Syringe/needle advice please - Pernicious Anaemi...

Pernicious Anaemia Society

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Syringe/needle advice please

pinkflowersalad profile image
17 Replies

I've just been diagnosed with SIBO after a year of unrelenting diarrhoea following food poisoning at a festival. Also with severe methylation difficulties, B vitamin deficiencies and in particular B12 deficiency. I'm relieved to have a diagnosis and treatment strategy, but feeling somewhat overwhelmed by it all. The info here is very helpful, thanks everyone. I've ordered the B12 from Versandapo.de as suggested, and have ordered some needles from Medisave. However, I couldn't find 2ml needles and ordered 1ml fixed needle/syringe combo. However, I see that people with experience say you need a 2ml syringe for a 1ml ampule. Why is it that you need a bigger syringe than the amount you're injecting? Sorry for such a basic question, but it would be helpful to know.

I think sub cutaneous injecting feels less daunting to me, and I was thinking of beginning with a 29G needle. I couldn't find a combo of 2ml syringe and 29G needle at Medisave. It would be really helpful if someone could guide me about how to find this please, if it doesn't contravene regs.

Thanks

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pinkflowersalad
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17 Replies
Narwhal10 profile image
Narwhal10

Hi pinkflowersalad,

Bless you having a year’s worth of diahorrea. Embarrassing, tiring and sore.

We use a 2 ml syringe just because it is easier. So, if you fill a 250 ml cup to the brim, it’s full. Now walk across a room with it. It is exactly the same principle.

Yes, subcutaneous is easier, less daunting and less painful. Ok I have looked on Medisave to try and work out which fixed needle/syringe combination you have ordered. It gave me a choice of 4. I did think, Oh my ! at the prices.

If you wish to use those then we will work with that. Simple and no stress. With fixed needles, there is no need for a second needle and you cannot anyway. It’s not designed that way.

Normally, we use big fat green needle to draw up and change to a nice fine needle for the next step. However, this is all new to you, so just be kind to yourself. You are doing your best.

🐳

pinkflowersalad profile image
pinkflowersalad in reply to Narwhal10

Thanks so much for taking the time to reply. That cup metaphor makes a lot of sense! I've never handled a syringe with a needle in it before (much less injected myself) so am pretty clueless. This is what I've ordered medisave.co.uk/products/uni.... Seems to be a bit of a pink theme going on here, ended up with pinkflowersalad as a user name as everything else I tried wasn't acceptable, and hey I really do eat pink flowers, so pink syringes just jumped into the basket...anything to make this stuff less daunting eh? I couldn't imagine changing a needle as I haven't a clue how I'd do it, so thought I'd go for fixed, and then couldn't find any suitable 2ml syringes. So you reckon alright to begin with the 1ml fixed needle combo?

Narwhal10 profile image
Narwhal10 in reply to pinkflowersalad

Oh phew, they are cheaper than the ones I was looking at. Good stuff. Some members have been having a glitch with Medisave, so it’s also good to know that you have been able to purchase.

I am sure that when you were 10, you did not know how to drive a car nor be capable of cooking a Xmas dinner for six people. Same principle with learning to use a syringe and needle. Now, I’m sure you can remember some of your kitchen capers such as under cooking potatoes, over salting or spicing food, burning, scalding or cutting yourself accidentally.

Yes, this doughnut here, once had not tied scrub bottoms up correctly. I was sterile, so I just had to carry on working in the Operating Theatre. There was no way that I was letting go of what was in my hands. 👶🏻

pinkflowersalad profile image
pinkflowersalad

OMG if you could navigate the crowds of Operating Theatre with descending scrub bottoms I can faff around with my syringes in the privacy of my own home!!! BTW first self-cooked Christmas dinner aged 18 sadly I didn't know the turkey I'd carefully cooked had a plastic bag full of giblets still inside it as I roasted it. Just fit for the bin. Now I've navigated cooking for 17 for Christmas dinner.

Nackapan profile image
Nackapan

I use a 30G needle for sc. 1/2 " long ( 27-30G ) suitable A 2ml syringe I find easier to use the whole ampoule contents.

Exchangesupplies my source

Have been doing subcutaneous Injrctions for 4 years now.

Also have IM at the surgery.

Both effective

pinkflowersalad profile image
pinkflowersalad in reply to Nackapan

Thanks. Have just ordered these from Exchangesupplies, thanks for detailed advice. Good to know they're a tried and tested supplier. Very interesting observing my own reactions to ordering supplies from safe drug use suppliers. Uncovered and let go of a bit of hidden judgement...

Do the doctors' IM injections make a noticeable difference when also doing your own SC regularly? Am wondering whether to pursue B12 help from GP practice too. It was private consultant who diagnosed and recommended self injections.

Nackapan profile image
Nackapan in reply to pinkflowersalad

Does the private doctor write to your G.p and copy you in ?I do presently have an NHS prescription for 2 weekly B12 injections .

I buy my own needles ect as its no problem and difficult to prescribe as sc not licenced.

I'm pleased the need is on my medical notes .

I choose to carry on with 6 weekly IM at the surgery by a nurse always in the hope they will last longer .

To date only difference I've found is IM gets in your system quicker and can cause a headache day after .

Also can feel wired on occasions.

If very low z quicker response.

May last a day longer at times but no more .

In theory should last longer thsn sc but hasn't for me .

Sc effective.

Goes in slower .

An advantage at times .

As had so much trouble with doctors snd nurses over my treatment and taken so long to geg functioning.

