Frequency of Hydroxocobalamin injections in UK

[MissPoshOxford]

Hi everyone,

I'm a long time sufferer of PA, initial symptoms aged 13, finally diagnosed at 26, will be 50 this year. Also suffer with chronic fatigue, endometriosis, now menopause, all good fun!

I am lucky that for years I have had an understanding doctor, used to have my injections every 8 weeks, in recent years as peri-menopause took hold been having them every 4 weeks no issues.

Regular nurse was on annual leave last time, another nurse questioned frequency of injections, now been told I have to have them every 12 weeks. Thought legal requirement in UK was reduced to 8 weeks a few years ago? I'm frustrated again with the lack of knowledge at my GP surgery.

The usual will happen, I will have a blood test, oh your B12 levels are 1,400+, more than plenty, etc etc. I will still be exhausted 24/7, brain fog etc you know the drill.

I read years ago that there are levels of active and inactive B12 but GP's never test this, is there a test that I can do and argue the fact I need my B12 more frequently. I'm not saying 4 weekly is the answer either way as I've been tired my whole adult life.

Asked for thyroid tests to be done over the years, all came back fine. My mum had a thyroid issue. I'm sure it's hereditary.

Anyone else had the same issues, constant fatigue, never goes, anyone aware of any tests for active and inactive B12?

Would appreciate any advice. Thanks ever so in advance.

[JanD236]

Guidelines say injections should be given every 2 - 3 months so you are at least entitled to argue for 2 months.

My GP surgery is relatively good and allows monthly injections but even with these I was finding fatigue and brain fog creeping in before my next injection was due. So like many on this forum I decided to self inject and found that a frequency of twice a week is right for me. It may be something that you would wish to think about?

[Nackapan]

Have s look at the new NICE guidelines published in March.Gps probably haven't read them.

Write into your surgery .

I had the same problem with new nurses questioning my 2 weekly prescription. On several occasions.

They really shouldn't meddle through their ignorance but follow the prescription on your notes.

Do not have b12 blood test .

That's also written in gps guidelines not to retest once 9n b12 injections.

No.

point .

Ask them to get advice from The Pernicious Anaemia Society for professionals.

Presently I've kept my prescription.

Has been challenged many times by nurses .

[wedgewood]

You obviously need more regular injections.

Do read through the latest guidelines for treatment of B12 deficiency, published last month by NICE( National Institute for Health and Care Excellence) In this document, pernicious Anaemia is referred to as “ Autoimmune Gastritis”)

nice.org.uk/guidance/ng239

There is absolutely no need for your b12 levels to be tested . They must remain high .

As you are constantly tired , you need more regular injections. If you are a frequent visitor to this forum , you will know that most of us are compelled to self-inject B12 because doctors will not let us have b12 injections often enough to keep your symptoms at bay . Do try to persuade your GP that you need more frequent b12 injections . Failing that , you should try self injecting, easy and reasonably cheap ( about £2.00 ) For many of us , the bog-standard treatment of one size fits alI is not viable . We are all different , and need different frequencies of injection . I inject weekly for example .

If you are forced to consider self-Injection. You can get all the information you need here .

Best wishes .

[Cherylclaire Forum Support]

No-one should have to accept a life of constant tiredness. A GP, you would expect, would be looking for the cause/s and work towards, if not a cure, then at the least, an alleviation of symptoms in order that you have the optimum quality of life possible.

We can accept that not all conditions are curable, not all conditions have been adequately researched, but we should not be pushed into having to prove that our need is for more frequent treatment, when the treatment available is cheap and harmless - and improvements can often be visible and noticeable. By friends, neighbours, family, employers. work colleagues, customers or clients, GPs - sometimes even nurses !

Worse still, being forced to deteriorate in the hope that a nurse will notice your visible deterioration. PLEASE don't do that.

For those with neurological symptoms, the treatment advised is every other day injections until no more improvement is possible, then every two months as a maintenance dose. Maintenance meaning being able to maintain all of the improvements made by the EOD injections. If they fail, at this frequency, to do this, then they should be altered until successful. Observation, monitoring and listening to the patient vital in getting this right, both at the changeover point and to gauge effectiveness of maintenance. Nerve damage can take a while to mend. If left untreated or undertreated, it can become permanent.

[Hockey_player]

With the fatigue you have, it would be worthwhile to try every day or every other day injections of B12 for a few weeks to see if that helps. You might have to join the crowd of people here who self-inject. My husband gives me my injections. That way, I can have them as often as I want to.

[mountmuir27]

Fellow menopausal (post) lady with life long brain fog and fatigue. Bear with me...sharing background and perhaps a path to explore with your GP. Menopause alone can cause blood sugar issues that aren't necessarily full-blown diabetes. Loss of estrogen causes reduced insulin sensitivity. Add anemia into the mix aka fewer glucose carrying red blood cells and even slightly elevated blood sugar adds to fatigue. I reside in the USA and Endo prescribed a CGM Freestyle Libre. I'm not diabetic although A1C is creeping up so he was able to get insurance to cover it on the basis of 'pre-diabetes pattern worsening'. Relevance to B12 anemia treatment? I am able to use the CGM to identify when I need a B12 injection. My blood sugar goes up in the absence of any identifiable reason or change in diet/exercise. After injection blood sugar normalizes or reduces again. Another marker of B12 deficiency I learned was cholesterol levels can remain high if B12 is low. Found a few studies on this and sure enough my lipids were a mess after 3 months of no injections (not to mention dizziness/lightheadedness/fatigue/elevated resting heart rate). I used that data and blood sugar data to educate primary MD and demand - successfully - additional vials of B12 since I self-inject. As all have shared B12 isn't toxic, it is inexpensive when prescribed, and there is no reason for increased frequency. Diabetes and high cholesterol will render you much more expensive to your health care system as the risks include stroke/brain infarct. Remind your GP of this. It is indeed a fight to get proper treatment, no doubt.