Existing PA and enlarged red blood cells

[gemssea]

Hi all,

Was diagnosed about 6 years ago and have been self injecting very 6 weeks, thanks to advice received on here, for about a year. Went back to the docs recently as still feeling tired all the time and they did a full blood test. My RBC, which is normally around 100, has gone up to 102.8 but all my other levels (B12/Folate/Iron etc) are normal. The doctor didn't seem overly worried but should I be concerned? Any advice appreciated as took 10 years to get diagnosed with PA so I dont want to potentially let anything else get missed!

Thanks

Gemma

[gemssea]

Also, I had some stools tested (1 was inconclusive so needs to be retested) but the other showed Helicobacter Pylori - what does this mean for my PA?

[Gambit62 Administrator]

what were the ranges?

labtestsonline.org/tests/re...

This is a count of the number of your red blood cells then the slight increase whilst all the other measures stay constant - would mean that your red blood cells have got slightly smaller - which would be a good thing if you originally had macrocytosis (in which they would be larger and rounder)

[gemssea in reply to Gambit62]

Not sure of the ranges but she said my size red blood cells are usually larger than they would expect 100 (they expect to be around 97 apparently) and have now gone up again to 102.8 (asked if I was drinking more, which i am not)

[Gambit62 Administrator in reply to gemssea]

you need to get the exact results and know exactly what test they are talking about.

A full blood count includes a large number of tests of which a RBC is one. This doesn't tell you anything about the size of the cells.

MCH, MCV and MCHC tell you about the size and shape of the red blood cells.

[gemssea in reply to Gambit62]

Ok, I will ask but I have been told before that the size of my cells are large and now gone up again.

Just looking into the link between Helicobacter Pylori and PA as will be starting the treatment for the initial in a week so wondering if that's going to improve my overall health!?

[Gambit62 Administrator]

If you are injecting then you are not getting your B12 from your gut so h pylori isn't relevant.

h pylori infection can affect the absorption of other vitamins and minerals.

If you have macrocytic anaemia and that is getting worse then it is probably due to folate deficiency rather than B12 deficiency

[gemssea]

Thanks, I know how it works. H pylori is still relevant to me as it could have been the cause of my PA, although I assumed hereditary as my dad also has it. It is something I will still look into more separately as if they fix the bacterial infection I would like to know if my gut will repair and thus no longer need to inject, providing that was the cause of my PA.

As I explained, my folate and everything else is fine but my cell size has increased.

Thanks for your replies. I will continue with self investigating and with the doctors.

[Gambit62 Administrator in reply to gemssea]

PA is a particular auto-immune condition that can lead to a B12 deficiency. H pylori can also cause B12 deficiency but it does not cause PA.

[KimberinUS]

Hello gemssea,

I had h pylori. It reduces/neutralizes the acid in your stomach causing nutrient absorbtion issues and is the cause of 80% of ulcers. Make sure you get retested after treatment because h pylori is known to be resistant to antibiotic treatment. Treatment is Only effective in 60 to 90% of folks. Re-Testing in some places is 2 weeks after treatment which doesnt make any sense to me because one of the protocals for original testing is to be off all antibuotics and proton pump inhibitors for 4 weeks.

In US retesting is 8 weeks. This gives the h pylori time to re colonize prior to retesting in case the treatment did not work completely. Treatment is called triple or quadruple therapy. Triple is 2 different antibiotics and a ppi. Can be for 7, 10 or 14 days. Quadruple therapy is the same except adds bismuth (pepto bismal) to the treatment. The bismuth has a heavy metal in it (h pylori is attracted to iron ((a heavy metal)) so the addition of bismuth is supposed to attract the h pylori)allowing the antibiotics to work on killing it.

if first treatment doesnt work you will be given different antibiotics to try again. i had to take a probiotic as diarreah was an issue starting on day 7 of treatment. i also had to do 2 rounds of treatment.

Once h pylori is killed, it takes differing amounts of time, per individual based on amount of damage done, for the stomach lining to heal and this healing, HOPEFULLY will allow your stomach to produce intrensic factor again. intrensic factor is what combines with b12 so that it can be absorbed in the illium which is the 3rd and last portion of the small intestines.

After treatment, i took hcl with pepsin to increase my stomach acid to aid in absorbing nutrition from food. originally i could take 18 pills with a meal, with no stomach warmth, which scared the crap out of me, cause no one should need that much. and it is expensive, not that we can place a monetary amount on our health but it was draining my pocketbook.

