some advice needed please

[Windyway]

Hi I’m going to see Dr Klein in Cambridge as recommended by some of you guys, he has sent links to order theses products from Medisave

Sharpsguard yellow 2.5ltr sharps bin

professional 70% Alcohol IPA Pre- Injection Swabs x 100

BD Discardit 2 ml Concentric Tip Syringe 2 Piece x 100

25G 5/8 “ (16mm). Neddle (short orange). Unisharp x 100

Dr Klein is going to show me how to self inject which I am very worried about I know you will get use to it but I really don’t like needles I didn’t know he was going to suggest this but it seems that lots of other people on this forum do this as the drs don’t help and give us enough B12 !!

Blood test results from October 2023

I tested positive for Gastric Parietal Cell Antibody this is why I have pernicious anemia a gastroenterologist told me ?

Autoantibody level (SK) normal

Intrinsic Factor Abs Negative

Thyroid Function test - (SK ) Normal Serum TSH level

what do you think of theses products?

I’m also seeing a private functional medical Dr & having further advanced tests and doing certain protocols with supplements & foods ,

The private functional dr has said that I have ongoing active thyroid autoimmunity although my thyroid function remains intact and my conversion of T4 to T3 has improved since I was last tested in 2018 and T3 levels are no longer low.

She also said I have a strong family history of pernicious anaemia but on my last test in 2018 I had high Methylmalonic acid signalling intracellular B12 deficiency despite normal serum B12 ,

Current serum B12 levels are very elevated (>2000) which with other symptoms I have suggests there is a problem with B12 metabolism which she thinks simply reflects me taking B12 only supplements and them staying in the blood as they are not being well processed.

Sorry this is longer than I expected any advice or recommendations would be very helpful from other like minded sufferers of this shit disease 🥺

Thanks Windyway

[Nackapan]

You could do subcutaneous b12 injections.Less daunting perhap

s.

They work just as well .

I've been doing them since 2020.

I still have IM ones 6 weekly by a nurse .

In the hope they will ladt longer ax in theory should.

They don't.

[Windyway in reply to Nackapan]

Hi Myoldcat I hope you are well,

I have started the B12 injections I did my second one this morning but I’m having difficulty drawing the blood and some of the B12 liquid is coming out onto the surface instead of all going into the needle 😩 then I’m not getting all my liquid into the needle !! It’s making more stressed about doing the injections it’s happened on the 2 times I’ve injected I had to throw the first ampoule away and use another one which I can’t keep doing I know it will get better with practice but just wanted your advice please ,

Dr Klein told me to hold the ampoule high upside down then draw the blood , I have seen a video where a nurse was showing you how to self inject but she had the ampoule upright on the surface then drew the blood I’ve not tried this but think it would stop it from dropping out onto the surface and not all going into the needle have you tried this way which is your preference?

Hope you don’t mind me asking you.

Windyway xx

[Windyway in reply to Windyway]

Hi Nackapan I’ve just resent this message that I sent to myoldcat 😊

[Nackapan]

I use a 2ml syringe

30G 1/2 " needle

27-30 G suitable for subcutaneous

Shop around

Exchange supplies I use as well as others.

Prices differ alot .

Although I get b12 on prescription I buy the needles.

Sharps boxes are on prescription but small 1 ltr ones around £1.70 in local chemists and holds alot .

[Windyway in reply to Nackapan]

Hi thanks for yr reply , it’s still so confusing to me reading all the great advice on here but everyone’s issues are different and causes different problems then knowing what’s the best thing to do ? Even though it’s all related to B12 deficiency,

Subcutaneous B12 injections ? Can you explain your reasons why this way maybe better to do please ,

Do you think the products I listed for the B12 injections that are recommended from the iron dr Klein aren’t the best to have ?

Where do you get the B12 on perception from and what type do you use ?

I didn’t know you can get some things on perception as you mentioned I’m over 60 wouldn’t have to pay Or maybe not? but would have to ask my dr 😩 to do that ?

I just don’t want to inject at all to be honest but lots seems to be doing this on this site this is stressing me and this is making my health issues worse my hearts racing beating so fast is my biggest concern and it’s been like this for so long now drs cardiologist can’t find anything wrong , could it be the pernicious anaemia now causing this ? I was diagnosed by the positive Gastric Parietal cell antibody but have read that this could be due to other health reasons so I’m very curious if this is related to some other issue I may have ? I do have pernicious anaemia in my family so that is relevant I know and the heart palpitations are a symptom I do have stomach problems & absorption problems and I don’t eat any meat and very little fish so I know I am probably deficient but like I said it’s just so confusing to me I have had b12 injections in the past and didn’t feel much better to be honest, but I am having the B12 injections now loading doses started in December 2023 the in March now I’ve talked my dr into having them every 2 mths , also I need to look at my borderline folate bloods results 4.1 I think they were last October.

