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.
Good Morning,
April, I’m so pleased that your surgery went well. Can I assume they were able to do it laparascopically? I’m sure you are so glad to have it behind you and to be reunited with your family and on the road to healing. I must thank you again for your tip about the NIH. I will be eternally grateful!
Anne, 5 weeks seems a ridiculously excessive amount of time to wait for results! I feel for your and your partner. I have not experienced high blood pressure nor water retention and I don’t recall anyone else on this site describing those symptoms as part of their insulinoma. I don’t recall where you live (but think it may be the UK). If it seems reasonable, you may wish to explore the NIH as a possibility. The only costs I have been responsible for have been in relation to travel.
After 38 hours, my fast finally ended. While I had dropped to the goal of 45 about 29 hours in, my blood sugar increased again and hovered in the 50’s for what seemed like forever. The protocol here is that the like to have about 3 consecutive readings in the 40’s as long as the participant isn’t experiencing uncomfortable symptoms. I mostly just felt some mild nausea and mild headache so we plugged on. Now it’s over and I’ll await an MRI.
Hope everyone is well.
Audra,
Thank you for your thoughts. I hope your test has gone well.
Things seem to be moving exceedingly slow here. No results from our test yet (5 weeks ago now) and we were told by the consultants secretary yesterday that the consultant cannot see us until 1st September. Very frustrating!
My partner is currently quite unwell. Very high blood pressure which they cannot seem to bring down and a lot of water retention. Have others experienced this? Does anything help to reduce this? The doctors seem to be at a loss to know what to do.
Hope you are all progressing well with this thing.
Audra,
Here’s hoping the blood sugar is dropping fast. Will they let you drink water? I drank a ton while I had the fast and it helped a lot.
Thanks for asking about my surgery. It was a good as could be. They didn’t have to remove the tail of the pancreas, just scooped out the insulinoma. There were no complications. I was up walking the next day. It was exhausting but got better everyday.
I stayed in the hospital five days then left to fly home armed with lots of pain medicine. I am so glad my husband was with me, I just followed him around the airports in a bit of a daze. I am still using the pain medicine but have reduced the amount quite a bit. I have my mother n law here to help me, but I am enjoying being with my kids and at home. I am taking a couple of naps a day and resting quite a bit.
Hopefully you can sleep tonight if you’re still fasting and will wake up finished. Do you know how low they plan to let you drop before it is over?
Good luck.
April
Hi Laura,
Actually, I had hoped to be able to have popcorn and coke prior to my fast. It’s been my experience that I crash in a couple of hours after eating such things. I had not had anything to eat since about 8:00 last night so I’d hoped to continue fasting this morning. However, they have to follow a certain protocol here so I had to eat breakfast, then have blood drawn as the fast began. It’s great that you were able to end your fast in 2 hours. If history dictates, I will probably be at this for 27 hours start to end.
April, if you are reading, I’m wondering how your surgery went. You have been in my thoughts.
Anne, I’ve also been thinking about you and your partner and wondering what you’ve learned.
Take Care, all
Audra, not to burst your bubble, but for informational purposes for the others out there, the fast should go much faster if you fast before the fast. My doctor had me come in first thing in the morning without eating first so I was low to start with. My fast was over in a matter of 2 hours when my sugar continued to fall. Just something to consider for those of you who don’t have unlimited time.
Hi Everyone,
I’ve made it to the NIH in Bethesda. I’ve just begun my fast after having a robust breakfast and chocolate cake for dessert. I must say it is very refreshing and instills a great deal of confidence to have staff who are so knowledgeable about this disease. If others are out there still struggling waiting for tests, etc. you may want to consider NIH as an option. I suspect I will start feeling unwell shortly from the fast but I’ll do my best to keep you posted.
Hope you are all well.
Hi Audra,
That’s the right kind of surgeon – I would call his office and see if they can tell you any details on if he has done insulinomas, and how long his waiting list is if it has already been located.
Mike’s calcium test gave them a hot zone, but did not give a firm location. They actually thought he had two tumours as they had two hits, but one turned out to be a cyst that the surgeon said was no problem and he left alone although I think he may have biopsied it.
It sounds like they are making plans for progress and either route could work out well for you. I would think going to Bethesda is worthwhile either way and then you can decide what to do next based on what is found there.
Well ,we are sweltering in 34 C temps in Prince George this week. I have heard the rest of the country is not having as hot a summer, but we are at very high risk of forest fires which is scary. The humidity isn’t too bad, but the house sure heats up fast. We spend our evenings in the basement TV room since it is the coolest place in the joint. Mike has started a major cleanup of his office space in the other part of that room. He’s complaining that the lifting is making his muscles hurt – I am slightly sorry for him, but I have lots more chores waiting for him. A good year’s worth of items on the honey-do list. It’s great having him back!
We were lucky for a change; when we flew to Vancouver we went back to our home town and the help of friends and family we only see occasionally. I stayed in my Dad’s apartment, and we had Mike’s parents and brothers helping us, so we were lucky that way. His parents were somewhat horrified at his condition, since he had never been very sick before, and they were quite stressed out. I borrowed my Dad’s car to get back and forth to the hospital and Mikes old school buddies joined the support visitors. My advice – let your friends and family help you – you will need it, and they will be happy to be there for you. Obviously you can pass on your help to someone down the road. I was grateful for my supportive group and will be available to help any of them down the road.
So, cheers for now,
Heidi
Hi Heidi,
Thanks so much for sharing your thoughts-I value your opinion. I looked up the “pancreatic surgeon”. In the phone book, he is listed under the specialty of hepatopancreaticobiliary. Yeesh, I wouldn’t want to have to write that too often–or say it! Because the NIH receives federal funding to do research, the only costs I will incur are in relation to travel and lodging (I”ll have to spend one night in a hotel prior to admission and another night after discharge). However, I will hang onto receipts in the event that I am able to claim medical costs on my income tax return. The surgeon that I met with was a general surgeon. If I’m not mistaken, I believe he is the chief of surgery. Surprisingly, my endocrinologist never mentioned the existence of the hepatopancreaticobiliary dude. This is very surprising especially since they practice in the same hospital! Her only issue seemed to be with respect to diagnostic procedure preference. She expected that endoscopic ultrasound would be offered in Bethesda and it is not. Rather, they do the calcium stim test (which the doctor in Bethesday told me was developed at the NIH). The other consideration that was discussed was the “what if” scenario of “what if you have surgery in the states and you have complications?” However, I know that you are right, I will likely come away from Bethesda with greater insight. Even in the event that the CT and MRI are negative again, at least I will have had almost a week to ask questions and make a more informed decision.
Thankfully, my husband is not down and out. While he does suffer chest pain, he continues to work and be active playing hockey and golfing. We also have a 19 year old daughter still living at home (we sometimes see eachother in passing….she has an active life). I must say I am truly blessed. I have a dear friend who has offered to put her home and work life on hold to accompany me for surgery. It is difficult to have someone make such a huge sacrifice especially when the time frame is unknown.
Thanks again for sharing your thoughts. Take Care.
Hey Audra,
That’s a tough question to answer. I would expect a ‘pancreatic surgeon’ to be familiar with insulinomas, particularly if they have practiced and studied in a major centre. Our surgeon in Vancouver was a ‘Hepatobiliary’ specialist, and worked on the liver, gall bladder and pancreas and had seen ‘many’ insulinomas in his career. That being said, your testing in the US is definitely going to happen faster – so I would get that done either way. However, you will need a support system during and after surgery, even if you don’t get the level of complications Mike did and your husband’s health is also going to be tested during the stress of your recovery, as you will be quite helpless to begin with. I hope you have some other family/friends who can support both of you during this challenging period.
I would discuss the option of dealing with the local surgeon when you are having your testing at Bethesda. They may be able to link up with your local guy and help you get things sorted out, one way or the other.
We found the wait time for surgery once the tumour was located not as severe as we originally thought. They told us 2-3 months, but then had a cancellation and phoned to ask if we could get down to Vancouver in time – so we jumped at the chance. Got to love those Westjet seat sales!
I am wondering about the costs of going to the US for you? Have you been able to get provincial funding due to lack of local availability or are you just handling it on your own? I would worry about escalating costs if you had complications like Mike did and had a longer hospital stay in the US.
When we flew back from Vancouver to PG (a one hour flight), Mike was so weak, he could not have made it to the airport and through the terminals without my help. We needed a ride on the customer service cart to get to our gate and he had to be pre-boarded with assistance. Of course, in hindsight he was still very ill, as a week later he landed back in hospital for another 3.5 weeks.
It will be a hard choice, but the better option may become more clear once you have had the tumour located and the surgical path is identified.