This told me i had no stomach acid.

i finally (5 months after 2nd treatment) got a nutribullet and started blending fruits and vegtables hoping to be able to absorb nutrition from the already broken down smoothies.

i felt better, not 100% yet, a week later and now take zero to 2 hcl pills with a meal.

i hope this helps.

kimber

[gemssea in reply to KimberinUS]

Kimber, this is exactly what I was after!! Obviously I cannot be sure when I got the h pylori (for reference I am 34 and diagnosed with PA 5/6 years ago. I found out much later that much B12 levels were low at 21 years old in an unrelated stay in hospital, thus I suffered years of chronic fatigue and pain and being told to take Prozac before a doctor diagnosed me a few years back!).

So from what you have so helpfully explained is that the doc has put me on triple therapy. I will start the treatment in a week (hectic week at work next week and the doc explained there could be some side effects so cant risk it) so will definitely insist of retesting towards the end of summer to see if it has been effective.

Will bear the hcl pills in mind. I already juice most days, which I why I guess my iron levels etc were good, so will continue doing so.

Thank you so much for taking the time to read my post and respond with some really useful information - much appreciated! I hope you continue to feel better and improve each day

[gemssea in reply to gemssea]

Still doesn't explain why my cell size has increased again but will sort the gut out first and then see where I stand on the blood cell size.

[KimberinUS in reply to gemssea]

you are welcome.

my non medical thoughts are that h pylori stops intrensic factor production, therefore the body doesnt need to produce intrensic factor antibodies. therefore intrensic factor antibody negative tests.

this lack of any intrensic factor is super bad because we need it in original absorbtion from food and in daily reabsorption cycle that happens once we get injections.

so again, just my thoughts, if a normal person needs 2.4 to 7 mcgs daily, that is because almost all of the b12 that is recycled out of the liver (this is a normal daily process) into the blood is reabsorbed.

when you have zero intrensic factor being produced in your stomach due to h pylori damage, then the daily reabsorbtion from the liver's daily recycling also drops out, causing the need for more frequent injections than the standard 3 monthly.

i hope that makes sense.

h pylori runs in families!!! it is thought it can be passed by kissing or by drinking from the same glass or eating from same utensils. if you have a significant other or children, they need testing also! it may not be causing them any issues, YET! also you can be reinfected by their infection.

best of luck and health.

[gemssea in reply to KimberinUS]

Gosh! My doc didn't advise it was contagious! Thanks for the heads up

[KimberinUS in reply to gemssea]

yes, a parent can ver easily, unintentionally, infect a child. additionally as the damage increases the amount of intrensic factor decreases.

this could explain your increased mcv.

for example: say you get h pylori. your intrensic factor production drops to 90% of normal. no big deal as you have a liver full of b12. as time passes more damage occurs and then you only have 80% of normal intrensic factor production. this still might have no effect on your daily health. maybe a couple of years pass more damage occurs and your down to 70% of normal intrensic factor production. maybe now you start to feel tired so you take a suppliment. maybe it helps you get along for awhile. more damage occurs and your at 60% and struggling. you go to the doctor but all tests are normal. the doctor suggests you are depressed and offers antidepressants. you take these regularly or off and on for several years or even a decade. By then more damage occurs so maybe you are at 40% of normal intrensic factor production but your liver no longer has any extra in storage to help you out and the suppliment tablet isnt cutting it anymore. you feel like you cant continue so in desperation you go to the doctor again. but this time your mcv is raised or the doctor actually ordered a b12 test and you get a b12 deficiency diagnosis and loading injections. oh the relief! but wait. then they only give you injections every 3 months. maybe this is fine for the first year or two or more but more damage continues to happened due to that pesky h pylori bastard that no doctor has tested for. so by now you only have 20% of a healthy normal person's amount of intrensic factor and your liver is still doing its normal daily recycling of the amount you had injected but there is very little intrensic factor available to reabsorb it like a healtht body would do. so you get shots increased to every 8 weeks after having to basically beg for it. And again you get relief. but only for awhile. then more damage. now your down to 10% of normal intrensic factor production or none and again your mcv rises due to not having enough b12 to produce healthy mature red blood cells.

these are just my thoughts, nothing research based, but i lived parts of it.

in my opinion, everyone with a b12 deficiency needs checked for h pylori. if the test is negative, great! if it is positive they need treatment before more damage occurs.

maybe the stomach heals after treatment and intrensic factor production improves. too what extent, who knows. maybe 50%, maybe 80%. unfortunately if left undiagnosed too long, maybe nothing.

i still have hope.