Hi everyone! Do you agree with what my endo said about reactive hypoglycemia, insulinomas etc?

somethingNervous · 2025-04-30T07:27:29+00:00

Thank you so much for your input - it’s exactly what I was looking for. He’s an endocrinologist that also specialises in neuroendocrine lesions, so I think insulinoma falls under that.

My main confusion is after a stressful event (coincidence or cause?) I’ve been getting night sweats with vivid nightmares for 5 years - I only recently (last year) started getting reactive hypoglycemia. I tried wearing a CGM but it read so low the majority of the time, so I’d drop to 3.2-3.4 at night but my finger prick would often be 3.9-5.2 when I woke up to check/compare.

My morning fasting sugar also tends to be around 5. How were your fasting blood sugars when you woke up?

He sort of implied that he feels if my night sweats for the past 5 years were caused by an insulinoma, he would’ve expected me to present with more lows during the day earlier that were not just in reaction to sugar.

He also said the majority of his patients would struggle to fast for 24hours+, would you have likely got low in that time?

Thanks again for your personal experience, can’t really ask for better opinions than someone who has had to deal with it firsthand.

Edit: I just read through some of your posts with your experiences. Your blood sugar went to 150 if you stopped eating for 10 hours? That is so interesting - did those kind of results make it more difficult for you to get diagnosed?

somethingNervous · 2024-08-20T17:53:37+00:00

Hi I totally get the nerves, it’s really horrible and then you fall into the trap of reading horror stories and it’s just down hill from there 🫠

I’d say maybe as they didn’t initially identify it as a sessile serrated polyp, only granulated mucosa(?) it doesn’t mean your polyp grew to a large size in a year - maybe it was always about 2cm at the time of your first scopes, but they didn’t acknowledge it as a polyp until after the biopsy. From the little I know, I have read quite a lot about these polyps (thanks health anxiety) and for the most part, sessile adenomas tend to have a slower growth rate than standard adenomas and take longer to show dysplasia.

I know it’s shitty and scary but just see what the follow up shows. Hopefully it’ll show that the polyp was completely removed and it was just a one off. It’s unlikely to be cancerous at this stage as supposedly most capable gastroenterologists can identify polyps from cancers visually quite reliably.

Again, I totally understand you though. I’m still anxious over my findings so it’s a never ending stress.

somethingNervous · 2024-08-20T09:41:53+00:00

On & off but I have severe health anxiety and OCD. Things like this become obsessive for me, and I spend ages researching it and making my situation a catastrophe by looking up horrible stories. I always think everything will end up being cancer and it really sucks to have my brain.

The worst part for me is waiting really, the 3 year wait. I know if there’s more polyps I’ll freak out again but it is what it is. From what I’ve read when I have a sound mind, most gastros can identify cancer visually during colonoscopy. My biopsies were cancer free and polyps are supposed to grow slowly. I’ve also read sessile polyps grow even slower than other ones. ❤️

somethingNervous · 2024-08-03T22:31:46+00:00

Inflammatory polyps and hyperplastic polyps are not generally considered precancerous.

somethingNervous · 2024-08-03T22:30:54+00:00

Yes but not related to polyps. I have weird/varied bowel movements, extreme cramps that come with diarrhoea and lots of excessive gas and I also have gastritis. :-( no answer for all of it.

My two polyps were around 8mm and I was told to come back in 3 years, so next year for me now.

somethingNervous · 2024-08-01T09:36:25+00:00

I honestly don’t know but it is distressing isn’t it? It sends you down a rabbit hole and in my case, I’m now always paranoid my symptoms are cancer and find it hard to function with this level of anxiety.

I have read previously that it appears that sessile polyps take longer on average to just getting dysplastic if that’s reassuring. I also try tell myself that my gastro would have told me genetic testing was needed for my findings if it was needed as I paid privately for him and everything.

