Just bone tired!

[Renniekins]

Hi everyone, I haven’t been on this forum in a long time. I am currently having my B12 injections every 6 or 7 weeks for PA. I work in a stressful job, wondering if I should have the injections more frequently?? I am just bone tired. Felt dizzy and off balance this morning before I started work. Feel like I could just sleep and keep sleeping… . Was diagnosed with PA in 2018. My 34 year old daughter has just been diagnosed with it as well. I wanted to know if people on this forum who inject weekly or fortnightly feel better for it?

[charks]

Most people on this forum inject much more frequently. You sound like you need to as well. Especially if you have a stressful job. Stress seems to deplete b12 at a quicker rate. Sadly I bet your GP won't understand and give you extra injections.

[Renniekins in reply to charks]

Thank you Charks, yes GP’s are dead set on 3 monthly. I managed to get 6 weekly for awhile, but the last GP I saw went on about 3 monthly again!!😔

[wedgewood]

I inject weekly , and yes , feel better for it . The “one size fits all “ approach of the NHS is totally wrong . You need to inject as often as necessary to keep all symptoms at bay . You cannot overdose on vitamin B12 injections . They are not “ toxic “;as was maintained by my GP . You can try to get more regular injections from your doctor . If that fails do self inject . It’s cheap ( about £1.60; for an injection ,everything included .

If I can do it , anyone can !

I’ll send you the information.

[Renniekins in reply to wedgewood]

Thank you Wedgwood for the info! Much appreciated! 😊

[Rowcocks in reply to wedgewood]

Hey,Where do you buy from? Can you swnd me the details also?

[Sleepybunny]

Hi,

I wrote a reply with lots of UK info then realised you weren't in UK.

People on this forum vary a lot in how often they need B12 injections or B12 supplements.

Most sufferers I have spoken to in UK seem to need far more than NHS treatment allows for.

I could not manage on the usual NHS B12 injection every 2 - 3 months as my symptoms come back within a few days of an injection.

Have you asked if you can have your injections more often?

When you were first diagnosed how many loading injections did you have?

Maybe you could ask for loading injections to be repeated.

I suggest you try to track down any regional or national guidelines on treating B12 deficiency in your country.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members not in UK

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

Two useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

Other blood tests

Have you got recent results for folate, ferritin or other iron tests and vitamin D?

People on the forum often report deficiencies in these as well as B12.

Thyroid

Have you had any thyroid tests?

It's quite common for people on this forum to also have thyroid issues. I suggest you put any thyroid results on Thyroid UK forum on HU.

In UK, GPs often only test TSH which won't give a full picture of thyroid function.

There are other thyroid tests a GP or endocrinologist can order.

Thyroid tests

thyroiduk.org/getting-a-dia...

I am not medically trained.

[Renniekins in reply to Sleepybunny]

Thank you Sleepybunny for your info too. I have 3 kids with Hashimotos disease and one with PA. I have been tested for Hashimoto's by different Doctors. I don’t have it, my husband doesn’t have it either!! I take Vitamin D supplements. Was told I was vitamin D deficient a long time ago. Was anaemic for years and took iron tablets, i.e before I was diagnosed with PA. I will look at getting a copy of Martyn Hoopers books. Thank you again. 😊

[Midnight_Voice]

Weekly here, and significantly improved over monthly, let alone 6/7 weeks.

I don’t know where you are in Australia, but whereas we in the UK have to import our own B12 to SI with from Germany, a cheerful Aussie pharmacist in Airlie Beach topped us up with ampoules, no worries, and even offered us syringes and needles if we needed them (we didn’t). And on a Sunday to us blow-ins from the cruise ship in the bay as well!

[Renniekins in reply to Midnight_Voice]

Hello Midnight_Voice,I got my ampoules from my Pharmacist the other day and she said you are getting a doctor to do the injections! I said yes I always do., which I do. I don’t know if I could inject myself! I am really tempted though. But have to work up the courage! I am going this week to see my GP. Airlie Beach is lovely. I live in Townsville, 🌴🌞about 4 hours drive North of Airlie. 😊

[Midnight_Voice]

We went to a lovely private doctor who showed us exactly how to self inject, and did the first couple for us, and then we did a couple under her supervision, over the course of a month. And then we were off and rolling!

Bit of a palaver at first doing it ourselves unaided, but now it is about as streamlined as making the cup of tea we have afterwards.

Don’t know Townsville, but I guess we must have sailed past you from our cruise ship’s stop in Cairns on our way to Airlie Beach.

[Renniekins in reply to Midnight_Voice]

I won’t ask my Doctor about self injecting, because for them they make money having you go back for them to do it.

Yes you would have sailed right past us! What cruise ship were you on? We have done cruising to New Zealand and the Pacific Islands.

[Midnight_Voice in reply to Renniekins]

The Queen Mary 2. Should have been a world cruise, but Covid struck, and we were holed up in Freo for three days while they figured what to do, before flying us all back home from Perth. Packed for a world cruise, Southampton to Southampton, you can’t imagine the excess baggage charge (!), but Cunard paid it like champs.

[Renniekins in reply to Midnight_Voice]

All I can say is darn COVID! Hopefully we will all be back cruising soon! 😊