Pernicious Anaemia Society

Where on Earth Do We Go From Here??

Good Evening to all who read this.

My 28 year old daughter is about 28 weeks pregnant with 1st baby. She was diagnosed with low b12 just over a year ago. She had a multitude of both physical and neurological symptoms but her g.p. refused to do anything other than the 6 loading doses and the 3 monthly booster. This was not enough to keep her symptoms at bay, let alone start to repair any neurological damage. We decided to assume responsibility for our own treatment, as I myself have also found out that I have the same problems, again with lots of neuro symptoms including a degree of psychosis. I'm Dad by the way. My daughter has been self injecting hydroxy 1mg on an every other day basis since last summer. When she became pregnant, she did stretch it out to 3 days between jabs but that was slowing down her recovery process. Her obstetrician, I think through lack of knowledge, panicked and sent her to a haematologist. We thought that would be good, at last she can get to see somebody who understands their own speciality (hooray). How wrong can one be.

She has just sent me the following text message:

'Just saw the haematologist. Zero help, was a waste of time. The gist of her opinion was that she would never recommend anyone ever uses injections so regularly. In her experience she has never known anyone with a b12 deficiency to need more than the 3 monthly injection. She suggested I could be doing more harm than good. Now wants me to have another scan to check the growth. She went on to say that some of the preservatives in the b12 injections give a euphoric feeling and suggested that I am addicted to the injection and that I stop from injecting immediately. She said I should just have 3 monthly injections but as I explained my symptoms return she said monthly injections at the most- but made it clear she does not even recommend that. She has also prescribed me a higher dose of folate to take as she says they are unsure of how "overdosing" on b12 can affect folate levels.

Oh I almost forgot, she was very concerned that I was using a sterile and new needle for each jab. Clearly, she thinks I might be some sort of drug addict.'

Well were can we go from this point please? I would be particularly interested to hear from anyone who has gone through pregnancy with b12 deficiency and or self injection.

It is probably not helpful to comment on professional competence, but it does seem that ignorance and arrogance make splendid bedfellows.

Best wishes to all.

6 Replies
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There really isn't a specialism for B12 deficiency - it is used by so many processes that affect so many of the bodies symptoms that it cuts across most specialisms and gets very little attention from any of them as a result. Haematology seems to get pointed out as the specialism because haematology is involved in the diagnosis and probably also the hangover from the name anaemia in the most common cause of B12 deficiency.

On the whole there are so many areas that haematology covers I'm not surprised to find low levels of knowledge but the inability to reference standards (neurological symptoms = 2 monthly maintenance) is always depressing.

Don't know where the comment on preservatives being addictive comes from - really is a completely new one on me ... and really find it extremely unlikely.

Would recommend joining the PAS and contacting them - if I remember properly they have a nurse on staff who specialises in interaction with pregnancy etc.

pernicious-anaemia-society....

5 likes
Reply

Hi,

I've assumed you're in UK.

If you're in another country, patterns of B12 treatment may vary from UK pattern of treatment.

Have you/she considered writing a letter to GP or consultant?

Link about writing letters about B12 deficiency to GPs

b12deficiency.info/b12-writ...

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

"never known anyone with a b12 deficiency to need more than the 3 monthly injection"

If you're in UK, I'm surprised by this statement as in UK, treatment for B12 deficiency with neurological symptoms is a loading injection every other day for as long as symptoms continue to get better then injections every 2 months.

Perhaps the haematologist has never met a person with B12 deficiency with neurological symptoms but then you say that your daughter has multiple neuro symptoms.

UK b12 treatment

1) See BNF (British National Formulary) Chapter 9 Section 1.2

It's possible to get your own copy of BNF from a good bookshop or popular internet retailer.

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

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

2) BSH Cobalamin and Folate Guidelines

Treatment info about a quarter through document.

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

PAS

pernicious-anaemia-society....

Some people on forum join PAS. PAS can sometimes intervene on behalf of members .

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

It may be easier for them to help people with a confirmed diagnosis of PA but they should at least be able to point you to useful information.

