighed 9 lbs and 13 1/2 oz, I found out one month prior to his birth I had gestational diabeties. Twelve hours after birth, the pediatrician came in and told me my son was bleeding on the brain and the best thing to do was to let him pass. I demanded they contact Shands Teaching Hospital in Gainesville, Florida, which they did, and 3 hours later they came to Munroe Regional Medial Center in Ocala, FL, to pick him up and saw he was hypoglycemic, gave him an IV of glucose and he finally started reacting normal. For two weeks they ran tests, but they could not find out why he could not keep his blood sugars up, he continued to decline in health, so they went in to see if there was a tumor on his pancreas, there wasn’t, but he was producing an abnormal amount of insulin, so they removed his pancreas at 3 weeks old, they left about 1% to 3%, and told me he would be diabetic. He continued to have seizures and blood sugars as low as 0 to 60 or 70 at best. They put him on diazoxide and that helped some, he continued for 12 years to have seizures and hypoglycemic attacks. He was very overweight, he also took depakote for seizures, which because they were brought on by low blood sugars, really did not do anything for him, all his EEG’s came back normal. He went 2 years without seizures or any medications, then at 14 had a massive seizure went into a coma and as a result had become insulin dependant. He takes insulin as needed, but still has low blood sugars and as a result has seizures. He is now 31 years old, has been unable to work for the last 3 years, has terrible bowel problems, he also has low blood pressure, 70 over 48, was the last one that we took, he is depressed and I don’t know where to turn, he has no insurance so cannot get the Doctors up at Shands to see him, and I don’t know what to do for him. He weighs 175 lbs now but was down to 128 lbs, when this all started again he was 276 lbs, I am looking for anyone to help me, help my son deal with these medical problems and try to find some answers so he can live a normal life. I would appreciate any suggestions. Thank you.
Hello again friends,
It’s Angelique from Gibraltar. I have been reading all your mail but been too busy to write back. I had my insulinoma removed 4 years ago. It was quite a big operation as it was located between the head and the neck of the pancreas. I had been going to the UK since the year 2000 – first to St Mary’s in Paddington and from there was transfered to Hammersmith Hospital. For three years I underwent numerous 3 day fasts, arteriograms, countless scans… but my consultant was unsure whether or not it WAS an insulinoma. I decided to continue my care in Cordoba – Spain where they are specialised and people come from all over Europe.
Wendy,
Who is your consultant? Mine was Dr Todd – she first said I had an insulinoma without a doubt, and after a second 3 day fast, she decided my insulin levels had shot up so much, so she suspected I could have injected myself with insulin. Enraged – I never went there again and suffered endless hypos until they discovered and removed the 1.5cm tumour in Spain.
Hello Elizabeth,
after such a long wait for the proper diagnosis i am sure you are so relieved to have one! i will pray for the best doctors and a quick recovery and healing for you! From what i have read and heard you will be in great hands at UCLA! My prayers are with you!!!!
Wendy
It was great to hear how you feel now after living with an insulinoma! how long do you think you had one? How long did it take you to get out of the hospital….. heal and get to normal things? My first endocrinologist took it upon herself to diagnose me with bulimia and wouldnt even give me a referal to mayo clinic… because she said “i am not going to do that because we can solve this with your diet.” Which by the way……i have never in my life had a eating disorder! As a matter of fact i used to love food! Now i am just tired of it!!! So all these years every time i had a bad low episode i would just cry for hours thinking “what did i eat wrong…What did i not eat!!!” I could not agree more that awareness is important!!
I have just about 3 and a half weeks before surgery…. But it seems like time is now going even slower because i cant stop counting the hours until then!!
Prayers with everyone!!
Pamela
Hi All,
Long time no blog. I underwent surgery in Dec last year for removal of insulinoma on tail of pancreas at Hammersmith Hospital UK and have been getting back to normal ever since. It is only now that I look back and realise how ill I was before this op and cant believe how different I feel now I feel 10 years younger. I feel part of my memory has been wiped for good and sometimes have difficulty recalling things from childhood etc.. which makes me think the slow growth of this tumour must have been with me for years. It is frightening to think that something so small can cause so much disruption and its removal can be life changing.
I went back for my check up last month and my consultant who is a specialist in this field informed me that she had done a talk to the British Medical Council to help GP’s in the UK become better informed about this illness and that it is actually more prevalent than we are led to believe. The average diagnosis time here in the UK at the moment currently stands at 10yrs as so many general practioners have never heard of it or assume it is too rare to be the diagnosis and therefore many patients are misdiagnosed with stress or epilepsy etc… for many years. The biochemical diagnosis of insulinoma is easy and it can be clinically diagnosed by one simple blood test so raising awareness regarding this illness is crucial and this website seems to be gathering pace in this respect and more doctors should be aware of it.
I hope all of you about to undergo surgery or are in the throes of diagnosis and localization can get support from this website as it helped me through many dark days in trying to understand my illness and gain positive support and feedback from those who had undergone surgery whilst I was awaiting mine. I too would love to meet all you fellow insulinomites!
Take Care all of you.
Hi All!
I just wanted to let everyone know that I have finally gotten an official diagnosis; but it’s not and Insulinoma, despite my Insulin levels clocking in at 236.
I have Cushing’s Syndrome, what I have known for 8 years. (I diagnosed myself with it back in 2000). As a result, I am being sent to UCLA. If I need surgery (which I most likely will) for a pituitary tumor, it would have to be done there. There are no qualifying Neurosurgeons here in the San Fernando Valley.
I just wanted to say thank you for all the feedback you have given me.
God Bless,
Elizabeth
Okay everyone. I am so embarrassed to say this but the medication i was on was called octreotide. I thought it was just another name for diazoxide….. apparently after being admitted in the hospital saturday night i learned differently! I had to stay in the hospital till monday night…the medicine affected me wrong and not only stopped the tumor from producing insulin…but somehow stopped my sugar production…then the insulin a few hours later kicked in and produced but the sugar did not. Thats the best way i know how to describe it. I am not good with medical talk! It was awful…i was eating cookies, pasta, dr pepper…trying to get my sugar up and i was just sweating and my heart was beating out of my chest…and then i would check my sugar and it would be 29. my husband rushed me to emergency. They admitted me and kept me on a dextrose i.v. for 2 days until the medicine was out of my system! So i have never appreciated the way i was …. until all that! Although its a little late, i agree with all of you… i need to just go the next few weeks managing this with my diet! I do have a blood glucose monitor, if i had not i do not think i could have made it this long! I hope you all are feeling well…..despite all of that, today i felt like my old regular insulinoma self. I did good today. Take care all. love pamela
Me too! had to set my alarm for 4 hours after i went to bed to eat my snack…otherwise i’d wake up soaked in sweat, feeling awful in the middle of the night. A few stories here also~ 🙂
Pam
I had to get up in the middle of the night every night to eat something – usually juice or chocolate milk. otherwise I would get up in the morning and do things without knowing it! Or I would be aware but pretty out of it (still doing and thinking strange things!). Lots of stories!
