Pernaceous Anaemia?

[Debzeewestmids]

Hi everyone,i'm hoping that someone on here would be able to point me in the right direction,i don't know where to start,but i will give some of my medical history.

Sorry,it will probably be more like a short novel!

My problems started in

2013.

Diagnosed with Costochondritis,which started off as tenderness under my arm,i still have inflamed ribs now.

2014

Started Fluoxetine for job stress,caused Chronic Fatigue,so had to stop after 5 weeks,had a lot of problems,internal tremors,nausea,weakness,internal buzzing feeling,and flu like aches all over body,which lasted 4 mths.

2016

Hysterectomy,ovarian cysts,so went into menopause.

Few mths later diagnosed with Hypothyroidism,which i later found out via Medichecks had Hashimotos,which my Dr still doesn't recognise,he says it's in my family,so it's hereditary!

Also told low folate so took folic acid for 6 mths.,as prescribed.

Started to experience leaky and inflamed bladder and bloating,endless tests and scans,all normal.

2017

saw Chiropracter for help with ribs,prescribed me 10wks naproxen and Omeprazale,after about 6 weeks,they made me feel worse,weak legs,so stopped meds and legs felt ok about 4wks on.

In Nov same year,saw Neurologist because was experiencing pins and needles,numbness in thumbs and weak legs again and still feeling tenderness all over body,particularly my torso,he diagnosed me with Fibromyalgia.

2018.

Couldn't tolerate the hot sweats or Insomnia any more so went on HRT patches,they helped,but i started betting burning feet,they were literally on fire and worse at night,so i thought it was HRT,but it continued regardless.

I started to read up on different symptoms,and decided to take a Viapath test to see if it could be Vit B related.(see pic 1).But i achieved nothing because didn't really understand the results,but it did say it could be thyroid related?

2019

Had abdomen scan because still getting bloating,but all ok,but it was established via Endoscopy i had ulcers so had to take Omeprazole again for a few weeks and my follow up concluded they had healed.

2020

Tried HRT again,because Insomnia really bad again,but stopped them again after about 8mths because of breast pain,and my legs were feeling weak again.

First week in December,my hands started to become jittery,not trembling,but clumsy and my arms felt week ,slightly worse,some days.

My feet still burning bad,but after several tests, Diabetes was ruled out along with other blood tests(see pic 2,3 and 4).

Last week,my ulcers returned,so i had to go back on Omeprazole again,and i can honestly say,my arms and legs have become really weak,worse than ever.I feel like i've taken part in a 3 day Worlds Strongest men Competition!!

I have just read that because i have Hasi's i have low stomach acid and so am more likely to have Vitamin B,(Especially Thiamine)Magnesium,Vit D,Selenium deficiencies?

And also,HRT and Omeprazole,can deplete you of Vitamin B's?

This week,i was so desperate,i made an appointment with a private Neurologist,which i thought was a face to face,but when i got to the hospital,he wasn't there,it was a telephone call!So i got a grand total of 26 mins for the sum of £220,he has arranged for me to have a private EMG test for a further £300 and then a definate face to face to discuss the results.

I have spent hundreds of pounds seeking help with regards to my deteriorating health,to continually being let down and not getting the right support i need.

I feel so lost,my drs can't help me and i don't know what else to do,i've never felt so poorely in my life..

Am i wasting my time and money with my latest resource?

Thank you for taking time to read this lot x

[Akashrajput]

I don't have much medical knowledge but I read your whole story All I can say is you are a strong lady who has went through alot in her life and is still standing firm don't give up keep hopes everything will be alright

Take care ma'am ❤️🙏🏼🌞

[fbirder]

As the viapath report says, your B12 (both serum B12 and 'active' B12) are well within the normal range. Indeed, they are quite a bit above the average.

If you are low in folate you should take supplements. Supermarket folic acid (400 mcg) should be fine if you take one a day.

Can't help with the rest.

