Hi HJ1, and thank you for posting,

I am sorry to learn of your situation, it can be a stressful and difficult time waiting for a diagnosis.

If you are concerned about the pain, especially as it is persisting I would let the consultant know. The pain may be a separate issue and not connected to the possible insulinoma, but it is best to be on the safe side and get it checked. They may be aware of this as well but it is worth letting them know there has been no change, that the lymph node remains swollen.

I hope this helps, please feel free to get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Take care, all the best

Jemma

Good morning , sorry you are going through this ,I am hoping you now have had the test and that everything is ok . 
I also am getting tested and waiting as I was having non diabetic hypos , racing heart and shaky (not all the time but too often ,especially after doing anything ie gardening or walking fast ) It’s so scary as I can’t find anyone else that’s gone through it as it’s so rare . Also like you I have pain underneath my ribs through to the back ( I do have sphincter of oddi so I’m hoping it’s that rather  than cancer .Sending you best wishes . 

I’m sorry to hear you’re going thought this too - it’s quite difficult to manage the symptoms so I empathise with you.

I was admitted to hospital after a serious hypo and we’ve done the scan and 72 hour fast. My blood sugar went very low in the fast but the scan doesn’t show an insulinoma - it looks like it’s my whole pancreas that’s causing the problem rather than a tumor. So, most likely not a tumor but presenting in exactly the same way as an insulinoma with the same symptoms.

It is difficult to find people who experience this so this chat-space is really good. I hope you don’t have to wait to long to be tested and get the results - it’s such a difficult time, the waiting. Take good care of yourself while you’re waiting.

Sending best wishes back to you.

 I hope they can get to the bottom of your problem  quickly ..sometimes a diagnosis can be a relief rather than still not knowing what is wrong . I’m glad that it isn’t a tumour for you. 
I had a scan 8 months ago and I have 2 small cysts on my pancreas , but drs said they were only tiny .. then months later i had a few episodes of shaking and hunger pains and blood sugar of LO on monitor .. then after food  1.3 .Was the fasting test very difficult for you if you don’t mind me asking . I get terrible stomach ache if I don’t eat ( the gnawing pain is awful ) so I am dreading it . I will let you know when I have it done . It is nice to chat with someone who knows a bit  about insulinoma .. most drs say they dont know understand it as it’s a specialist field . 
Thank you for replying  

I was terrified of the fasting test too because of the hunger, but it wasn’t as bad as I thought it would be. I also suffer from extreme hunger, but I didn’t get any hunger pangs after about 8 hours.

I lasted the full 72 hours and my blood sugar was just above the threshold to stop the test. They really monitor you closely - they reassured me that if they thought my blood sugar was too low amd hypo symptoms too bad then they would stop the test, so they’ll keep you safe. And they have dextrose solution on hand and put a canula in before they start the test so they can administer it nice and quickly if they need to.

One thing to bear in mind is that most insulinomas will make their presence known in the first 24 hours so you may not have to fast for the full 72.

It’s not the best experience, but it is the gold standard for diagnosing insulinoma: from the way it was explained to me at the time, if your blood sugar drops into the required range then it’s very likely you have an insulinoma.

That is  very reassuring  thank you . 
The pancreas is a very sensitive organ. I began having pains In My stomach in 2022 ,6 months later I was diagnosed with gallstone. They removed them but within a week I had the same severe  stomach pain and eventually was diagnosed with sphincter of Oddi dysfunction . They said that was rare and I’m struggling to control that , although thankfully the pain isn’t constant and I do get just random attacks . 
As you probably are the  same and understand how difficult it can be ,no one can see but pain &  exhaustion is terrible . I also read 90 % are non cancerous which is again reassuring.If it’s not insulinoma i  just want some answers how to feel better again and get on enjoying life . Again thank you for taking the time to chat .

I also find the exhaustion and the management very difficult - it’s very difficult to explain to other people how much it can affect your daily life.

I also found the 90% non-cancerous statistic reassuring when an insulinoma was a possibility.

Once they’ve done the fast and got the data the need, they may be able to use medication to take some of the pressure of your body systems - once I started on medication to keep my blood sugar in a more normal range, I did find that many of my body pains got much better.

I’ll keep my fingers crossed for you; take care. 

Hi there . How are you doing ? 
Thank you for all the help and yes I had my 72 hour fast .Like you the hunger went away , my blood sugar dropped  to 24 and they took the bloods . (They didnt put me a cannula in  I’m glad  my  vein behaved ) 1 hour after the nurse came back  and my blood was 2.2 . I then said I wanted to end the fast  63 hours . The nurse came back and said drs said to end it . I was given an apple juice and c of tea . Then an hour later breakfast came round and I had toast and a banana ! Best meal ever haha . I felt very shaky headache and sick but it’s over now .  I’m been referred for scans and was offered diaoxide which I didn’t want yet , and a glucose monitor  for my arm to connect to my phone (Libra ) 

I hope you are keeping well and your pain isn’t too bad . Take care 

Hi - sorry it’s taken so long to get back to you.

Glad you’ve had the fast; it sounds like they’re very close to pinning it down and identifying it. Great news also that they’ve given you a libre - I also use them at the moment and they are very useful. Hopefully the scans will come around quickly for you and they can move towards a solution.

My situation is under better control at the moment; I’m still waiting for my next appointment as a follow-up from my fast and the results. I’ve done my own research based on the values they measured in the hospital so I know that my pancreas is doing something pretty troublesome.

Keep well - let me know how you’re getting on.

Hi , no need to apologise for late reply ,i understand. I am glad your situation is more under control and I hope you get answers soon . It’s not knowing that’s so difficult. I will let you.know any updates on scans etc . The pancreas is a sensitive organ and is painful when there is problems . I hope your pain is minimal please ,let me know how you get on also …Take care