New interloper from a neighbouring fo... - Pernicious Anaemi...

Pernicious Anaemia Society

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New interloper from a neighbouring forum - advice please

Daisywhoopsa profile image
12 Replies

I’ve put a very potted history in my bio. My question is- of the recent blood results, which would be the most useful to post seeking guidance from you knowledgable folk? I seem to have had everything and chips done by GP- not complaining.- and started a course of B12 injections. But from the results so far the only action is to repeat ESR and CRP in 4 weeks. I am wondering whether (as with thyroid tests) what may be ‘in range’ when viewed within the bigger picture may indicate an issue. For example I do have low but in range ferritin despite taking ferrous sulphate on alternate days. Which of the results are the ‘indicators’ I need to be checking. I’m convinced there is more going on in my body than just Hashimotos. I best describe it as trying to wade through treacle whilst wearing a suit of armour. This is along with chronic pain, burning/tingling hands and feet, hair loss, tinnitus, joint pain and bruising to name a few.

Many thanks in advance

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Daisywhoopsa
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12 Replies
Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum Daisywhoopsa.

I'm sure you'll find some help and support here.

I read from your profile page that the GP is considering PA as a possibility.

Have you considered joining PAS (Pernicious Anaemia Society) who can offer support and pass on useful information?

PAS membership is separate to membership of this forum. You do not need a confirmed diagnosis of PA to join PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA

pernicious-anaemia-society....

I've also read that a pepsinogen test help to diagnose PA.

I hope your GP is aware that a negative result in the Intrinsic Factor Antibody test does not rule out PA. It's possible to have Antibody Negative PA.

Some links I post may have details that could be upsetting.

B12 deficiency is not always as well understood as it should be by health professionals so I think it pays to be well-informed.

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

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates covering a variety of situations linked to B12 deficiency.

Point 1 is about being under treated for B12 deficiency with neuro symptoms present.

NHS Complaints

patients-association.org.uk...

Care Opinion website

careopinion.org.uk/

Local MP or devolved representatives may be worth talking to if struggling to get adequate treatment.

UK B12 documents

NHS article about B12 deficiency and Folate deficiency (simply written)

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

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF link below outlines two patterns of B12 treatment

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

As you have mentioned tingling, burning and tinnitus, I would expect your GP to put you on the second pattern, for those with "neurological impairment"

NICE CKS (Clinical Knowledge Summary) B12 deficiency and Folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(over 40 pages).

Local B12 deficiency guidelines

CCGs (Clinical Commissioning Groups) in England were replaced by ICBs (Integrated Care Boards) on July 1st 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.

Each ICB/Health Board is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

To find local guidelines

1) Try a search of forum posts using term "Local guidelines"

2) Try an internet search using "name of ICB/CCG/Health Board B12 deficiency guidelines"

3) Submit a FOI (Freedom Of Information) request to ICB/Health Board asking for a copy of or a link to local B12 deficiency guidelines

Read blog post below if you want to know why I urge UK forum members to find out what's in their local B12 deficiency guidelines.

b12deficiency.info/gloucest...

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

UK BNF treatment info in book is out of date. See BNF hydroxocobalamin link.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

Misconceptions (wrong ideas) about B12 deficiency

Many on this forum have met health professionals with wrong ideas about B12 deficiency.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

I am not medically trained.

Daisywhoopsa profile image
Daisywhoopsa in reply toSleepybunny

Thank you so much for the info- guess what I’m doing this afternoon? I recognise some of those links from the limited research I’ve done recently but no doubt there will be much more info from the links you’ve provided. I’m currently not working so have limited funds for supplements and/or subscriptions but thank you for the advice. No doubt I will be back with more questions.

Sleepybunny profile image
Sleepybunny in reply toDaisywhoopsa

If you have any spare time ......

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Please come back with any questions you have. There are lots of helpful people here.

Some people find they cannot manage on the level of treatment that NHS gives them and as a last resort some turn to treating themselves.

wedgewood has written some helpful posts about getting supplies.

There is a petition to get injectable B12 available over the counter in UK.

change.org/p/dr-june-raine-...?

Tracy Witty of B12 Deficiency Info has campaigned on this issue for 8 years.

b12deficiency.info/eight-lo...

Narwhal10 profile image
Narwhal10

Hi Daisywhoopsa,

Welcome here. Sorry to read you are unwell and I know Sleepybunny has given you quite a lot of information to read so I’m not going to add to it when you’re wading through treacle. (Fatigue is hideous).

I cannot find the direct link but have know for 2 years that we need really good ferritin levels when receiving B12 injections. I’m talking 60 - 80 micrograms/L.

That’s why it’s always good to have a print out of our blood results. Plus keeping a symptoms diary.

Best wishes

Ghound profile image
Ghound in reply toNarwhal10

Hi, As Gambit says; you do have to be careful with iron supplementation, but I also agree with you Narwhal.

I dont feel well unless my ferritin level is at least 60.

Unfortunately my iron deficiency anaemia has NEVER been picked up by a Full Blood Count , only by ferritin tests.

Just something to bear in mind in relation to testing .

Best wishes x

Gambit62 profile image
Gambit62Administrator

ferritin is a secondary indicator of iron status and whilst it is generally a good one there have been instances where medics have acted on ferritin alone and an iron overdose has been the result.

If you have had a full blood count and nothing in that indicated iron deficiency I would go with that rather than obsessing about the ferritin figure.

Unfortunately the symptoms you mention could be down to a number of conditions - including thyroid and B12 deficiency. Recovering from B12 deficiency can take a while - and if you had signs of macrocytosis in your blood work that will take a month to clear - and macrocytosis affects the efficiency with which your cells carry oxygen from the lungs.

It is possible to have a mix of microcytosis and macrocytosis going on - which should result in an elevated RDW without any other explanation (eg a deficiency of iron, folate or B12 that was being treated at the time blood was drawn).

FlipperTD profile image
FlipperTD

Scientist, not medic.

Fascinating facts about some tests:

The ESR is a general screen, about as specific as taking your temperature. If raised, soemthing's wrong. If normal, doesn't tell you much. The same goes for CRP. ESR was introduced when we were trying to find a test that would indicate pregnancy. In pregnancy, ESR goes up; unfortunately, it goes up in just about everything else too. ESR goes up steadily, CRP goes up quickly. Typically in any inflammatory condition. Eventually, the ESR resolves when convalescing.

Many blood tests take very little time but use some elegant technology. The ESR takes an hour, and needs nothing other than to be left alone, to stand vertically, without being moved. It has been automated, but the manual method still works.

I realise I've rambled off topic, but it wouldn't be the first time!

Good luck. We are here to try and help.

Narwhal10 profile image
Narwhal10 in reply toFlipperTD

Nice to see you and I personally love learning the extra information you provide.

FlipperTD profile image
FlipperTD in reply toNarwhal10

Hi. You're in danger of me rambling off into the sunset, talking about what causes the ESR to be raised, but we can leave that for another day. But let's say it's all about the formation of 'rouleaux'.

Narwhal10 profile image
Narwhal10 in reply toFlipperTD

thank you 😃

Ghound profile image
Ghound in reply toFlipperTD

😄 x

Ghound profile image
Ghound

Hi Daisywhoopsa,

Glad you saw my reply to Narwhal 🙂

As I'm sure you already know, B12 deficiency, thyroid and other disorders can coexist and also iron deficiency with B12 deficiency.

I hope you will start to feel better very soon, best wishes x

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