[Nackapan]

I wX put on HRT after much resistance to try and reduce migraines which started with b12 deficiency It made me feel so ill aftef s weeks grace.

After a 6 day migraine episode aftef a few days off I was tearful exhausted and felt I had permanent p.m.t.

J weaned off it that took longer than j was on it . A matter of weeks. I think I was far too old to be started on it.

I realises the doctor wanted me then to take xn antidepressant to cover the effects if z sudden drop in serotonin. J didn't. Horrid symptoms. Along with a drop in false hormones

So if it does not suit you I'd stay off it.

Your arm symptoms sound very familiar to my sister who had very low b12 ax coukdnt absorb as well and it turned out to be dietary . Her arm symptoms mucb improved with b12 supplement taken daily now.

Some if your symptoms sound familiar.

Have you had s full iron count with ferritin levels done. ?

Low folate csn give alot if symptoms. Is that at a better level yet?

Vitamin d is that okay.

Are thesds bloods after taking b vitamins. If so that's good ax levels okay.

Is your diet okay,?

Have yih tried an elimination diet to see if symptoms improve or referred to s dietician

There is something called functional b1e defence too.

I really hope you find z good doctor yk join the dots.

Has an intestinal bacteria overgrowth been ruled ouf ?

Its a process of elimination alot of the time .

Keep a record .

[Debzeewestmids in reply to Nackapan]

Sorry about delay,I font get notifications. I have so many problems I font know where yo start.

When I posted that blood test report I a group,I got conflicting advice.Someone said same as you,and others said,it indicated I had PA.

When I 1st had the results,I read it and I read it the same as you.

A few of my results come back elevated,and suggests,it could be due to inflammation or thyroid disease.

My body feels full of inflammation, yet my last CRP test came back at 0.6.i dont understand it,because my ribs have felt on here for the last 8 yrs but I was diagnosed with Costochondritis, but I dont het the associated pain that supposed to come with it.My chest feels like an elephant is sitting on it

My ferritin has been elevated for last 3 yrs,but once again was said could be because of inflammation.

I had an OATs test done in 2019,but only just managed to get a copy of my test results last mth as I parted company with the Functional practitioner, and after looking at them,which I font fully understand,it does day some thing about bacterial overgrowth.

I have so many things going on I dont know what to tackle first.

I already have low stomach acid due to Hashis,so I dont want to take ppis that will supposedly help my Gastritis.

I'm so stressed at moment,and feel do poorly,I haven't got appetite, and I'm losing weight which I dont want to.

I did start taking folic acid a few months ago because it was 5.9 in Jan with Medichecks,but a week later with NHS it was 10.5.

I also have been taking b12 complex liquid aswell.

I ve had folate deficiency before but never had neurological symptoms or weak legs.

I have also started the Vit D protocol aswell

I have also had a few private b12 injections aswell because I feel so desperate.

As I said I dont know where to start.

Thanks for your reply

[Nackapan in reply to Debzeewestmids]

The bacterial overgrowth should be re looked at. Start there.

Ferritin levels do raise with inflammation.

Try and break it down.

List symptoms.

List what you take.

Gp booked for treatment plan and or referrals.

Your chest sounds as though despite your diagnosis hadn't resolved

Get some help from someone closes or who you can trust.

Try and stick to one doctor so the process of elimination at least starts

You will need a double appointment.

Hope you get the ball rolling soon snd get some relief and answers

I initially had high inflammatory markers which went down. I never did get to know the cause? It csn be a responses to pain I think.

[Cherylclaire Forum Support]

Although your total B12 and active B12 (HoloTC) levels look good, the same cannot be said of the rest.

Your folate level is low end of range, your homocysteine is high end and your methylmalonic acid (MMA) level is raised slightly - although at this level (338 nmol/L), it wouldn't be seen as very significant. My level was considered as "mildly raised " when MMA was between 350 -400 nmol/L despite frequent B12 injections (which should quickly bring levels down). Consultants are familiar with levels several times higher than this with untreated severe B12 deficiency.