Was the surgeon you met with, the pancreatic person? What does your endo recommend at this point? Our Endo was out of the picture once the testing had found the tumour and we never dealt with her again. I would ask your Endo if she knows anything about the pancreatic surgeon particularly the level of experience dealing with insulinomas. Just keep asking questions and make it clear you need to make careful decisions particularly in light of your hubby’s health. You can also check into home health care services to support you both post surgery. If he is already sick and you are facing this complicated procedure, you must surely qualify for some services.
If you do go to the US, possibly one of your friends/family can be available to be bedside for you. It is a big thing to ask – but you will need the support. Some of our other Insulinomiacs have also had to travel for surgery – any comments you want to add?
All the best from Mike and Heidi
Happy Sunday everyone!
It’s rainy here so is a good day for “catch up”.
Nicolai,
I have had an MRI and a CT-my insulinoma was not visualized in either case.
Anne,
I’m so sorry that you are waiting in the lurch. I’m sorry that I am unable to cast any light on the 72 hour hepatology testing. Also too bad that you have not yet received results from the fast. I was aware of my results prior to leaving the hospital. You and your partner are in my thoughts–certainly, you will know more tomorrow.
Heidi,
As a fellow Canadian and someone who had to travel for diagnosis and treatment, I would greatly appreciate your thoughts on my situation…
I finally met with a surgeon and my endocrinologist on Thursday. Unknown to me is the fact that apparently there is a pancreatic surgeon in my city. Unfortunately, we have run out of options in terms of locating my tumour in this health region. That said, I jumped at the chance to go to Bethesda to the National Institute of Health. I have now learned that endoscopic ultrasounds may be performed in a nearby city (21/2 hours away). I am scheduled to go to Bethesda on Saturday for repeats of my 72 hour fast, CT, MRI, and ultrasound. Further complicating the issue is that my husband is currently at high risk for a heart attack. He was recently hospitalized and we are unable to get insurance which would allow him to travel with me. I am feeling fine about going alone to Bethesda this time as all tests are familiar to me and non-invasive. However, I am torn as to what to do about the surgery. On one hand, if I travel back to Bethesda, I have a certain degree of comfort that they have performed the surgery many times and are doing it laparasocpically if the tumor is in the proper location. However, if I were to have complications, I would be stuck miles away from home and without the support of my husband. On the other hand, if I have my surgery here, I may face a longer wait period and don’t have the same level of confidence in the level of experience here. But, if something did go wrong, I would be supported by all of my family and friends. Good grief this is quite a dilemma. I am truly hoping that my first trip to Bethesda is successful in locating the tumor. That way, I could make an informed decision as to where to have the surgery. Any thoughts you wish to share would be welcome!
Take Care
Hi Everyone,
Hope you are all doing as well as you can and that things are gradually moving forward for all of you.
Could anyone help with this one? My partner went into hospital for the 72 hour insulinoma test several weeks ago (no results yet), but now has an appointment letter come through for a 72 hour test in the hepatology department. No explanation and no means of contacting the hospital before Monday morning to sort out what is going on. The only other 72 hour test, (linked to hepatology )i can find on the net is a stools test to test for various diseases of the liver and pancreas. Can anyone shed any light on what might be going on?
Thanks everyone
Nicolai,
I think lots of people don’t have tumours that show up on CT – Mike had two CT’s on different machines, and an MRI and nothing showed, so the doctors here sent him 800 km south to Vancouver to have the calcium stimulation test done, and they got an indicator that there was a ‘hot zone’ on the head of the pancreas. This led to another test – the Endoscopic US, which allowed them to visualize the tumour (1.9 cm) on the back side of the head. Then we waited about 6 weeks to get the surgery organized and had to travel to Vancouver again for an extended time.
This all took us about 4 months to progress through. Canada has the surgeons and technology available, but only in major centres, and we live in the north of BC and only have the CT and MRI machines here, as well as waiting lists due to our widespread but sparse population. I can see that patients in small countries may also not have access to all the services required for this complex problem. The medicos always start with the CT and/or MRI as these are the least invasive, while the others involve being put to sleep and the risks associated with more invasive procedures. Have faith, they will find it eventually. Charlotte was indeed lucky to have had it found on the earlier testing.
The laproscopic procedures are much easier to recover from, but we were told that the ability to do the surgery this was is very dependent on the location and circumstances. Mike’s surgeon said he would try to do it that way, but in the end it was the big cut vertically down the middle and with a bend to the right. We are just glad they didn’t end up doing the whipple procedure and he isn’t a diabetic now.
Hang tough and be strong, it seems that help is on the way. The surgeons who do this type of surgery are very specialized and are good at what they do, once they get the process underway. Our surgeon was determined to find the tumour before he started cutting – I liked that he was being cautious and careful. It was a hard enough process with plenty of side-effects as it was.
Charlotte, good luck with this new surgeon – getting someone who is experienced is key. I am very hopeful for you.
Take care,
Heidi
Dear Nicolai
from one Dane to the other: thanks so much for your kind message. I have already send you a private email regarding the Danish surgeon.
To all: isn’t this just amazing how people can connect this way?
Audra & Jackie: thanks for your very sweet words 🙂
Best regards
Charlotte
Hi all,
Charlotte,
Great to hear about your progress. I hadn’t checked the website for a while, so didn’t realise that there was another Dane in here! I have been waiting a long time to sort something out with surgery, and I actually found a Norwegian surgeon who could do laparoscopic operations (which the Danish hospitals have never previously done). I know my hospital has now established contact with him, so this must surely be the same surgeon you are talking about. I really hope you are able to sort things out, so he can come down and do the surgery. If you would like to talk about this, please send me an email at “nicolaiprl@gmail.comâ€.
Heidi,
So great to hear that Mike has finally recovered from his ordeal. His situation has certainly showed how serious this type of surgery can be, but it is great that he has pulled through and hopefully will have no long term effects (apart from the scar of course).
Regarding my own case, the doctors now want to do more scans, because even though they have found a tumor on the tail of my pancreas, and the blood work indicates insulinoma, it does not “light up†on the CT scan as they normally do. So I will probably have to do an intra-arterial calcium stimulation test. Do any of you have experience with this? And has anyone had a tumor that did not “light up†on CT scans (when they give contrast fluids).
Best of luck to everyone,
Nicolai
I join the excitement of the rest. Once it is found you are halfway there. That is so great. I hope they can do the laparoscope so your recovery time will be shortened. It won’t be long now and you will have your life back.
Hi Charlotte,
It’s great that you have confirmation of the bastard’s whereabouts! Good luck with your surgery arrangements. I hopeful for you that a surgeon will be able to come from Norway-that would be great! Better yet if you are able to have it done laparoscopically!
In the meantime, take care.
Thank you all for your very kind replies!
I feel that the drug might work a little for me anyway – I stopped taking the drug for 2 days and my blood sugar dropped very fast after every meal. I practically had a big meal every second hour or more – day and night for 2 days. I then started again with 400mg daily and has a go from the doctor to increase to 500 mg if this is needed to stabilize. Luckily I do not pay for the drug and get it for free from the hospital.
I had a MRI scan last week and got the result yesterday from the doctor: the 2 cm tumor found by endoscopic ultrasound on the upside of the head of the pancreas is verified by the MRI scan and it seems that it is possible to remove without the Whipple operation. Due to my heavy overweight it is possible that a specialized surgeon will come from Norway and do a laparoscopic surgery which is not standard procedure in Denmark yet for pancreas surgery. I really really hope this will happen so I can get rid of this little bastard!
Since my primary surgeon is on vacation for 3 weeks nothing will happen until he is back. I got a CD with the MRI images but unfortunately we did not have time to look at them so I cannot see exactly where that little bastard is on the images. But never mind, the images are exciting anyway 🙂
Heidi: I am very happy to hear that your husband is now finally OK and I wish you both all the best.
I appreciate all of you being here!
Best regards
Charlotte
Heidi, this is so awesome that you are both at the end of this journey. We celebrate with you and wish you both nothing but happy, healthy days in the future.
Hey Heidi!
That is great news! I am so very happy for you and Mike! It’s been quite a trek since the surgery let alone everything that led up to it. I hope your entire family (including new furry beast) has an excellent and good rest of the summer…you deserve it! 🙂
Hi Folks
Guess what – Mike is officially finished with Insulinoma – the drain has finally come out today! 4 months since the operation (March 19) and the only thing left now are the scars.
Now I can get out our honey-do list and make him work!!! He won’t be back to his real work until September 1 when he goes back to school.
Hallelujah! it’s finally over. Thanks for the emotional support over the last year – this group is a life-saver.
Heidi
April,
I used very little of what I brought other than toiletries and my journal. I did not feel like reading, watching TV, or engaging in other leisure activities. I spent my time resting, being assessed, taking meds, trying to walk, etc.
Karen,
Regarding the get together, my family and I truly enjoyed the authentic Italian restaurant. Unfortunately, no one else came. There were several last minute cancellations.
