Hoshimitos thyroiditis

[Tigger999]

Hi All,

I am new on here with newly diagnosed pernicious anaemia. I had the standard 2 weeks of injections and after that course felt fantastic energy wise for 5 days. Still having neurological symptoms , hands not working properly, seeing dark shadows, breathless and suddenly gasping. My energy quickly went downhill after the five days, I then asked my GP under nice guidelines if I could have more injections of which he granted three weeks worth- I’m half way through this and still not feeling well. Has anyone else experienced this please?

[Jillymo]

Hi,

It is quite normal to feel worse before better as the nerves regenerate .

It is early days but over time it will get better..............

businessinsider.com/diagnos....

[Hedgeree]

Hi Tigger999,

Do you also have a thyroid diagnosis? Your post title suggests so; you could also post on the thyroid forum if you haven't already done so.

[Karenedawson in reply to Hedgeree]

Hi, I’m wondering if I have hashimitos thyroiditis or I’m heading that way as the injections are not helping… but from the other comments it seems what I am experiencing is ‘quite normal’. Thank you very much for your reply

[Sailinglady]

If you've got neurologic symptoms it can take months or years of regular (e.g. alternate day) injections to get full resolution. And several months to start to feel the benefit for the neurological symptoms. When i first started it was very stop and start (i.e.bi has 2 weeks of injections, stopped again, went back a few weeks later worse than i was originally and started self injections) and half way through the second round of injections i felt worse again. I then took a few weeks of folic acid 5mg daily and felt much better. More recently (after 2 years of regular injections and not being able to reduce from alternate day) i started to get tingling back again. This has mostly resolved again after taking vitamin b complex capsules for the last few weeks and my energy has picked up again.

[Karenedawson in reply to Sailinglady]

Thank you so much for your replies guys, that’s really helpful. It’s all new to me and I’m trying to get my head round it all whilst feeling like I’ve been run over by a very large truck!!

[Sleepybunny]

Hi Tigger999,

With neuro symptoms, I would expect your GP to put you on this treatment pattern

A B12 loading injection every other day until the symptoms stop improving then a B12 maintenance injection every 2 months.

"then asked my GP under nice guidelines if I could have more injections of which he granted three weeks"

There is no set limit as to how long the every other day loading injections can continue for. If your symptoms have improved (even if it's only a little bit) at the end of three weeks then my understanding is that the every other day injections should continue.

Might be helpful to keep a symptoms diary.

See treatment pattern for those with neurological involvement in Indications and Doses section in next link

bnf.nice.org.uk/drugs/hydro...

When you have time and energy, check the local B12 deficiency guidelines used by your ICB (Integrated Care Board) or Health Board as these may influence the treatment your GP gives.

NICE published a new B12 deficiency guideline on March 6th 2024

nice.org.uk/guidance/ng239

I have reservations about parts of it but there are some good bits.

There is a pinned forum post about this guideline.

I left detailed replies in this thread with info that may be useful

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

Apologies for brief reply. I have an arm injury that limits my typing.

I'm not medically trained.

[Karenedawson in reply to Sleepybunny]

Thank you very much I appreciate it 😊