I'm not changing a thing !

pinkflowersalad profile image
pinkflowersalad in reply to Nackapan

It's good to hear you've found a dosage regime that really works for you. I'm awaiting arrival of my supplies and will see how the self-administered injections go. Yes the private doc has written to my GP surgery, but having a conversation with the pharmacist there about the GP prescribing the antibiotics recommended was like being cross examined in a court of law! I decided not to fight for these but buy them myself through a lab recommended by the private doc (very very expensive.) So I may try and pursue the B12 prescription through the surgery if I think it will add anything, but try out self-administered first and feel into the (hopefully very good) effects.

Nackapan profile image
Nackapan

Hope it goes well.Also your symptoms subside .

Don't forget prebiotic if on courses of antibiotics

Treesong2023 profile image
Treesong2023

Try Exchange Supplies. Super Duper suppliers.

Keep your Bran up ! xx

charks profile image
charks

That sounds nasty. Years ago my friend attended Glastonbury when it was so small it only had one stage. She got dysentery, had gut problems for years and then got dignosed with MS. I have a strong suspicion she really had B12D. Her symptoms were so similar to mine. She died aged 50 bedbound unable to move any part of her body apart from her head.

From the way your asking for advice I'm assuming you are self treating. I don't need injections as I find high doses of oral B12 works for me. Maybe one day I will have to inject. And all the info you need is on this site. Just ask and you will get help.

pinkflowersalad profile image
pinkflowersalad in reply to charks

So sorry to hear about your friend, and your retrospective learning about potential B12 deficiency coming too late. My Mum has dementia, and I'm wondering if she has B12D as I remember her being given injections by her GP some 10-15 years ago, and then they stopped. I am receiving treatment now, thanks. I'd done everything I could to recover and then contacted a private endocrinologist/functional medicine doctor. The B12 package he recommended was out of stock, and I was desperate to get started after realising how many symptoms I have of B12D, particularly memory ones, which I'd been worrying about massively with my family history of dementia (my maternal grandmother too..) So I found this wonderful community, thanks everyone, and have ordered my supplies with help from everyone's pooled wisdom (yet to arrive.) Actually, the website the doctor recommended does have injectable B12 and syringes, just not there as the package he recommended, I've just received a reply from their helpdesk, and have now ordered from there too.

charks profile image
charks

Dementia is a nightmare to deal with. My partner's uncles got it and it was so sad to see. Luckily his mother is 92 and no sign yet. We encourage her to take B12 tablets. My mother didn't have dementia but she was bipolar and her mother and aunt were as well. When I was B12D I also had mental problems - severe paranoia. My mother also had signs of B12D. She complained of strange feelings in her legs and was very unsteady so I wonder if her bi polar was caused by B12D. She died before I found out about PA/B12D so I will never know. Maybe B12 would have saved her from electroconvulsive therapy.

pinkflowersalad profile image
pinkflowersalad in reply to charks

Am beginning to get a sense of what a political issue B12D is within our health service, and just how underdiagnosed and treated it is. So very sorry to hear about your Mum and the ECT sledgehammer.

Narwhal10 profile image
Narwhal10 in reply to pinkflowersalad

pinkflowersalad,

You have hit the nail on the head. PA/B12D is a political issue. Being a PA Member you will know that they network with those in certain positions. Read Ms T Witty’s work B12info.com of campaigning for injectable B12D Over The Counter in the U.K. In most of Europe you can purchase in pharmacies. In Japan you can buy it in supermarkets.

The latest in the U.K. is that a record number of people have been diagnosed with Dementia. Now, as we age, our stomach acid reduces and we cannot break down our food as affectively. Therefore, there’s a massive possibility that the newly diagnosed are actually Nutrient Deficient.

Poor Charks’ maternal side suffered dreadfully from neuropsychiatric symptoms. Although, I would be inclined to state they had not she was. Similarly, your grandmother and aunt had not were. Please know that a person is not an illness, disease nor a condition. They are 2 entirely separate entities.

Best wishes

Sleepybunny profile image
Sleepybunny

Hi,

There are many possible causes of B12 deficiency.

SIBO is one possible cause. You can have more than one cause at the same time.

Have you discussed diet with your GP and were you ever tested for PA (Pernicious Anaemia) and Coeliac disease?

Both PA and Coeliac disease can run in families.

I left detailed replies in the thread below with info you might find useful eg causes, symptoms, useful B12 documents, useful B12 websites etc.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

My heart goes out to those posting who mention relatives with dementia. My mother suffered from dementia and I strongly suspect she had B12 deficiency.

Search online for "B12 deficiency dementia" for more info.

I'm not a health professional.

pinkflowersalad profile image
pinkflowersalad in reply to Sleepybunny

Thanks Sleepybunny. I haven't got very far with my GP so have consulted a private consultant endocrinologist/functional medicine specialist. So far breath test is positive for methane predominant SIBO, I have probably got Mast Cell Activation Disorder (but not the £1,100 to test for it right now) various severe abnormalities in my organic acids test result, which we'll discuss at the next appointment, but we're starting on the methylation problems already hence the B12 injections, co-factors, etc etc. I will take the antibiotics recommended for the SIBO (though have to step away from my normal paradigm to do this.) Then I'll do a 2 phase low FODMAP diet after the antibiotics and consult him again 2 weeks after the diet begins. I've got a very complex course of supplements to take at various stages.

I've been hovering around pre-diabetes for 8 years managing this with keto or low carb over the years and intermittent fasting. I look back on 2 FBC tests from GPs over the last few years showing large red blood cells which they said was not of concern unless it continued. I wish I knew then what I know now, as I think I've probably been B12D for a long time and I think the GP should have known to follow this up for me. I've read that large red blood cells come after having B12D for a long time. I'm not sure if I have full blown pernicious anaemia. I'm really worried about my word finding difficulties and short term memory challenges (my Mum has an aphasic form of dementia.)

I was never tested for pernicious anaemia, and not for coeliac either but I've been completely gluten free for many years. I've had a history of recurrent severe chest infections including pleurisy.

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