Rhonda
Hello To All I also have had the pain just below the breast on the left side. So many things seem to be going wrong that at times I feel like I am truly going crazy. The doctor has put me on the medication Miglitol to be taken before each meal in all the blogs i have read I have not heard of anyone else on this(has anyone tried this, just wondering) I also had gastric bypass surgery about eight years ago at first the doctors wanted to blame my symptoms on this but since this insulinoma thing begin about two years ago they think different now. I think the depression part is one of the worse things for me. Everyone looks at you and you do not look like you are any different so they can not wrap there heads around it. I take care of my eighty year old father and he depends on me so much it is really hard not to have any energy(I was always on the go and had lots of energy but not now) I just wish I could have my life back and go figure to have surgery to lose weight and now I am one mean eating machine gaing weight like crazy!!!!! Well thanks to all for this web site because it truly is lonely in this diease my prayers are with all of us.
Velvet,
It does sound like you have an insulinoma but I am no doctor just a previous insulinoma sufferer! I agree about getting a glucose monitoring kit. You will be able to test yourself and see what your sugar is before and after eating to see if it makes a different after eating. I would demand to get into someone sooner if you can. Ask your doctor for the glucose monitoring kit and a fasting blood sugar test. You could also print out the top portion of this site and take it to them if they are not aware of insulinomas. Keep us updated I wish you success in your quest to get healthy!
Tatia
Well, the good news is there was a cancellation and I’m getting the parathyroid removed. The surgeon is leaning toward a biopsy and things do seem to be moving forward. The other good(?) news is its seeming less likely that I have insulinoma. I have been testing my blood sugars for close to a week now and instead of low blood sugars mine are quite high (the lowest has been 150 — the highest over 300). I’m wondering if any of you with insulinoma also have diabetes? I’m still ridiculously frustrated…
Velvet, I have all the symptoms you list (and have for almost 17 months) including the pain in the stomach. My pain is found if you put your fist between and just below the breasts… Of course, I don’t have my diagnosis yet…. Good luck getting a diagnosis.
All of you are lovely and I’ll keep checking in — especially once I get a diagnosis (insulinoma or not).
By the way, how did the gathering in LA go yesterday?
Welcome Velvet,
Except for the pain in your stomach, this definitely sounds like it could be an insulinoma. The problem is when your doctor says your hypoglycemic and to stay away from sugar, he/she doesn’t know that you have a constant supply of insulin so that sugar is the only thing that will keep your blood sugar level at a level where you can function. You should get yourself a blood sugar monitor and test yourself throughout the day, when you’re feeling badly and when you’re well. You should also request a blood test where you have fasted for some time and it will specify your pro-insulin, insulin, c-peptide and blood sugar. This is all I had to convince my doctor that I had an insulinoma. General practitioners often don’t know what an insulinoma is! In the meantime, try to eat often, small amounts and forget about the no sugar/carbs.
I’m sure others will chime in … Keep in touch.
Kim
April, April, April…..
This is major surgery and if you have the open procedure vs. laparascopic, you will be very out of it for several days, and then just plain out of it. My husband’s incision is over 10 inches long (with an angle in it) and had 24 staples for a week. Mike was in the high needs unit for 2 days, then in a regular ward for another 16 days, the first time round. His surgeon originally told him he would be in hospital 3-5 days only but unfortunately he developed an abscess from the surgery. After being sent home to Prince George from Vancouver, a week later he ended up in hospital again for another 3 weeks.
Hopefully you will have no complications, but you will be tired and hurting, so I would not expect to be very active doing much other than snoozing, and maybe reading lightly. Don’t take work with you – it is not going to happen! Mike didn’t even spend much time watching TV and he is an addict. He was too sick and too worn out by trips to the bathroom to do much else. The nurses had him doing laps around the floor, and he had to do breathing exercises to make sure he didn’t get pneumonia. Hospital stays are not restful, and you will not have much energy to spare.
So my message is pack lightly and hope you get home as soon as you can. You will have lots more down time to spend on your paperwork and computer! Even at home, you will need lots of rest and recuperation time.
Good Luck and focus on getting though the next few weeks. Hopefully you will have a supportive family and friends ready to carry the load.
Best wishes,
Heidi
Audra,
I am glad that the NIH is working out for you. At the Mayo Clinic, I had almost the same tests as you are having with the exception of an MRI. My surgery is scheduled for Thursday in Rochester at the Mayo Clinic. Good luck with all your tests.
I am looking for hints from those who have surgery previously about what to take to the hospital and how to prepare for the surgery. How will I feel afterwards. Should I take my computer and paperwork? I will be homschooling my son this year and need to prepare? Will I be too tired, sick, etc, Should I just take a book and expect to be sleeping most of the time?
How can I make the hosptial stay better. I am dreading being in the hospital for a week.
Any hints would be appreciated.
April
Hi All,
Like others, I would be happy to share information for Jon’s database and publication.
I am excited to share that things are moving forward for me with respect to this disease. It is because of this site, and thanks to April, that I will be admitted by the National Institute of Health in Bethesda, MD to undergo tests to localize my tumor. I will be admitted on August 2nd to repeat a fast, and to have a CT, U/S, and MRI. I will return to Canada on August 7th to await a second admission for the calcium stimulation test and assuming the tumor is found-surgery. I am eternally grateful for the information and support of this site.
I hope the get together is going well and that all of you who are healing from surgery or are awaiting diagnosis and surgery are doing well. I always have an interest in how everying is doing and want you all to know that you are in my thoughts as always. I look forward to keeping you updated about my journey. Prior to leaving for Maryland, I have an appointment with my endocrinologist and a surgeon on Thursday here at home.
Take Care!
Hi,
I am a 37 yr old female who is searching for answers because I cannot get in to see an endocrinologist until late September. I found this site by accident and am hoping someone can give me some answers. I went to my doctor a few weeks back after my symptoms got to be too much for me; weakness, sleepiness, constant hunger, blurred vision, especially after I work out, feeling empty even after I eat, and my brain seems to stop working altogether sometimes. I also have a pain in the middle of my stomach. I have always eaten very well and lifted weights and ran most of my adult life, even ran a few marathons. But now I’m lucky if I get in 10 minutes on the treadmill without feeling faint. To top it all off, I’ve gained about 10 pounds in just a few months, which I cannot lose, even after going on a high protein, low carb, no sugar diet that my doctor said should help. She said I was hypoglycemic after only one blood draw. I actually feel worse on this high protein diet (as a runner I’m used to having more carbs) and my brain is always fuzzy. And I’ve been a terrible crab-apple lately (as my mom likes to say), just angry at everyone! Totally not like me. Could it be an insulinoma and should I try to find an endocrinologist who can get me in sooner?
Jon, I’d like to echo what Jackie said so well and add that I would very much like to help with your project.
Jon, I don’t know if you realize what this site has meant to us. I think I can speak for all when I say that the experience with diagnosis and surgery was very stressful and to say the least frightening. This site offered to me the bonding with others that had experienced similar occasions, as well as similar challenges. I did not feel alone. You gave this to us. So let us know what you need and we will help in any way possible.
Remember that this is not my effort, it’s yours.|
Thank you so much guys, I really appreciate your collaboration with this good cause!
I will let you know as soon as I finish the data taking sheet and will contact you via email (I already have your address because you set it every time you post).
Best of all,
Jon
You can contact me regarding the case of my then 82 year old mother, if that would be of interest.
Susan
Hi Jon,
Not only would I be willing to take part in any research I’d be fascinated to read the results. I actually think we are incredibly lucky in the UK, but then I am biased!
Jane
I would also like to participate in your study Jon.
Pamela
You can count me in on this too. The more research the better. As John says, do you need our e mail addresses.
Love Janet xx
Greetings to all – and to Jon, our inspiring starting point all those years ago!
Of course I am happy to participate in any survey or study. I am in the UK and in the minority group of older people affected, my operation taking place three months before my 60th birthday – and being a male – and having fortunately experienced quite a straightforward progress through from diagnosis to treatment and recovery!
Do we need to feed you our email addresses privately, or do you have those already?
Or do you want us to fill in a questionnaire? Or write a detailed report of some sort?
It will make fascinating reading for all of us – and will help so many still to be affected.
best wishes to all
John
Jon
You can count me in too!
Just out of interest when I had my op I participated in a study to see if increase in oxygen helped the recovery process. Dont know anything more, other than they monitored the oxygen in my blood 6 hours or so after the op.
Always love a bit of research here and there!
Ps Have a great time this weekend when you all meet up – we want to fear all about it! Photos on facebook please!
Angie
Thanks again for the replies. I just got the result Friday on a 3 month blood sugar level test (Hemoglobin a1c I think its called). My numbers are, as far as I can tell, inconclusive. So, I’ll call the dr. tomorrow. I saw the surgeon about removing the parathyroid, but he won’t do anything until ths insulinoma thing is all worked out…my endocrinologist told him that he was doing a work up (he also told the gi dr.) but he hasn’t called to tell me what’s next and my next scheduled appointment was a follow up and isn’t until August. So, I’ll call and squeek and hopefully get this old ball moving. For your stats, I’m a female, age 46, living in Southern California, and still working on the diagnosis. Have a wonderful week everyone.
