Help please I'm PREGNANT: Good... - Pernicious Anaemi...

Pernicious Anaemia Society
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Help please I'm PREGNANT

Yoshi12
Yoshi12

Good afternoon.

I have had this text message this afternoon from my GP.

'Thank you for your enquiry about B12 injection.

Your records show that immunological blood tests for Pernicious Anaemia have been normal, therefore it is safe to have B12 injections 6 monthly.

To help reduce Coronavirus transmission, I would strongly urge you to postpone this injection by 3 months'

I'm so upset. They didn't even call to discuss this with me.

I've had the classic journey of endless struggles.

I had b12 deficiency and folate anaemia in 2016 and had loading doses and no further follow up injections as bloods 'normal' then levels dropped from 700 to just over 200 so they agreed them again in 2018 and been on 3monthly injections since. My IFAB test did come back negative.

Can some one please send me all the links to fight this with the GP. I'm 12 weeks pregnant and don't want any harm to come to my baby due to lack of knowledge from healthcare professionals. I'm presecibed iron tablets for pregnancy related iron deficiency anaemia by the midwife and I'm often low in vitamin D too so take over the counter supplements.

I'm using the better you b12 spray and take a vitamin B complex supplement daily. I am not a vegetarian.

I also have a heart condition deemed as an arrythmia called inappropriate sinus tachycardia and treated with beta blockers. Due to this my pregnancy is deemed high risk.

Thanks in advance for your help and support. Can't stop crying. I'm going to ring PAS tomorrow as I'm a member.

Xx

16 Replies
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Write to your doctor and ask them to read the very first entry for hydroxocobalamin in the British National Formulary, BNF. The bit that says...

Prophylaxis of macrocytic anaemias associated with vitamin B12 deficiency

By intramuscular injection

For Adult

1 mg every 2–3 months.

So, if you have a B12 deficiency then you need to have injections every two to three months to prevent you from getting macrocytic anaemia. No mention of the cause of the deficiency.

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

Yoshi12
Yoshi12 in reply to fbirder

Thank you very much. I'm building lots of links, websites and information to put in a letter. Xx

Hi,

I think you are right to ring PAS as soon as you can.

There may be some disruption to helpline during the pandemic.

Being pregnant makes you a special case.

Some of the info in links below may not be appropriate for women who are pregnant so important to discuss your concerns with a medical professional.

Some of the links/articles mentioned below may have info that could be upsetting so worth getting another adult in the family to read through them with you.

Hopefully PAS can pass on some useful info to you.

See their leaflets/articles section which I think has an article on B12 deficiency in pregnancy.

pernicious-anaemia-society....

Link from B12 Deficiency Info website about B12 deficiency and pregnancy

b12deficiency.info/b12-and-...

I am not medically trained.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

I suggest putting concerns into a letter to GP . In UK, letters to GP are supposed to be filed with medical notes. Letters link above has templates for people to base own letters on.

CAB NHS Complaints

citizensadvice.org.uk/healt...

In normal times, might also be worth talking to local MP if struggling to get treatment.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Negative IFAB

A negative result in IFAB test does not exclude the possibility of having Pernicious Anaemia.

Martyn Hooper, chair of PAS tested negative several times before finally testing positive.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

I believe above document mentions pregnancy.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

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

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

Injections stopped due to pandemic

Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.

From PAS website

pernicious-anaemia-society....

There are lots of comments under the posts as well.

From B12 Deficiency Info website

b12deficiency.info/blog/202...

Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.

b12deficiency.info/blog/202...

Most recent blog post about stopped injections

b12deficiency.info/blog/202...

Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.

I wrote a detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, B12 books, B12 websites and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

Yoshi12
Yoshi12 in reply to Sleepybunny

Thank you this was exactly what I wanted thank you so much. My info I was worried was out of date. I want to be fully armed with the correct info. I did a lot of reading at diagnosis in 2016 and I'm aware of complications in pregnancy but thank you for the warning. I was also aware of Martyn Hooper's diagnosis and I think I only had one test around diagnosis. Thank you so much I really appreciate this. I'll phone PAS in the morning. Thank you

If you can't get through on the phone try an email. My email enquiry was answered in 48 hours and you could always ask for a call back if helpline is busy.

Best wishes

Ellie

Yoshi12
Yoshi12 in reply to ellj

Wonderful thank you. I'll try tomorrow morning and I'll email if I do not get through. Thank you for sharing your experience. Xx

Sleepybunny
Sleepybunny in reply to Yoshi12

I'd always suggest putting serious concerns in writing (to GP) even if they have been discussed face to face, along with a request to file a copy of any letter with medical records.

Always keep your own copies of letters/e-mails as GPs sometimes mislay their copies.

I think it's important to have a paper trail in case there is a need for future complaint.

Copies of letters can be proof that the issue has been raised in the past.

Yoshi12
Yoshi12 in reply to Sleepybunny

Thank you. I will be writing a letter to add to my file. I agree a paper trail is important. Thank you. Xx

Hi again,

Were you ever tested for Coeliac disease?

If you were, check which blood tests were done.

UK patients shoudl be able to access at least a summary of their medical records online. Details will be on GP surgery website.

UK GPs are supposed to do two tests

1) tTG IgA which checks for antibodies to gluten.

2) Total IgA which checks which patients have IgA deficiency.

The second test, Total IgA is often not done.

It's an important test as patients with IgA deficiency will test negative on tTG IgA test even if they have Coeliac disease. There are other Coeliac tests a GP can order for patients with IgA deficiency. See link below.

