Self injection b12

[Bobonut]

Hi again, I'm off to the GP ON MONDAY hoping to up my b12 treatment. From the 3 monthly to the with neurological symptoms . I don't believe I ever had a proper loading dose and nothing like I read on here. If I am unsuccessful I may consider self administering . My question is to all those self injection ,have you had to go down this method because of the unhelpful NHS on the issue of PA?

[deniseinmilden]

In a word... Yes!

[Hidden]

Bobonut I've put order in just in case GP doesn't agree with needing B12 shot before 3monthly one

[jillc39]

yes!

[Sleepybunny]

Hi,

Yes .......

"off to the GP ON MONDAY hoping to up my b12 treatment. From the 3 monthly to the with neurological symptoms "

Good luck.

Try getting any treatment at all if symptomatic, but test results are negative.

I take the following with me if going to an appt where b12 might be discussed.

1) copy of BCSH Cobalamin and Folate Guideline swith relevant bits highlighted.

2) fbirder summary of b12 documents. link on his profile page or in 3rd pinned post on this forum.

"I don't believe I ever had a proper loading dose"

Info on loading doses is in BCSH Cobalamin guidelines. Has GP explained why you have not had loading doses?

GP will almost certainly have a copy of BNF (British National Formulary) in room when you next have an appt. The info on loading doses is in Chapter 9 section 1.2 of the BNF.

[Gambit62 Administrator]

I ordered shots after spending a very long appointment with my GP in which he tested loads of things - gave me the stupid depression questionnaire that the NHS is so fond of - during which I realised that just being B12 deficient with no depression was going to give you a high score so the test was stupid ... I just hadn't managed to get through to him. At one point he told me that depression wasn't related to B12 deficiency. He asked what tests I wanted just before I walked out but none of which would have been any good and I'd really just had enough. I apologised for wasting his time (and thought to myself 'and mine'). Went home - started to howl in tears and think what on earth I could do - so I ordered some phials from Germany ... and then whilst I was waiting for them to arrive I started using a nasal spray that I'd purchased to try and tide me over feeling awful at doses much higher than suggested on the pack - 3-4 x a day - and actually found myself improving significantly using the spray whilst I was waiting for the phials to arrive. I do self inject but mainly use nasal sprays - I have experimented with different forms of B12 and also use other supplements - but always checking on safety and being careful to weigh up exceeding any recommended upper limits/RDA before I supplement.

GP was very concerned but just not very aware and I probably could have been more patient with him but I've a long history of really bad experiences with GPs showing how little they know about things - I was put on tranquilizers aged 10 ... and told at one point that there wasn't a test for carpel tunnel syndrome when my Occupational Health Department had given me a load of leaflets ... and at that point I really didn't have any fight left. A couple of years later I was told that at 52 I was on the old side for not having been through the menopause (a doctor that obviously didn't understand anything about statistics). My experiences with some GPS wanting to put me on antidepressants and others not being prepared to even think about it when I really was getting desperate and wanted to try anything. My GP thinks that he caught my B12 deficiency early because I have no signs of macrocytosis. I didn't think my depression and at that point extreme anxiety could have anything to do with B12 because they had been around for 50 years but they certainly went a few months into treating myself which implies they were something to do with B12.

I was diagnosed in a teaching hospital - something picked up in my bloods after I had a fall. The orthopaedic professor had to be prompted by an overworked assistant to mention B12 levels to me and all I got from the conversation that ensued was irregular bowel movements ... and the students with him didn't seem to know much though I think one may have mentioned osteoporosis. I had no idea what B12 was about and had to find out for myself. There was a lot of screening after the fall for bone density (osteoporosis) but at no point did anyone think to ask me about neurological symptoms though I had actually mentioned problems with carpel tunnel, and my feet and was actually quite suicidal in the hospital because the operation to repair a fractured ankle was constantly being delayed and I just wanted to get home. I was in extreme pain during the bone-density scan but none of the staff seemed to care and I ended up leaving bent double because I couldn't straighten up. Over the years I have unfortunately learnt to not expect doctors to really know an awful lot about anything. Specialists may know about their areas but often can't see beyond them. Whist there are a lot of conditions and a huge overlap of B12 symptoms with other conditions there just isn't the general ability to see the big picture. Doctors with long patient lists just don't have the time to know their patients and appointment systems that discourage patients from talking about more than one ailment at a time really don't help. I've even remember one GP telling me to leave because I'd mentioned more than one problem.