Pam,
I’m sure you’ve seen your doctor by now regarding the diazoxide (hopefully). I am curious to know what dosage you’ve been taking. I started taking it years ago, but I went from 25mg to 200mg 3 times a day. I would take it right before I went to bed, with a snack of course. I never changed my diet though, I still had to eat a ton of carbs.
I’d be glad to send you the unopened bottles if your taking the liquid. (If that’s legal?)
Janets right, these insulinomas are unpredictable!
Meant also to say, the diazoxide is a life line for me, and without it I am conking out all the time, early mornings, afternoons the lot. I find it so hard because whatever I eat to help a very low blood sugar in the morning, even slow carbs, I just produce more and more insulin, producing even more lows, with the help of the pills I can get through. However, all these inslinomas seem different and unpredictable, I would think you were better off without the diazoxide. Best of luck anyway whatever you do!
Janet
Pamela
Sorry to hear about your problem with the diazoxide, you must do what suits you best and it doesn’t sound like take it is doing you any good at all. Susie is quite right about a blood monitor, they are an essential with this condition! What dose of diazoxide did your doctor prescribe? At least its only a month to your surgery, but sounds like its going to be long one! Take care,thoughts and prayers are with you.
Janet
To Pamela,
Do you have a blood sugar monitor? If not have your docotr prescribe you one. I had one and it really helps. You only have a month left i wouldn’t fool around with that diazoxide. I never took it. At least you can take your blood sugar whenever you want and you’ll know what your blood sugar is at all times.
Good Luck!
Susie
Hello all!
I think i am going to stop the diazoxide. I took the dose i was supposed to last night and woke at 6:00 a.m in a cold sweat…i am sure if i would have slept any longer the paramedics would have had to come again! I never had these lows overnight…and i think i had my sugar under control better with my diet. I think i will just have to stick it out with my diet for another month! Of course its the weekend…do you all think its okay to quit the diazoxide as long as i keep my sugar up with food? I know thats a question i should wait for the doctor to answer…but i would love to hear any opinions! Hope everyone is feeling well!
pam
Pamela,
Isn’t it the worst feeling! In two months time I had the paramedics wake me up 6 times. It’s hard to believe that is all behind me now. It will be for you as well before you know it.
I know when I first took diazoxide, if I skipped a dose I would fall lower than ever. It takes a while to get use to. Also, I went for years without a problem at night, and then all of a sudden I couldn’t wake up. I guess these tumors put out insulin randomly, which makes it very unpredictable.
I’m glad your o.k., I’m sure you will eat a large snack before bed tonight!
(I live only an hour south of San Diego)
Love to see you AND Suzie sometime.
Pamela
Glad to have you back had been thinking about you! Really sorry to hear about your problem this morning; how very strange. The diazoxide should help not make you
worse, hope you hear from the doctors soon- you poor thing, I know exactly how it feels to wake up with the paramedics!!
Good news about your surgery, so hopefully you will be getting your life back soon! It is reassuring for you that you have confidence in your surgeon, he sounds very able.
Take care now, and everyone else too.
Love Janet x
Hello everyone.
Boy am i Exhausted! I started that diazoxide Tues. afternoon….and i have never really had problems with low-sugars in the night while i sleep…..and this morning about 7:00 a.m. my husband could not wake me..and i was drenched in sweat. He called the paramedics….and thats what i woke to this morning. Like many of us….paramedics standing over me…pumping sugar in my veins! They said my blood-sugar was 23. Im not sure what i did wrong , it had to be with the medicine. I have called the doctors…so i am waiting for a call back!
I like the surgeon i met with on tuesday. He is very experienced and seems really smart and to the point! He is from nigeria and his name is Fiemu Nwariaku..Endoctrine surgeon. I guess i will be doing it sometime in june…im waiting for them to call and give me specifics of date!
He is giong to plan a laprascopic surgery..but if he runs into any problems along the we will have to open me up! Well i just want to be done with this. I hope you all are feeling well!I am always wanting and still dreaming of a fun gathering to meet you all! Hopefully by the end of summer!
pamela
Ps i spell really bad sorry!
To Hazel,
My doctor is A.R. Moossa. He is the Professor of Surgery and Emeritus Chairman, Associate Dean and Special Counsel to the Vice Chancellor for Health Sciences and Director of Tertiary and Quarternary Referral Services. He operates out of the University of Califormia San Diego Medical Center. UCSD Thornton Hospital is where I had my surgeries, it is located in La Jolla, CA.
Susie
I would love to meet all of the bloggers USA or UK, but understand the practicalities of such a trip. Whatever, the forum is bringing me close to others who have the same problems in their life that I have and that in itself is wonderful, even if I never get to meet anyone face to face I feel like I know you all. I didn’t think I would ever get the chance to talk to others.
Susie
What a lot you have been through, I know exactly how horrible it feels. So glad that things are coming together for you now
Janet
Hi there,
Pamela,
What a wonderful idea to have a get-together and meet, and to share information about this difficult and little known disease. It’s too far for me to travel from New Zealand but my heart will be there, with all of you who have been through this.
Susie,
I am very glad you are recovering and are getting your life back. What a joy after all you’ve been through.
Do you mind if I ask who your surgeon was and where he was based? It’s always good to know who the experts are!
Best of health to everyone, Hazel.
I still keep reading all the posts even though I’m not the one who had insulinoma. I got into the habit of it when I was looking for advice for my mother, and now I still like to see what’s happening. The idea of a meeting of the bloggers has come to me as well. I would love to meet all the people I have grown to care about and who have offered invaluable help over the many months. The U.K. bloggers should keep in mind that the U.S. is a big bargain for you these days. It could prove to be a great adventure!
Hi again
Jane.
