Help please

[Sporty-mi]

Hello family PA .. someone from the hypothyroid group very kindly suggested I join as I've had PA now for as long as I can remember. Only now am I finding out more about it. I have injections at the gp every 3 months but find I'm really fatigued when I'm due and the doc has increased this to every 10 weeks but I'm wondering if any of you lovely people can advise if there is anything I can take in between injections ? I'm normally very active and live in the uk.thanks

[fbirder]

Well done on getting the frequency increased.

Some get relief from sublingual sprays or lozenges, others from skin patches or nasal spray.

None of them did anything for me.

[Sporty-mi in reply to fbirder]

Thanks birder ..

Can you get these on nhs or buy in a chemist ? I live in the U.K.

[fbirder in reply to Sporty-mi]

Sublingual lozenges and sprays as well as patches can be bought from Amazon. Not sure about nasal sprays.

[Sporty-mi in reply to fbirder]

Thank you I shall have a look x

[Sleepybunny]

Do you have neurological symptoms? How many loading injections did you get when first diagnosed?

b12deficiency.info/signs-an...

pernicious-anaemia-society.... click on Symptoms Checklist

In UK , people with b12 deficiency with neuro symptoms are supposed to get loading injections every other day for as long as symptoms continue to improve then injections every 2 months. See BCSH Cobalamin and Folate Guidelines for info on UK B12 treatment, about a quarter through document. I'd recommend reading whole document.

b-s-h.org.uk/guidelines/ Click on "Diagnosis of B12 and Folate Deficiency"

B12 books

"Could It Be b12" by Sally Pacholok and JJ. Stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" By Martyn Hooper

Have a look at pinned posts on this forum as there's lots of B12 info there.

Other links

b12deficiency.info/what-to-...

b12d.org

[Sporty-mi in reply to Sleepybunny]

Thank you sleepy bunny

I read the links but don't really understand them !

I was diagnosed years ago and my dad has had it for years too. I think at first they gave me weekly injections then it went to every 2 months. I do have headaches and Cronin fatigue but not sure if it's my thyroid or lack of B12 !

[Sporty-mi in reply to Sporty-mi]

I meant chronic fatigue. And brain fog. I can't think straight 😥

[Sleepybunny in reply to Sporty-mi]

The following are usually considered to be neurological

Balance problems eg feeling unsteady, dizziness, vertigo

Tingling in feet, hands and elsewhere, pins and needles,

Tinnitus (hearing noises inside head)

Tremors

Weakness in limbs

Limb jerks

Dementia, forgetfulness, confusion, poor memory

Numbness, paralysis

Migraine

I think brain fog is usually considered to be neurological. There are lots of other possible neuro symptoms.

With a confirmed diagnosis of PA, if you have neurological symptoms you should be at least getting injections every 2 months.

If you do have neuro symptoms the GP might find it helpful to look in their copy of the BNF (british national formulary), in Chapter 9 Section 1.2. the BNF is a book all Gps have access to, which gives the recommended treatment for various health conditions including PA.

It might be helpful to contact the PAS(Pernicious Anaemia society) who are sympathetic and can pass on useful info. Some people on this forum join the PAS.

pernicious-anaemia-society....

PAS tel no [phone]

martynhooper.com/

I am not a medic just a person who has struggled to get a diagnosis.

[Marz]

If you are on a phone you will need to scroll well down to find Pinned Posts mentioned above.

Glad you found your way here 😊

[Gambit62 Administrator]

it's only injections that have to be done under prescription in the UK - other B12 formats count as vitamin supplements and aren't subject to restrictions, though you will need to be taking really high doses - >1000mcg a day generally - if you are using lozenges.

I use various different nasal sprays- never seen them in a high street chemist - and not many on amazon - get mine from a company called detoxpeople

[Sporty-mi]

Thank you gambit for your lovely reply. I will look for the nasal spray as that's more effective I believe ? So I will need 1000 mg a day in between injections ?