Hi, Jon
Mike and I would be willing to participate – Mike lets me do the talking, but he says he would be happy to discuss his case with you too.
Heidi
Jon,
I am eager to participate as well.
Rhonda
Jon,
‘Sooo willing to participate in your research project! Count me in.
Peggy
I am happy to participate in a your research so feel free to contact me.
Rhonda I’m collecting this data too, I want to publish this info in a medical journal. It will re-define old concepts about this disease, specially in epidemiology.
I’ve been trying to contact all of you dear readers and writers in order to collect basic data and to mantain an anonymous database with all your info.
If any of you is willing to participate in this research project, please let me know.
Best of all,
Jon
Hello all,
I have been re-reading through all of the posts and jotting down some notes. Here are some trends that you may or may not have noticed. Out of the 80 people that have posted, most have been women (67). We are a young group (average age reported is 37). We have come to our diagnosis of insulinoma through a wide range of tests and methods (no trends visible). About a third of us that posted have had surgery for insulinoma. The most common procedure has been the partial pancreatectomy. Two members have given birth post surgery. While we are spread across the globe, the top two places we live are England and California. Interesting…
Hi Charlotte
My husband, Mike, gained over 40 lbs in the time from his diagnosis in April 2008 to his surgery in March 2009. And, he has now lost that same 40 lbs in the 3.5 months since. My point is that the need to eat almost 2x the amount of food as he did previously, just to keep his sugars within a barely manageable level, brought on rapid weight gain. And we actually believe he had the tumour for about 3-5 years before, because he had a continuous weight gain, albeit slower, during that time and he always felt like he had the flu or a cold coming on. Mike had been sneaking snacks and food during the same time period. His personality also seemed to have changed to one of very low energy and interest in the real world. I had originally thought he was having some kind of midlife crisis and had lost interest in everyone and everything. Well, now I know better and can see the beginnings of a full return to normal happening around here.
Mike still has his drain in for his abscess, but is now walking the dog at least 2-3 km per day and is doing regular chores around the house. (he would go back to work but as a teacher he has the summer off so he will be back for the beginning of September). He has another CT next week and they plan to remove the drain the week after (Dr. on vacation now). They have been very cautious in removing the drain because of all the problems with the abscess that developed post-surgery. The drain bag is very inconvenient as it snags of things as he moves around and he gets lots of stares from people when out in public, but he has survived it well. He feels good, sugars are perfectly normal and he has a bit of a lilt in his step again.
My concern for you, Charlotte, is that your weight level is probably caused at least in part, by the insulinoma condition. Mike’s surgeon commented that he found insulinoma operations challenging because he almost always had to work with overweight or obese patients due to the nature of the illness. But that didn’t stop him. We didn’t try either of those drugs as the local doctor felt they were often not of much benefit, and Mike seemed to be able to eat enough to keep within range. The need for weight loss is completely contradictory to your need to feed your tumour to stay conscious! I would recommend that you have another discussion with your medical people to discuss clearly how this is supposed to work, particularly if you do not have success with the medications.
I have said it before, to others on this blog, advocate for yourself! and be persistent with the doctors. Squeaky Wheels get attention and you need it!
Best wishes from Canada,
Heidi
Don’t you hate it when you finally blog, a long blog, and it doesn’t post! I don’t know why that happens…Anyway…
Karen,
I wanted to say that if you depend on the medicine to help you lose the weight you need then you may have trouble. I was on the highest dose and although it seemed to help me stay conscious, most of the time, I still had to eat constantly to stay mentally sane. I never did gain the weight that everyone does, the doctors don’t know why. I think it may have been the way I ate. I don’t eat red meat or dairy, fried foods or (hardly) any white flour products. I found that snacking constantly worked much better for me than eating a big meal when I felt low. As long as it wasn’t a high sugar snack. Whenever I noticed that my sugar was dropping I would drink rice milk. That really seemed to work for me. Someone here tuned me on to sweet potatoes, great snack food! It does take a while to adjust, I hope you find what works for you so you can get on with taking care of this asap!
Karen,
Isn’t it the worst feeling not being in control, thinking you might pass out. I hope it doesn’t get much worse for you before you have this figured out.
And I won’t lie, working is hard! Sometimes I would show up a little late, just hours after the paremedics had to wake me up. Fortunatley I was hired by a Christian school when I first had the symptoms of this diseaseso they understood, although they had no idea of the extent of my symptoms. I was able to snack all the time while working. ( I just brought cookies for the students 🙂 There was one (maybe two) person who could tell when I was getting low which was a God send because even my husband couldn’t tell when my sugar was dropping most the time. Knowing someone in the kitchen was helpful too.
I was only 15 when I first found that my kidneys were full of stones. I was as intent as I could’ve been on finding the reason but that all ended when I got this disease. I couldn’t get anyone to agree that the conditions were relatated. My calcium levels were normal. (Of course they said my sugar levels were too before I was finally
diagnosed. I hope you stay proactive!
You know, people are only as compassionate as far as they can understand what you are going through. Try and not expect too much. We know how lonely this disease can be.
Keep the faith,
Peggy
Hi to all!
Charlotte.
As John said welcome to the site, and post all your worries and concerns here, as all of us have experienced varying symptons, treatment of this insulinoma thing!
I have been taking diazoxide for ten years now and it has helped me tremendously, I hate to think how thing would be if I did not take it. I now take 550 mg per day and rely totoally on it to help my erratic blod sugars. I had an insulinoma removed. along with a large part of pancreas and spleen many years ago in Birmingham in the UK, and then 20 years later had a reoccurence. I live with this second tumour as the op was a concern to the doctors having already had major surgery. It was suggested to try the diazoxide and although I am now on a maximum dose it has been my life line. Although it does not stop the hypos it makes them liveable with and much less frequent. I have had only a few side effects, although excess body hair is a nuisance, but compared with raging hypos its a piece of cake.
At least you do have the dianosis which many of us struggled with to start. I hope that you manage to lose the weight that the surgeon will be hapy with. My prayers and love to you and everyone on here.
LOve Janet xx
Hi, Charlotte – and you are very very welcome here! It is such a relief to find people who can articulate and shae our many varied experiences and give reassurance.
Good luck with everything over the next period of sorting this out. Tell everything on the site, without any fear. We are sharing a lot, all of us.
I personally had a bad experience with the drug diazoxide. It is very expensive and made me feel sick and shaky – and did nothing to regulate the sugar. I think I only took it for a few days. My endocrinologist admitted that it only works in about half of all cases. When it works, it works well, allegedly.
My only experience with octreotide was in a massive scan, following an injection of octreotide, which lasted several days but revealed absolutely nothing.
You are already diagnosed and waiting for the surgery. The weight issue is, I suppose, a matter for you and your surgeon. He or she will understand fully why you have put on weight and how hard it is to lose weight when trying to maintain blood sugar! Just staying awake and clear-headed needs sugar, bread, chocolate!
Good luck – and let us know.
John
Hello everyone
I am so glad having found this site!
I am 43 years old, lives in Denmark, Europe and have been diagnosed with insulinoma just 2 months ago. My doctors have decided not to operate me yet because of my heavy overweight (BMI is 43 with height 173 cms and weight 130 kgs), so I have been put on “Diazoxide†which should hopefully stabilize my bloodsugar and enable me to loose weight before operation. But….. I’m on 300mg a day now and it is not stabilizing enough yet, and my nights are still horrible with meals once or twice.
Has any of you good experience with this drug Diazoxide?
I also tried Octreotide (injections) but unfortunately it had the opposite effect and lowered my bloodsugar just after each injection plus it gave me very unpleasant sideeffects.
I would also like to know if any of you have had surgery with BMI in my category – and how did the surgery go? Did you have any complications?
I hope to hear from you very much 🙂
Brgds
Charlotte
Hi Peggy,
I’m sorry to hear about your sisters, it is so difficult to watch people you love going through all of that. While doctors have looked, I don’t have an ulcer (yet, the way my body seems to be falling apart who knows….). You say you have issues with kidney stones have you ever had your parathyroid checked? It produces the calcium that sometimes causes kidney stones and if you are a “regular manufacturer” of kidney stones I’d want to find the underlying cause.
I called the dr again today because they never responded to my message sent Monday. When I spoke to the nurse I told her that I was tired of being passive in pursuingmy diagnosis and I was now going to be proactive, I was a bit shocked when she said “good for you!” I guess I expected them to be resentful of my puirsuit. I’ll ask about a glucose monitor, or I think I can just go pick one up at a pharmacy and begin checking it myself. Yesterday was my worst “episode” I was talking to my husband and family about them needing to help more, and all of a sudden I almost passed out. I’ve read that for many people on this site passing out is not out of the ordinary — this scares me…how do you function? How do you hold jobs? Luckily my job allows for summers off, but I’m nervous about being in the class in August and passing out.