I had my first op done at Dudley Road Hospital in Birmingham which is now called City Hospital. I now have to attend Selly oak hospital to regulary see the endrocrinologist. I was put forward for surgery at the QE , but declined becuase of the problems which were raised if I had a second op. Have had really great treatment, although initiallty the first insulinoma took ages to diagnose as I presented with convulsions and dizzy spells, headaches and odd behaviour. I thought I was going mad. Where do you live?
UK branch sounds great. The whole forum is wonderful.
Hope everyone is ok and Pamela will be thinking of you tommorrow when you see your surgeon. God bless.
Janet x
Janet
Hi Janet,
Where did you have your op done because I don’t think I live too far from you? There are not many of us on this site fom the UK. We could have a UK branch and meet up here! It would be cheaper. Jane
Pamela
Ive just found I can fly from Stansted but its two flights to get to Texas.
It does depend when, but although my husband thinks Im nuts I would be serious in trying to come out. Ill look into it a bit more!
Just one thing – they dont seem to go for biopsy here! Well there was no question of doing it. I dont think my surgeon wanted to do anything he considered unnecessary. It may be that he had thought Id have to have a whipple so it was coming out no matter, it just depended on how much pancreas he would have to take! Luckily the answer was none!
Susie’s situation doesnt surprise me , they say the pancreas is very very sensitive – any mucking about could make it difficult for the surgeon! As Susie says they can find out roughly how big and position from the scans and endoscopy and they biopsy when operating. I suppose some surgeons like to know in advance what they are dealing with.
It did surprise me that it wasnt until my out-patients appointment – 6 weeks later I was told it was ok and not malignant!
The important thing above all is to make sure the surgeon has a lot of experience with insulinoma. Make sure you ask all the questions you can think of, even stupid things. Ask what kind of pain relief they are going to give you and what they have as back up. My epidural failed after 12 hours and I was left with no pain relief for hours! They should have sorted it and got me on a morphine pump – I cant remember the technical term but you control it! If I think of anything else Ill let you know.
If you can be bothered my previous posts – a long way back – detail a lot about my op. It is different here than in the US – I was in for two weeks where as many others were home much quicker. If they can do laparoscopy (keyhole) youll be out even quicker! One guy on here was in the pub with in days!!!
Susie
Glad to hear you are mending at last and hopefully all will be well this time, i have been thinking about you and how things were going!
Well Im off to look up flights!!!
All the best!
Angie
Thank you Susie, i will keep you all posted after my appointment on tuesday!
Pamela
I’m not sure who it’s up to for the biopsy. I think it usually is standard procedure. But my surgeon never wants the insulinoma to be biospyed. The endoscope is used to locate the insulinoma and to determine the size of it. Just make sure your surgeon has had lots of experience operating on the pancreas and removing tumors from there.
susie
Susie,
Is it usually solely up to the surgeon for a biopsy? My doctor has not said anything about one. From what i understand Tuesday is to discuss what type of surgery they can perform on me , when the surgery is….and so forth. Do they usually want biopsys? I definitly do not want one! Is the endoscope the next step usually for the surgeon? Pam
To Pamela,
When I had my first endoscope last year they did a biospy on the insulinoma. What this did was they pulvarized the insulinoma so that they couldn’t find it when they opened me up.He made a calculated guess and took a little piece of my pancreas out where he thought the insulinoma was. If you get a endoscope make sure they do not biospy the insulinoma, this is very important. My surgeon wasn’t on my case at the time I had the biospy. My surgeon is a world renowned who specializes in the pancreas.
Good luck with everything.
Kim
so no-one has heard from Homa since her surgery? i will keep her in my thoughts and prayers….she is probably recovering.
Susie,
I do believe my body has gotten used to low-blood sugars, because i am constantly tired. I know that your insulinoma was in the head of your pancreas…so is mine…are the odds pretty low that they dont get it all out? I meet with southwestern medical surgeons on tuesday. i hear they are very experienced and smart! How long after your first surgery did it take to figure out they did not get the whole tumor out? I am so happy for you now that you are getting back your life! I used to love to walk my dogs and do some sort of outdoor activities…its to scary now…all i do is worry about my sugar dropping! I look forward to salads and walks!!!
Angie,
thank you for the conversion of blood sugar levels! That helps! What would your plane rout be from the UK? Have you been to the US?
You know what really impresses me about you and everyone else that writes and keeps up with all of us, it is the dedication, commitment, and thoughtfulness and caring even if they are healed or not! I have only been writing a short time..but it has sure helped me mentally and informatively!
Peggy
Where are you in California? My husband has family in Santa Monica. I saw Susie is from San diego! Next stop there ill look you two up!
Having a party and benefit would not only raise awareness but give many of the doctors, (endocrinologists) the knowledge they do not seem to have! Your daughter being a reporter sounds like a great plan to get a good start! My dad is retired from the Albuquerque Journal after writing there for 30 years! (Unfortunately his writing skills did not rub off on me!) and he gave me some good tips on contacting the health reporters from Dallas Morning news. I am not sure how or what i should do, but i feel like we all shouldnt have had to wait years and years for the help and treatment we needed!
Janet
Your the BRAVEST of the BRAVE! I admire your courage and strength although everyday has been a struggle. You give hope and support to all of us! I hear you about feeling isolated. No matter how close someone is to you im not sure anyone really understands how this disease affects us everyday! Thank you for your support!!!!!
Pamela
Hi Everyone,
Re: Conversion of mmol/L to mg/dL.
Found a website the other day that stated 1mmol/L (UK) = 18mg/dL (US).
Angie, your workings are very close.
0.4mmol/L = 7.2mg/dL (Yucko, poor Janet)
0.9mmol/L = 16.2g/dL
1.6mmol/L = 28.8g/dL
2.2mmol/L = 39.6g/dL
2.5mmol/L = 45g/dL
Ect, ect.
Keep up the good work folks & I can’t think of a better reason for you all to get together for a party.
Pamela
Forfgot to say, no I didn’t gain weight from medication, but do need medication for water pills to couteract water retention. All the best with the meeting with your doctors. I really hope ti helps you too.
Love Janet
Don’t know whether my message got posted so will repeat, sorry if already said.
Angie
I am impressed with your knowledge, that sounds about right. At .9 I am just on automatic, conscoius but confused, below that I black out. My body has spent a large part of its life with low readings, so go lower than most before becoming uncouncious.