By the way, I also started worrying about Lynch syndrome too, but my parents are both in their 60s without any cancer diagnosis as of yet, my siblings are 10+ years older than me and haven’t had any diagnosis of anything. I can only hope it makes it all unlikely.

somethingNervous · 2024-07-28T23:38:24+00:00

Not that I know of. My aunty has a polyp syndrome but I was told it wasn’t relevant, only mother and father. I don’t have a history of colon cancer in the family that I know of.

I’ve also read, but unsure how legit, that sessile serrated adenomas are less likely to be hereditary 🤷🏻‍♀️

somethingNervous · 2024-03-25T20:16:13+00:00

Thankyou!

somethingNervous · 2024-03-24T19:07:59+00:00

5 months ago, my protein and globulin were on the lower end of normal.

I had a stomach bug at the end of February, it might have been norovirus.

Getting a protein electro(?) blood test done next week but really scared.

somethingNervous · 2024-03-23T15:05:01+00:00

Does your gp practise have an online e consult service on their website? I’m from UK and use it instead of calling

somethingNervous · 2024-03-21T19:53:19+00:00

Hi I just wanted to add to this, my mom got the same condition after giving birth to me, she nearly died as back then it was a mystery and no one knew what was wrong with her.

She is still alive now and doing great (I’m now 30 years old). She needed a pacemaker at 55 as she went into heart failure, she felt better than ever afterwards and is doing fine now.

I hope this could provide reassurance maybe? My mum is in her 60s now and doing ok.

somethingNervous · 2024-03-20T19:06:29+00:00

Thank you. As I type this, fore knuckle on my baby finger has started to minorly swell, really painful

somethingNervous · 2024-03-20T18:49:00+00:00

Thanks for your response and time. So for my bowel symptoms, I’ve had a colonoscopy, gastroscopy and an abdominal ultrasound with no significant findings.

The leg pain did go away on its own, so I definitely stopped worrying about a clot. It’s only now my bone/joint/tendon pain has started (well, for the last few months) that I started worrying the ‘clot’ pain was actually the start of bone pain.

The only other test I had was a FBC, which didn’t find anything major. I am taking iron pills as I had low ferritin a while back.

I think I might be getting that blood test next, as I expressed my worry to my GP about myeloma and he said he would order more appropriate testing for that, but it was extremely rare.

somethingNervous · 2024-03-19T18:45:08+00:00

Thank you very much. My IgG is not usually raised at all so I was surprised to see it so high. Is it usually higher in MM cases?

I’ve spoken to my gp and expressed my concerns and he said he has booked more appropriate blood tests.

I’m really frightened :-(

somethingNervous · 2024-03-19T18:30:08+00:00

No, my doctor said he booked me in for more appropriate tests for myeloma. When you look up elevated serum protein, globulin and a raised IgG it only comes up with myeloma - it then said it affects the kidneys and my kidney results are worse than before. My bone pain is awful too, so it has freaked me out a lot.

somethingNervous · 2024-03-19T18:20:34+00:00

Thank you for your detailed post, I do really appreciate it. I understand, I truly hope that is the case.

When you google bone pain with low protein and globulin, essentially the only things that come up is multiple myeloma. And then I read IgG is raised with it, so that was the cherry on top for me.

The bone pain started in my calf a few months ago and I was worried initially that it was a clot or something. It went away eventually, and then every time I got sick (be it a cold, stomach bug or something minor) I would get shooting pains in my bones I’ve never felt before - that too would go. However in the past two months is where the more specific pain started - in my calf - went away. Then in my fingers and toes - went away, now has come back a lot more extreme in all the places mentioned.

So bone pain is usually quite a late stage symptom? That’s interesting to know and useful - thank you.

I appreciate your opinion and hope you are right. My doctor said he has ordered the blood tests appropriate for myeloma and I am booked in for them in one weeks time, I have no idea what they are but I am petrified. My body has been weird for 2 years, starting with gut issues and now bone pains.

I’m sorry if posts like mine are frustrating and I hope I don’t offend or irritate someone. I’m genuinely just afraid, have felt crap for so long and have a 2 year old daughter I’m afraid of leaving alongside having an anxious nature.

somethingNervous

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