New to this and want some advice please, thanks

[Caradoc1a]

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!

[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 in reply to traveltime]

Thank you

[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 in reply to Sleepybunny]

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

[Sleepybunny in reply to Caradoc1a]

Good luck with the appointment.

[Oneash]

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

[Caradoc1a in reply to Oneash]

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 in reply to Caradoc1a]

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]

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]

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