Feeling no better

[faknowles]

Hi I have had a 5 course if injection it's been a week since my last and I still feel like crap usual symptoms tired, tingling in feet. Depression etc should I go back to doctors or wait they want me to have another blood test before the next injection in 3 months to see if blood test show improvement am a bit worried as had it a couple of years ago and they stopped injection as.blood test Came back ok

[Galixie]

If you've had to have injections because of low B12 levels before, and you're on them again now, chances are good you have an absorption issue (unless you are a strict vegan). If you've been diagnosed with Pernicious Anemia, the correct treatment protocol is injections for the rest of your life.

Do you have the same doctor now as the one that took you off of injections previously? If so, that doctor needs a refresher course on the correct treatment of PA.

[faknowles in reply to Galixie]

I didn't see the doctor but I do know that she makes the decision they done it over the phone I had to pick up blood test forms then they phoned me when the results came in to start injections again.

[Galixie in reply to faknowles]

It sounds like you need a face-to-face with the doctor so that you can bring up your concerns. But first you should request copies of your prior blood tests along with the lab's reference ranges. You need to know why they placed you on injections previously. If you were ever given a Pernicious Anemia diagnosis, you should not have been taken off of injections no matter what your serum B12 level shows. You need to go in prepared with research that you can leave with the doctor, so that they can look at it after you've left. It's also a good idea to bring a relative or friend with you to the appointment as support and also as a second pair of ears to listen to the conversation.

There is something of a fine line between respecting the doctor and recognizing that the doctor is providing a service to you. In the end, you should both have the same goal of making you as healthy as possible.

[faknowles]

OK will do, thank-you for your advice

[Sleepybunny]

Hi,

I've assumed you're in the UK. Recent documents make it clear that patients symptomatic for B12 deficiency should be treated even if their B12 levels are normal range. It is possible to have PA even if IFA (Intrinsic Factor Antibody) tests are negative.

Have you had tests to see if you have PA? I found it helpful to ring the PAS.

useful info....

Documents/articles

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BSCH Cobalamin and Folate Guidelines"

My understanding is that the NHS should be following its recommendations but some GPs are not aware of these guidelines. I gave my GP a copy.

Websites

pernicious-anaemia-society.... 01656 769467

b12deficiency.info/

b12d.org

Books

Could It Be B12 by Sally Pacholok

Pernicious Anaemia: The Forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Martyn Hooper

Do you have neurological symptoms? "tingling in feet" can be a neurological symptom. If you have, does your GP know all the neuro symptoms you have?

The NHS treatment for B12 defic with neuro symptoms is more intensive then for those who have b12 defic without neuro symptoms. The info is in the BNF (British national formulary) Chapter 9 Section 1.2 Every GP will have access to the BNF. The info is also in the BCSH Cobalamin and folate guidelines too

Patients with b12 defic with neuro symptoms are supposed to have an injection every two days until their symptoms stop improving. This in effect could mean having loading injections over a period of weeks or even months. After this I think its an injection every two months.

pernicious-anaemia-society.... Symptoms list in here

b12deficiency.info/signs-an...

There's a useful list in Sally Pacholok's book as well.

The fact that you had a course of 5 injections then none for three months suggest they are giving you the standard treatment for B12 deficiency without neuro symptoms.

I thought the standard treatment was six loading injections not five then an injection every three months. I asked previous GPs why I did not receive the treatment for B12 defic with neuro symptoms.

The different parts of the NHS around the UK have different regional guidelines for treating B12 deficiency. Some of these have not been updated since the BCSH Cobalamin Guideines came out in 2014. I found it helpful to find out what my local NHS Guidelines were.

I get paper copies of all my blood results. I learnt to do this from experience after being told all my results were normal and finding some weren't when I got copies.

You need good levels of folate and iron to have good uptake of B12 so I hope they are checking your folate and ferritin. I found it useful to get copies of my FBC (Full Blood Count) tests as well. High MCV and high MCH on the FBC test can indicate the possibility of a macrocytic anaemia.

[faknowles in reply to Sleepybunny]

That's very interesting to know thank you so much, the tingling in feet I have had for a good few years but no one has said what it could be until I was told I had pa but they don't seem to bothered about it.

[faknowles]

And yes I am in the UK

[Sleepybunny]

"am a bit worried as had it a couple of years ago"

"until I was told I had pa"

Did they tell you a couple of years ago that you had PA? If so I'm a bit gobsmacked that you have previously been told you had PA but they had a spell where they didn't treat you. Once you have been diagnosed with PA, treatment is for life.

I strongly suggest you contact the PAS, I am sure the chairman will be interested.

[faknowles]

I was diagnosed a few years ago with pa they gave me the 5 course injection and every 3 months lasted about 6 months then they sent me to have another blood test told me it was fine and to eat more veg!! I just carried on as you do until recently when I felt awful just wanted to sleep no matter how much I had would nod of anywhere!! Tingling in feet and hands got worse so phoned doctors sent me for blood tests. Phoned them for results told me I need b12 injections had to see the nurse got to go for another blood test December before they give me another injection, see what happens then!