B12 GP Prescribes two adult sisters with same PA Condition an

[area16rep]

My GP gives my sister (35) her B12 injection every 6 weeks and I get mine every 12 weeks as my GP thought, I could overdose on B12 and even when presented with the evidence from NICE Guidelines saying it a water soluble vitamin and any extra you pee out. This is the same GP at the same practice. They refused to give me my injections any closer than 12 weeks. I have PA, Chronic Fatigue Syndrome and Chronic Pain Syndrome, I am only awake on average 6 hours per day and I’m am so weak, tired and in pain. I'm rarely out of bed/ wheelchair and she has PA and is able to work full-time and be a single mother to a busy 4 year old. How can I get him to see the problem with his logic.

[Nackapan]

I'm sorry to hear this

Do you both have the same Gp

?

I dont understand how so many are treated differently.

Write in so a letter is not ignored.

Ask for a trial of extra Injections

Ask one of the consultants toh are under.

My daughter did this recently and we are waiting to see if she can get more. She also unabke to work and in a wheelchair alot if the time.

Have you a PA diagnosis or absorbtion problem?

Otherwise consider self I jecting in between

[area16rep in reply to Nackapan]

We both have the same intrinsic factor PA. and the same GP. At the start of lockdown they let me take my B12 home to self inject, I am only allowed one injection 12 weekly and if I take more and self inject the Doctor makes me wait 3 months then blood tests me and then I have to wait a further month after that to much sure my levels go down below 400-600 but the last time they did this. I had 140 blood count in 30th September 2017 an da b12 count 1200 and I was dying in hospital by start of March 2018 my blood count was 53 and my b12 was under 300. I needed 5 pints of blood transfusion, 5mg daily folate for life ( sister (35) is also 5mg daily Folate).

My youngest sister (27) is on 5mg of folate daily for life to support her b12 as both of us older sister didnt have PA until we turned (30 for my middle sister and 35 for myself) I hope this makes sense. Youngest sister is at a different GP . I will try writing a letter to the GP, thank you for the suggestion.

[Nackapan]

Yoh have PA. Toh can at least get them 2 monthly. Bnf guidelines.

Change your Go

Get PAS to help

[JoannePA]

Hi. Why do you need to tell them you are self injecting in between. I would get the b12 and inject and not tell them. Meanwhile. Wow leaving you to get that sick you are in hospital and then doing it again to you now, I think this doctor needs a complaint to the gmc

[area16rep in reply to JoannePA]

They will not give me my injections unless I have a low b12 test. I got caught out because I wasn't willing to get any worse, so I started self injecting after GP claimed it was dangerous and not recommended to self inject. GP accused me of abusing b12 and was offended because I started laughing, I take morphine daily for back pain ( prescribed by him) and had never been accused of abusing a medication before. I said it was impossible to overdose on a vitamin that is water soluble he said he would check this out and get back to me about it. He did admit I was right but still claimed it was dangerous and self injecting is dangerous but is fine for diabetics

Due to covid I got 5 doses home from GP to self inject with in April but I have been told that if I use the 5 doses before I'm due the next one he will not prescribe anymore b12 till next year. (5 doses times 12 weeks =60 weeks)

[Gambit62 Administrator]

Do you know why your sister is receiving injections every 6 weeks? What is behind the difference in treatment?

[area16rep in reply to Gambit62]

We both discovered we had the b12 deficiency/PA in the same way got ill, got worse and worse ended up in hospital. Both needed 5 pints of blood. Both the same GP but hers started 3 years before mine. She was 33 and I was 36. I was in a bad car crash on 10th July 2015 everyone put my symptoms down to my chronic pain syndrome and chronic Fatigue syndrome. After the blood transfusion I felt great and my CFS had no symptoms at all for 3-4 days and gradually came back over the next week or so.

We have asked to GP for an explanation but he say he wont talk about anyone else treatment. the consultant at the hospital told me to get our brother (35) and sister (27) checked for PA my brother was fine and my youngest sister in only needing folate.

GP refused to test my kids F(21) and M(19) for PA unless they show symptoms of PA but if the consultant thinks my brother and sister need checked I dont see why they missed my kids. I have only added this a my daughter (21) was pregnant and lost the baby yesterday and I am worried it might be connected.

[Gambit62 Administrator in reply to area16rep]

Sorry to hear about your daughter's miscarriage.

You could try writing jointly (ie both signing the letter) to the practice administrator outlining the treatments and saying that yourself and your sister have asked to know why there is such a difference and that the GP has refused to answer but you would still like to know why there is such a difference in treatments. If that doesn't work try following up with your local PALS

You could also try moving to a different practice.

[Showgem]

Does your GP know you are sisters, you need an explanation as to why you are treated so differently when you both have PA.

Are you taking iron for your iron deficiency?

[LauraJane2]

When I first had my my B12 deficiency identified by my GP I was prescribed some pretty low dose oral supplements and was struggling on using those.

Luckily I had happened to speak to a local friend who had almost the same test results a week earlier than me and had immediately been started on loading dose injections by the same GP.

I have no idea why our treatment was so different. I went back to the GP and listed all my symptoms and said I was not able to function in my day-to-day life and she gave me my first loading dose immediately. Unfortunately I think sometimes you have to really push for treatment which can be a real struggle when you are weak and have brain fog etc.

I agree with the others recommending to self inject and not tell your doctor.

[kittyflowers]

Consider self injecting. Once you start you wonder why on earth it wasn't something you stated much earlier. It's the only way to go. When you are ill you dont have the energy to fight. Get well by self injecting so you feel well enough to present your GP with evidence.

It may take some time.

X