Have either of you had tests for PA (Pernicious Anaemia)? Are there any close relatives with PA?

The IFA (Intrinsic Factor Antibody) test can help to diagnose PA but test is not always reliable and it is still possible to have PA even IFA result is negative (called Antibody Negative Pernicious Anaemia)

My experience is that some GPs are unaware of the possibility of Antibody Negative PA.

Flowchart below mentions when to diagnose PA and Antibody Negative PA (BSH Cobalamin and Folate Guidelines)

stichtingb12tekort.nl/weten...

Risk factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Are you in a position to go private? Although I would add that this is no guarantee of better treatment.

HDA patient care trust

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

hdapatientcaretrust.com/

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

3 likes
Reply

Well, if this haematologist has never met anyone who needs more than 3 monthly injections , we could introduce him/her to a lot of people !

This is awful for your daughter, her pregnancy should be a happy time, not filled with sniping doctors.

If the midwives are happy with the baby's growth, scans are normal then I think there's far more harm likely from too little B12.

The next 12 weeks will be tiring for your daughter, last part always is. I hope your daughter can relax and enjoy the wait for her new baby.

P.S and if there's any "euphoric" feeling from B12 injections, I've yet to feel it !

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Your daughter needs to have her folate and ferritin levels checked. I would also suggest she has her thyroid checked.

PA/B12 deficiency are linked with issues with thyroid (over active and under active)

I recently read somewhere that women with B12 deficiency need to be careful as the baby will draw down on every vitamin...etc so pregnant women do usually have to have increased injections during pregnancy and whilst breast feeding to over compensate.

Now B12 is not something a person can overdose on. However as i mentioned earlier she needs to find out what her folate and ferritin levels are, as both of these need to be balanced with the B12 intake in order to be effective. Otherwise the liquid being injected will not be absorbed. Which may be your daughters issue.

However i must commend your daughter for not punching any of her doctors. I have been told that my symptoms running up to my next injection ' are all in my head ' i think if i was pregnant i would use the 'baby hormones' excuse to physically slap them. It must be so frustrating for her. I completely emphasise.

I have been researching the pregnancy side myself so i can prepare myself for what i will have to deal with.

So i hope she gets the help she requires. I agree with one of the earlier posts though. If your daughter rings the Pernicious Anemia Society they should be able to help and also point her in the right direction.

Your daughter may have to book in with a private doctor/pay for private tests. As if your in the UK, you will have little to no chance of squeezing another referral from your doctors.

Fingers crossed for your daughter and her baby.

1 like
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Hi,

There is a section on "B12 and Pregnancy" on the "B12 Deficiency Info" website. I did find some of the info rather upsetting though.

Is your daughter aware of potential problems with nitrous oxide? Nitrous oxide is in "gas and air mix",used in pain relief in labour and in anaesthesia. Nitrous oxide can inactivate B12 in body. See link below

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

There are stories in book "Could it Be B12" by Sally Pacholok and JJ. Stuart about effect of Nitrous Oxide, quite upsetting...

Also stories on Martyn Hooper's blog

martynhooper.com/2015/08/22...

I looked at pregnancy pages on NHS website and could not find a mention of the risk of nitrous oxide inactivating B12 so it's possible that midwives etc may not be aware of this. I suspect long exposure to "gas and air mix" during labour was part of my problems.

I am not medically trained.

Reply

Wow I'm sorry that your daughter is being treated this way during her pregnancy so stressful. I am currently 7 wks postpartum and am trying to figure this all out. I was diagnosed with B12 deficiency in the beginning of my third trimester. I also have celiac disease. I received all the loading doses of cynocobalamin 1x daily for 7 days then 1x a week for a month then to 1x a month. My baby was born very healthy. Now in my postpartum period I have realized that u need much more b 12 and have now developed a folate deficiency as well. I don't really have any answers for you as I am still not well having lots of neuro symptoms myself but hope your daughter can find some comfort from my experience... I wish you and your family all the best with your new baby:)

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