endoscopy

[brenanddave]

Hi guys! Well I got my endoscopy results back last week and everything looked good they tested MICROSCOPIC DESCRIPTION:

1, 2) Sections show fragments of duodenal mucosa. The crypt-villous

ratios are normal. The surface epithelium has no significant lymphocytic

infiltrate. The lamina propria contains a normal complement of chronic

inflammatory cells. There is no active inflammation, erosion or

ulceration. No Giardia-like organisms are identified. There is no

dysplasia or malignancy.

3, 4) Sections show gastric antral and body type mucosa. The architecture

is normal. No significant inflammation is seen. Erosion and ulceration

are absent. There is no gland atrophy, intestinal metaplasia, dysplasia

or malignancy. No Helicobacter-like organisms are identified.

DIAGNOSIS:

1, 2) DUODENUM D2, D1 - NORMAL

3, 4) GASTRIC ANTRUM, BODY - NORMAL

What does this mean? They seemed to think I should just not worry now and that because my b12 levels are high also (but that is because I am injecting daily) That I am fine and can go to 8 weekly b12 I have extensive nerve damage and pain but that does not seem to mean anything to them Has anyone else had an endoscopy result like this when they were expecting to see some sign of the affect of PA? I am happy that there is no sign of cancer or celliacs or h Pyloris but feel it hasn't given me clear answers to why I am going through what I am aaahh!!

[brenanddave]

would the fact I have been taking omeprozole and b12 in high doses kept my stomache from having damage as when I stopped omeprazole earlier in the year my stomache pain was really bad and I was drinking that gavastomn a couple of times a day

[Orchard33 in reply to brenanddave]

My endoscopy five months ago showed fundic polyps(result of long term Omeprazole) and Helic. P. No longer take PPI. A disaster of a drug for me. Take nothing now and feel better. Try an H2 Blocker. Much gentler.

[JGBH in reply to Orchard33]

Hi, what H2 blocker are you taking, please? Have taken Omeprazole for decades! How did you transit from PPI to H2 blocker? Was it easy? Did your GP recommend the switch over?

[Orchard33 in reply to JGBH]

I was originally on an H2B then, when it was withdrawn, I went on to Omeprazole. After 5 years I asked to go back on an H2B again and GP surprised but agreed. It was easy to switch for me and I rapidly felt a lot better. I took Fomatidine then stopped altogether. Many people manage with Gaviscon when they need it. I don't need to.

[JGBH in reply to Orchard33]

Thank you for your reply. Pleased it’s working for you.

[Ghound]

Hi, Sorry, haven't had an endoscopy and have never had gastric symptoms. However, I had severe neurological signs and symptoms in conjunction with normal B12 level ( pre injection)

I obviously absorb B12 but it doesn't get transported into my cells.

Perhaps this is what's happening in your case too ?

Others here more knowledgeable than I, have, I think, posted about this, maybe Sleepybunny?

Anyway, it's something to "remind " your doctor about !

Hope you get some answers and more frequent treatment soon.

As you know, many of us, including me, self inject to keep in optimum health.

Wishing you all the very best. xx

[brenanddave in reply to Ghound]

Thank you Ghound That is really interesting You may well be right I'm still trying to work this all out so appreciate what you are saying!

[brenanddave in reply to brenanddave]

Bthe wa! How did the discover this is what was going on with ou if ou don't mind me asking? Also, my mcv and mch though just in range at the high end or just over , have alwas been up there Were ours?Not sure if it is rellevent My doctor said he is unable to request MMA tests and I think the Neuro has to do that Only!! There is a years wait to see one aaahhh I am SI at least x

[Ghound in reply to brenanddave]

Hi, The only test I was ever offered was serum B12 level, which was normal.I basically had to deduce what could be wrong with me, armed with a little knowledge from my nurse training, Dr Google, and the fact that my Granny had PA.

I had previously had years and years of unexplained iron deficiency anaemia and was given a diagnosis of fibromyalgia, when suddenly the neurological symptoms began with a vengeance!

