Worn out

[bettyboo2020]

Hi I'm new here, I've been on b12 injections every 8 weeks of many years my doctors told me i had to have a b12 holiday back in September 2018 because my level was just under 800 now I've suffer with stomach issues and have to cut some foods out of my diet now I'm suffering with no energy tiredness headaches burning in the chest got my b12 level checked only to be told its gone up from 246 to 268 in nine months with no injections so no B12 allow instead I'm told my platelets are borderline and my ferritin is low feeling utter crap has anyone experience anything the same

[Gambit62 Administrator]

suggest you direct you doctor to the following standards on diagnosis and treatment of cobalamin and folate disorders produced by the British council for Standards in Haematology

onlinelibrary.wiley.com/doi...

and highlight the following:

a) the serum B12 test is only accurate to 80% - the change in B12 levels reported is within this error range so the difference is insignificant.

b) treatment isn't based on serum B12 levels - it is based on whether you have an absorption problem and that generally means injections for life as serum B12 just isn't a test that can be used to manage post treatment.

c) in diagnosis the emphasis is on other clinical features (Iie symptoms over test results)

Although not mentioned in the guidelines early studies in the use of B12 injections showed that people varied considerably in how long they retained B12 in their blood - and for some it was as long as 4 years. Unfortunately these studies only looked at levels in blood and didn't look at progress with symptoms. Other studies caried out have shown that people with Pa on average seem to need serum B12 levels maintained at 1000 post loading shots so the normal range really doesn't apply post loading shots.

Your doctor may find this area of the PAS website specifically aimed at helping help professionals improve diagnosis and treatment of B12 absorption problems

pernicious-anaemia-society....

[Nackapan]

I would strongly recommend you list all of your symptoms in a letter. Copy in practice manager keep it short and sharp.

State your your deteriation since injections have stopped.

State theses are the same as before b12 relieved thses symptoms.

Use the information given and bnf guidelines to get your injections back.

State tiu do not want to get irriversibe damage.

As nothing else found. You need b12 injections.

Look at tour blood results get a print off.

Discuss ferritin with your doctor. I take iron to keep ferritin within 40-60ng/ml which suits my body under the direction of my Gp.

My shaking and breathlessness resolved. !!

Push push push.

We have one life.

Meanwhile consider getting your own supplies.

[bettyboo2020 in reply to Nackapan]

Thank you for the reply I'm gonna find out from my doctor what my reading is and looking to take my own iron supplement it can't harm they keep saying I'm iron deficient but that what b12 is

[Litatamon]

Pertinent information between #4 and 5 in this article -

stichtingb12tekort.nl/engli...

And this one about retesting should be helpful -

stichtingb12tekort.nl/engli...

How utterly frustrating for you. Sigh.

[Cherylclaire Forum Support]

Worrying ,isn't it, that a doctor doesn't know that the test is not accurate enough to record a rise of a minute 62 ? It's immaterial whether this is ng/L or pmol/L , it's that small. Yet no reaction at all to a drop of 500 ?

But what is more worrying is that, having found a treatment frequency that has been effective for many years, he has stopped it - and watched your levels drop, no doubt he will continue until you reach a level that he considers deficient.

This despite your returning symptoms.

A B12 holiday ? What even is that ?

People with an inherited inability to process B12 at cell level have NHS injections twice a week forever. No ability, no holiday.

The most likely deficiencies to accompany B12 deficiency are folate and ferritin.

Vitamin D can also be low, and thyroid can suffer too. But B12 needs to be addressed first, before folate, especially if your GP is only looking at blood results -and not what is happening to you !

[Nackapan]

Just shows the ignorance

People are given 'drug holidays ' to see if they can cope without it. Also to give their system a break

The term should never be used with b12 as 'the holiday ' makes you ill

[Lurcher-lady]

Iron and B12 aren’t the same thing, if that is what you were thinking bettyboo2020

[bettyboo2020 in reply to Lurcher-lady]

No I know it's not the same but they all work in partnership with each other all part of your iron make up

[still_elsewhere]

I was diagnosed with ferritin and B12 deficiencies too — and yes, I also had severe, daily headaches, as well as severe fatigue, for several months. If your doctor won’t give you an infusion, definitely take iron supplements! Liquid iron works fastest and pairs nicely with a morning glass of OJ.