Endoscopy done :-(

[Pixielula]

Well guys had the endoscopy, I've got a sinking heart as I type this, every one is fixated on the anaemia!!! Do I vomit blood? is there blood in my urine? Is there blood in my stools? How heavy are my periods? Are you a heavy drinker? Do I take loads of NSAIDs? 

"Mrs ##### do you understand why your having this procedure today"

"Hopefully to find the cause if my B12 deficiency "

"It's to look for a cause of your anaemia"

 "Dr could the anaemia be a symptom of my B12 deficiency"

"Um I don't think that has anything to do with it" but we are going to test you for Coaliac diseas. 

So all the visual checks "looked good" they took 2 biopsies one for Coaliac the other for ?????? The nurse pre procedure said they would check for H pylori, guess what they didn't !!! 

Now the Consultant wants me to have a colonoscopy to look for possible bleeds there.

BANGING MY HEAD AGAINST THE WALL !!! 

The team were lovely but the questions I asked were not answered, the nurse who did my pre checks told me she knew all about b12 deficiency as she is a vegetarian and has to take iron tablets for her b12 deficiency!! I think the consultant was disappointed to not find a huge blood sucking tumour or bleeding ulcer!! Oh well better luck next time eh!!! 

My head is starting to smart, from all this banging!!

[Pixielula]

Oh and the banana flavoured anaesthetic spray................... You can put listick on a pig, but it's still a pig!!

[Lisahelen]

Oh poor you at not getting the real answers you needed. Its a shame we cant take in a wish list of all the things we know that they should be looking for when they do these examinations. Ive got mine tomorrow and im not holding out much hope it has to be said.

[Pixielula in reply to Lisahelen]

Well good luck to you........ Hopefully you might get some answers ....

[fbirder]

Just what sort of anaemia do they say you have? They should have done a Full Blood Count - do you have the results? 

[Pixielula]

Well on my last blood test by GP on 15th Feb. this is after taking 644 mg ferrous fermarate daily for 4 months. red blood cell distribut width 16.8 (11.50-16.00) so my blood cells are too big! So megaloblastic I assume. But on my referral letter I'm sure it said mycrocytic, which is small..... So I don't have a clue they did FBC at hospital on Monday. Last FBC was Feb this year

[Gambit62 Administrator in reply to Pixielula]

is it possible it said macrocytic - large blood cells more spherical than they should be.

The nurse really sounds as if she doesn't know what she is talking about. Sad and frustrating

[Pixielula in reply to Gambit62]

Yes oh that's the one.... Oh at least it's the same thing .... Phew! 

[Laura5 in reply to Pixielula]

Red blood cell distribution width doesn't measure the size of the cells - just how similar the sizes are. If the distribution width is high it means that you have some smaller cells and some larger cells. You need to look at the MCV to see whether the mean size is smaller or larger than normal.

[Galixie]

2 biopsies may not be enough to find celiac disease. It sounds like the whole lot of them are somewhat incompetent if they didn't check for H. pylori and they only took two biopsies to look for villous atrophy.

It would be a good idea to get a copy of your most recent blood tests with the reference ranges and have a look at it for yourself. This forum can help if you need another set of eyes to help interpret the numbers.

If it were me, I think I'd want to clear up exactly which type of anemia they are trying to get to the bottom of. It sounds like they were looking for a cause for blood loss, but macrocytic anemia is never caused by blood loss.

[Leilanilea]

I can only imagine your frustration and anger over this charade! Believe I may have missed the post with your complete blood count (CBC) results, including Haemoglobin (Hmb), Hematocrit (Hct), Red Blood Cell Count (RBC) and indices such as MCHC, etc. 

Re: H. Pylori, you can ask to have a stool test for that. Depending on your age, and which lab results have been abnormal (Hematology), a colonoscopy may be a good idea. I understand the plan to find out why your results are low, as if you have very low Hmb/Hct you may have occult (unobserved) bleeding from the colon. 

But it sounds like you and your doctors are on two different quests and before more invasive testing is done might you be able to schedule office visit to just talk about problems, hopefully taking along someone who will help listen to you and doc and help sort out the basic reasons for any testing already done or planned for future. Take your own notes to help remember the points you wish to make and questions to ask. 

Best wishes,

Leilani

[Pixielula]

Thanks for your input.... This is where I start getting confused, post above yours states " Macrocytic anaemia is never caused by blood loss" so why are they looking for blood loss to explain the anaemia?? My understanding that I admit is very limited is the problem of large cells starts in the bone marrow where the new blood is made!! 

[fbirder in reply to Pixielula]

My understanding that I admit is very limited is the problem of large cells starts in the bone marrow where the new blood is made!!

That's correct. Macrocytic anaemia can have several causes, one of which (possibly the most common) is megaloblastic anaemia caused by a lack of B12 and/or folate. The lack of these vitamins means that the bone marrow cells that produce the red blood cells can't produce DNA fast enough for the proto-blood cells to divide properly. However they do keep on growing - so you end up with larger cells.

