Hello long time no post!

[BluebellPettle]

Hello

I first posted a few years back and with your help came to the conclusion that I was low in b12.

Things Have moved on! But for context

I continued to query my b12 with doctors, to no avail.

I feel pregnant Oct 2018, again asked for my b12 to checked early in my pregnancy. It was ‘normal’

Around 35 weeks pregnant I was diagnosed iron deficient and asked to supplement iron by midwife

Around 37 weeks pregnant I went in, expecting a blood test to which the midwife said there was no point.

I however had already requested this via the GP and yes included b12.

On the Friday that week I had a panicked phone call from one of the Drs ( locum) asking me to confirm I was 38 weeks pregnant. My b12 was 63 and I needed to come in urgently for treatment. And please don’t go into labour over the weekend.

Oh and praised the midwife for checking my b12.

(!!)

I went in on the Monday had my first loading dose

1 every other day for 2 weeks.

I think I was so relieved to finally being treated plus the injections took me up to 40 weeks pregnant, plus an argument with the surgery as they cancelled my last dose and said I could wait for it (!) I forgot to check the procedure for loading doses if displaying neurological symptoms!

So fast forward to now.

I had 6 loading doses, then 1 injection every 8 weeks, until last week when they refused and said I was ‘early’.

A Gp had apparently requested I be tested and be treated every 12 weeks as per their policy.

I refused the b12 test, said they could test mr ferritin as I had discussed this with gp previously ( I am still taking spatone occasionally).

I had no injection, it will be 10 weeks on Tuesday.

I emailed a complaint that day. Then rang the practice manager every day until she finally rang me today.

I also booked an appointment with the gp on Thursday ( phone) she didn’t ring. Because ‘they decided it wasn’t urgent’.

Their argument was ‘ who told you it was every 8 weeks’.

Cue nice guidelines, dr who picked up my results etc.

As of today she miraculously found ‘8 weeks’ written down not in my notes but on ‘therapies’?

So Monday I have my injection booked in.

Well done if you’ve got this far 😊

If it wasn’t for the initial replies on this group I wouldn’t have got this far and known about my b12. So thank you.

I’ve looked back and I can reflect on my symptoms.

I am not as tired as I used to be, I used to nap all the time. And now I Have a baby!

Had my first nap today for months ! Go figure.

However I believe I still have neurological symptoms, brain fog, memory, forgetting words - I do this frequently.

Pains/ stiffness In hands and dizziness and breathlessness crept back this week.

So my questions are

Do I push for more loading doses?

Bearing in mind this week has been stressful with surgery.!

Baby

My concerns that my daughter might be b12d are always in the back of my mind.

Do I need to ask for the intrinsic factor to be tested? Will this tell me WHY I am deficient?

How do I know if she is? I would rather not put her through any tests.

I am

Breastfeeding also, so could it be that

My injections are helping her currently?

At this stage as they have agreed to keep my 8 weekly injections now. I will consider self injections. And refuse further b12 testing.

Would this be ok with breastfeeding?

Thank you!

[Ctadds1]

Thank you for your post and congratulations on your little one! I’m by far no expert and new to this all. I have read that breastfeeding requires additional B12 so that may be why your symptoms are returning a bit. I would say ask for more frequent injections for a bit or try supplements maybe. I was very happy to find your post. I am currently recovering from B12 deficiency but I am also considering pregnancy in the not so distant future. In a perfect scenario I would wait but I am getting older and I do not want my children to be aged too far apart. My doc has told me B12 injections are safe during pregnancy and that I will continue to recover during pregnancy as long as I’m getting enough B12. That being said I’m still terrified! Your post has given me some hope. I too worry my child will also be deficient because I have found out it seems to run in my family ( my mother and brother also found out they are deficient). Again thank you for your post and good luck to you

[BluebellPettle in reply to Ctadds1]

Hello thanks for your reply.

I hadn’t read that bf needs additional 12 although it doesn’t surprise me!

The trouble is my symptoms have returned now as they refused my last injection and am now 10 weeks without. However I notice around week 6/7 hence when I know my due!

I don’t know whether to push for more frequently than 8 weeks due to the latest saga. I’m not sure I have the time or energy.

With regards to your pregnancy, are you receiving injections now?

If not my advice would be to fight for them. Even I though I asked for me to be checked when I was pregnant but when they finally agreed it was too low at 63 and having treatment that late on my pregnancy put me under an ernomous stress and I didn’t give birth until 43 weeks and I firmly believe this was a contributing factor- there was oxytocin following for me!!

If you’re already on injections, yes don’t worry about them and pregnancy, all was fine I just wish I’d had them earlier.

I have no idea how I was functioning and working at 39 weeks and b12 of 63!

Good luck with treatment and pregnancy 😊

[fbirder]

"Their argument was ‘ who told you it was every 8 weeks’."

Me: The British National Formulary. I'm surprised you haven't heard of it.

[BluebellPettle in reply to fbirder]

I quoted nice guidelines. The HCA said it’s 12, I said not it’s not so she googled and then clutched onto but it’s ‘2-4 months’ 🤷🏻‍♀️

[Showgem]

Congratulations on your new baby girl. Unless diet related your extremely low b12 is probably PA, you should have had a IF antibodies test, however if negative you could still have PA as antibodies don’t always show up.I would send for b12 supplies and self inject and also get them to test your babies b12 level ASAP.