Thanks all for not thinking I am a coward , but really I am. I had one really horrendous experience with surgery and I am so frightend I just stick with the diazoxide
Pamela
Thanks for your vote of confidence too! No I am not thinking transplant, if I had my pancreas removed I would live without one, but as you know thats really difficult and complicated, so that why I am staying as I am, even though its not always very easy.
Fortuntely in the UK we don’t have to pay for medication with certain conditions and my diazoxide is paid for on the NHS for named patient only. I realise how lucky I am and feel really sorry for you guys having to pay so much for this medication, I must owe my life to the National Health Service, and for this I am so grateful. The party sounds wonderful for you all on the other side of the pond. I so hope you manage to organise that, I will wanrt you all to tell me how it goes.
It is so great to find this site to talk to you all. For many years I have lived without knowing any one else with same problems and condition. It gives me comfort as well as feeling like I am sharing with others. Big group hug to you all from the UK, and wishing you the love to get better and help each other. Thanks
Love Janet x
Hi again.
Pamela thanks for the vote of support but I am a coward, after one horrendous op just don’t want to take the chance, Don’t think I would have a transplant, would just have to manage without a pancreas and as that would be extremeley difficult I am sticking with the diazoxide. Fotunately here in the UK the diazoxide is provided free on the national health, for named patient only so I do consider myself extremely lucky, and really feel for you guys having to pay. for this expensive medication, I guess I owe my life to the NHS.
My first insuinoma was at aged 17, having convulsions and other losses of consciousness. It took one year to be diagnosed after eventually fallng into coma on a bus.
Angie, I am extremeley impressed with your conversions; that sound about right. My body has had to live with such low blood sugars since 17, so I can get to 0.9 conscious, but confused and on automatic pilot. After that I black out.
A party is a loveley idea for you who live on the other side of the pond. Really really hope you can all get it together, will wait to hear how you all get on. Its great for me to after all these years to talk with others with similar problems. It has been so isolating, I am so glad I found this site and read your experiences, which have made me feel both comforted, saddned that others also suffer with such a horrid condition, but also thankful for life.
Wishing everyone on here recoveries and comforts. Group hug from me here in Tamworth, Engand to you all.
Janet x
Hi again.
Pamela thanks for the vote of support but I am a coward, after one horrendous op just don’t want to take the chance, Don’t think I would have a transplant, would just have to manage without a pancreas and as that would be extremeley difficult I am sticking with the diazoxide. Fotunately here in the UK the diazoxide is provided free on the national health, for named patient only so I do consider myself extremely lucky, and really feel for you guys having to pay. for this expensive medication, I guess I owe my life to the NHS.
My first insuinoma was at aged 17, having convulsions and other losses of consciousness. It took one year to be diagnosed after eventually fallng into coma on a bus.
Angie, I am extremeley impressed with your conversions; that sound about right. My body has had to live with such low blood sugars since 17, so I can get to 0.9 conscious, but confused and on automatic pilot. After that I black out.
A party is a loveley idea for you who live on the other side of the pond. Really really hope you can all get it together, will wait to hear how you all get on. Its great for me to after all these years to talk with others with similar problems. It has been so isolating, I am so glad I found this site and read your experiences, which have made me feel both comforted, saddned that others also suffer with such a horrid condition, but also thankful for life.
Wishing everyone on here recoveries and comforts. Group hug from me here in Tamworth, Engand to you all.
Janet x
Pamela,
Just a quick note to tell you I am definitely interested in getting together and meeting all you guys! That would be neat 🙂
Penny
Hey Pam,
Go for it!
I’ve always wanted to get us insulinomies together. I still wish I could throw a party, especially now that I have more energy and mental clarity. (I live by the beach if anyone wants to come to California to vacation this summer!)
I can relate to everything you’ve said Pam. This disease is so life changing. I like the idea of raising awareness somehow.
My daughter just moved home and is a reporter for three local papers. She just said she would write a press release and send it to the major cities. Even meeting together as a result of the blogs from Jon’s article would probably be of interest. I don’t think I would’ve had the strength to continue the pursuit of treatment if I didn’t have the support from everyone here. Let’s talk!
Sorry I haven’t been on for a while. I’ve been a little overwhelmed with trying to get a life back. I’m doing well though and continue to hold everyone in prayer.
(Don’t worry about gaining weight from the diazoxide Pam. I was on it for years and only weighed 120- I have a lot left if anyone needs it)
Hi Pamela,
I would be very interested in attending a party for all of us insulinoma people. I live in San Diego. I ended up having two surgeries. The first one the surgeons thought they got it all out but they didn’t. So I had a whipple done this past February. It was a horrible recovery, and I’m still recovering, just walked 1 1/2 miles. I still can’t sleep on my side and I have lost 30 lbs. But at least I don’t have anymore blood sugar problems. My blood sugar would go down to 30 and I would only feel sleepy. My body got so used to having low blood sugar. My surgeon has done the most whipples in the entire country.
His specialty is repeat surgeries done on the pancreas.
Pam,
You may need to drink some juice but I LOVE the idea of a party … and a benefit of sorts – all the better! It would be so neat to meet everyone. I am worried about Homa because she hasn’t “appeared” since before her operation and she was engaged to be married etc. etc.
Janet,
Ditti that – You are no coward!!!!!!
Kim
Pamela
Ill come!!!
Ive been writing on here since the beginning and would love to meet all the people who have been on the site!! There arent many of us in the UK compared to the US!
We could invite our surgeons and doctors (make them pay for themselves tho!) Ha Ha!
I was on the diazoxide for 8 months altogether. Diazoxide shouldnt make you gain weight but I suffered from water retention so also had to be on diuretics! My legs were more uncomfortable being swollen and puffy than I really benefited from the drugs. It helped my blood sugar levels but not really that well. I also had increased hair growth all over my body – I had a real covering of “down” and hairy toes!! luckily Im fair. It all dropped off and Im back to normal after I had my op and came off of it! Even my toes are back to normal!
One of the reasons I went for surgery was because I had only been taking diazoxide for a short time and had such reactions so soon. They suggested that due to my age (a young 40!) it would only get worse as I got older! They also suggested the diazoxide could stop being effective at all! Whether thats the same for everyone I dont know.
Janet
I think Id stay with the medication rather than face the surgery for complete pancreas removal! You are no coward!!
Anyway, as I never turn down an invitation, bring on the PARTY!!!
Best wishes everyone!
