B12 deficiency

[MariaStrawCinar]

My nutritionalist has ordered B12 tests as I’ve had part of the small bowel removed she said I am not getting the nutrients and B12 if low could be causing a lot of my symptoms- when I look at the symptoms they match but I had been thinking it’s post surgery recovery and being hypothyroid. Not a great combination Just wanted to see if anyone had the B12 injections and noticed a significant change / improvement. Of course we will test the levels first and if low she will advise injection.

Thanks

[helvella Administrator]

I suggest you have a look at the Pernicious Anaemia Society forum. They have many who need B12 injections and have a lot of experience.

healthunlocked.com/pasoc

[MariaStrawCinar in reply to helvella]

Thank you

[SlowDragon Administrator]

Are you also testing folate, vitamin D and ferritin

B12 and folate need testing together

[MariaStrawCinar in reply to SlowDragon]

I will make sure it’s all covered -

[greygoose]

If you've recently had surgery, then your B12 will be low. It's the anesthetic that lowers it.

[Lily67]

I have b12 injections and think they are great . I get one every 12 weeks and really start to feel the need for a top up after 9-10 weeks . Definitely help with fatigue.

[MariaStrawCinar in reply to Lily67]

Did you test low for B12 initially ?

[MariaStrawCinar]

Thanks 😊 that’s good to know

[Cornwaller]

B12 deficiency is not uncommon with hypothyroidism. I have both and they seem like one interrelated condition for me. If either one is well managed the other is easier to manage. If both are well managed I feel really well. B12 shots are the gold standard for b12 deficiency management. I hope you find wellness. The B12d.org site is pretty helpful.

[MariaStrawCinar in reply to Cornwaller]

Thank you so much.

[waveylines in reply to MariaStrawCinar]

You can ask to have b12 injections every two months as you say you start to feel symptoms at week 9. Id ask if you could trial 2 monthly jabs. GPS are told to do this if you have symptoms coming back earlier than the three monthly jab.

I have hypothyroidism and b122 deficiency. I'm also gluten intolerant!

I have b12 injections daily to keep symptoms at bay. Havent been able to lower as neurological symptoms come back

[MariaStrawCinar in reply to waveylines]

What are the neurological symptoms ?

[waveylines in reply to MariaStrawCinar]

Tingling in arms, legs feet hands, numbness, sense of something creeping up/down limbs, blurred vision, bowel or urine incontinence, tremors, weakness, trouble co ordinating limbs - feels robotic...

If you look on b12d.org they have an excellant assessment sheet with many of the symptoms/signs of b12 deficiency.

[MariaStrawCinar in reply to waveylines]

Thank you yes vision becoming blurred, weakness lightheaded - I will take a look

[Marz]

Was the Terminal Ileum affected in your surgery ? That is the area of your gut that utilises B12 and sends it back to the liver for storage.

It happened to me ! I had Gut TB over 50 years ago and had several surgeries at the time including a hemi-colectomy. When I learnt about B12 - the damage had been done. I now self-inject weekly. Further gut surgery continued ...

I had been taking a B Complex so the B12 was in range but far from optimal sadly.

I see you have posted on this forum many times so I can understand how you felt safe to ask your question here. I am also on the PAS Forum - where the knowledge is good - however not so many have issues due to surgery . ... 🌻

[MariaStrawCinar in reply to Marz]

Yes Marz that’s exactly it- they removed that part. Why would they not tell me immediately that I need B12 injections after that? It’s three months after now and just having the consultation with the dietician she picked it up. I have felt weak, lightheaded and as I said I put it down to hypothyroid state and surgery but I now feel sure it’s to do with the ileum being removed as you say. Was yours taken 50 years ago ?

[Marz in reply to MariaStrawCinar]

Yes my gut surgery was when I was 27. Diagnosed with Hashimotos at 59 in 2005. Then later learnt about B12 from reading here - joined in 2011. Spinal surgery for stenosis in 2007. I attended a Crohns Clinic every 6 months for years - until I moved to Crete in 2004. Not once did anyone mention B12 issues. I am now 75 - and doing my best to keep up with important information to stay well ....🌻 Back in the UK sincec2019 ....😪

[MariaStrawCinar in reply to Marz]

Thanks so much Marz Crete must have been a lovely place to live.

[Marz in reply to MariaStrawCinar]

It was 15 great years that flew by. I do believe we humans are solar powered !

[phoebegrant in reply to MariaStrawCinar]

Without the terminal Ileum, you have lost the ability to convert B12 from the gut. The only solution is B12 injections for life. Oral B12 in any form will be as ineffective as it still requires the Ileum to metabolise it. I hope you are soon on the road to recovery.

[MariaStrawCinar in reply to phoebegrant]

Thank you - it makes me wonder why it wasn’t part of my after care plan. It’s been three months now- they will test B12 in a few weeks as takes that long to get an appointment

[SlowDragon Administrator in reply to MariaStrawCinar]

Suggest you get FULL B12 test here while waiting

nutris.viapath.co.uk/pages/...