[BluebellPettle in reply to Showgem]

Thank you.

I’ve been having injections every 8 weeks for 16 months ( since baby was born)

( apart from this months saga!)

Would it still be beneficial to get the IF antibodies test now? How accurate is it?

They have now agreed to keep my injections at 8 weeks. After a week of emails and phone calls.

I’m not sure whether to push the fact that I should have had more doses due to neurological symptoms 16 months ago.

They’re still there and haven’t gone away.

Or I have also been considering topping up myself with SI.

Re baby

Serum test? I’m not sure how I get a active b12 test?

Thank you

[Cherylclaire Forum Support]

Well ,considering your B12 was so low, "discovered" so late, and that you were pregnant, too - they aren't being very accommodating, are they ?

Don't even seem to have done their homework retrospectively.

With neurological symptoms, the treatment should be every other day until no more improvement can be gained - then reviewed (ie not decided in absentia) , then every 2 months.

"Decided it wasn't urgent" and refusing you an injection for being "early" - starts to make you wonder what your initial "normal" level really was! Normal to 63 (whether ng/L or pmol/L when almost non-existent is immaterial) is quite a drop.

I am not aware of a 2-4 month treatment guideline: 2-3 months yes, NICE guidelines since 2014 I think.

For those with an inherited inability to process B12 to cell level, the treatment is 2 injections a week - forever. This is a rare condition but it happens. To the frustration of those who study DNA and give this guidance in feedback reports to GPs, this frequency is sometimes then refused to patients !

Please ensure that with any tests you do have from now , you are given a copy of the results.

Monitoring direction of travel should be more important than waiting for deterioration (and possible nerve damage) to occur- but I guess that ship has sailed. Keep an eye on ferritin, folate, vitamin D - and perhaps thyroid to check it's not struggling. Least they can do, don't you think ? You are right: B12 does not need to be retested again, if a positive response to treatment has been established.

I am not a medical professional. I got reloaded when unresponsive to injections every 3 months: my MMA was found to be still raised, my B12 was also out of range- at over measurable amount (2000 ng/L +) - and I was given 2 injections a week for 6 months.

[BluebellPettle in reply to Cherylclaire]

Hi Cheryl.

No.. and I had to fight to get this far!

No - I don’t know why I’m deficient, they’ve never asked or asked to investigate.

Shall I push for treatment as per nuerological symptoms now do you think? I think I’ll have a fight on my hands. I’m thinking it may just be easier to SI.

Yes I was always hovering around 273/290 etc then the 63 when nearly due.

Sorry my typo I think- NICE guidelines 2-3 months. Interesting that it’s 2014. As the HCA didn’t know! I did and she said she has b12 injections herself!

How do you know if you can’t process b12 to cell level?

I do get copy of results 😊 much to their amusement! I refused b12 test last week. But agreed to ferritin.

Interesting you say about thyroid.. had it checked before and it was ‘ok’. I don’t. Know so much about it, will have to read up.

Yes- physical symptoms have now come back as I’m on week 10 since last Injection. Neurological symptoms never gone away... does that mean nerve damage?

What you mean by reloaded please?

What’s MMA?

Thank you 😊

[Cherylclaire Forum Support in reply to BluebellPettle]

Methylmalonic acid (MMA)test. It is a blood test that is quite hard for a GP to request locally - my GP had request returned three times, but as she suspected functional B12 deficiency, she persisted and eventually got bloods done at a major hospital lab and diagnosis confirmed by them.

I only know the basics: MMA joins up with B12, so if you are lacking in B12, MMA is left building up in bloodstream. If B12 deficiency remains undetected , MMA can build to quite high levels - but quickly returns to within normal range once B12 is replete: so should be normal again after loading injections.

Only mine wasn't. It was still raised. This is why I had reloading, starting from the beginning again - I guess the idea being that more B12 injections would make my MMA drop within range. My MMA stayed raised for 3 years, so really took an awful lot of B12 to get it back down.

If your MMA is high, and renal problems (blood test) and small intestine bacterial overgrowth (SIBO) have been ruled out (fasting hydrogen breath test), then it is most likely due to a B12 problem. Mine was raised, not massively high, and because it was raised every time it was tested, haematologists decided that this might just be my normal. It wasn't - as Metabolic Diseases consultants (the DNA people) finally found it to be comfortably within range last year.

I really believe that frequent (self) injections got me there, but could be wrong. Trouble is, I've seen everyone and had all the tests now -and haven't been given any alternative diagnosis. The DNA people were really nice, apologetic about not having found a genetic reason for me although they recognised that I was ill, and that really was the end of the line of investigation.

You don't always get an answer.

I don't know much about thyroid either - there are quite a few people here who do because they have both PA and Hashimoto's (autoimmune conditions can often come in twos or threes) - but I do know that the NHS tests are usually just TSH, or TSH and FT4. I got a full-panel private test (postal blood test kit) done which included FT3 and the two autoimmune tests. Mine was okay for autoimmune, but just struggling a bit generally.

I don't think your nerve damage is irreparable - it takes nerves longer to heal.

I cannot advise you whether to push for more injections or self inject.

Perhaps ask for more frequent injections -and ask to see a neurologist ?

You might get some support that way.

Let us know.

Best of luck- and congratulations !