What happens in B12 treatment is that the loading dose (6 B12 injections usually within a month) should allow all the MMA that has been building up in the bloodstream and waiting to link up with the B12 flooding in to then drop back down to a normal level within range.

Which is why once treatment has started, MMA is not usually tested - unless there is a lack of response to the B12 or a deterioration in condition.

A raised MMA can be an indicator of either a renal problem or SIBO (small intestine bacterial overgrowth). Renal problems can be detected by blood test, SIBO with a fasting breath test.

When my gums were bleeding and hair falling out, I assumed these were just more B12 deficiency symptoms but my GP thought this was to do with either my low folate or my low ferritin -so also put me on a 3 month course of tablets for both. Neither level was below range and in fact my folate level (5.5ug/L ) was higher than your own. The range started at 4.6 ug/L incidentally. It took a couple of years for folate and ferritin to stabilise at a good level- very up and down for a while so needs monitoring.

So you can do something about the folate level. Fbirder suggested folic acid tablets.

You should also get your ferritin and vitamin D checked just in case, as Nackapan suggested.

I have vitamin D tablets on prescription because osteoporosis of the spine was found.

All of the tests I have had done, and all of the consultants I have seen, have been via the NHS - the only test I have had done privately was a full thyroid panel test because the NHS don't do more than TSH and T4, and I have two sisters with Grave's disease which is an autoimmune condition.

I really hope you get some answers.

[Debzeewestmids in reply to Cherylclaire]

Thank you for your response.My ferritin was tested in January and was high,(194),and has been at that level for 2 yrs,but it was suggested it could be caused through inflammation.

[Cherylclaire Forum Support in reply to Debzeewestmids]

Again you seem to be at that level where they often wait and see: over range but not over enough ! For post-menopausal women, 300 ug/L would be considered as "high". Inflammation could possibly be confirmed by serum C reactive protein level also being high.

Again, although CRP range is around 0 - 5 mg/L and normal considered to be around 3 mg/L, a mild inflammation would be between 10- 50 and so there is a remaining grey area.

I'm not a medical expert, I just happened to have looked this up recently for someone else.

[Debzeewestmids in reply to Cherylclaire]

My CRP was considered low in January less than 2 with Medichecks .My vit D with NHS was also over 100 in January.My ESR has always being very high,since my Cosochondritis started 7days ago.The thing is,I simply dont know what to do about any of it,e g help with injections.

[Debzeewestmids in reply to Debzeewestmids]

That should have said 7 yrs not days.

[wedgewood in reply to Debzeewestmids]

Yes , my ferritin was is very high , and it’s assumed that it is the inflammation caused by rheumatoid arthritis ( The “ companion” auto-immune condition to my Pernicious Anaemia.) because autoimmune conditions seldom come alone .

[Debzeewestmids in reply to Cherylclaire]

I spoke to a dr yday,and explained how weak I was feeling,and getting weaker.,and about my neuro symptoms.She read all through my previous tests and scans and said everything seemed fine.I asked about the fact I had Erosive Gastritis,was it Auto immune, and could I have pa because they were B12 deficiency symptoms?She said no,my stomach was o ly inflamed,and B12 isnt absorbed in the stomach,and my FBC results that I had done end of January,were perfectly healthy,so I couldnt have pa.I asked about why were my legs weak,and burning feet,and that I'd always been concerned it could be Diabetes,even though,I'd had several negative tests for this .But apparently, the one test they do doesnt tell the full picture.So she said she would put me forward for an Antigad test,but said they may not agree to do it.I also said I'm so stressed out and anxious,that's making me feel worse,and I have no appetite, she gave me Antidepressants, which I have been totally against taking,since my last bad experience with them,but I need to do something.