When I lost feeling in my feet, lower legs, hands and arms I was terrified I had MS or MND.

However as my symptoms were bilateral, I looked for another possible cause and suspected B12 deficiency.

My GP took a lot of persuading that it was possible to have B12 deficiency with normal serum levels, and that I wished to be referred for a hospital consultation.

The consultant I saw specialised in General Medicine and wasn't any more knowledgeable than my GP, but I managed to get him to prescribe a trial of B12 loading dose injections.

It took nearly six months of every other day injections, but I was lucky that it began to resolve most of my symptoms.

I continue with my NHS injection every eight weeks, but that's not nearly enough to keep me in reasonable health - symptoms return within a week, so I self inject weekly.

Everyone has a different story and treatment requirements, but I hope my personal perspective will help a wee bit to piece your own jigsaw together. 🙂

Best wishes xx

[brenanddave in reply to Ghound]

Thank you so much for sharing our journey with me It is all helping me for sure I am the same with bilateral symptoms and came to the same possible conclusion about not being something like MS after googling too lol. I have hemochromatosis and both me and my new doctor wondered if as PA and that are to do with the blood and ferritin etc if that could be affecting my blood Many of my huge list of symptoms have come right after SI b12 every day for a few months now sometimes twice daily but, I am still very tired and spending most of my days laying on my couch still Also struggling with aching legs that are making walking a discomfort As well as burning and numbness etc That has improved even before I started gabapentin now on 900 mg through the day The fact I had improvement with b12 before that made me believe it was the b12 causing the problem Also! Though I had 2 neg intrinsic factor results I did test positive for parietal cell antibodies It has been 5 months since my loading doses and feel I shouldn't be so exhausted still xxx

[scnuke]

Not being pessimistic, but with these results unless you have positive Intrinsic Factor AB or Parietal Cell AB blood tests (which mostly have a 50% accuracy rate), you will probably be on your own for treatment of your neuro symptoms, unless you happen to find an open-minded physician. This doesn't mean you don't have PA, but sanctioned treatment may be tough to come by, I was lucky enough (???) to have both positive IF and PC tests and multiple signs on endoscopy in addition to severe neuro symptoms. And was lucky enough to have physicians that would back my treatment, currently 1mg hydroxo twice a day. I can't say I'm back to normal, but certainly more improvement on this regime than anything I have tried in the last 5 years. I am off all PPI's and currently doing Famotidine twice a day, trying to get to once a day. Sometimes you have to sail your own ship and be the navigator. Good Luck.

[brenanddave in reply to scnuke]

Thanks Scnuke! I tested pos for PC and the intrinsic factor was 1.2 The doctors have it on m yfile as PA and believe I have peripheral neuropathy along with neurological and SASD Just don't want me injecting daily or twice daily for the constant pain and pins and needles etc The are all so ridged at going by numbers on the blood tests aahhh I'm just trying to get myself well Can barely walk with stiff lower aching legs and exhaustion And! getting over covid

[Litatamon]

I have had an endoscopy that came back relatively normal, it was done for a separate reason than my b12 deficiency. But I too was hoping something showed on it, besides cancer of course.

A contributor who is no longer on here told me that there is an entire section of our digestive system that is inaccessible by either a gastroscopy (upper endoscopy) or a colonoscopy.

My doctor was always fine from the beginning with simply assuming I had PA, as she saw no other reason for the deficiency. And her words, "it is the same outcome regardless, shots for life". I have no clue what is written in my chart. I don't worry about it as I now self-inject, and no longer go in for my monthly shot (cyanocobalamin), which has never been threatened to stop, even in the pandemic. She did not do the IF test, and quite frankly I am fine with that as it is not reliable. I did question her relentlessly a la How do you know I don't have this or that?

All the best to you.

As an aside the gastroenterologist that did the scope knew nada about pernicious anemia nor b12 deficiency. He showed that by saying in his report I would be not have any excess weight on me with a b12 deficiency. You can't write this crap. Like a b12 deficiency with thirty-two symptoms for years on end did not even exist, because he decided that. Maybe I have excess weight on me from going from someone who walked & walked and worked out all the time to someone who had to pare it all down for an extended time at one point. Due to a severe b12 deficiency. Laughing.

