Hi, just wondering do you guys have any experience with this? I have an under active thyroid and during the recent review I stated that I was also having mouth sores. Anyway, after the blood test, I was told I had low b12. So, I was sent for another blood test and stool sample and have now been told I need to have an edoscopy and possibly a colonoscopy.
I’m 34 years of age, and my anxiety has gone through the roof. He did not, put me at ease in anyway, and now I’m afraid there looking for cancer.
Ask them why you're having the two procedures. It's stupid letting you worry in that way.
A gastroscopy is often advised because having PA causes low stomach acid. And low stomach acid causes high levels of gastrin. And high levels of gastrin stimulates the growth of cells in the stomach wall. And rarely, very rarely, that growth can go wrong.
The result in a Neuroendocrine Tumour, or NET.
Gastric NETs are very rare. A paper written by the doctor looking after money (yes, I have them) says that the incidence is about 0.2 in 100,000 people and most of them have PA. Yes, having PA makes you more likely to have them. But it's still less than one in 100,000!
So they may be looking to see if you have a NET in your stomach. Unlikely as that is.
Gastric NETs can grow into proper cancer. Very, very rarely. The treatment for mine is no treatment at all. They give me a gastroscopy once a year just to check that they're still sitting there doing nothing. And that's exactly what they've been doing for five years.
So don't worry if they say the gastroscopy is to check for stomach cancer. It's incredibly unlikely,
No , thats not a method used to diagnose P.A. The test used is called the Intrinsic Factor Antibody test . But unfortunately it often comes up negative in about 50 % of Pernicious Anaemia patients . . It can take several tests to come up positive. So its not a good test at all , as the antibodies are not always discernible. A good doctor will diagnose P.. A. by the patient’s symptoms if the test is negative , as he/she should know that its not a conclusive test . Unfortunately this is not often the case .
If, during the gastroscopy, they find gastric atrophy, limited to certain areas of the stomach (the fundus and corpus) as well as metaplasia (intestinal cells growing in the stomach) then you almost certainly have autoimmune metaplastic gastric atrophy (AMGA).
AMGA is the underlying cause of PA. If you have AMGA and low B12 then you almost certainly have PA.
The reason for endoscopy could simply be to check for signs that might signal malabsorption that might lead to low b12. That sounds eminently sensible to me and the judgement of a thorough doctor! You say a possible colonoscopy - so it is unclear whether this is planned or not. Perhaps you need to clarify this. But no I don't think you need to worry at all about this...
Thanks for your reply’s guys, you’ve helped ease my mind a small bit, normally I wouldn’t mind about these things it’s just the doctor has made it urgent and will be within the next 2 weeks. I just hope it’s not the big C that they are looking for
A two week referral is indicated for suspected cancers. Your doctor should be clear with you why they are making that referral, it is not fair to leave you in the dark. They are extremely cautious and do over refer down this route but ask until you get an answer
I had both done in 2018 in one appointment: a colonoscopy and gastroscopy.
The reasons given in the report later were chronic diarrhoea and vitamin deficiencies respectively. I had been found by then to have B12 deficiency, be low in ferritin and folate, and prescribed vitamin D for osteoporosis of the spine.
Gastroscopy findings: flattened mucosal pattern in the duodenum and patchy gastric metaplasia noted. Coeliac disease was ruled out by biopsies.
(Coeliac disease: perhaps this is the C-word your GP is considering ?)
Nothing in colonoscopy beyond internal haemorrhoids.
I'd had a colonoscopy before:
In 2015, when I first got ill, I was put on a 2-week pathway. The GP explained that, while she did not think that I had cancer, certain key words or phrases that I had used to explain my complaint had triggered the use of this pathway by the computer system set-up.
Best to start checking from "worst case" elimination. Two polyps were found and removed. Biopsies done. No cancer and nothing else found- and so, with cancer ruled out as a possibility, the GP could then look elsewhere for a diagnosis.
I'm still waiting for that diagnosis, by the way.
I think your GP is being thorough and is working through an elimination process.
PS: None of the above procedures were painful. The drugs were quite strong , especially the second time when both procedures done, so time flew. Worth having done.
