B12 Injections closer

[Mozza127]

Started my last 2 injections every 3 weeks instead of every 4

Cant explain the difference still a long way to go but it amazes me why doctors don't sort things out

[dippyduck]

Because you only actually need two injections per year to keep your stores up according to the nurse who gave me my injection last week. Sigh... when will they listen. I've been back and forward for the past two weeks fighting with my GP to retain every 6 weeks but at least they relented eventually

[Mozza127 in reply to dippyduck]

I Self inject as well as my one of docter every 8 weeks was every 12 but I told them it wasent enough.. I was self injecting every other month but tougue was burning and symptoms where creeping back slowly so now got it down to every 3 weeks

[wedgewood in reply to dippyduck]

Even if we have stores in the liver , we cannot make use of them , due to PA patients lack of intrinsic factor . Why doesn’t the medical profession realise this ?

[Mozza127 in reply to wedgewood]

I don't get it it's not that it's expeniveThink it more so the symptoms... As in trying to find the source of it.to much like hard work It took them 7 weeks to sort mine.

This furum helped me a lot from the begin to self injection

[Hidden]

Doctors are extremely threatened by B12.

Probably because its effects challenge every aspect of their teaching and cannot be explained in simple terms.

In my mind it makes sense - you have a point zero for the human body in terms of essential vitamins and minerals. If any of them are missing, the body breaks down.

So doctors can follow guidelines for support. But they may never fully understand it. And thats because it goes against all medical logic.

Eventually, the world will realise how essential B12 is. Perhaps once the Vegan dream comes crashing down in a haze of megabolastic madness

[Hidden in reply to Hidden]

Hi Firefly100, you have made a really interesting point. The worldwide move towards veganism (as a vegetarian I think this is great but that's just my view) will cause so much b12 deficiency that health services will feel the impact and have to address it.

[Mozza127]

Yes it madness I was fit as a fiddle 2 years ago b12 has done me in.. On the up now

[wedgewood in reply to Mozza127]

Glad to hear that 👍👍👍

[Cherylclaire Forum Support]

I also always thought of myself as uncannily healthy prior to B12 deficiency.Six years down the line, I have begun to accept that I will not get back to that state, but will focus on what I have managed to regain - and preventing any relapses or further deterioration by self injecting.

Despite EOD injections from 2017, I still have some symptoms every day and have only managed to reduce that frequency to every three days since 2019, and still go back to EOD if necessary (eg recovery from covid).

Improvements made:

no more feeling of crawling just under skin, like ants (formication)

no excessive hair loss (possibly folate ?)

no bleeding gums (possibly folate ?)

no more heart irregularities (24hr monitor found ventricular ectopics- uncomfortable, not fatal)

no longer need a nap in afternoons (or sleep for 14 hours)

can shop in supermarket without dizziness/confusion/air-hunger/sensory overload- and later exhaustion ("supermarket syndrome")

less cognitive issues/ inability to select or grasp correct meanings of words or read expressions- the need for simplification

far less sore/split/bleeding corners of mouth (angular cheilitis)

less "depression" (lowest part of mood swings)

less joint pain

less lost hours (fog)

much less numbness

much less shaky arms/legs on exertion

and do not ever now get inability to make legs move without having to will them on, step by step !

Still working on:

every day burning tongue (piecrust /coated) - seeing oral medicine consultant and ENT consultant checked for nasal polyps (none found)

saliva duct and gland problems

osteoporosis of spine and osteopenia of neck - lots of walking, prescribed daily vitamin D and Raloxifene, Dexascans

left hip/ lower back pain, muscle loss -lots of walking

every day abdominal pain, diarrhoea - have never found a dietary solution to this problem

Greatest personal loss: inability to concentrate/absorb information and short-term memory loss - leading to job loss and a mound of unread books. This has improved a little, but not enough. Graphic novels seem easier: visual memory not as bad. This has also prompted a reluctance to contact "old" friends (ones who remember who you were).

My GP has in the past been very helpful and supportive, and I have had plenty of tests, scans, consultant appointments. No PA diagnosis. Initially B12 deficiency, low vitamin D, folate and ferritin found. I have found little understanding/ acknowledgement, from primary care to almost all consultants, regarding the range of B12 deficiency symptoms. Without this, all symptoms are treated or explained away independently. This is why I still chart ten of my symptoms daily, record every injection and tell medical professionals the truth about what I do. That does not always pay off - some become distracted by this and waste appointments trying to persuade me not to self-inject. A GP that I'd only ever seen once had my NHS injections stopped by calling a practice meeting while my regular GP was on holiday - I went to him about heart irregularities !

None of these alarmed professionals have found an alternative answer for me.

They are working and I can't. I'm currently living off my savings.

Continuity, with a GP you can trust, who you can see face-to-face was, to me, vital- she could see how ill I was and what a difference it made to give me more frequent injections (2 a week for 6months).

It worries me that this contact is currently impossible -and likely to remain so. I can't go through all this again with someone else- building trust takes time and effort and goodwill on both sides.

Only one consultant ever told me that I was doing exactly the right thing with self-administered EOD injections and to keep doing it because it will take a very long time- I think he saved my life. So glad my GP did not give up trying to find answers or I would never have met him. He is an NHS ENT consultant who could tell B12 deficiency by looking at my tongue. No blood tests. He, three years later, performed my nasendoscopy- giving me a chance to tell him in person what that meant to me.

My opinion would be to work on getting as close to who you were as you possibly can, and then maintain that. It's your life you are getting back to.

I wish you the best of luck.

[Sleepybunny in reply to Cherylclaire]

"It worries me that this contact is currently impossible -and likely to remain so"

Me too Cherylclaire....

[Cherylclaire Forum Support in reply to Sleepybunny]

Partner was told, when complaining about new system to a GP, that it was a five-year experiment and that patients "seemed to like it".Good reason, if you don't, to make that clear, otherwise they are only hearing from the patients still bothering to contact them.Feedback from the happy -and no-one will be looking at the altering demographic.

[Hidden in reply to Cherylclaire]

Seemed to like it ! I find that strange as we have had to fight to get it reinstated. Like everything they will tell you what they want you to here, not the ones who suffer as a consequence.

[Cherylclaire Forum Support in reply to Hidden]

Those who don't like it are probably too ill by now to complain -or wait that long for their call to be picked up ! Wonder if A&E are as keen on this new remote GP service ?

[Hidden in reply to Cherylclaire]

If it wasn't for the paramedics coming out at 2.30am and asking questions regarding my partner I doubt if we would have got faceto face doctors appointment. They explained that because of the pain he was in, that the trip to hospital and the likelihood he would have to wait another six to eight hours he was better where he was.

I think the Paramedics have got the short straw, deciding who should go to hospital and those better off at home.

A very scary situation we are all in.

[MoKayD]

I get my injections once every three weeks. This seems to be the sweet spot for me. Monthly left me feeling yucky the last week of the month.

[Mozza127 in reply to MoKayD]

Me too. I've come down to three