Pernicious Anaemia Society

Further necessary tests for PA

I'm wondering what other tests I need to optimise my health ?

I've tested positive antibodies for the Parietal Cell and the IF and also for H Pylori. Do I now need the Homosyctein and the other one mentioned - Immunoglobulin (sp ?)

I'm determined to be proactive as I've other autoimmune diseases to deal with too!

SM

16 Replies
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Hi susan-mac What treatment have you been "offered"?

Do you have neurological symptoms?

Do you know what your Folate level is?

I'm not a medically trained person but there are others on here who will be able to give you good advice

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Thank you for replying Clivealive - I'll do a dual reply now to yourself and Admim Gambit62

Ok - B12 very low, FBC ok but very low white cell count and neutrophils - ignored twice and subsequent double lung infection! The fact I have brittle Asthma and Bronchiectasis might have been a tiny clue as to what was going on !!!! Mind you I missed that myself !!! I've bypassed GP on this one and going (I've got insurance) to my Respiratory Consultant whom I'm quite sure will give me the usual 4 months of Antibs (Macrolides actually)

No supplements or 💉 started when PC and IFA tests so Antibody Positives are correct.

So you think no MMA test needed.?

Hpylori treated (barely tolerable Meds ) together with a PPI yes . Does this need retested to see if the Antibs worked ? GP says no but I'm doubtful ?

Folate level on low side of range - no mention of supplement needed .

Yes Neuro situation not good at all ! I've had a LFLobe biopsy for a suspect tumour with unfortunately pathology all inconclusive. I've had two Grand Mal seizures albeit 3 years apart, but more than one 'strike' and it's an Epilepsy title.

Neuro Surgery team do not agree with Neurologist (different hospital but liases with the surgical team) After each 6 monthly MRI (it's the latest newest machine btw) they come up with "probable inflammation " .....I think they just don't know what else to say ....and god forbid they'd say "we don't know" !!!

I've also had a lacunar stroke at 53 ....age related atypical of course.

I've got Hashimotos too ....so there are connections all round I believe. Thyroid nodules too - having 6 monthly biopsies for those to check for sinister changes.

You can see now why I'm keen to have the Homosysteine test ! Is it available privately? I'm not waiting around for a Hospital referral Appoinment to eventually happen - my GP is likely to refuse it anyway.

Also do I need an Endoscopy ? I've researched and discovered the NHS don't recommend purely on financial grounds but ideally it should be done once a year for security ... what's your opinion ?

I should say I've got awful acid reflux and digestive problems too yet I'm 5'3" and 8st 10lbs I've cut out gluten and all wheat along with dairy (bad for the lungs anyway) Big on the eggs, fish and chicken though no red meat but lots of vegetables and very little sugar.

I'ts all a bit of an anomaly !

SM

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additional to questions posed by clivealive what are your B12 levels and have you had a full blood count.

Were you supplementing B12 at all during the tests? It can give a false negative on the IFA test if you supplemented in the last week or so.

The other test mentioned was MMA but if you have test results showing that you have PA then even if you aren't B12 deficient now you will eventually become deficient - and you should be able to rely on the tests done so far along with symptoms.

Have you spoken to your GP about the h pylori infection and what are they doing to address it - should be anti-biotics and a course of PPIs to give the gut time to heal ...

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Thank you Gambit62 , Iv'e replied to yourself and clivealive in one neat response 😁

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I'm still not sure whether you are being treated for Pernicious Anaemia with Vitamin B12 injections - this I assume would be down to your GP if he/she is aware of the "antibodies for the Parietal Cell and the IF " results you mentioned at the beginning.

Your "low" Folate may need to be monitored as this and B12 help your iron to make red blood cells.

I'm sorry to read that you have so many problems and hope you get some answers soon.

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Hello again Clive, I am being treated with B12 injections yes. I've had 6 weeks of 3 x per week and now I'm to have one a month "forever" which I don't think is enough !

I'm still having all the same symptoms as before - any beneficial effects of an injection lasts about a day sometimes two. I guess I haven't yet got the right recipe ! I'm being met with resistance in trying to find the right recipe - - Gp prefers to believe my symptoms are due to other medications ........ I don't !

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so if your GP thinks your symptoms are down to other medications which medications are these and what are they doing about them.

If you are on B12 injections then you could ask for MMA and homocysteine may well come back normal.

It can take a while for symptoms to resolve themselves.

Not clear where you are based - UK, US or ???? it would be helpful to know as treatment regimes do vary depend on where you are ... and can even vary depending on where you are in a country.

There is a siginificant overlap in the symptoms of B12 and those of other auto-immune conditions - including Thyroid and diabetes so narrowing what is causing symptoms can be very difficult.

Suggest that you keep a diary of symptoms and try to relate them to medication - including B12 shots.

Some people do find that high level oral/sublinguals can help them maintain their B12 levels in between shots - though definitely doesn't work for all - other options are nasal sprays (work well for me) and skin patches.

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Thank you Gambit - I'm in the UK. The other Meds GP says are affecting me are AEDs for the Neuro problems. They can have sedating side affects but the longer on them the lesser the side effects so I'm not buying that one ! I certainly don't feel anywhere near as bad as when I first started to take them (3 and a half years ago)

If I ask for the MMA and Homocysteine tests how long would I need to be off the B12 injections to reveal a reliable 'positive' result ? I'm not prescribed any more injections for a month from now anyway !

I really don't think the x 12 I've had to date are working anyway - I can't feel much improvement in symptoms! No oral/sublingual/nasal supplements have been offered to me.

