Low VB12 levels and Pregnant

[shaunab87]

Hello

I am 28 and when I was 18 I was told I should be on VB12 injections for the rest of my life.

When I was 21 I changed doctors ( so full health check was done) and they said my levels were up and I no longer need them. I got pregnant 3 months later, I started to feel really unwell, so my doctor took my bloods and they said everything was fine. Later that week I was rushed to hospital with feeling very unwell. The Doctor at the hospital said my vb12 levels was very low and started me with injections right away.

In March 2016 I have stil felt tired and mouth uscler so I requested more blood test and my levels were 1800. The doctors said I must be taken of my injection right away. I have not been having any injections since March 2016. In April 2016 I found out I was pregnant. I have been feeling so unwell, loss of vision, breathlessness, extreme tired, shocks in my body, ringing in my ear, depression, pain in my left side of my body and the lists goes on.

I have been to my doctors and they did blood tests and my vb12 levels are 267 and iron is 23. My doctor said this is fine and no further treatment is needed and I am just having a bad pregnancy.

Yesterday I couldn't breath so I went to a&e and they did my ops and my blood pressure was 74/46 then went up to 96/54 and he looked at my blood results from last time and said everything is ok and I need to go home and rest. He didn't even offer to do anymore blood test.

I am so ill and I feel no one is listening to me.

Can someone please give me some advice. I am worried the baby isn't getting everything she should.

Thanks

[clivealive Forum Support]

Hi shaunab87 Is it possible you can get hold of your medical notes when you were 18 and check what the diagnosis was that led you to be told you would be on B12 for the rest of your life?

If it was Pernicious Anaemia no-one should have stopped the injections and if you were still having them when you were tested in March no wonder they were high and any doctor worth his salt would have known they would be skewed.

The B12 recent level of 267 is very much on the low side.

I'm not medically qualified but I suggest you list your symptoms and go see you own GP and ask him to check back on the original diagnosis when you were 18. It must be recorded somewhere.

I wish you well

[shaunab87 in reply to clivealive]

I have requested these from PCSE England NHS. They said there's is a 2-4 back log.

I have told everything to my Doctor and he just said things change and guidelines change so what was told to me 10 years go may be different now.

I feel like am going crazy because no one is taking me on

[shaunab87 in reply to clivealive]

Hi Clive

I have appointment with my Dr at 7.15pm tonight, what shall I say them? If I mention Pernicious anaemia-society will they take me serious ?

I feel like am just going to appointments all the time and they do NOT listen to me.

[clivealive Forum Support in reply to shaunab87]

Hi shaunab87 I'm sorry I didn't get back to you yesterday but by the time I got back online it was already past your appointment time and anyway the site was "down" (again).

How did the appointment with the doctor go?

[shaunab87 in reply to clivealive]

Hi Clive

I asked him to print my results of so he printed these only. He is sending me for further blood test, because I wouldn't leave until he did.

My haemoglobin is 10.3 (range 11.5 to 16.5)

Red Blood Count is 3.41 (range 3.80-5.80)

HCT is 0.30 (range 0.37-0.47 )

MCV is 88.6 ( range 84.0 -105.0)

MCH is 30.1 (range 27.0-32.0)

MCHC is 340 (range 305-350)

RDW is 14.8 (range 11.5- 14.5)

WBC is 7.2 (range 4.0-11.0

NEUT is 5.1 (range 1.8-7.5)

LYMPH is 1.7 (range 1.0-4.0)

MONO is 0.3 (range 0.2-0.8)

EOS is 0.0 ( range 0.0-0.1)

Baso is 0.0 (range 0.0-0.1)

PLT is 307 (range 150-450)

B12 is 276 (range 211-911

[clivealive Forum Support in reply to shaunab87]

Sorry shaunab87 I couldn't respond last night as the site was down (again) for some reason and anyway I'm not medically qualified to interpret your results other than your RBC is low (which may hint at anaemia) and your B12 is in the grey area.

Hopefully the next results will more positively identify the problem.

[Marz]

I am so sorry you are having such a horrid time. Please buy the book by Sally Pacholok - Could it Be B12. She expresses the importance of good B12 levels in the expectant Mum along with many other important facts. Every house should have a copy of this book as should every Doctor.

You could also contact the Pernicious Anaemia Society by phone and I know in certain circumstances they can intervene and speak with your GP practice. They most certainly WILL hear you.

Go to the top of the page and click onto About and there you will find the contact details. Do not leave it a moment longer - you deserve support.

Take good care and keep on posting

[shaunab87 in reply to Marz]

Hi Marz

I have joined them and he said he's going to speak to the practice Manager.

I am not letting this go and if anything happens to my baby I will take things even further.

I don't think Doctors have a clue about this.