Anyway I’m rambling now sorry ,

Thanks for your time and advice much appreciated 🙏

[Myoldcat in reply to Windyway]

I was taught to self inject subcutaneously by Dr Klein, wasn't looking forward to it at all but it's much less uncomfortable than the intramuscular jabs from the doctor. My husband came with me and filmed everything for reference. I only ever watched it back once and now SI every 3 days. Don't love it but do it easily enough and it gives great flexibility. For me the thought was worse than the reality. Best of luck x

[Windyway in reply to Myoldcat]

Thank you so much that’s a good idea to record it to will get my husband to do that video , did you think Dr Klein was good then ?

Best wishes Windyway

[Myoldcat in reply to Windyway]

I found him very understanding and helpful. I've stuck with his needle size as I have 100, but might investigate the smaller one next time. The effects of subcutaneous v intramuscular don't seem any different to me, except for much less discomfort with subcut. You'll hardly notice it!

[Windyway in reply to Myoldcat]

Hi I'm looking for some advice & help really I know you said you went to see dr Klein I went to see him yesterday he was very nice,

I had an iron infusion apparently it was low ( took my blood results with me from drs) , i have pernicious anaemia so I have to self inject 😩 !! i know this may sound stupid but I feel I need some further help with fully understanding how to self inject as I am very stressed about doing it after only being shown once by dr klein and he did some of that with me I don’t feel confident doing it on my own yet is there anyone I could go to see just till I get use to doing it on my own ? , I have to self inject - twice a week for 6 was the once a week for 6 weeks then have to have bloods taken and send to dr Klein then review how I’m getting on , I bought some B12 on perception and some folic acid I had heard the methyfolate was a better form and was going to try that but dr klein said that I have to trust him and the one he suggested would be fine ? do you take folate what are your thoughts on this ? he did seem to know everything about this condition, so I am going to do what he says and see how I feel ,

He also said I will need to order B12 from Germany which I know a lot on this forum do , do you order yours from Germany is so how is the supplier and what is the process please he did say we will discuss at the review but I’m just trying to get all the info I can about this so I know what I have to do .

I hope you don’t mind me getting in touch with you ,

I hope you are feeling well .

Best wishes 😊

[Myoldcat in reply to Windyway]

The whole idea of SI can be pretty overwhelming Windyway, but as others have said it will not be anything like as difficult as you might imagine.

I'm very fortunate as my GP prescribes my B12 ampoules, but there is loads of step by step info here about ordering from Germany. And i ordered all the rest of my supplies via Dr K's links. The thing I still find bit tricky is getting all the liquid out of the ampoule, but now i dont stress about that. And i can't look when I jab myself, but with eyes closed i don't feel a thing! I usually put the radio on as a slight distraction. The first couple of times were a bit nailbiting, but then I realised that you really can't do any harm injecting subcutaneously, and i got over it. And the benefits are HUGE! Maybe focus on the freedom and control it gives you over your own health? A little mantra each time you push that plunger - "I am taking control of my health and wellbeing", or "I am in control of my own recovery"... they call it reframing your experience. Anything that helps. Good luck, and after a couple of sessions I hope you will wonder why you were so anxious xx

[Windyway in reply to Myoldcat]

Hi yes I know what you mean I will get use to it but just wanted a little help with doing my first self inject really then I will have to do it myself 😊, you said that your dr GP prescribes your B12 ampoules wow I would much prefer to have this rather that having to order from Germany how did you get them to do this ? Do you have to pay for them ? I’m over 60 so don’t know how that would work ? Didn’t know think that I would be able to get them prescribed from a dr ?

Any advice would be greatly appreciated thanks for taking the time to reply and help me .

😊 xx

[Myoldcat in reply to Windyway]

I think it really depends on your gp and how open minded they are to the idea of self injecting. Before seeing Dr Klein I'd had some reasonable conversations with mine, and showed him literaturefrom the PA Society. Then I gave him the letter from Dr K saying he'd taught me to SI and I needed to do it twice weekly. I added a covering letter asking my gp whether he would prescribe the B12, and he agreed. So it is available on prescription but it seems not many gps are willing to prescribe it. I think you need to weigh up how it would go down with your doctor, i know many people here accept the infrequent injections from their surgery and then just quietly self inject as often as they need.

