I saw the gastro today who was as helpful as every other consultant I have seen telling me that a b12 level of 197 (normal range over 200) "wasn't a deficiency" (despite saying my iron was low when in proportion it is higher in ref ranges than my b12?!) and had no answer to the fact my symptoms all improved on b12 injections (other than seeming to imply I am imagining it all in my head) and have come back since stopping but was still concerned by my problems and so has put me on for a small bowel mri and an endoscopy. Both of these things terrify me and I am in particular absolutely terrified of the endoscopy but I am aware that if it shows signs of atrophy it might help my cause for a diagnosis (though they seem adamant my levels are fine). Thing is I have seen on here that endoscopy hasn't always shown signs of damage for people with PA and as I am only 22 and b12 problems begun fairly recently I am worried it won't show anything and will just be a panic inducing operation for nothing. He also said that he will biopsy the small bowel and take a few from the stomach which makes me a bit nervous as am I correct that PA only affects the upper portion of the stomach and that the stomach is where the biopsy should be focused? I am ordering b12 for self inejction to hopefully improve again in the run up to the endoscopy in 6ish weeks but I am so nervous about going through with it in particular if it isn't conclusive? Thanks again for all the help on this lifeline of a forum.
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liaratsoni
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The gastroscopy is unpleasant, that's all. I've had half a dozen, or thereabouts.
You will be given the option of having a local anaesthetic spray for the back of your throat, or you can be sedated. If you go for sedation then you'll need somebody to take you home. I always go for the spray.
If you've ever done any meditation or relaxation classes then that can help a lot. On my third gastroscopy I was lying there with the tube in my stomach when another doctor came in and started gossiping with my gastro. The gossip assumed I was sedated because I was so relaxed with a slow heartbeat.
The worst part is when the tube goes down your throat. You will have plastic bit between your teeth with a hole for the tube. You will gag when it first goes in. And that's the most unpleasant bit over.
The doc will look around the stomach and take some photos, probably under different types of light. The will take small tissue samples which you cannot feel at all. Then he'll manoeuvre the camera into your duodenum. Again, I didn't feel a thing. He'll have a look in there and take some more tissue samples. These will be to look for signs of coeliacs disease.
Then there's a brief moment of unpleasantness as the tube comes out and you're done.
If you have PA then you will have signs of the underlying cause - metaplastic gastric atrophy. The camera will show if there's any atrophy, the biopsy samples will show metaplasia, if present. If you do have atrophy restricted to the top parts of the stomach, plus metaplasia, then you have PA. I would also ask for a gastrin test. High levels of this are also a good indicator.
The MRI will be a doddle. Just remove all metal and lie down for 20 minutes.
If you do have PA then a gastroscopy is a good idea as it increases the chance of tumours (called Neuroendocrine Tumours - NETs). But it's a very small chance. NETs are the reason I have a regular gastroscopy. Five years now, and they still haven't changed since they were found.
Talking of which - don't panic if they find a polyp. They are fairly common and nearly always harmless. They'll probably book you in to have it removed at a later date though.
Thank you so much for the detailed response! I will definitely ask for gastrin as I didn't know I could request that and it's good to know it will diagnose if I do have PA. Thank you for outlining the procedure too it helps to see it laid out.
I have had a gastroscopy (1st) and colonoscopy (2nd) on the same day - and honestly did not feel much at all as I was quite out of it: midazolam and fentanyl. Time passed quickly in a bit of a haze.
Was told after procedure that I had "flattened mucosal pattern in duodenum D1 and D2" - and told me it was possible that I had Coeliac disease, and the biopsies would prove this either way. This was later excluded by testing biopsies. "Patchy gastric metaplasia" was noted in the report. This has never been explained. People with Pernicious Anaemia would expect to have this result however. I haven't got a PA diagnosis.
The previous colonoscopy was also okay: 2 polyps removed - watched it being done on camera- really couldn't feel it. It was like watching someone else having it done. Same with the biopsies. Polyps were harmless.
I ensured that no nitrous oxide would be used as this can deplete your B12.
They were fine with that. Everything was explained to me and people calm, friendly.
I've never worried about MRI scans - and I've had a few now - the worst thing is trying to hear the instructions over all the noise (MRI scanner warming up) ! The noise never bothers me either because I imagine it to be whale-song, although it's really nothing like it. You can take music with you sometimes.
I was lucky : my B12 level was 196ng/L and the range from local laboratory was 197ng/L- 771 ng/L, so I was treated as deficient. No-one can say what your B12 normal level is/was unless you were tested when perfectly healthy - which of course wouldn't happen.
So it might as easily have been 771 ng/L: do you see what I mean ?
Try not to worry. These procedures might well give you some answers.
I too am very wary of procedures. I am wondering if B12 injections would solve your issues? If so would it be easier to not go through all that to get a diagnosis and treat yourself?
I hit wall upon wall with Doctors and Consultants, all of whom think I am as mad as a box of frogs. It used to really unnerve and concern me. My education has now caught up with my gut instinct thank God.
You are not making this up. Your body is talking to you and you are listening
I have ordered supplies for self injecting as I experienced an improvement in all symptoms after finishing my loading doses but 2 weeks after last injection I was fading again and at 3 weeks I'm back to sqaure one and my next dose isn't until last week of september so no idea what state I'd be in if I waited until then! Thank you
Conclusive or otherwise I cannot comment upon but I can say I don’t see anything to terrified about endoscopy at all. I have had 4 gastroscopies and never had sedation. It has been a little uncomfortable at the beginning but in the hands of a expert practitioner it is down your throat before you realise it. Just keep taking deep breaths and you will be fine. There is no sensation al all about biopsies and it is over before you realise it. The last one was actually done by an internationally famous Professor who I would have sainted if I could. He decided I would be interested in what was going on and wanted me conscious as he wanted to get me to do things during his examination. At one point he brought the monitor over to by my face so I could see what he had found. It was my facial expression that one of his colleagues interpreted as ‘stop messing about and get that thing out of me’.
They did ask me if I would join their volunteers panel to have the students practice on me every month or so. That was going a bit too far.
The very worst examination out of the whole lot was being given a barium swallow whilst strapped spreadeagled to a huge wheel the rotated to all points of the circle and told repeatedly not to burp, swallow or vomit as then they would have to start all over again. Guess what I desperately wanted to do!! It felt as if it was going on, backwards and forwards for an age.
The overnight stomach acidity monitor was another bad one as there was a stiff wire coming out of my nose to a recorder on a belt around my waist. Every time I swallowed the wire gave my nose an irritating tug and rolling over in bed was a very bad idea.
After those MRI and CAT scans were just an excuse to lie down and not move.
They are all expensive procedures so they wouldn’t be doing them if they didn’t think they would give valuable results. They are taking your problem seriously so be pleased they are.
Best wishes for a successful course of studies and an appropriate treatment to follow.
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