AngieX
Janet
This is from one of my earlier posts which may be helpful to everyone to compare.
Ive been trying to work out all the levels everyone quotes.
I cant remember how I did it but its a guide!
(0.6 mmol/L = 10 mg/dL – ie 1.8 mmol/L = 30 mg/dL)
Are you impressed!!!!!
50 would be ‘3′ (UK)
2.5 which is roughly 40.
Anything lower than 50 is considered unusual and below 30 is serious.
In the Uk if you go below 1 you are probably in a coma! which would be less than 20.
When I had my 72 hr test they stopped it at 1.6 which would be 26 ish but I went in at 36 which was low anyway. (These figures are approximate!)
Angie
Janet hello again!
my goodness you have been through so much!!! we all have in one way or another! A coward is the last word i would have thought of you to have sounded like! So your talking a pancreatic transplant? I was reading a little on that.It seems they have come a long long way with all of that! do you think someday you might go through with it? Im glad to hear about the diazoxide! boy that stuff insnt cheap. what happens to those who carry bad or no insurance!! GEEZ! crazey! Tues. when i meet with the surgeons they will also show me how to administer it! Will i gain a-lot of weight?
I was reading on the comments from last year…(so much helpful info!!!) and i read a comment from Peggy..and then a reply from Susie about how if Peggy had money she would love to throw a party for all of us with insulinoma..so that we could all meet!! Susie said she thought that sounded pretty cool! Well i think it sounds really cool. Maybe make some good of it…draw awareness….raise money..have some sort of benefit or something! Being here in dallas i promise i could make it work…my husband is a developer and has lots of connections. How many of us are as of now on this web-site? If me and my husband were able to cover the expenses…even those of you who could not afford to travel…how many of you would be interested? I promise im not having low-blood sugar…just sounded fun and beneficial! All kind of other people come together..cancer…diabeties……why not our small group!!!?
It wont hurt my feelings if you want to write back and tell me im nuts…or that i need to go drink some juice but i would like to hear your thoughts!!
pam
Hi again.
Apparently as I have already major surgery on my pancreas it was felt by the surgeon that further surgery would be extremeley complicated and he told me the risks would be much greater, so the coward I am, after already going through so much, I opted to have the diazoxide until I am ready to take the risk, I probably will have to have all of my pancreas removed so I am very frightend and have stayed with the medication.
.9 and .4 are the british reading of the blood sugars, I will try and find out how that translates to your readings. I just know it is really dangerously low.
I just wanted to reassure you that diazoxide is really helpful medication.
Best of luck to you all anyway, I understand everything that you are all going through.
Janet
Brendan,
thanks for the info! I guess i should ask for some migraine medicine! sometimes i will get a headache, have it all day,….go to bed and wake up with it!! After a really bad low blood sugar i have gotten a horrible splitting headache..sometimes so bad ill throw up! I guess it is the hypo causing these headaches?`
Janet
is it not possible to remove the recurrent insulinoma? When you say your sugars were o.9 and .4 im not sure of those type of readings. However you read it…going into a coma shows everyone how scary it is to have this disease!
Megan,
when i breast fed my first daughter it would make me really sick with hypoglycemia…..by the time i had my second daughter..22 months later there was no possible way i could have breast fed her…for my hpoglycemia had gotten so bad!! your comment about “having a doctor with a clue”….made me laugh because it just seems like the regular endocrinologists have absolutely no knowledge or experience with hypoglycemia and insulinomas! For 3 years i had a endocrinologist blame my hypoglycemia on my diet and when i got my medical records from her office i read over them, and they pretty much were her making accusations that i was bulimic! She had me so brain washed! no matter what diet she gave me..no matter how hard i tried i always thought my low-blood sugars were my fault. because of what i did or did not eat!! If and when this is hopefully over…she will be getting the full report!!
pamela
Pamela,
Thanks for all the info. My blood sugars have normalized in the past month or so. I am averaging about 81. I can’t believe it! In february I was averaging 55-65. It just seems so weird. I do know in the past seven years I have had a few months where I felt almost normal. I was even able to drive. Unfortunately my lows always returned. I wonder if my blood sugar had also stabilized during those times but I wasn’t even checking then. That was before I had a doctor with a clue! I also have had elevated calcium levels once or twice in the past. I also have constantly elevated prolactin leves. I have been on a medication for this for about a year but I still have some breat milk. ( I breast fed my son almost 10 years ago). I started having fainting spells after I quit nursing and times where I would be disoriented, shaking, sweating(all classic hypo signs) but I didn’t get really sick til about a year later. I spent four months not being able to pick up my child, in bed all day. Every time I stould up it seemed like I would pass out. I’ve learned a lot over the years. I’m just glad to have a group to share my experiences wioth that understands how serious hyopo episodes can be.
Megan
Hello again!
For Pamea-
I have been taking 650mg of diazoxide for 10 years and yes it is very helpful. I have a recurrent insulinoma . having had surgery to have the first one removed , plus about a third of my pancreas, my spleen and appendix! The diazoxide does not get rid of all the hypos produced by my condition, but it does make life much better, improving symptons so that I can live a reasonable life. I have to take a high dose as my body has seemed to have got used to it. It does have drawbacks as it causes excess body hair and I have to take a water tablet to counteract the water retention it causes., but compared to horrible hypos that are dangerous and are so life changing, having side effects are insignificant. Sometimes my blood levels were down as far as 0.9on before medication. My first insulinoma was discovered when I finally went into a coma on a bus, it was .4!
Diazoxide is very helful and has improved my life beyond recogniton.
Janet
Hello again!
For Pamea-
I have been taking 650mg of diazoxide for 10 years and yes it is very helpful. I have a recurrent insulinoma . having had surgery to have the first one removed , plus about a third of my pancreas, my spleen and appendix! The diazoxide does not get rid of all the hypos produced by my condition, but it does make life much better, improving symptons so that I can live a reasonable life. I have to take a high dose as my body has seemed to have got used to it. It does have drawbacks as it causes excess body hair and I have to take a water tablet to counteract the water retention it causes., but compared to horrible hypos that are dangerous and are so life changing, having side effects are insignificant. Sometimes my blood levels were down as far as 0.9on before medication. My first insulinoma was discovered when I finally went into a coma on a bus, it was .4!
Diazoxide is very helful and has improved my life beyond recogniton.