I seem to get a day (after the injection) of better'ish and then slide down the slope again. I'm not depressed,very happy family, I've anxiety under control and I'm still running a business (albeit at a reduced level).

The Hashimotos is under control and yes I know there's a connection with PA. I'm not Diabetic but my brother is Type 1 and mother is Type 2........so the family autoimmune factor is lurking there.......as is heart disease , hence the relevant need for the Homocysteine test.

Diary of symptoms is a great idea - I used to do that with all the Neuro 'carry on' .......it now makes for scary reading and shows how accepting I've become !

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for a baseline of MMA or homocysteine you need to have been off supplementation/injections for about 3-6 months (see pinned posts which are at the bottom if on a phone or to the right if using a browser)

this study may be of some use in relation to AEDs

ncbi.nlm.nih.gov/pubmed/212...

which implies different interactions with folate and B12 depending on the drug - so are they looking at changing drugs? Even if the drugs are involved that doesn't rule out two problems but getting medics to recognise that can be quite tricky.

You won't be offered sublinguals, or sprays on the NHS - these are vitamin supplements that don't require prescriptions. Injectable B12 requires a prescription in the UK by virtue of the fact that it is injectable.

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"Hpylori treated (barely tolerable Meds ) together with a PPI yes"

Hi,

Just wondered if GPs are sure H Pylori has been eradicated. I read that it can be difficult to get rid of.

patient.info/doctor/helicob...

pathways.nice.org.uk/pathwa...

nice.org.uk/guidance/cg184/...

I read that PPIs can affect B12 levels so I wondered if it might take a while for B12 injections to have an effect.

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

I am not medically trained.

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Thank you for all those links Sleepybunny

I'll digest it all thoroughly and be armed for action !

Onwards and upwards 😁

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With your autoimmune history, h/pylori, low B12, positive IF etc. and, more importantly, the severe neurological symptoms you've already experienced, I cannot understand why you are not still being treated with injections as per BNF guidelines, 'every other day until no further improvement', as you've probably seen from the pinned posts here how important it is to have early and adequate treatment,

Re. H/Pylori, I had the high dose antibiotic treatment but it still came back and, with PPIs, etc. for Gastritis, acid reflux, IBS, etc. probably messed up my biome/microvilli and depleted B12 further.

I see you are gluten free 🤗 This. together with daily spoonfuls of organic sauerkraut (better than any other probiotic I'd tried) has virtually eliminated all my own digestive problems. Others find 'Symprove' or Bio-cult effective.

In your shoes, if you haven't already done so, I would try writing to GP and, if the injections are not increased, I would consider self injecting?

Very best wishes Susan-Mac for a good recovery.

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Thank you Polaris for all your great suggestions.

Just remind me - what are BNF (guidelines) I've been going on NICE and NHS guidelines for PA.

What gave rise to you being further tested for hpylori ? Whats the GP protocol for a second test ?

Btw PPIs don't agree with me at all - I've tried 3 so I'll definitely accept your advice on the Sauerkraut and/or Probiotics.

I promise you I diagnosed all this myself ! Even given all my Med history my GP didn't ever pick up the need for me to be tested for PA. Now I know so much more I find it incredible it was missed - they've known me for 30 years!!!

Never mind I'm at where I'm at so ........

Have a good day ☺️

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So sorry, I didn't have notification of your further question Susan-mac and have only just seen it when looking for something else !

Well done for doing your own research and not giving up.

To answer your questions re. H/Pylori, it was discovered from an endoscopy after a particularly horrendous bout of Gastritis left me having to be rehydrated and treated with PPIs, then later antibiotics for the H/Pylori. Like many others with Hashimoto's Autoimmune thyroid disease, I also suffered various uncomfortable digestive symptoms for years, e.g. acid reflux, gall bladder problems, IBS as well as gastritis and H/Pylori.

Having already experienced the stress of trying to help get adequate treatment for a close relative, I decided only recently to SI to treat my own B12 neurological symptoms as the BNF guidelines with good results so far,

Your GP will have a copy of the BNF but here is the same treatment taken from the latest BMJ research document, page 4, under 'Parental Treatment'.

cmim.org/pdf2014/funcion.ph...

"If there are neurological symptoms then 1000 μg intramuscularly on alternate days should be continued for up to three weeks or until there is no further improvement.

In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life "

PS. Coincidentally, looking for something else, I came across this research:

ncbi.nlm.nih.gov/pubmed/186...

"There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients."

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"what are BNF (guidelines)"

UK B12 treatment info

BNF (British National Formulary) Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

UK B12 treatment info also in "BSH Cobalamin and Folate Guidelines", about a quarter through document. I gave a copy of this document to GPs.

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Up to date with UK B12 guidelines, I gave a copy to my GPs.

"Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

Think both books mention H Pylori

UK B12 websites

PAS Pernicious Anaemia Society

PAS can sometimes intervene on behalf of PAS members.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left, may take a few days to get a response

martynhooper.com/

B12 Deficiency Info

b12deficiency.info/

Person who runs above website can be contacted by e-mail. Details on website.

B12d.org

b12d.org/

Unhappy with treatment? (UK)

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

I am not a medic just a person who has struggled to get a diagnosis.

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Thank you so much Sleepybunny (interesting tag - I'm intrigued to know how it became to be ☺️)

These links are great to have - I'm delighted now to be able to broaden my knowledge. I feel almost vindicated in my long held belief that a lot of my conditions are indeed interrelated!

I'll not pretend to be able to absorb it all at once as the Neurological symptoms leave me cognitively reduced. Slow but sure wins the race .....or so they say 👍

SM 😁

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