new to the group and in need of guidance please

[klb7572]

Good afternoon everyone! I am looking for some guidance as to how to gain some control over my health again. My story is that i practiced as a midwife from 2006 to 2015 in un-scavenged birth rooms meaning i was regularly exposed to nitrous oxide often for many hours at a time (funnily enough, the operating theatres were scavenged?) . My health started to decline around 2011 the main symptoms being fatigue, reduced cognitive functioning and eventually got so bad i left my much loved career..my brain would not function well enough...i wasn't going to put my women at risk. Ive been treated for an under active thyroid which has been a long stressful journey but finally in 2021 my levels are optimal apart from a raised Tg antibody. Ive always felt that there was something underlying causing problems but the symptoms of b12 deficiency and UAT can be very similar and my NHS gps are not great. Ive had low normal serum b12 levels and a persistent under range folate level. I convinced my GP to give me a trial of the loading doses. I remember reporting to feel much much better but obvs wouldn't prescribe me more than a monthly shot which i felt was not enough and ordered from Germany. Of recent times my injecting has been haphazard and due to many reasons and i know i should have done better with this and trusted my knowledge and instincts. My last b12 injection was Feb time.i am now under a private doctor who prescribes my thyroid meds so i often do a medichecks blood test...the last one was march. they test active b12 and which came out as normal at 117 but my folate was under range. the doc felt that a 1000iu daily oral supplement was enough and to commence methylfolate but since then i seem to have developed a low grade jitter and this week i notice that part of my right foot is numb (my footwear is flat and sensible so i dont think that has caused it). My memory is poor and i find it hard to recall info. Fatigue persists. Ive tried to order from Germany today but they are not posting to the UK . I feel worried about trying an nhs gp again as private care is very expensive. Does anyone know of a specialist doctor that might take notice of my past nitrous oxide exposure ? Any help will be greatly appreciated. Thank you x

[Nackapan]

Firstly some are managing to order from Germany sti.Most if us on here self inject whether it's totally or topping up NHS prescriptions.

I woukd write to your Gp.

You are in the know.

Letters csbt be ignored.

Its always good to have on your notes.

B12 shoujd be treated before fokate.

Tge Pernicious anaemia Siciety coujd help you

They have ongoing fir medics too!

Alot of symptoms cross over.

It is fairly common to have both.

Have you ever had an intrinsic factor antybody test.

J used to assist midwives many yesrs ago .

I know the exposure you have .

I didnt know at the time the connection with depleting b12.

It depends if an absorbtion problem or not ?

Possible if depleted through work environment a hogh oral tsbket coukd work??

Hope you get it sorted very soon

[klb7572 in reply to Nackapan]

Thank you so much xx no no intrinsic factor taken

[fbirder]

Nitrous oxide can deactivate B12 in the body. But it has no long-term effects. After 5 years your B12 should be the same as if you'd never encountered nitrous oxide.

[klb7572 in reply to fbirder]

Thank you

[Nackapan in reply to fbirder]

Yes that makes sense in my case as so long ago 5 yesrs exposure. So 12 must've restored naturally as unaware.

Interestingly in thst time frame I wanted my iron checked as fatigue bad.

Iron level good.

It might have been a dip in b12 or the 84hr week night shifts we did on a 4 weekly rota !!

So shoukd be some sort of protection lije in theatre for long term workers in that environment??

[wedgewood]

Just to assure you yjatbypu can get supplies of Rotexmedica B12 depot (Hydroxocobalamin ) from some German online Pharmacies . Will look some up and post to you tomorrow . I don’t think you will find any doctor who specialises in B12 deficiency.

[klb7572 in reply to wedgewood]

thank you..i appreciate that...no i already had that sinking feeling to be honest x

[wedgewood in reply to wedgewood]

German online pharmacies which will deliver to U.K. ( all approved by German Health authorities .

bodfeld-apotheke.de

You will need a translation app or use Google Chrome .

This pharmacy will only accept payment by Bank transfer . Easy if you have mobile or online banking .

apotheke-marienbrunn.de

Also only in German

apohealth.de

Obtainable in English by clicking on the American flag .

( I purchased 100 ampoules from this pharmacy , which only had 1 year left of use-by date , and I’ve always had at least 2years elsewhere . So don’t order more than you can use in a year . )

Remember to search for

ROTEXMEDICA B12 DEPOT

DEPOT is lmportant . It indicates Hydroxocobamin Without DEPOT you will receive Cynocobalamin , which would work , but you need to inject more often .

Hope this helps -Best of luck .

[deniseinmilden]

Hi!I'm so sorry to hear this - another poor midwife.

I must go to work now but if you want to look through my replies there is some information in there.

There is lots of amazingly good information from Wedgwood (see below) Sleepybunny and

Foggyme

[deniseinmilden]

There is another lovely ex midwife in exactly your position on a Facebook group which I belong to. If you'd like to be in touch with her let me know and I will try to work out a way to connect you.

[klb7572 in reply to deniseinmilden]

Yes I would like to get in touch with her .. thank you! X

[deniseinmilden in reply to klb7572]

I've sent her a message. 👍

[klb7572 in reply to deniseinmilden]

Brilliant.. thank you ! 😊

[deniseinmilden in reply to klb7572]

I've sent you a direct message. 😀

[Sleepybunny]

Hi,

Hope some of the info below is helpful...

Some links may have details that could be upsetting.

Nitrous Oxide

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Blog post by a midwife that mentions nitrous oxide

midwifediaries.com/blog/vit...

BJM article

britishjournalofmidwifery.c...

Other articles about nitrous oxide/B12 deficiency/midwives

oem.bmj.com/content/60/12/9...

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.

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....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

If neuro symptoms are present, have you been referred to a neurologist?

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates that people can base their own letters on.

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

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.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

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...

HDA patient care trust

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

Currently not taking on new cases.

hdapatientcaretrust.com/

Local MP/devolved representative may be worth talking to if struggling to get treatment.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Summary of above document

pernicious-anaemia-society....

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

stichtingb12tekort.nl/engli...

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 Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

BNF Hydroxycobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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

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

Local Guidelines

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. If you're in UK, I suggest tracking down the local guidelines for your CCG/Health Board and comparing them with BNF/NICE CKS and BSH links.Some of these local UK guidelines have been posted on this forum so may be worth searching forum posts.

I hope you are not in the UK area mentioned in blog post below.

b12deficiency.info/blog/202...

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.

If you think PA is a possibility, I suggest joining and talking to PAS who can offer support and pass on useful info.

PA is an auto immune disease and having an auto immune condition already or having them in the family can increase the risk of developing them.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Another auto immune condition that can lead to B12 deficiency is coeliac disease.

Have you been tested?

See guidelines below which suggest that anyone with unexplained B12, folate or iron deficiency should be tested and anyone with a first degree relative with coeliac.

From personal experience, some UK GPs may not follow all the recommendations in the document below.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

I've written some other very detailed replies in the threads below .....

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

I hope you find a doctor who will really listen to you.