Thank you for your support means a lot.

[Foggyme Administrator in reply to shaunab87]

Good for you Shaunab87. You're right to persist...you need that B12, especially with a little person on board.

GP's are very bad at all things B12 deficient so I'm sending a virtual package of strength to help keep you going 😀.

Good luck with your appointment tonight and please do post again if you need more help.

Take care xx

[shaunab87 in reply to Foggyme]

Hi Foggyme

Well my Dr is now doing something about it. He said I may not need VB12 injections but he is going to look back at my notes to see why I needed them in the first place.

I went to the doctors last Thursday and they said my result were all fine, however tonight the Dr said he felt he needed to repeat them because they are low. How can 2 different Doctors tell you different but both from the same practice.

My haemoglobin is 10.3 (range 11.5 to 16.5)

Red Blood Count is 3.41 (range 3.80-5.80)

HCT is 0.30 (range 0.37-0.47 )

MCV is 88.6 ( range 84.0 -105.0)

MCH is 30.1 (range 27.0-32.0)

MCHC is 340 (range 305-350)

RDW is 14.8 (range 11.5- 14.5)

WBC is 7.2 (range 4.0-11.0

NEUT is 5.1 (range 1.8-7.5)

LYMPH is 1.7 (range 1.0-4.0)

MONO is 0.3 (range 0.2-0.8)

EOS is 0.0 ( range 0.0-0.1)

Baso is 0.0 (range 0.0-0.1)

PLT is 307 (range 150-450)

B12 is 276 (range 211-911)

If anyone could look at these results and let me know your thoughts that would be great.

Thanks

Shauna

[shaunab87 in reply to shaunab87]

My haemoglobin is 10.3g/dl

[Foggyme Administrator in reply to shaunab87]

Hi Shaunab67. Really please your doctors is reassessing 😀. Can't help feeling that if you had injections then, you probably need them now. Your B12 looks as if might be bumping along the bottom but it's difficult to tell without the reference ranges. Certainly, with the little,person on board he shouldn't be taking any chances. At all 😀.

It'll be a bit difficult for people to comment on your blood results without having the reference ranges as well (these are the things in brackets that come after the actual result). Where exactly the results sit within that range is important.

You'll also get more responses if you copy and paste them in a new post and present the anew. Once posts slip down the page they tend to go unnoticed as new ones 'top' them 😀.

And I totally agree about the differences in doctors' opinions. Quite ridiculous and unfathomable! Let's hope the one you're seeing now errs on the side of caution!.

Keep pushing for those injections, B12 at 276 is far too low to effect neurological repair (and you do have neuro symptoms). To,put this in context, , in her book 'Could it Be B12....' Sally Pacholok states that serum B12 levels need to be above 1000 (others say 1500) for effective neurological repair to take place!

And for neuro symptoms, you need injections - not sublinguals.

If you GP says that 276 is adequate, he's wrong! See Sleepybunny's reply and the PAS posts for the evidence. Some print this off and take to show to reluctant GP's (excuse me if I'm repeating something I already said before but my brain's stopping 😖😖.

Good luck to you and babe and keep posting xx

[shaunab87 in reply to Foggyme]

Hello again

thank you so much for your reply. I will post my range on the reply and edit it.

I will not carrying on feeling the way I feel. Today is a good day but been very breathless.

Thank you again. I will look at the books.

xx

[Sleepybunny]

If you had a diagnosis of PA in the past, treatment is for life. There are also other causes of b12 deficiency that require lifelong treatment.

Have you read this UK document "BCSH Cobalamin and Folate guidelines"

Page 8 gives details of UK B12 treatment.

Page 29 outlines process doctors should follow with someone they think is B12 deficient.

PAS (Pernicious Anaemia Society)

I am sure they will listen.

pernicious-anaemia-society....

PAS tel no 01656 769 717 office open 8am till 2pm every day except Sundays and some holidays. May take a few days to get reply.

martynhooper.com/

Other UK b12 websites

b12d.org

b12deficiency.info/ Person who runs website can be contacted by e-mail.

Link about b12 and pregnancy

b12deficiency.info/b12-and-...

Link about writing to GP if unhappy with treatment

b12deficiency.info/b12-writ... Point 14 is about B12 and pregnancy

B12 books

"Could it be b12" by Sally Pacholok and JJ. Stuart. book has chapter on pregnancy.

"Could It Be B12? Pediatric Edition: What Every Parent Needs to Know" by Sally pacholok and JJ. Stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. This is up to date with UK guidelines.

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

Causes of b12 deficiency

b12deficiency.info/what-are...

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

[Ctadds1]

This post is old but wondering how you are. I am pregnant and dealing with B12 issues. Trying to find posts on here for people with similar experience. Thank you