They are so

unreal.

[brenanddave in reply to Litatamon]

Well! You just described me Thank you so much I have a new doctor who though he does not have PA, ( as far as he is aware) He does have chronic fatigue extensive nerve damage and pain from a different condition He can only work 3 days a week for four hours and that's after 3 yrs not working He left our first appointment armed with lots of info from mayo clinic etc with cases like ours And he is going to research hemochromatosis with pernicious anemia as I have that too The are both blood disorders and both factor ferritin into play I tested positive for parietal cells but 1.2 intrinsic factor My last doctor after doing manual tests believed I had peripheral nerve damage neuropathy and neurological problems, along with SACSD. left him because he was arrogant and let this get in the way of my treatment and wanted total control of what I was SI, And asked a neurologist to write to him telling him how many b12 injs I should be having No mention of nerve damage!!! The Neurologist shocked that I was SI told him to tell me 8 weekly aaahhh!! I am using my body as a guide for how much b12 I take! I am on gabapentin for the pain also I had a list of about 25 symptoms that I have had and that most have healed since b12 It speaks for itself ****** IT'S SURE BEEN A JOURNEY!!! I had a call on Frida that my last doctor having seen my endoscopy results asked the gastrologist or someone from that department,to call me to tell me that everything looked fine and I didn't need to have b12 injs as my recent b12 was looking replenished at 1460, Idiot!!!!! Id been SI for 4 months I mentioned the nerve damage and he said oh! I don't know about that aaahhhh

[Litatamon in reply to brenanddave]

Keep on and ignore. I went EOD immediately with the UK writings on neurological damage as my guide. I am not in the UK but was thankful for that information right out of the gate. (I am all over the place with when I inject these days)

I had nerve pain so severe I used to wrap my face in a tensor bandage, with ice packs and just rock through the pain. I could not carry a thing on one side of my body for years. An MRI diagnosed me with trigeminal neuralgia in 2019, well a neurologist did but you know. 😁 At the very same time that my b12 deficiency was found finally by my GP. The nerve pain left not long after loading doses and has never returned.

Never returned, after years of severe pain, left in 2019. Along with about 80% of my thirty plus symptoms that had been going on for years.

That neurologist told me he did not have any patients with b12 deficiency. I mumbled 'Yep, because they are far too busy masquerading as your dementia, trigeminal neuralgia & MS patients.'

He also told those shadowing him that I needed to eat more meat. Laughing. Highly entertaining.

Keep me abreast with your doctor's findings. I 💯 suffer from an absorption issue, just do not know why. I also know something runs in my family on my Mom's side, whether that is pernicious anemia - do not know. There are four or five of us that have had a severe b12 deficiency. I believe my poor mother died of it, us not knowing. But I do not go there too much as the brain can not handle that level of pain.

My absorption could be due to my thyroid issues, have since had to have a thyroidectomy.

I also had two long hospital stays with sepsis, outside source never found. That could have caused something too.

Health and the study of it is really in its infancy, doctors just do not want to admit that fact.

[brenanddave]

Wow! You have really been through so much , I am so sorry to hear all of this I don't know how ou kept our sanity through it all Good news that loading doses helped you! I have had the loading doses but didn't do anything noticible But! Then again it was over a long weekend etc so wasn't EOD for 2 weeks I am still on one or two b12 inja daily and now 900mg of gabapentin split into three times daily which I was reluctant to have but can't sleep or function well because of the nerve pain without it I have to say! I found upping the night gabapentin seemed to really ease the pain and it is worse at night than day. Sad if your mum did have it! sending hugs xx

[Sleepybunny]

If you haven't already, maybe you could search online for information about Functional B12 Deficiency.

MMA, homocysteine and Active B12 (holotranscobalamin) tests may help to diagnose this.

Results of the above tests are likely to be affected if you are injecting or supplementing with B12.