Thanks for all your reply’s, I’ll let you guys know how it goes. Cheers x
So I recieved my referral letter today, it’s to the rapid access upper GI Cancer gastro.Called up today to get an appointment booked and there are none available, was told to call back in 10 days to book an appointment. I’m now very worried. I just can’t understand why I’m going to cancer. The doctor told me my bloods are normal bar my vitamin b12 which is low. I’m expecting a call from my gp on Monday to see where we go in terms of appointments availability, what kind of questions should I be asking him.
Just say what you are worried about. It’s difficult but if you ask a straight question it is harder for them to fudge the answer which lots of doctors do, perhaps believing they are protecting you, but you are worrying anyway. In my experience of being on cancer pathways nothing they say will reassure you until you get a final result but if you want to know why they have referred you in this way be very direct and ask what exactly prompted them to go down the rapid access route. Be prepared for your anxieties to be raised, it’s not easy hearing it said out loud, even if it is already in your head. Personally I like to know what I’m dealing with and why from the outset. Not everyone does, but the nhs is pretty good at supporting people through serious acute illness pathways. Try not to drive yourself crazy, waiting is awful, so distract yourself in the meantime and don’t go googling all the potential outcomes. I had all the symptoms of ovarian cancer and spent a deeply terrifying few weeks having tests and waiting for results and I did google obsessively and rollercoastered between best and worst case scenarios. All ok in the end but I could have made it easier on myself. Very best of luck let us know how you get on.
You are going to a cancer specialist because your doctor has read that having Pernicious Anaemia (the most likely explanation for a non-dietary B12 deficiency) means you are more likely to have stomach cancer. And that is correct. But it doesn't mean that you are likely to have stomach cancer.
But it's not a cause for concern.
Having Pernicious Anaemia (as I explained above) does make you more likely to suffer from Neuroendocrine Tumours. But the chances of you actually having them are still about 1 in 100,000.
Your doctor is just being careful, and sensible.
Even if you do have Neuroendocrine Tumours, it's nothing much to worry about. When mine were diagnosed my gastroenterologist described them as 'indolent'. They tend to just sit there and do nothing. That's what mine have been doing for at least five years.
So your gastroscopy will be to look for signs of a rare type of cancer that you almost certainly don't have and that is pretty harmless if you do have it.
Think of it as being like a prostate exam, but far less likely to find anything, and far less likely to be nasty if something is found.
Thanks for your replies, so from what I’ve been told by a nurse who works there, is that due to covid, doctors are putting patients through as urgent as there are no appointments otherwise. This makes me feel a little better. Since the initial conversation with the gp my stomach has been very delicate, I think it could be anxiety.
I’ll have to speak to my gp on Monday and hopefully get the right answers, I never even went to the gp in the first place with any problems just my regular thyroid test.
I mentioned a sore tongue and ulcers, and that’s how he found the b12 being low. They have asked for 2 stool samples so maybe that showed something else.
I hope I’m just being a hypercondriac, I’m a shaking mess at the moment with nervousness. Thanks for the reply’s guys, it’s amazing how helpful these groups can be
So, I spoke with GP again today and he has said that he put me on the urgent referral just to be seen quicker as I wouldn’t get an appointment for 6 months on a normal referral due to covid. He explained that my b12 level is 100, And I have raised calprotectin? He’s sent me for further blood tests and another stool sample, that’s 3 of each in 10 days. I also recieved a letter from the hospital to say they don’t feel I need the urgent referral based on the information provided. A consultant will be calling on Wednesday to have a talk with me. To be honest I don’t think the letter was for me, as it’s addressed to my doctor, it has my address too, but just wonder if they sent it to my address by accident.
It's standard practice for consultants to cc: letters to a GP to the patient, because some GPs aren't very good at keeping their patients informed.
I agree with the consultant that the upper GI tract examination (the gastroscopy) isn't at all urgent. As I said before, it would be looking for a very rare cancer that isn't nasty. As such, it could wait a year or two.
I know little about IBD.
So, I had the phone call from the consultant today, he has said they will give me a colonoscopy and a endoscopy as well as a ct scan, also said that I will need b12 injections, he said it will all happen quite quickly. It’s all very worrying and has really opened my eyes to what people go through everyday. I’ve never been so scared.
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