Janet
Pam,
I did have frequent migraines – typically they would happen after vigorous exercise when my blood sugar would drop into the low 30s. I’d get the normal migraine symptoms of an aura in my vision (followed, of course, by head-splitting pain), but they were treatable using normal anti-migraine medications. Post-surgery, I’ve had far fewer.
With my laparoscopic surgery, I only had internal stitches. I was left with several fairly small scars (each about a half-inch).
Brendan
Pam,
I did have frequent migraines – typically they would happen after vigorous exercise when my blood sugar would drop into the low 30s. I’d get the normal migraine symptoms of an aura in my vision (followed, of course, by head-splitting pain), but they were treatable using normal anti-migraine medications. Post-surgery, I’ve had far fewer.
With my laparoscopic surgery, I only had internal stitches. I was left with several fairly small scars (each about a half-inch).
Brendan
im sorry i forgot to ask….did or does anyone have constant headaches?!
pam
Finally i heard from my docter and i will meet with the surgeons on tuesday to see what options i have for my surgery! The docter said they would put me on Diazoxide until i can figure out when and who will do my surgery! Is that medication been helpful to anyone?
Megan I had a ct scan that came up negative but my blood work showed the same results yours did….elevated insuline levels and c-peptide levels!! it wasnt until a mri that they found a lesion on the head of my pancreas. I also had a sugar level of 29 while at the grocery store with my toddler…two years ago…the paramedics had to come and hold me down because i was acting like a crazey person and put an i.v with sugar in me!! It was so awful! To think that happened while i had my baby with me!!! Now i dont go anywhere alone with my girls without someone with me! Some weeks my sugars would be doing so well i thought “oh maybe my hypoglycimia is getting better!” then something would happen and there i was with people standing over me trying to pour orange juice down my throat! My sugars also get bad during the time of the month…and anytime stress or excitement is going on! Shopping is not even fun for me!! You have to be persistent with your docters…maybe ask for a mri. I did not have the 72 hr fast, nor the endoscopy….but one of these tests will give you answers! I pray for a fast answer for you so that you can move forward. For me having an answer has helped my mental state a-lot!!! What do your sugars average?
Kim with your laproscope were you stitches on the outside as well as on the inside? Do you have scarring? I have little fat in the belly area as well…overall hopefully that will make the surgery easier. you think?
Thanks for the info. I just got back from my 72 hour fast. I made it through the first 47. My blood sugars were boucing around like crazy but I coopuldn’t believe it took so long to drop. My doctor took me off Metformin. He wants to see what my blood sugars will be in a few weeks. I’m afraid I will have to do the 72 hour fast again. My Ct didn’t show anything and I haven’t had my endoscopy yet. My doctor said to hold on until I get my blood work from my fast back. My original blood test did show elevated insulin and C=peptide levels. I just don’t know what to think. After 7 and a half years, I’m just hoping for a real, accurate diagnosis. I send you all good wishes and lots of prayers.
xoxoxo
Megan
P.S. Has anyone elso had periods where their blood sugar was much better. The last month mine has been in what I would call the usuall range with not as many lows. I’m starting to think insulinoma may not be the right answer for me. I did have la level of 29 during February. I passed out and had a siezure! yuck!
Pamela,
Yes, the tests drove me nuts – the waiting, the stress of fasting, waiting for results etc. etc. Yes, it feels like a full time job! I should have gone right to Johns Hopkins and not had any scans or EU done here in vermont. They just don’t have the equipment and expertise – a waste of time and money. Anyways, I had a half days worth of pre-op stuff the day before and then I went in the morning of my surgery and was in for about four more days. Then I went to stay in a hotel in Baltimore for four days. My tumor was on the tail of the pancreas and it was 1.3 cm. The only thing that has been a trial is that they left heavy duty permanent stitches on one of the inside layers and because I have little fat in my stomach area, these stitches literally stick up/out and can be irritating. I would suggest to anyone if they are thin in that area to ask for dissolving stitches! Definitely ask your surgeon about his experience with insulinomas and pancreatic surgery in general. Keep us posted and keep asking questions!!
Kim
Hello everyone!
i disappeared for a brief time!!I have been busy with some tests and the usual daily activities and errands! It takes so much energy that i just dont have! I went to southwestern medical dallas and saw a docter there i really like…he chose not to do the endoscopy..but to have another ct scan on top of the mri i had from Las coinas Medical center! That too showed a lesion at the head of my pancreas. They also did a blood insuline level test (i think thats what it is called)….that the docter said my insuline levels were off the charts!! So now im waiting to here from the docters so that i can meet with a pancreatic surgeon to see if he will be the one to perform the surgery. My docter said i might be ok for a laproscopic enulcleation because of the location in the head of pancreas. I hope to hear good news on that! Excuse my medical terms…im not sure if im writing all of them correctly!
Kim
How long did you have to stay at John Hopkins hospital? Where was your insulinoma?
It seems like all i do is wait for a test…wait for a docter to call..wait for the next test…its all so exhausting! I hope the surgeons i meet with are experienced and know what they need to know about insulinomas…i really want to stay here close to home for my surgery!
Hi megan,
I was wondering if you had your endoscopy yet and what was the outcome? Anytime i have had to fast after midnight i have lucked out and not had a horrible crash…some days are better than others with my suger. I always had food and my husband along for the tests in case of an emergency! Good luck!!
Goodnight!!
pam
Megan,
When I had my endoscopy, I was definitely concerned too about my blood sugar! My endoscopy was in the morning at 10:00 am. I believe I was supposed to fast from midnight on…ha! I woke up at 4:30 am and had my usual midnight snack…then, when I awoke again in the morning I drank juice periodically. My endocrinologist told me i should drink clear juices up until I had to go in and that it wouldn’t be a problem as long as the juices were clear, but not to tell any of the nurses or the doctor who was doing the endoscopy~or else they’d probably tell me I’d have to reschedule. So, that’s what I did! And also, when I got to the hospital I told the nurses right away about my low blood sugar and made it clear that I should be put on a glucose-type IV. So, they checked my blood sugar in the pre-op room a couple times and saw how low it was and hooked me up right away…so, I didn’t have to worry about my blood sugar at all during the endoscopy as they were feeding me sugar through an IV! whoohoo! hope that helps. and I pray your testing gives you some answers!!!!