If I’m at all able I’m going to the lunch next week. I am glad to know that my family aren’t the only ones with difficulty understanding or being compassionate aobut this disease (insulinoma or not). But to find this group of strangers who are so compassionate is a blessing. You all make me feel not so alone, which I’ve been feeling so very alone in all of this for over a year.
You asked about the pain, it was been almost nonexistent for 8 months and now it’s beginning to be noticeable. Since I don’t have a true diagnosis for insulinoma I don’t know if there is any relation to the pain and the insulinoma.
I’m so glad to have found you all. Even in and through waht you have gone or are going through health wise you are a comfort to me…
Karen,
Wow, you’re really going through it right now. So you have to have your parathyroid removed. I’m sure you will only accept the best surgeon you can get for that procedure! Don’t settle for anything less! I’m sure they will continue to pursue diagnosiis for men1, or have they alread? I know how confusing it can be but take comfort in knowing that though it seems like they are shooting in the dark sometimes, they really do know more than they let on. That is if you have experienced physicians. Though your high sugar reading was abnormal, it is normal to have high insulin with it. (I remember a few high sugars with my insulinoma, but they were freak occurances.)You should be checking your own sugars so you know what is going on. Hopefully they’ve given you a monitor. If not, ask for one!
I’ve also had both kidneys full of stones. I’ve had three surgerys and multiple ESWL’s. My kidneys are a regular stone manufacturer! I too had insulinoma for years before I had a clue that it was my sugar. I never had any pain with my insulinoma though. Did they ever give you any reason for that? It’s a no wonder though with all you’ve gone through You should have an ulcer. Doesn’t men1 cause that as well? I also have 2 sisters with cancer. I can’t imagine what it would be like to loose a sibling…I can’t say that I know how you feel Karen, no one does but you. But I do know what it’s like to feel alone. That’s the hardest part about having a disease. Don’t expect anyone to be able to relate, there’s no way they can. Not even family. It was very hard for my husband especially. I think he felt helpless. I also have a 17 year old daughter.
I hope you can make it to the lunch. I would’ve given anything to have that kind of support when I needed it most. Hang in there, I’ll pray for you and we’ll all be there for you.
Peggy
The new stories on here are very distressing to read – but we old-hands all know that there are almost as many hellish stories amongst us as there were insulinomas! Each of us has a slightly different experience and different outcome. Each new sufferer can take something from the many heart-warming successes and good results – and from the many accounts of individual persistence in securing a diagnosis and treatment.
My own memory is of good days and bad days, of very bad mornings in particular, and definitely of a progressive worsening of symptoms over some years. I have no memory of pain. My problems were with sudden loss of coherence without any warning, shakiness and tremor, rambling meaningless speech, a haunted feeling and inability to explain.
Don’t panic out there. The solution, once you are correctly diagnosed, is a good one. I speak as a 7-months recoverer with a full and complete recovery. I shall be checking in with my surgeon next week and am expecting the full sign-of.
Our condition is so rare that doctors and even endocrinologists are bound, occasionally, to miss it or to feel insecure. I have said it before – insist and insist again and again. Eventually you’ll get lucky and get the blasted thing removed. Life then will be sweeter than you can imagine…
Good luck. We all share in all our worries – and offer support.
John
Peggy,
I’ll try to keep my long story relatively short. March 08 I developed an excruciating pain (if you put your fist between and just below your breasts is where the pain was), by the time I was able to see my doctor it was mid May. Given the amount of pain I was in, the fatigue I was feeling and a family history of cancer (including my brother dying that April) he ran a whole battery of tests including blood work, CT scan, colonoscopy, endoscopy it took a couple of months to complete all the tests and one of the scans showed a mass on my pancreas. They did a follow up scan I was told there was a “shadow” on the pancreas and they weren’t going to do anything because they said the pancreas was very sensitive and that they didn’t want to irritate it. I was told that I was okay and basically (they didn’t say it outloud of course) to get on with my life. The pain eventually subsided by October to a liveable place. On New Years I passed a kidney stone, and the next week trid passing a second, which led me to the ER to find that both kidneys had dozens of stones, overthe course of a couple months they shockwaved the kidneys to disolve the stones. During these months my energy level just plummetted. I went from walking about five miles a day to barely getting through the day — my poor dog hasn’t been properly walked in months. At a follow up with the urologist, he said everything was great but I knew it wasn’t so I asked if there was nothing more he could do…he said there was one more test so he sent me to get blood work to check my parathyroid. Well, the parathyroid is icky — I have hyperparathyroidism which led to the endo. The endo sent me for a host of blood work and a scan of the parathyroid and sure enough it has to be removed, but the endo also found that I have high insulin and on two blood works lower blood sugar –he said hypoglycemic, but I thought he was talking to himself. So in a follow up with the endo he starts talkign aobut this mass on my pancreas and wants me to see a gi, I didn’t want to, so he sent me for more blood work. this time the insulin is still high but the blood sugar is 196 — so I’m confused. I basically found this site by googling the things that I knew to be true two weeks ago — high insulin, low blood sugar and mass on the pancreas. I also have fatty liver, high blood pressure, pcos and the aforementioned hyperparathyroidism.
I have felt like hammered poo (it’s descriptive I know) for 16 months, but in hindsight, some of the symptoms have occured over the last 5 years or so. I’m not definitely sure about the insulinoma — the last bood sugar was high, which is not insulinoma.
I’m just grateful to read these stories, my family doesn’t understand. I’m typically a very strong, push through the pain kind of gal, but this is kicking my behind and nobody here gets it — and I think they are tired of hearing about it. When I went on line to read the latest post and to respond my daughter asked “why do you keep reading that?” My husband can’t bear the thought that I’m sick so he ignores it, all the while I can barely make it up the stairs without feeling faint. 16 months ago I’m walking5 miles a day and today the stairs are a challenge — I’m just needing a resolution to all of this.
Thanks so much for listening.
Rhonda,
I’m going to try to make lunch, but I go Friday to meet with a surgeon about the parathyroid so I may be recovering …otherwise, I’ll be there, I will definitely let you know.
Karen,
I definitely had days where I felt “normal” and others where I had very serious and scary symptoms, i.e. losing consciousness. I agree with Peggy that the best way to find out about our experiences and get many of your questions answered is face-to-face at our first insulinoma get-together in L.A. It seems like you are in SoCal already.
Getting people to RSVP has been almost as hard as getting my insulinoma diagnosed… However, I strongly encourage you and your family to attend. We are meeting for lunch on July 18th at 12 noon at C & O Trattoria (www.cotrattoria.com) in Venice Beach.
Please click on the evite link below to RSVP:
http://www.evite.com/app/publicUrl/ZCEETDWMYWOFHXLINJNT/insulinoma
Hey Karen,
Yes, some days were better than others with insulinoma. Actually some months and even years were better than others. I think that is why it took so long for me to be diagnosed. A sure way to tell when you’re feeling poorly is to have some sugar! If you’re feeling better within minutes, you know. (be sure you follow with a complex carb!)
I’m curious where you’re having the blood work done. Seems since the one blood test your endo did already showed low sugar/high insulin that they’d schedule a 72 hour. But if he’s already recommended a GI then maybe you’ll go staight to an EUS. Why did you have the first scan done? I don’t know much about men1 but it seems a 3cm mass is quite large for an insulinoma. You might ask your endo about that when he calls. Also, Ask him how successful a biopsy would be in determining what the mass was. It wasn’t helpful for my insulinoma!(however I did not feel,or remember a thing) If you end up having the 72 hour don’t worry. I have poor veins as well but the test really isn’t terrible (other than having to experience low sugar) and may only be 4 or 5 draws. I’ve had it done 3 times. They usually give you an experienced drawer for this test which makes all the difference.
If you’re not too far and you still haven’t had your questions answered you should come and meet with Pamela (from Texas) and Rhonda on the 18th in L.A! Hopefully I will be there too.
Wow! Thank you all for the quick responses. I spoke with the nurse this morning (unfortunately before reading these responses) they are sending me to re-check the insulin (c peptide?) which has consistently been elevated. 2 weeks ago the number was 5.8 (I’m not sure what that means — nurse said it was elevated). They are also redoing the fasting blood sugar (but only a 12 hour fast). I’m not sure about the rest of you, but do you have some days that are better than others? Yesterday I felt pretty good most of the day. Almost normal energy, I felt “human”. However, this morning just minutes after I woke up I’m just exhausted again.
