New to this and want some advice plea... - Pernicious Anaemi...

Pernicious Anaemia Society

32,958 members24,306 posts

New to this and want some advice please, thanks

Caradoc1a profile image
10 Replies

Over the past couple of weeks I realised that I probably have PA. I became hypothyroid in April 24 after RAI in January for hyperthyroid. Lots of neuro, motor, sensory symptoms which started with occasional double vision and onset of carpel tunnel in June and have got worse in past 4 weeks. I started 1000mcg sublingual Vitb12 on 14/11 and symptoms started to recede till on 22/11 I was able to walk 3.5k with no ill effects and sleeping at night. Joy!

On 23/11 I tried experimental 2k bike ride and that night had burning in legs, pain in feet back again and my legs felt like sausages. 2 days later, still the same. (I have rested for 6 weeks on physio advice as he suspected central sensitisation. ) I am normally pretty active as we have no car.

Could I take 2 of the B12 sublingual tablets per day?

I have Endo appointment next week but as B12 is in range, I'm not sure what to expect. GP won't intervene as the Endo requested blood tests at my behest. (Thank you to thyroiduk forum on here)

Thank you!

Written by
Caradoc1a profile image
Caradoc1a
To view profiles and participate in discussions please or .
Read more about...
10 Replies
traveltime profile image
traveltime

hello again. If you look at a couple of my recent-ish posts, I highlight the steps I took to (finally) get a doctor to take me seriously

Caradoc1a profile image
Caradoc1a in reply totraveltime

Thank you

Sleepybunny profile image
Sleepybunny

Hi,

Apologies for quick reply as going out.

I've assumed you're in UK, let me know if you're not.

I left detailed replies in this thread below.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

Some links may have details that could be upsetting to read.

I'm not medically trained.

Caradoc1a profile image
Caradoc1a in reply toSleepybunny

Thank you - I have a call into the GP today!!

Sleepybunny profile image
Sleepybunny in reply toCaradoc1a

Good luck with the appointment.

Oneash profile image
Oneash

You'd be better off with injections. But you pee out excess B12 so no harm in a double dose.

Caradoc1a profile image
Caradoc1a in reply toOneash

Thank you. Saw another GP last night and he said carry on with the Cytoplan sublingual 1000mcg B12 for 2 months and then we will regroup to see what next; to improve my folate and to take the methyl folate I've already got at home, no more than 5mg per day. He also said to double up on B12 dose if I felt a need to. I felt listened to.

Oneash profile image
Oneash in reply toCaradoc1a

Well it's good to be listened to, but if you do have PA and you don't respond to the sublingual you must not delay on getting injections, as delay can equal irreparable damage. If you crash in the next 2 months. Wake up feeling tired, can't get out of bed, totally unmotivated, just want to sleep, go back to them ASAP.

Do you know your blood serum numbers?

0-200 completely deficient

200-500 low needs treating

500-900 normal

900+ without supplements could be a warning indicator, with supplements especially injections can be way over.

Blood serum needs backing up with homocysteine and methylmalonic acid measures, as they show B12 is working or not in your cells.

Caradoc1a profile image
Caradoc1a

Thanks for replying. B12 in Oct 23 was 601 and Nov 24 was 334. As Endocrinologist says, something's going on. He says likely nothing to do with thyroid as the good B12 score was when I was hyperthyroid and now I'm hypothyroid due to RAI. He bumped it back to the GP to deal with suggesting coeliac test and H Pylori test. I saw ANP, not GP, on Tuesday and she eventually admitted that staff time/costs is the reason why B12 injections are not preferred. She first said latest research does not support injections but could not supply the source. I countered with many legitimate sources stating the need for immediate injections for subclinical B12 levels plus neurological symptoms. She then said only people with PA have malabsorbtion issues, otherwise it's diet - I countered with the different reasons for malabsorbtion. All she offered was a blood test next day for B12 levels to see how much I had improved in 3 weeks on sublingual B12, coeliac nd H Pylori tests. Another GP appointment next week.

Caradoc1a profile image
Caradoc1a

B12 blood results due tomorrow, so that will be useful. I'm sending a private active B12 test in today.

Not what you're looking for?

You may also like...

Sublingual B12 V injections?

I saw GP yesterday as have loads of symptoms of b12 deficiency although with sub clinical blood...
Caradoc1a profile image

Hi new to this site

Hi all, I am new to this site. I was diagnosed with low B12 in 2017 after sublingual B12 failed to...
Opal19 profile image

New here and would appreciate some advice re B12 please

Hi all I am new to this forum and wonder if you would mind giving me a little bit of advice?...
Throid profile image

Some advice please.

Hello all, hope you're all well. I did every other day SI around just before Christmas & felt the...
Ritchie1268 profile image

Please will you guide me, I'm new to this?

About 4 weeks ago, having felt increasingly tired for some time, I suddenly realised I had many of...
thyr01d profile image

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.