Penny
Hi Hazel,
I’m afraid reactive hypoglycemia is very uninteresting. Apparently only practical treatment is diet, which I have managed pretty well over the years. The only extra tweeking is to cut out alcohol & caffeine (I live for my cup of coffee in the morning). Apart from that I will just have live with being a little bit special. The big upside is that I no longer have to worry about falling into a coma.
So good luck with your own journey, I will be here to help out in anyway if you need.
Hope everyone out there is having a wonderful day!
Kylie.
I am new to this website. I must say I am mighty relieved to find people like me. I have recently begun the diagnostic testing for insulinoma. I have had many misdiagnosis in the past so I am trying not to get to excited that this could be the answer. I have suffered with Hypoglycemia and it’s effects for 7.5 years. I have Poly Cystic Ovarian Syndrom and I also have a constantly elevated prolactin level. I had my ct scan yesterday, I am having blood tests today and I am also going to have a endoscopy. I was wondering how other Hypoglycemics kept there blood sugar stable during the endoscopy. I follow an insulin resistance diet. I know if I have to fast for 5 hours before the test and during the test my blood sugar will be to low . How did you guys solve this problem? Any advice would be appreciated! I hope you all find great doctors and are well soon!!!
Kylie,
Thank you for thinking of me. Don’t worry about not finding any specialists for me, you need to focus on getting yourself well first. Best of luck for the treatment of the reactive hypoglycemia. I do hope your specialist is correct and can help you improve. Did your specialist discuss what the treatment of reactive hypoglycemia is? It would be interesting to know.
Great news about the rain!! I know how much you guys needed it over there.
Hazel.
Hi all, I’m back.
Nothing really exciting to report. Saw new specialist, contrary to last one, he believes I actually have reactive hypo, therefore he didn’t ask me to sit the 72hr fast. So now I am quite confused (even more so than usual). I was congratulated on my management of my hypo over the last 15 yrs & told to keep it up. He has promised to send me a written report with my blood results, so I will just have to be patient for now.
Hazel
Sorry, I didn’t get a chance to ask about insulinoma specialists in Oz. Have you checked out the teaching hospitals in NZ? I’m sure they will have the best info.
Best of luck to everyone out there!!
Kylie.
oh PS. It’s raining, YAY!!
Hi Celina
Sorry to not replied earlier but have been on holiday!
You were asking about the 72 hr test being done in Brighton. It would very much depend if they have experience in dealing with this particular test. My referral was to my local hospital on my request rather than straight to St Bartholomew as i didnt want to waste their time if it wasnt anything serious. As it happened Whipps Cross Hospital Walthamstow decided they did not have the same experience as Barts in London would so I was sent on straight away. at this point I had no idea just how serious everyhting was. I am based in East London so was very local to Barts hospital anyway. Barts do it all the time so its very routine fort he staff there.
Insulinoma is often so rare that not many hospitals are fully aware of what it is. Bear in mind when I went for my actual op the junior doctor told me I d be put on an insulin drip overnight! She was a bit put out when I said o no you wont! you will put me in a coma! (or words to that effect!) She then went away and read my notes!!!!
My 72 hr fast result was slower than many people on here. I started very low anyway (2.2) I started my fast at 6pm after a meal in hospital at 5. The following morning my blood sugar went up (4.something) which threw everyone.We think is is because my body was so used to it and dealing with it all the time. However after dreaming about biscuits, my bloods went back down the following night to 1.6. It took 30 hours. They took blood every 6 hours and did the bm every four with obs, unless I thought Id dropped.
After that I stayed for MRI and CT scans, and went on and on from there. My outlook was the more tests they did the better informed they would be.
I read everything I could on the subject and asked as many questions as i could so I knew exactly what should have been happening and what they were doing. Keep on the ball as certain things can go amiss.
Let me know if there is anything else you need to know.
Good Luck
Angie
Pamela
My surgeon was Dr. John Cameron. He is one of the most experienced at the Whipple procedure. Johns Hopkins was a wonderful hospital – very organized, very professional. My kids are teenagers. This past summer they sometimes had to take over the driving for me, also help me with dinner because just organizing the various components, when to start doing what would be too much for me! The low blood sugar definitely affected my brain in a way that I would sort of deny what was happening. One day I was out weed wacking and when I reached that 1/2 hour mark it felt as though the weed wacker was trying to push me over. I started having a battle with the thing! After a while it “succeeded” in knocking me to the ground. Then I finally gave up and realized what had been happening. The next day when I went out to look at my “work” the ground was covered with slash marks! No more weed wacking after that!
Gale,
i will pray for you and good results on your endo ultrasound, i am sure you surgeon is right about it being past surgical changes! I will definitely use the webmed for information. Thank you for your response and help so quickly! Since your surgery in July you no longer have low blood sugar? Do you fell mentally sharper?
Susie
Hello given your advice about the biopsy, i definitely will discuss the options with the docters. Maybe another test will prove the insulinoma rather than aggravating the tumor with a biopsy?
Kim
i was reading about John Hopkins hospital..who was your docter? i will try and get the best docter possible? does anyone know if Dallas has any? i read Houston does. You all have so much information my brain is smoking!! Not because i need a emergency orange juice or dr. pepper, but because i keep reading in excitement of having you all to talk to!! After i had my first daughter Lily, and pregnant with Sarah, things just got to dangerous and scary for me and my husband with me being alone..so we hired a live in-nanny. That is truly one of our blessings during this whole sickness. She has been with us for 2 and half years..and she has me pinpointed from the second my sugar drops. She brings me juice and toast and says “I think you need this!” How old are your children? Did they used to help you when you had a crash? Did you ever deny that you were having a low blood sugar to people when they would try and help? I go completly nuts…and refuse help..ive never understood why. Besides the fact that my sugar is probably about 35…if not lower!!
Laura,
Im glad you are healed! What an inspiration for me to know this! I cant wait for the day i can have a salad for lunch..work out..play with my children..all without crashing! I used to love food…its such a chore now..and im always so full! If and when i am ever cured..i dont think i’ll ever drink another orange juice…..
take care…thank you all!