Sorry - bit of a rant. NHS is actually NIS (national illness service) - the visions that started it in the 50s have gone completely. Doctors are too removed from their patients. There aren't enough doctors and there aren't enough nurses to do anything but patch people up and send them on their way.

[Foggyme Administrator in reply to Gambit62]

Gambit62, surely you know that we have the best health service in the world!!!

Oops, I'm eating my words.

National Illness Service...most apt...couldn't agree more.

And I think an even longer rant much warranted...😀

[wedgewood]

Yes , I wasn't believed when I said that my symptoms were returning after about three weeks . Absolutely adamant " You will want more and more if we give in to this, and anyhow too much B12 is toxic" I was a patient of 25 years , and had hardly ever bothered the GP! I had already had to get my diagnosis privately, as my B12 level was considered normal (150) So that's how I came to self-inject .

[Foggyme Administrator]

HI Bobonut. In three words yes, yes, yes. And I wish I'd done it four years ago.

Very good luck and let us know how you get on 😀.

[fbirder]

Bobonut In an attempt to ward off the gloom you may be feeling after reading some people's experiences I thought I'd tell you how I've really been impressed with the NHS.

Last February I went into hospital with a bacterial infection of my elbow and severe iron-deficiency anaemia caused by a gastric bleed.

Over the next few weeks I had cameras shoved into my GI tract from both ends - with no sign of active bleeds. I was taking iron supplements, but my fatigue levels were still high.

After my colonoscopy the registrar ordered a blood test for various things - including B12. Then my GP ordered an anti-GPC test and told me I had pernicious anaemia, and put me on a course of jabs.

Around that time I was told that I had gastric Neuroendocrine Tumours (NETs). My gastroenterologist took loads of biopsy samples and sent me for a CT scan, then a gamma-ray octreotide scan, them a DOTATATE PET/MRI scan - and referred me to an expert at University College in London. On my next appointment the gastro asked me what I thought would be a good idea for treatment. I suggested annual gastroscopies - and he agreed.

I realised that 2-monthly kabs wasn't often enough. So I negotiated fortnightly injections with my GP. I also gave him a copy of Martyn Hooper's book - which he has passed around the practise.

My GP referred me to a haematologist - who was the only arrogant git I've encountered in my journey. I told my GP I would be ignoring most of his advice.

Then I was referred to a neurologist - and spent 70 minutes (of a 20 min appointment) discussing my ever-worsening neuropathy. So far he's tested me for paraneoplastic syndrome and coeliacs, sent me to an expert at University College, sent me for nerve conduction studies and I'm off to the National Hospital for Neurology and Neurosurgery for a nerve biopsy.

Apart from the haematologist everybody has listened to what I've said and taken it on board. They've all been very helpful and keen on finding out just what's wrong with me.

If I were in America I think the tests and consultations I've had would have cost me close to a hundred thousand.

[Jennie16 in reply to fbirder]

I want your doctor!

[ndodge in reply to fbirder]

Just a thought- either you were totally lucky with your doctors...or do you think it's because you are a male and a scientist?

No disrespect intended toward you, fbirder, just that I have experienced not being listened to by patronizing (male) doctors and it only gets worse the older I get!

Regardless, so glad you have had such excellent treatment!

And you are right-it would have cost you a bundle here in the good ole US of A.

[fbirder in reply to ndodge]

Just a thought- either you were totally lucky with your doctors...or do you think it's because you are a male and a scientist?

Oh, I'm sure you are correct with some of them. Although my GP also treats a few of my friends and they all say he's really good at listening to them as well.

[ndodge in reply to fbirder]

That's good to hear, then! It does a body good (pun intended) when one hears about competent doctors who listen to patients.

[clivealive Forum Support]

It's a lot to do with the "One Size Fits All" syndrome

[wongy215]

Yes and so glad I did.after the 5 doses dr was prepared to give me and so far 3 of my own I managed to walk my dogs today without feeling like I'd done a marathon. 😃

[Bobonut]

Well as my coughing has taken top slot getting syncope and blue lips. my loved ones are worried for me. But I stress I have been here many many times before. I'm asthma and allergy person as well as Colitis.