Why are they looking for a bleed to explain macrocytic anaemia? Possibly because somebody only read the word 'anaemia' or they didn't understand 'macrocytic'.

Actually mild macrocytic anaemia can be caused by traumatic blood loss. Because the body tries to produce lots of new blood cells which tend to be larger than normal. But this is transient and mild.

If you have had a large blood loss into your gut then you would almost certainly notice it. You would have blood in your poo (tarry, black and smelly if from the upper gut; red and bloody from the lower gut). I'm surprised you weren't asked about that before they even did the referral.

[Laura5]

It sounds like you have microcytic anaemia from what you have said and probably iron deficiency anaemia - that will be why they are looking for blood loss.

To find h pylori they will look at the biopsies.  This seems to be the gold standard test for h pylori - if they find it on the biopsies then you have an active infection (from what I have read). 

Edit: Just to add - I also had microcytic anaemia which resolved with iron tablets but I still have very low ferritin after taking iron tablets for several years. Last year I had an endoscopy which found h pylori on one of the biopsies. I had had a stool test for h pylori a year before which was negative so I just assumed that the levels of h pylori were not high enough to be significant - I realise now that this was not correct and the gastroenterologist should have pointed out that I have a h pylori infection (which explains ALL my symptoms!). 

Another thing which I have found out since reading about this is that it seems that there is a growing consensus that h pylori might be the trigger which leads to parietal cell antibodies (which I also have and is why I am able to get B12 injections despite not having particularly low B12 level). I'm sure that one paper stated that they had seen parietal cell antibodies disappear once the h pylori infection was successfully treated (can't find the paper any more - I didn't think I had h pylori so I just dismissed it at the time). I wonder how many h pylori tests in people with parietal cell antibodies give false negatives and whether this has ever been tested.

[fbirder in reply to Laura5]

I am positive for anti-GPC antibodies, but I definitely don't have a H pylori infection (ay least three gastroscopies failed to find any). So there must be an additional cause.

[Laura5 in reply to fbirder]

That's what I thought when I was reading the papers - until I got hold of my biopsy results.  Gastroenterologist didn't even mention the h pylori - just said there was nothing found in my endoscopy which explained my symptoms so they were probably due to anxiety.

I wonder whether an h pylori infection can trigger the antibodies and then the infection doesn't last? I know that your endoscopy found much more evidence of autoimmune gastritis than mine so you've probably had the antibodies for longer. I'll have to have another search for the papers.

[Laura5 in reply to fbirder]

ncbi.nlm.nih.gov/pubmed/146...

This paper seems to suggest that h pylori is seen in early gastric autoimmunity and then disappears because the virus does not survive in low acid environments.

[Laura5 in reply to fbirder]

And I think this is the paper about reversal of parietal cell antibodies that I was thinking of

ncbi.nlm.nih.gov/pubmed/103...

More about the link between h pylori and autoimmunity

ncbi.nlm.nih.gov/books/NBK2...

[fbirder in reply to Laura5]

Nice research. I'm going to have to spend some time on that last reference, far too much biology for me to be comfortable with.

I was sure that there were differences between autoimmune gastric atrophy and GA caused by H. Pylori. I'm sure my gastroenterologist said the former was mainly restricted to the fundus while the latter was more widespread.

This reference - emedicine.medscape.com/arti... - suggests that there are histological differences as well. 

Looks like I have some reading to do over the weekend. 

Thanks

[Laura5 in reply to fbirder]

Yes - these are generally referred to as type A (fundus and body) and type B (antrum) gastritis - so when I found out I was negative for h pylori and positive for parietal cell antibodies I dismissed all the papers on type B. And then at some point I found this thread of papers on the link between h pylori and PCA and later found the mention of h pylori in my biopsy pathology results.

My understanding (at the moment!) is that there are a lot of people with h pylori infections and only a very small percentage have the genetic susceptibility to the autoimmunity - so in general h pylori shows type B gastritis. At the point at which people are positive for h pylori and parietal cell antibodies, it is early in the progression of type A gastritis (mine just showed chronic gastritis but no atrophy) and by the time the type A gastritis shows up as atrophy the h pylori infection - and resultant antral atrophy - has gone?

[Pixielula]

Everybody I come into contact ask the same questions ...... Is there any

Blood in poo

Blood in urine 

Am I vomitting blood

Heavy periods when was last period were they heavy before they stopped

Am I a heavy drinker ( none drinker) 

my GP says it's more cost effective now to just go ahead with the endoscopy rather than have a referral see the consultant then do the endoscopy. They miss out one appointment, I will post my bloods that led to the referral when I get home. I only have one lot of bloods and they were done after I had been taking f fermarate for 4 months.

[sweetnessandlight]

Oh dear! So like my experience at endoscopy. The nurse asked me if I take iron tablets. No. But it says here you have anaemia. That's pernicious anaemia I said. That's b12 deficiency not iron! (Stupid woman) what else don't they know? It's scary!