[Windyway in reply to Myoldcat]

Thanks again for yr advice xx

[ClaireWF1346 in reply to Windyway]

Please try not to worry. It will not be as bad as you imagine, I promise. I saw Dr K only a few weeks ago and was also nervous at the thought of self injecting. I was shaking when I did my first one! I am now a few weeks in to EOD injections and it is honestly nowhere near as bad as you think. If you have some spare flesh on your tummy, you won't even feel it using the 1/2" needle (yellow) that Nackapan mentioned. I initially bought the one Dr K recommended but it's thicker and longer so I use that for drawing the B12 in and the smaller one to inject. The links sent by Dr K are fine, that company is cheap (in my opinion) and delivery is quick. I honestly do not feel the needle going in. I was given the advice by lovely member on here to warm the vial in your hand so the liquid isn't cold and then just take your time with the plunger. I get myself comfortable on the sofa so my stomach is relaxed and honestly, it is a quick process which Dr K will show you. He is kind and will reassure you if needed - drop him an email to explain how you're feeling. We don't want your symptoms getting worse just because of this worry. It isn't going into muscle so isn't like the ones at the surgery, no pain, just a bit uncomfortable/unnatural.

As for not feeling the effects yet, I didn't feel any different after my NHS loading doses but two weeks into EOD at home, my brain fog is lifting, tinnitus is sporadic rather than constant etc. That makes the slight discomfort of injecting worth it. Please try not to worry 😊

[Windyway in reply to ClaireWF1346]

Thank you 🙏

[Windyway in reply to Nackapan]

Hi Nackapan I hope ur well ,

I hope you don’t mine me asking I’m starting my B12 self injections today 😩 after seeing Dr Klein he gave me a prescription for 20 B12 ampoules and 6 needles etc to start the injections, but I need to order more dr Klein gave me links to order from Medisave

Regarding the needles to use he recommended 25G 5/8” (16mm) (short orange ) needle

You suggested 1/2” needle (yellow where is this from please can I get it from Medisave ?

I was advised by Claire on the forum that she uses the needle recommended by dr Klein (above ) for drawing the B12 and the one you suggested to inject which I think would be better for me as I thought the one dr Klein used when he gave me my B12 injection in clinic was long and would prefer the shorter one you and others have suggested did you get it from Medisave ?

Re - folate dr Klein gave me a prescription for this which are accord Folic Acid 5mg I did mention to him about the eg - Methylated form but he Said the one he gave me would be ok ? I have seen that a methylfolate is a better one I have been told by a functional medical dr that my family history suggests there is a genetic component to problems with methylation and think this would be better option ?

Do you take a folate supplement if so which do you take and what are your thoughts on the folate supplements?

You also said you get your B12 on prescriptions is this from your dr ? I would much prefer to get mine on prescription than having to order from Germany I really don’t want to this but what are the options instead ?

Any advice recommendations would be appreciated.

Best wishes windyway 😊

[Nackapan in reply to Windyway]

I get my needles from medisave or exchange supplies online .A 21G to withdrawal the b12 but the ones you have will be fine.

I use a 30G 1/2 " needle to inject.

27-30G usual for sc

1/2-3/4 " long

As for folic acid 5mg is only short term.

I only need 200mcg daily as a maintenence .

I use hydroxcobalamin and folic acid

Never trued methylcobalabin .

Reports have suggested this does ot suit everyone and csn cause mood changes ect.

Did you go to your G.p or straight to the clinic.

Both can prescribe .

I've have an NHS prescription to self inject .

I also choose to have an IM one at the surgery rather than do it myself.

Sc you will soon get used to .

I was much worse in early treatment symptoms ramped up.

German pharmacies are fine to order from and the only option if enough is not prescribed.

It gives you control as well.

Work with your chosen doctor .

Anxiety is a known symptom of PA / B12 deficiency.

[Windyway in reply to Nackapan]

Thank you 😊

[Alilev]

I have recently started self injecting and use an auto injector as I was not too keen on the idea! It’s taken me a while to research and pluck up courage but can honestly say it’s completely painless. The only thing you have to bear in mind is that you need to order the auto injector specific to the size of syringe you’re going to use. I do subcutaneous injections with the Union Medico injector.

[Windyway in reply to Alilev]

Thank you 🙏

[Windyway in reply to Alilev]

thank you 🙏

[Mixteca in reply to Alilev]

Can you send a link to that please? Is it a needle-less injector?

[Alilev in reply to Mixteca]

www,unionmedico.com 90 Auto injector super grip. Sorry - for some reason I can’t add a link here - but if you Google the above you should find it. You have to clip a syringe into it and you must choose the size of syringe when you order it. I was advised that a 3ml syringe is best even if only injecting 1ml.

[Windyway in reply to Alilev]

Thank you