NICE guidelines Coeliac Disease suggests anyone with unexplained B12, folate or iron deficiency should be tested plus anyone with a first degree relative with Coeliac.

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

Coeliac Blood Tests

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

Another reason for a negative test result...

If you were tested for Coeliac in the past, were you told to eat plenty of gluten in more than one meal per day for several weeks before the blood was taken for the tTG IgA test?

People with Coeliac disease may get a negative test result in tTG IgA test if they weren't eating enough gluten prior to the tests due to the body not producing enough antibodies to gluten to register a positive result.

What does your GP think caused your original low B12 results in 2016 and 2018?

At some point, it might be worth asking GP a direct question.

Other causes of B12 deficiency include

Diet

Do you eat plenty of B12 rich food eg meat, fish, eggs, dairy, foods fortified with B12?

If yes to plenty of b12 rich food then diet as a cause may be less likely and it is more likely that there is an absorption problem in the gut eg PA, Coeliac etc.

If you eat a B12 rich diet, is your GP aware that you do?

GPs sometimes assume that diet is the cause without asking detailed questions about diet. may be worth giving GP a copy of typical weekly diet, food and drinks.

H Pylori infection?

patient.info/digestive-heal...

Exposure to Nitrous Oxide

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

For future reference, gas and air mix (which is often used for pain relief during labour) contains nitrous oxide. Nitrous oxide inactivates B12 in the body, it's possible that some midwives may not be aware of this.

Internal parasites eg fish tapeworm

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

"I'm 12 weeks pregnant and don't want any harm to come to my baby due to lack of knowledge from healthcare professionals"

PAS website has section for health professionals that your GP may find helpful.

pernicious-anaemia-society....

B12 books

Some of the case histories in these books can be upsetting.

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info. See BNF link in my other post.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

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

Very comprehensive with lots of case studies.

Good luck and I hope you get the treatment you need.

Yoshi12
Yoshi12 in reply to Sleepybunny

Thank you. I did have some cealiac testing but said normal and I'm not sure what tests were done. I was not told to change my diet before testing.

I have always eaten meat and diary products but have increased this intake since my b12 and folate were originally low so Im more aware of it now.

The only investigation they did was the intrinsic factor and if I remember that was after I had a couple of loafing doses. At some point after pushing I did see a gastro consultant where I had the cealiac tests and came back normal. They knew my diet was ok and I also take lots of vitamin supplements now and sublingual sprays of b12 and vitamin D but still cannot maintain my levels on my own.

My folate and. Vitamin D were low in the summer on private testing but the GP just said take over counter supplements which I was already doing. The iron has not been low since about 2007 which is good but drops lower end but they said they were not concerned. I've literally asked for everything and my doctor just does now care or want to do more. I've done my own MMA and homeocysteine tests too but these were all after starting injections. The homeocysteine came back abnormal and was advised could be another b vitamin pyridoxine I think. Asked GP about this and they had no clue.

Thanks for the links, books and advice for the gas and air. I'm just worried about my baby right now getting the right nutrients from me.

Thank you so much for you help and support. E

Xx

Sleepybunny
Sleepybunny in reply to Yoshi12

Hi,

"I was not told to change my diet before testing"

"I did see a gastro consultant where I had the cealiac tests and came back normal"

If you didn't have Total IgA test and weren't eating much gluten before blood was taken then it's possible that the results of Coeliac blood test are not reliable.

I suggest you try to access your results from this time or when things are more normal in GP surgeries, try to get another set of Coeliac tests. It's possible to get these tests done privately in UK.

Do you have anyone in the family who has Coeliac disease, PA or other auto immune conditions?

Did the gastro consultant carry out a gastroscopy and/ or colonoscopy? These procedures can sometimes spot inflammation in the gut; gastritis.

"The homeocysteine came back abnormal"

High homocysteine levels can be linked with B12 deficiency.

Homocysteine is mentioned in the BSH Cobalamin and Folate Guidelines. See link to these guidelines in my first post.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Homocysteine

labtestsonline.org.uk/tests...

If you look at section on How test is used, it states that it is sometimes used where GP suspects B12 deficiency and/or folate deficiency.

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Copies of the books I mentioned may be available from UK local library services once these restart after pandemic is over.

They refused to give me my injections when I fell pregnant, then refused to restart them once I'd had my baby. I wasn't assertive and just accepted it. Seven years later I'm self injecting as I get short shrift from my GP and my medical records from the time have conveniently 'disappeared'.

Don't accept 'no'. I wish I hadn't - but at the time I didn't know about any online support groups. Good luck.

Yoshi12
Yoshi12 in reply to Littleisland

Thank you. It's all about the coronavirus at the moment. I will fight thank you. Composing a letter to drop off this weekend whilst no one is in with all the links and info everyone has sent me. Fingers crossed. Thank you for sharing your experience. Xx

I spoke to PAS this morning who were very helpful understanding and sympathetic. They have me some ideas also so thank you. Xx

Hello everyone.

Just an update. I wrote a letter to the GP over the weekend and attached copies of some of the information shared. My GP called me today and apologised and agreed for me to self inject at home. They offered me to come to the surgery if I wanted and I said self inject would be better in this current pandemic. They will prescribe me the needles etc and they said they will consider self injecting as a possible option for other patients.

Yay!!

Thank you everyone for your replies and support. I could not have done this without you.

So please keep up the fight and don't give in!

Xx

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