I don't have a PA (Pernicious Anaemia) diagnosis as PA tests were all negative. My current GPs (I'm in UK) have accepted that I have B12 deficiency as B12 stops my symptoms returning. I went many years without treatment. I also suspect my mother had similar issues with B12.

I was never offered a gastroscopy despite years of alternating diarrhoea and constipation and flatulence. I was scared about the possibility of gastric or bowel cancer but no-one cared. These days my gut health is good. Going gluten free helped me and cutting back on sugars. I definitely had some sort of allergic response to gluten but coeliac tests were negative, don't think they did all tests they should have done though. Pretty sure I had systemic yeast (candida) infections and was very prone to fungal problems.

I sometimes wonder if I have Antibody Negative PA and if past GPs had done their homework properly, I should have been diagnosed with this according to relevant UK health documents such as one below.

stichtingb12tekort.nl/engli...

I suspect that in my case it is something rarer and probably functional B12 deficiency of some sort. I had tests for this privately but had been supplementing B12 heavily prior to tests and they all came out normal range.

From NHS article about B12 deficiency

"Functional vitamin B12 deficiency

Some people can experience problems related to a vitamin B12 deficiency, despite appearing to have normal levels of vitamin B12 in their blood.

This can happen as the result of a problem known as functional vitamin B12 deficiency, where there's a problem with the proteins that help transport vitamin B12 between cells."

nhs.uk/conditions/vitamin-b...

Functional B12 deficiency is mentioned in Point 5 of link below.

b12deficiency.info/writing-...

Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.

b12deficiency.info/your-ser...

I'm not medically trained.

[brenanddave in reply to Sleepybunny]

OMG! There are no words!! I am so sorry I know what I am going through and its just about sending me potty!! I have tested positive at least for parietal cell antibodies twice now but twice tested neg for intrinsic factor Luckily the doctors decided to put on my file PA but it was a possible PA for 2 days. I say lucky!! But I am still going through all the usual S**T Changed doctors 3 times as they all just can't get the whole thing with regular b12 injections I am now SI and though reluctant, am on gabapentin ( currently 1000 ml a day) as the pain is interrupting my near non-existing life and sleep Luckily my newest doctor doesn't smurk and shakehis head and tell me there is no way!! I could have this amount of neuropathy with my b12 levels . And yet there I am in pain as he speaks!! I have left the new doc with documents from Mayo clinic on study cases of people not treated as all blood tests markers appeared normal and yet they still got very ill so were followed up and treated The conclusion was that you could not go by levels in Blood tests! as we know. I will put the links up here. Meanwhile! I had someone from the gasto department ring me to say all was well with my endoscopy and as my latest blood tests show I am well replenished b12 1460! That I don't need to worry about any more of them aaahhh!!! Ignorance! I told him I'd been having twice daily b12 to which he gasped and said, Why are you having that much Like it was opium!!!!! lol I mentioned my crippling neuropathy, to which he had no reply So! You see!! Even with a PA diagnosis, I am going through this Soooo frustrating!! Someone said! No need for all the tests anyway! because at the end of the day, we need b12 inj for life and no matter what you get tested the end result is the same Thats what I'm going to try going with! Otherwise, I will go insane! lol

[Sleepybunny in reply to brenanddave]

"I have left the new doc with documents from Mayo clinic on study cases of people not treated as all blood tests markers appeared normal and yet they still got very ill"

If you need another article to convince GP that it is possible to have severe B12 deficiency with normal range serum B12, search online for "Turner Functional B12 deficiency" it should show a brief research article where the patient suffered spinal cord damage due to treatment being delayed because serum B12 was normal range.

PAS (Pernicious Anaemia Society) website have an article on SACD, sub acute combined degeneration of the spinal cord which might be worth passing to GP especially if they are not giving you adequate treatment.

pernicious-anaemia-society....

This summary from BSH Cobalamin and Folate guidelines includes the statement

" In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

pernicious-anaemia-society....

Has your GP read BSH Cobalamin and Folate guidelines?

b-s-h.org.uk/guidelines/gui...

Lots of useful info in pinned post "Various PA/B12D resources".