Does increasing dosage lead to an inc... - Pernicious Anaemi...

Pernicious Anaemia Society

32,669 members24,064 posts

Does increasing dosage lead to an increased need.?

Mrsannabbott profile image
15 Replies

I have increased Si from 6wks to 3wks with no relief in exhaustion and weariness.

Written by
Mrsannabbott profile image
Mrsannabbott
To view profiles and participate in discussions please or .
15 Replies
wedgewood profile image
wedgewood

I don’t believe that increased dosage leads to an increased need. I would say that you haven’t found your ideal dosage yet . I have found that a weekly injection keeps my symptoms at bay. And I’m sure that you will find what yours is by trial and error ,as I did .We are all different ,and so our needs are different . What you write in your heading sounds like something that a doctor who is not well -informed about B12 deficiency/P.A. might imply, when turning down a request for more regular injections !

Try three -weekly injections for a while . Best wishes .

Mrsannabbott profile image
Mrsannabbott in reply towedgewood

Thank you Wedgewood.I have increased to 3wkly already but after a week the tide runs out.I am prescribed 6wkly and SI in between. Am a little wary of increasing further. Perhaps my medical background makes me too cautious.Best wishes .

Nackapan profile image
Nackapan in reply toMrsannabbott

I'm prescribed 2 weekly Aldo been told by a neurologist. There are muddles if medicdk information out there .

Of you are medical look at the b12 clinic run in the Netherlands.

If s PA member a doctor gave a lecture which is online.

Dr. H Auweda gave the lecture .

Mrsannabbott profile image
Mrsannabbott in reply toNackapan

Thank you.I did already know of the Netherlands clinic thanks to another kind member.

wedgewood profile image
wedgewood in reply toMrsannabbott

You cannot overdose on B12 . There is a link that someone might post , explaining this .It would reassure you . Yes you can overdose on some vitamins , Certainly on B9 ( folic acid ,when taken as a tablet , but not when it is in food ( folate) also B6 ,B3 and B2 but NOT B12 . This is a huge bonus for patients who find that they need to inject once ( sometimes twice ) a day to feel well . I have a friend who has self-injected once a day for many years to no ill-effect . . Any how you can search the internet and there is no evidence to be found that massive doses of B12 cause any problems . People who have very high B12 readings ( not through supplementation ) can certainly have liver problems But it’s the liver problem that causes the high B12 reading , not the other way round ! . So that’s an entirely different kettle of fish!

Mrsannabbott profile image
Mrsannabbott in reply towedgewood

Thank you Wedgewood.I will just persevere and see if the 3wkly gives some improvement.

deniseinmilden profile image
deniseinmilden in reply toMrsannabbott

If you need it, you need it, I'm afraid.

There's currently a lack of published research to understand why but there are thousands of us who need more frequent jabs.

B12 supplementation is proven to be safe, whereas B12 deficiency definitely isn't and causes all manner of problems, which, if left untreated, can become chronic and permanent, even fatal.

There are hundreds of us, at least, that need daily jabs and some people have been doing this for decades. I've been using 1.5mg in 1ml for 6 years now to good effect and there are several people who need 2 jabs per day to be well.

We have all found it scary at first, when we've needed to titrate our doses up and up ("Just WHEN will it stop?" / "If the need carries on escalating will I be needing transfusions of the stuff to stay alive?", and that sort of thing, but in the end we all find our "sweet spot", which is different for all of us.

Once we've found it we suddenly find that the symptoms go and we can get on with our lives again, albeit with some management, a good diet and often some supporting supplements (folate, potassium, magnesium, iron and vitamin D are the most likely ones) to keep everything working.

The British Society for Haematology advise that injections are timed to keep symptoms at bay.

b-s-h.org.uk/guidelines/gui...

Symptoms are our body's way of telling us that something is wrong and needs fixing.

If your body is asking for weekly jabs and you do weekly jabs and feel well, it's well worth the £1 a week!

Mrsannabbott profile image
Mrsannabbott in reply todeniseinmilden

Thank you so much.You are so right and when the cure is a small injection then one should not hesitate to have what is required.The cost is so trivial and the relief of feeling normal so great.Thank you for the haematology article.I shall read and be comforted.Grateful thanks.

deniseinmilden profile image
deniseinmilden in reply toMrsannabbott

Thank you for your reply.

Replies make the time writing a response well worth it.

Good luck with getting better!

Nackapan profile image
Nackapan

Ive found a new frequency takes time to show benefits. Months . I found I've always got worse before improvements.

You are bound to question.

We all have .

There are no definitive answers.

Al finding the frequency thsg gives us the best relief.

I wad told a long tone ago.

No quick fix.

B12 levels need to be kept high as your body csn only function when high.

I also have read on here once on injections levels need to stay high.

That's why testing showing you are 'in range means nothing.

I've never gone longer thsn 5 weeks in 3 years abd thst wad at the start abd a mistake by Gp not to keep me on every other day.

I'm not addicted

I am dependant on b12 injections in the same way a type one diabetic is on insulin.

A fine balancing act.

I've often thought my body woujd be happier with a constant slow trickle on a pump.

Keep a diary

Is your iron,folate, ferritin vit D all okay ?

Have you been tested for thyroid problems. ?

Mrsannabbott profile image
Mrsannabbott in reply toNackapan

Thank you Nackapan.I have been checked for all the things you mention and all is fine.So just have to persevere with dosage adjustments.Best wishes.

Scipio99 profile image
Scipio99

I read the original post to be not so much a question of overdosing but of increased dependency if injection frequency is increased ( similar in some ways to opioid use, maybe?) and was something I had wondered about myself. Wedgewood's comment reassures me.

Mrsannabbott profile image
Mrsannabbott in reply toScipio99

Yes Scipio you are quite right.Wedgewood and Deniseinmilden both very helpful

mcg-woo profile image
mcg-woo

I know people can be different but I personally would never have recovered on injections every three weeks. I didn’t even recover having them every other week. My recovery was severely delayed because of a lack of loading doses and frequency of injections was cut back too soon. From my personal experience, it takes extremely high, consistent levels of b12 in the blood over a long period of time to reach the tissue level for full recovery.

I wish I knew what I know now five years ago. Would have saved myself from lots of suffering. Live and learn, I guess but I’m doing a better job of listening to my body and recognizing the signs of a problem with b12 levels. Best of luck to you.

Mrsannabbott profile image
Mrsannabbott in reply tomcg-woo

Thank you for your email.Sometimes it’s a hard and lonely path to travel when medics can’t be the understanding family doctor of the past because of Covid pressures.However this web site gives support and consideration when we need it.Keep ploughing on and treasure the occasional good day.Every good wish.

Not what you're looking for?

You may also like...

How long does it take to see an improvement

Hello My name is Jade I started hydroxocobalamin on the NHS 18 months ago 1 monthly for few months...
Jadeo0909 profile image

Do I need an iron supplement?

RBC and MCHC blood results - why, even though my levels are below the lowest end of acceptable...
New144 profile image

Need to vent....

So, it has been nearly 3 months since my last injection, due on Friday. The past month or so, have...
ah1234 profile image

Anyone else having to battle each time they need an iron infusion?

I’ve had PA since I was a teenager, although it took them years to identify it and I was 23 by the...
Katyluisa profile image

Does anyone know of an unflavoured brand of methylcobalamin?

I am B12 deficient with a very high serum folate level. My GP didn't recognise the significance of...
Barbaraj 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.