Tatia I’m in Southern California and I have an HMO so travelling to your hospital is out of the question:)
I’m expecting the dr to call back with a recommendation to a gi for the pancreas — when he calls I’ll ask about scheduling a 72 hour fasting blood glucose. I have to say, I have horrible veins so the idea of someone trying to draw blood every hour or so till it drops seems like a very terrible experience …
Karen,
If you do have an insulinoma and it is the mass located on the tail of your pancreas, you have won half the battle. Finding the devil is one of the hardest things to do. Usually you have the symptoms before they find the mass and you are already having problems. Jackie is right in that the symptoms will continue to become worse, more severe and happen more often. I agree with Laura bout the 72 hr fast that needs to be done. Having the biopsy is a good idea if your tests come back negative for the 72 hr fast because it could mean the mass on your pancreas is something else. The 72 hr test will point you in the right direction and then you can decide to move forward. If it is an insulinoma meeting with a pancreatic surgeon is key. I had surgery in Dec of 2008 in St Louis, my doctor was at Washington University and I highly reccommend them. They cloned the gene for MEN I at Washington University so they know this disorder very well. I do not know where you live but if you are in the Midwest they are worth looking into. My insulinoma was on the tail of my pancreas, it was removed along with the tail end of my pancreas. Keep us posted on how things go.
Tatia
Karen, Insulinomas are almost always non cancerous, so if that is what you have, not doing the biopsy won’t hurt you. Generally speaking the first test they do to diagnose an insulinoma is a 72 hour fast. I would ask your Endo for that. If your sugar continues to fall while you are fasting and they already know there is a mass on your pancreas, sounds like a slam dunk diagnosis to me. Then you would talk to a pancreatic surgeon. good luck!
Laura
My best advice is to follow up on this tumor. If you do have one it will only get worse over time. The symptoms sound so much like what I had and removing the tumor will give you your life back. The fatigue is awful and the hypoglycemic episodes are so dangerous. Mine came more often as time went by. If you do have an insulinoma you do not know when the tumor will secrete insulin. That may be the explanation for lows and highs. I hope you will get with the endo guy and get this taken care of.
Hello All,
I’ve spent yesterday and today reading and re-reading these posts. I suspect that I might have an insulinoma (possibly Men1 as I also have hyperparathyroidism and pcos). I was sent to an endo about 6 weeks ago because of the hyperparathyroidism — he ran some additional blood work and found that my insulin was high and my blood sugar was low. He also found (looking at some tests that had been done a year ago) that I had a 3 cm mass on the tail of my pancreas. I was told when the scans were done last year that the mass was a “shadow” the endo said it is very clearly a mass on the pancreas. He wanted to send me to a gi two weeks ago for a biopsy of the mass, but I argued with him (denial maybe) anyway he ran some more blood work and I have only received one test back — the blood glucose was high! I have never been diagnosed with hypoglycemia (although the endo said I had it) but I did have gestational diabetes with my second pregnancy 16 years ago. About 5 years ago I started having symptoms of how I felt when I had the gestational diabetes — but my sugars always came back in the low/normal range. For 16 months I have had fatigue, weakness, weight gain, for the last two months add heart palpitations, sweats and extreme fatigue.
I am now concerned that I didn’t go directly to the gi for the biopsy. I’ve never posted to a “board” before, and I’m not sure what response I want — but reading your stories are so very familiar — I think my family thinks I’m nuts. Any advice, commentary or anything would be very welcome.
By the way, thank you all for sharing your stories, your histories, struggles and successes. It’s so very reassuring to not be the only person with these very real, very debilitating symptoms.
Hi,
Anne, no worries, I think we all take our turns asking and answering questions. I don’t recall experiencing stomach cramps after the 72 hour test nor did I have difficulty eating. I had nausea and headache during the fast and I remember being surprised at how high my blood sugar was right after eating at the end of my fast. I hope you and your partner have heard the results of the test.
April, you truly are my hero! I’m not certain when you are having your surgery but must thank you profusely for the info you provided regarding the hypoglycemia study in Maryland. I have been in contact with them and my endocrinologist has written a letter that is now on it’s way to Maryland. Here’s hoping that I hear back soon. If there are others that are still awaiting diagnosis, localization, or treatment, I would encourage you to look into it. I am feeling hopeful and that is something I haven’t felt to this degree for a while!
Heidi, thanks for the conversion calculator! It’s easy to use which is a blessing because math was never a strong suit for me.
Now that I have all my reports, I am a little mystified. I was under the impression that insulinoma was confirmed when blood sugars dropped during a fast and insulin levels increased. In examining my blood work, it appears my blood sugar, insulin, and C Peptide were all low during my fast. I’m not sure if my insulin levels and C Peptide levels were subnormal but still considered high in light of fasting or what the case may be. Can someone enlighten me on this?
Take Care.
Sorry to keep on asking questions, but did anyone else have severe stomach cramps after the 72 hour test and find it very difficult to eat anything? Hope did you cope with this?
Hi All,
After 58 hours we have some kind of result. Blood glucose has dropped below the magic 3 so blood has been taken and we await the results. How long does this usually take?
Hi again, Audra,
Canada uses the same as the Europeans, so just fill in your Cdn numbers and it will convert it to the US measurements for you.
Heidi
Hi Audra,
look at this website – I have used this calculator to figure the different numbers to be able to explain Mike’s situation to his non-Canadian relations.
http://diabeticgourmet.com/Tools_and_Calculators/Convert_Sugar_Readings/
Good Luck!
Heidi
Hi April,
Thanks SO MUCH for the info you provided. I’ve already contacted NIH and spoken to my doctor’s receptionist about obtaining copies of my bloodwork reports.
Does anyone know what the blood glucose measure of 45 in the US translates to in Canadian?
I look forward to your help with this one!
Hi Everyone,
Anne, I can share from my experience that I had blood sugar readings greater than 4 during my fast. In fact, I had been told to fast prior to hospital admission and was around 3.2 at the time of admission. I thought it would be a breeze to drop to the 2.7 target but such was not the case. My blood sugar actually climbed for a while (despite fasting). I also assumed that I must not have an insulinoma. But, I reached the 2.7 target after about 27 hours and then rapidly dropped to 1.9. The bloodwork done at that time confirmed insulinoma because my insulin level was continuing to climb. Hopefullly, you and your partner will have your answer and plan of action soon.
Jackie, thanks so much for your compassion. I agree that few people can understand this unless you have been through it. I think there is a perception that if tests are negative “At least they didn’t find something that is terribly wrong.”
April, it’s great that you have a surgical date. Where will you be having surgery? Thanks also for the info relating to the study. That is powerful info and I am certainly going to visit the website.
Take Care.
Heidi,
I also have a son with Asperger’s . This could be a topic for a new blog. He has responded very well to occupational therapy and a really fun social skills group where he meets people like him and feels normal. I have made sure to explain all the details of my insulinoma to him so he knows exactly what is going on. After a new thing I explain it to him and then don’t bring it up again unless he does. He hears me talking about it to others but I am careful to stay on the topic. So many people want to make it worse than it is and talk about pancreatic cancer, complications during surgery, etc. I have been very careful to steer away from those conversations for his sake as well as mine. I am careful to point out that this really isn’t life threatening, just inconvenient and something I have to take care of before it gets worse. Several people I have had to tell that I just don’t talk about it all the time and to read the emails I send out if they have any questions. A few people are just fascinated with others illnesses.
Good luck with your son. I truly believe that these kids are special for a reason and can do great things with the correct nurture and motivation.
April
I am back from Mayo Clinic with a diagnosis and a scheduled date for surgery. The second calcium stimulus test confirmed the problem is in the tail of the pancreas. There were some abnormalities in the way blood drains from my pancreas which made the results from the first test negative. As a result they also want to remove my spleen to avoid problems with internal bleeding later on. So they will remove the tail of my pancreas and my spleen and hopefully my problem will be solved.
I wanted to mention that the National Institute of Health in Washington DC is doing a research study on fasting hypoglycemia that I was referred to by my doctor. I declined the invitation after talking to the doctor there and realized that I would have to spend two weeks in the hospital doing test after test. It however could be a good option for many who are having trouble with a diagnosis. I had to repeat the tests at Mayo Clinic anyway and it took a little over a week to complete everything. All the care at NIH is free, the only expense would be travel to Washington.
My contact there was Craig Cockerman 301-496-6087. You can also look up all the clinical trials at NIH on the web.
Hi Audra,
Thanks for yourthoughts. My parner did secure a bed and is 30 hours into his fast. For the last 24 hours his level (English) has been not moving much – around 4.
is this a likely indicator that he is unlikely to have an insulinoma? In the past his levels have sometimes dipped to between 1 and 2 (not often). if its not this i’m not sure where we go from here. Still awful symptoms but no answers.
Audra, I am so sorry to hear they did not find anything. No one can know what this is like unless they are going through it. I just hope they will listen to you and make a plan on how to help you. I read online that there are instances that it cannot be found and exploratory sugery is used. Not that this is your option but it is something to ask about. It is far better to know the location though because if it is located in the tail of the pancreas the surgery may not be as invasive. My heart goes out to you.