Pamela
Pamela,
Welcome for what it is worth, at least it is good to know you are not crazy and many of us share the same condition. I had the same types of experiences with my kids before my surgery. At the time of my surgery, they were 4, 2, and almost 1. I had a very strick rule for the 4 months prior to my operation that I would not be alone with the kids no matter what. There were just too many scary experiences. It is one thing to hurt yourself when you have low blood sugar, but how would you ever survive emotionally if you hurt your kids? It was way too much of a risk for me to take. The last time I tried, I was driving with all 3 and all the sudden I could not see clearly at all, in fact I had to take my glasses off (Which I need for driving) to see the stripes on the highway. I ended up pulling over and sitting on the side of the road until my sister could come to get me. I shudder to think what might have happened…
As for the Ultrasound, I agree with what everyone else has said. Though, if your surgeon wants to do a biopsy, I wouold question his experience with insulinomas. Did you do a 72 hour fast? If you did and your MRI showed a tumor, the odds of the tumor being cancerous are so low, it seems like a very unnecessary procedure. In fact, after surgery I asked my surgeon when I needed to follow up and what tests I needed to have periodically, and the answer was NONE! It is incredible. Something that can ruin your life for so long, is just cured in one operation. Very, very crazy!
As for your tumor being on the head of the pancreas, that means the part where the pancreas is attached to the intestine. As far as good or bad placement, laproscopic will probably be out for you, but mine was located there and my surgeon was able to enucleate the tumor without the need for a whipple. This really ties in to the skill of your surgeon. You need to make sure his specialty is the pancreas. How long has he been doing it? Make sure you are very confident that he is the one, and if you are not there, get another opinion. There is no more important decision than who does the operation.
Good Luck!
Laura
Susan,
I think you may have of read my response incorrectly.
The endo was performed in February 2007 and helped them find the insulinoma in the head of the pancreas, but the accompanying biopsy led to nothing but grief. The insulinoma was so small (1.3 cm) and they poked it so many times that it grealy inflamed the whole area and reduced the size of the tumor. When the surgeon went in, he couldn’t find it and had to take out the portion of the pancreas he thought it was in.
It seemed like my hypo problem was solved, but all of the symptoms came back a few months later. They took another endo this February but my surgeon ordered that they not do a biopsy this time. After that, I had to have a SECOND major surgery (a full Whipple procedure) to take care of the insulinoma once and for all. So to save this from happening to anyone else, my personal experience suggests that you not have a biopsy performed when you have the endo done, but I’m not a trained doctor either. Just relating my own personal experience (or should I say nightmare!).
Woops! I did it again! My previous message was meant for Pamela! Sorry!
Hi Susan,
Welcome! Consider yourself lucky to have found the lesion so quickly (if that is indeed the insulinoma). I haven’t heard of many people having biopsies. I echo what someone else said – make sure that you have a teamn that is experienced with insulinomas. That is very important. You will have to fast for the EU and it helps if the staff is familiar withinsulinomas so that they’ll be prepared for the likelihood of your crashing. I had a CT scan and an EU at my hospital in Vermont. They found nothing so I decided to take it to the big guys down at Johns Hopkins. I had an octreotide scan and another CT scan with a high octane turbo scanner. It was debated amongst three top radiologists what they saw and it was decided to be an insulinoma.
Like you I have children and animals as well to take care of alone. It was very stressful always feeling like I couldn’t handle it. Things are so much better now although I am experiencing a bit of anxiety when faced with situations where I previously had a bad crash. That is just me!
Keep asking questions. There is a wealth of knowledge and experience here. I don’t know what I would have done without this site!
Good luck – we are with you!
Kim
Susie,
How did the endo ultrasound prevent your surgeon from finding the insulinoma during surgery? It’s my understanding that the biopsy helps determine that it is an insulinoma.
Pamela,
I too found this web site shortly before being diagnosed and I remember how relieved I was to find people with the same problems. The endoscopic ultrasound was the easiest of all the tests I had done, (except for the fasting part). In fact when I woke up from the test I wasn’t convinced that the procedure had even been done! I had 2 CT scans, an ultrasound and also an MRI. None of these test located the insulinoma. Finally the endo ultrasound located a 1.5 cm insulinoma on the lower part of the neck of my pancreas. During the endo ultrasound a tube is inserted down the throat with a tiny camera attached. A biopsy was done on the insulinoma during this procedure with a very fine needle. I believe the location of the tumor determines how invasive the surgery will be. As I said, mine was on the neck which allowed me to have laparoscopic surgery rather than open surgery. I’m actually going back for another endo ultrasound in the next couple of weeks. My surgery was in July and during my followup CT this past January a “questionable lower density area†was found on the neck of my pancreas. My surgeon feels this most likely is post surgical changes rather than recurrence. The endo ultrasound will tell me for sure.
I got a lot of information before my surgery from http://www.webmd.com. Hope this helps you and let me know if you have any further questions. Good luck!
Susie,
How did doing a biopsy prevent the surgeon from finding your insulinoma?
To Pamela,
I will tell you what a ultrasound endoscope is. I have had two of them. They put you to sleep and they stick the endoscope down you and look around and take pictures of your pancreas. This is how they found mine. Now whatever they do, do not let them do a biospy of the insulinoma. I had this done on the first endoscope I had. When the surgeon opened me up, he could not find the insulinoma.Your throat will be sore for a couple of days, but the procedure is painless. Your lucky they also found it on the MRI. I know alot of insulinomas are found on the head of the pancreas. Just make sure you have a great surgeon that has performed this operation numerous times.
I wish you all the luck in the world and yes this in a terrible thing to have to deal with.
But at least its curable and once the damn thing is out of you, you will be back to normal.
Susie
Pamela,
I too found this web site shortly before being diagnosed and I remember how relieved I was to find people with the same problems. The endoscopic ultrasound was the easiest of all the tests I had done, (except for the fasting part). In fact when I woke up from the test I wasn’t convinced that the procedure had even been done! I had 2 CT scans, an ultrasound and also an MRI. None of these test located the insulinoma. Finally the endo ultrasound located a 1.5 cm insulinoma on the lower part of the neck of my pancreas. During the endo ultrasound a tube is inserted down the throat with a tiny camera attached. A biopsy was done on the insulinoma during this procedure with a very fine needle. I believe the location of the tumor determines how invasive the surgery will be. As I said, mine was on the neck which allowed me to have laparoscopic surgery rather than open surgery. I’m actually going back for another endo ultrasound in the next couple of weeks. My surgery was in July and during my followup CT this past January a “questionable lower density area” was found on the neck of my pancreas. My surgeon feels this most likely is post surgical changes rather than recurrence. The endo ultrasound will tell me for sure.
I got a lot of information before my surgery from http://www.webmd.com. Hope this helps you and let me know if you have any further questions. Good luck!