I'm so desperate, whilst I am waiting for b12 shots to come from Germany,I have been paying to have them done at a local Aesthetics, I've had 3 up till now,but have had to wait an 3 day for my next one.

Took my 1st antidepressants yday and felt totally spaced out for a while

I don't like taking them,they arent natural, but dont know what else I can do,I feel like I could have a heart attack with all the panic and tension in my body.

[Cherylclaire Forum Support in reply to Debzeewestmids]

I don't have any medical experience, but I do know a scientist: fbirder , who may be in a better position to help you to understand Erosive Gastritis and how that might impact on pernicious anaemia/B12 deficiency.The Anti GAD test appears also to be looking at auto-immune related conditions.

These conditions can often have accompanying auto-immune problems - of which there are many: vitiligo, psoriasis, Grave's disease, Hashimoto's disease, etc. I have heard there are over 100.

[Gambit62 Administrator]

Have you had a kidney panel done to rule out kidney problems?The kidney panel will look at ratio of MMA to creatinine. If that is in range thenit would rule out a kidney problem.

Also suggest that you keep an eye out for falling B12 levels over time - needs to be >20% for serum B12. This would also point to a worsening B12 absorption problem

[Hedgeree in reply to Gambit62]

Hi Gambit62,

When you say to watch out for B12 serum levels falling >20% over time, what time scale is that or is that not relevant?

I'm dyslexic and figures aren't my thing! Sorry if it's a daft question!

[Gambit62 Administrator in reply to Hedgeree]

really any timescale - but think it would be unusual to monitor more frequently than every few months

[Gambit62 Administrator]

Hashi's is an autoimmune disease and most of those have hereditary components but the genes aren't understood.Never heard of Hashi's resulting in low stomach acidity - like most thyroid conditions it can affect the speed at which food transits through the gut which is the usual mechanism sighted for high link between hypothyroidism and absorption problems for vitamins and minerals. Also there is a high cross over between hashi's and PA because both are auto-immune disorders and the chances of developing more than one is very high. PA does cause low stomach acidity.

Article on thyrogastric syndrome

ncbi.nlm.nih.gov/pmc/articl...

[Sleepybunny]

Hi,

From personal experience, I can tell you it is possible to have severe B12 deficiency with a serum b12 level that is well within range. Most of my B12 results were 300 - 500 ng/L when my symptoms were at their worst.

You may want to take a few days to read through the links below.

Some links may have details that could be upsetting.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

Do you think you have any B12 deficiency symptoms?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about being symptomatic with an in range serum b12 result

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

CAB NHS Complaints

citizensadvice.org.uk/healt...

Vital to get adequate treatment for B12 deficiency. untreated or under treated B12 deficiency increases chance of permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

See section on "neurological involvement" in above link if neuro symptoms present.

NICE CKS B12 deficiency and folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems in some cases. See BSH guidelines for more info.

Each CCG/Health Board/NHS hospital trust in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency.

Suggest you track down local guidelines for your area and compare them with BSH/BNF/NICE CKS links above.

If you suspect PA, worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites, B12 books etc

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Sleepybunny]

I'm assuming from your screen name you are in Midlands.

Found these guidelines for Walsall CCG.

There are 11 pages in PDF.

walsallccg.nhs.uk/wp-conten...

Above guidelines suggest doctors should investigate possibility of b12 deficiency if there is a strong clinical suspicion and/or neuro symptoms are present.

Areas can vary a lot in the local guidelines they use so another CCG in the Midlands may be using very different b12 deficiency guidelines.

I have posted other local guidelines from Midlands on forum so may be worth a search of forum posts.

[Debzeewestmids in reply to Sleepybunny]

Wow,thank you for taking the time to give me all that info.I shall start going through it.I've only just got round to reading new messages,I dont get notification, and I've also had problems signing in.

[Sleepybunny in reply to Debzeewestmids]

The forum admins may be able to help with problems.

healthunlocked.com/pasoc/me...