Hi Everyone,
Anne, I hope your partner has secured an appointment for his 72 hour fast.
Heidi, So sorry about your son’s recent diagnosis. I hope there is at least some comfort in knowing so that you can move ahead.
I received word yesterday that my angiographic CT did not reveal my tumor. I was absolutely devastated and didn’t even feel able to visit this site yesterday. Although well meaning, the receptionist who called said “It’s good news, your CT did not show anything.” Little did she know, I had hoped and prayed that the CT would show something. Unfortunately, I have another month’s wait before I see my endocrinologist and the surgeon together. I have no idea what lies ahead as my endo indicated that they would not proceed with surgery unless the tumor was located. I think we’ve run out of options in our health region in terms of diagnostics. Once again, I guess time will tell. My greatest fear is that they will decide that nothing further can/will be done. This is hell!
I wish you all better luck.
Take Care.
Anne,
Where are you in the Midlands? I had my insulinoma removed at Queen Elizabeth Hospital in Birmingham by Mr Mirza. He is very efficient, decisive and clear. He teaches the medics as well as doing a great many ops. Although he does, amongst other things, liver transplants, he had removed 4 insulinomas in 2006 alone; this was the year before I had my op so he will have done more since and before. So I do not think you need to go to London if you don’t wish to. In Birmingham my family and friends could come and see me in hospital. Once your partner gets the results of his fast and this shows the results they need to confirm that indeed he has an insulinoma then ask to be referred to the QE so they can quickly do the tests to locate it. Good luck with it all.
Heidi,
One of my sons is ASD: a high functioning autistic. I’m the person who went through Prince George on major road trip 35 years ago! I do not think there’s a link but I thought I’d mention it again!!!!!! This son found my strange behaviour very difficult to cope with when I was ill. So your son is maybe finding Mike’s illness and recovery difficult. But all turned out OK in the end.
All the best.
Jane
Anne
Dr Drake at Barts is very very good. At least two of us have been looked after by him.
I still see him every year for my check up so its good he hasnt passed me on to a lesser being!!!
Anything you need to know just ask.
regards
Angie
Anne, for the 72 hour fast, I would recommend fasting before, you take him in. That way it should be over quickly…
Finally looks like my partner may be about to have the 72 hour test!
They rang him today to say why hadn’t he turned up for his test. There had been no letter and no phone call. Think the NHS must communicate by crystal ball!
So IF he finally gets it what was it someone said that you must not let them give you before it?
Any more tips?
Finally IF he eventually achieves a diagnosis someone recommended a good doctor at Barts. Who was it? We are actually in the midlands. Is London the best place to go for treatment?
Hi Everyone,
Not had a lot of news for you from our part of the world lately and been focussed on dealing with our son, who is being formally diagnosed with Aspergers Syndrome (part of the Autism Spectrum), so much stress in that regard. The good news from us, is that Mike is doing well, getting out walking daily, feeling much better, and doing more around the house as part of the family again.
3 months out, he still has the drain bag, which is still producing from the abscess, but according to the last scan it is now much smaller. He will probably have another scan at the end of June, but doctors are happy with things as they are. He is definitely cured of the insulinoma, and getting there with the post-surgical complications.
So besides ferrying my son around for his many appointments, I am spending lots of time gardening and walking the dog. It is nice having that for stress relief. We got ourselves a very cute new kitten 4 weeks ago (all grey) and having fun working him into the family.
To those of you who are still in progress with diagnosis and finding your cure, it will come. I was desperate 6 months ago and thought we would never get it found or removed. Now we are 3 months past and despite the challenges we encountered, things are definitely better. Mike has lost over 40 lbs and looks healtier than he has in years. He too has a fascinating scar – shaped like a hockey stick, down from his sternum, but it was worth it.
Take care of yourselves!
Heidi
The crazy thing is you don’t know when the tumor produces insulin. I could go for weeks with no issues and then boom. As time passed it happened more frequently but still not every day. So it makes sense that second test may not have been as definitive. Don’t lose hope. I hope they will do the CT scan as well. But in reading online it can be hard to find. I was fortunate it showed up with the first one. Hang in there.
Hi
In relation to my earlier post about the trial scan doe detecting insulinomas at the Royal Free in London.
PLEASE NOTE: For medico-legal reasons, Dr Caplin could only take referrals which come via a doctor. As this is a study, he would only scan patients with a confirmed biochemical insulinoma i.e. after 72h fast but where the tumour can’t be found.
Dr Caplin has clarified the criteria for participation because he would not want anyone to be disappointed with the expectation that a scan would be given automatically.
All the best
Enola
Jackie, Thank you for replying. This insulinoma is so unpredictable—- went for glucose four hour fastening test yesterday ( second time, second doctor) first time my suger dropped to nineteen after one hour into test yesterday nothing! I had great hopes with this new doctor but now I am so flustrated. I have had all the symptoms for over two years and just like everone else I just want to feel good again,know it takes awhile to get all the test but now I am fearful since the bad test yesterday I may be back to Square one. Thanks to all of you for the great information and please keep it going, I know it helps me to know I am not alone in this. Thanks again Kricket
During my follow up consultation Dr Martyn Caplin who is the lead physician, who runs a research programme into the science of insulinomas as well as clinical trials. He chairs the UK Neuroendocrine Tumour Group and is scientific secretary of the European Neuroendocrine Tumour Group.Dr Caplin is keen to hear from anyone in the UK who have had problems diagnosing their insulinoma. A new scanner is being trialled which is sensitive to detecting insulinomas, it is at the Royal Free Hospital in London.
For more information please contact:
Dr Martyn Caplin
Consultant in gastroenterology and hepatobiliary medicine
Royal Free Hospital
Pond Street
London
NW3 2QG
Kricket, I just saw your postings. I hope you get diagnosed in a speedy manner so you can get back to your life. Mine was diagnosed through a CT scan. I think many are the same. The did fasting sugars and a C peptide as well but it was many the symptoms, low fasting sugar with a high insulin level and a dianostic CT scan. Please keep us posted on your journey.
Only ONE MONTH to go until the first insulinoma get-together on July 18th, 2009! I would like to extend an open invitation to everyone that is a part of this website. Insulinoma is a very rare disease, and this is a unique opportunity to meet others that have gone through similar experiences. It is a chance for people to meet face to face, share stories, and receive support.
We are meeting for lunch at 12 noon at C & O Trattoria (www.cotrattoria.com) in Venice Beach (L.A.). Please bring your family. We have reservations for the outdoor patio.
Please click on the evite link below for details:
http://www.evite.com/app/publicUrl/ZCEETDWMYWOFHXLINJNT/insulinoma
Rhonda
Awesome! I would get behind anything that put all our experiences together. I’m sure it would be a great help to anyone looking for answers in dealing with insulinoma. Only someone who has personally gone through this can give the kind of advice and support that sufferers so desperately need. This site has been priceless to me for the last couple years and I can’t say where I would be today without it. Thank you everyone! But I know what you mean Angie, even now with normal blood sugars I find it difficult to get through all the posts. I love all the interaction though. After reading everyones posts It’s a good feeling to know that any answers I had to contribute are all summed up by other bloggers.
On that note I’d like to say congratulations Jackie on being officially ‘cured’! It is the most freeing experience imaginable other than accepting God’s gift of salvation!
April, God’s speed in getting a confirmed diagnosis. I haven’t heard of anyone else’s tumor being confirmed in that way as of yet. My doctor said it would be inconclusive. But the only way to get to the bottom is to go through all their demands first I guess. Your right though, what a waste of time and money. After going through tests for 15 years, I finally got insistent and found the right technician and the right equipment and it was found on the first CT they took! If you are at Mayo I’m sure they have the experience and top of the line equipment. Just stay positive and patient.
Peggy
To All
Enola Wright, who started an Insulinoma Group on Facebook is interested in producing an “E-Book” with all our experiences and advice. She is interested to know who would be interested to contribute. This will not be on or anything to do with Facebook but a separate Web document.
If you would like to know more contact her through Facebook or I can send messages on to her.
I think it would be really interesting to have a web document like this and many people would be able to access it and find the information we submit. At the moment it is really hard reading through all the posts to find a particular bit of info that I know I have read.
What do you think?
Angie
April, I am orginally from NC so it is good to talk to someone else from there. I have no info about either Mayo or Wake Forest so am no help there. I hope the calcium test is successful and they locate that devil. I know there were others on the site that did a medication therapy but I would think you are still very restrictive and always worrying about the next episode. The surgery is so worth it to be able to get your life back.
I am so happy to announce I am released from the physicians as “cured”. I had an abdominal xray yesterday that showed the last stent is gone and all is well. And only in the past couple of days I have begun to feel totally like myself prior to surgery and prior to having the hypoglycemic episodes. I feel so free. We are walking two miles every day and I can only say to all those waiting, it is worth it. The disease is a nightmare.
My husband and I are in Rochester, Minnesota in search of the elusive insulinoma. Someone asked if I live nearby and the answer is no, we live in Winston Salem, NC. I have been here two days and so far all we have done is repeat tests that I already have had and of course have gotten the exact same results. It was such a waste, both in time and effort. So this has been very frustrating. This is a great example of the waste in our health care system.
However, tomorrow we are scheduled for a calcium stimulation test which I have not had yet so I may get some answers for a change. This test is supposed to tell me what area of the pancreas the insulinoma is in or if it is there at all. After we get the results tomorrow, we may be able to schedule surgery in a couple of days or may go back home and have the surgery done at Wake Forest Baptist Medical Center where there is a surgeon who has some experience with insulinomas.
I still would love to hear from others how surgeries went if you had it a Mayo Clinic and has anyone had success with alternate therapies.
April
Hi Everyone,
I’ve passed another hurdle today as I had my angiographic CT. Now, I await the results. Good grief, I’m not at all okay with the weight I’ve gained (and continue to gain). I’m up a good 15 pounds from where I am comfortable.
Jackie, thanks for sharing your experience. While I am sometimes very mentally clear, there are certainly days I don’t feel competent to be at work. It’s good to know that others have shared this same experience. Aw, bless your daughter for her artistic contribution. I also love your husband’s perspective and it is evidence of his love and support-something we all need so badly!
John, congrats on your clean bill of health following your insulinomectomy (I’m using the term now so I guess that makes it an official word). Here’s hoping your immune system decides you’ve already had enough to contend with.
April, you also would have had a big day with your Mayo Clinic appointment. I hope it went well.
Laura, thanks for sharing your perspective that surgery is worth it.
Heidi, I’ve been thinking about you and Mike and hope that he is still on the road to recovery without any furthe bumps along the way. I spent the weekend playing with my flowers and hope you have had the same opportunity to nourish your soul!
Take Care, All
Marcus I was just reading about your wifes surgery, I am from South Caroline also and I am curious where she had her surgery and where the test were done before surgery. I am seeing a doctor in Georgia and was told that I would probley have to travel a long way for treatment of insulinoma. Have not been told that I have insulinoma for sure yet (pending all the test to document it) but have all the signs. Hate all the hypo attacks and weight gain just to mention a few. Thanks to all for this web site and all the input. I am happy for all that have found relief and or cure from this life altering thing! Hope Mike is totally well and he and Heidi are having better time my prayers are with you both and to anyone that has to live with a insulinoma. Thanks to you all. Kricket
I am just beginning my journey with insulinoma. I have been reading the stories on the web of other people with this crazy problem it has been very helpful so if any of you have any advice on doctors, food and how to hurry this processs along I would love to hear from you
Laura, my daughter just used a sharpie to draw a centipede on my scar. I guess I am beginning to get more comfortable with it. My husband says it is beautiful to him because it is the badge of my health. It is an adjustment.
Hi Everyone
I have been reading all your posts over the last few months while waiting for surgery on an insulinoma and have found them both informative and encouraging (most anyway). Waiting for diagnosis or surgery can be extremely worrying so I thought I would add my experience as a possible encouragement to others.
I am a 55 year old male living in the east of England. My symptoms began early in 2008 with extreme night sweats, episodes of confusion in the mornings and a couple of dangerous experiences whilst driving. My GP thought that the problem could be some form of epilepsy and made an appointment for me at the local hospital neurology department. However, the morning confusions were becoming more frequent and severe, so he arranged for me to be admitted to hospital for tests. I realise that I have had a lot of lucky breaks over the last year. The first was when my wife insisted that I did not have anything to eat before going to the hospital. As a result my blood sugar went so low that I actually had a bit of a seizure and flipped out on the bed in front of the doctor. I thought I was being abducted by aliens! When they checked my blood-sugar it was 1.7. I was immediately put on a glucose drip and returned to normal after about ten minutes. Lucky break two was that the consultant had experience of insulinomas and suspected immediately that this was another. I underwent a series of tests at the hospital which included an MRI scan, CT scan and a 72 hour fast. Whilst the scans were not conclusive the fast most certainly was. My blood-sugar dropped below 1.9 after about nine hours. Having confirmed my insulinoma the local hospital referred me to the endocrinology dept at Barts Hospital in London.
Further tests at Barts included calcium stimulation catheterisation, Octreotide scan, endoscopic ultrasound and another CT scan. The original MRI and CT scans were also reviewed and it was agreed that there was an insulinoma at the tail end of the pancreas. However, the results of the calcium test seemed to indicate a problem in the head of the pancreas. In the end it would be down to the skill of the surgeon. I was again very lucky in that the surgeon who performed the operation was very experienced and has carried out over forty insulinoma procedures.
I had surgery on the 2nd June and thankfully the surgeon was able to remove the insulinoma (about the size of a large pea) without having to remove any other organs. Following twenty four hours in the High Dependency Unit I was moved to the surgical ward. Although painful and uncomfortable for the first few days, recovery has been very quick and I came home six days after surgery. I feel great, my blood sugar is almost back to normal and I have lost almost all the weight I gained while taking the diazoxide tablets. No more swollen ankles and feet.
I know it is difficult to get a diagnosis for insulinomas and whether or not to have what could be major surgery is not an easy decision. I have always been fit and active and the insulinoma put a stop to all that. I was taking the maximum dose of diazoxide and realised that if I was going to get my life back I would have to have the surgery. I have been very lucky and am very grateful for the excellent care I have received from both the local and London hospitals.
Best wishes to all.
David
Laura, I love the beautiful conversation piece right down the middle of your abdomin. Boy, have I had a hard time with that one. You have made me laugh…..
April, where do you live? Close to Mayo?
Hi April and welcome! I have read great things about Mayo and I am pretty sure there is at least one person on the site who had their surgery there so I would say you are in very good hands. I would guess the reason they want to repeat the tests is the tests are only as good as the equipment they are done on. Assuming they have the best equipment at Mayo, it only makes sense. the more info they have before the surgery, the better you can plan and they can plan.
There really are no alternate courses of treatment for this, but I can tell you one thing, if you have an insulinoma, your symptoms will just continue to get worse and worse. Eventually you may even develop what I had which they called hypoglycemic unawareness which means you can be very, very low and not even know it. I frequently drove cars and was alone with my kids when my sugar levels so low, one time I was even under 30! Most people are in a coma at that point. I know the surgery sounds awful, it is not fun, but the upside is a normal life where you are not a danger to yourself or others and it is so worth it! Plus you get the beautiful conversation piece right down the middle of your abdomin… Good luck, one thing everyone on this sight agrees with is the surgery as bad as it is is definately worth it for the end result!
I want to share with you all my experience today, when I had my annual appointment with my coeliac disease specialist, five years post-diagnosis.
He had, of course, been fully briefed on my insulinoma and the successful surgery in January and the post-operative abscess etc , the insulinoma removed with deep but not triple/Whipple triad surgery. I asked him about the possible outcomes for coeliacs if they have the full Whipple and lose their duodenum – the bit that is damaged by coeliac disease. He could not give any answer to that, there being no published research on it, insulinoma being too rare. But what he said was – you get one auto-immune disease (eg coeliac) and should expect another to come along (eg. insulinoma) and/or another and another…
I shall be watching for new symptoms!
Meanwhile, I must tell you all that, apart from some hypertension which is going to be dealt with – and which is allegedly so common anyway with 60-year olds – my insulinomectomy (if such a word exists) is absolutely successful. Any of you suffering in that post-op state, or nervous pre-op, or still fighting for diagnosis and worried and tired and confused and putting on weight, or being shoved about while your symptoms vacillate of worsen – all of it is so worthwhile! It will get better. Insist – insist – inquire and insist again.
The outcome is so much better than the horribly enfeebling, frightening and confusing symptoms…
Love and warmest good wishes to all
John in London
Audra, I forgot to add I felt exhausted throughout the whole process whether my glucose was normal or not. And it was an effort to think clearly.
Audra, I had weeks of normal sugars between episodes. But as time passed the episodes became more frequent and more severe. Because there were periods when I did not have symptoms it delayed my seeking help or it confused what we thought was going on. I was put on hyperglycemics at first because my fasting sugars were high. That was when it all started over a year ago. Also I was coming off of Effexor for hot flashes and we thought that was causing it. But in the end the symptoms demanded more investigation and the tumor was found. Hope this helps.
Hi All,
Much to my surprise, I’ve been experiencing some normal blood sugars for no apparent reason. Perhaps I’ve had some kind of spontaneous healing?! I just tested two hours following a meal and I’m an astonishing 5.1. I am totally blown away. I believe I tested 4.2 yesterday morning. Has anyone else experienced periods of normalcy for no apparent reason? I can’t help but notice that I continue to feel exhausted despite having some normal blood sugar readings.