Need to take the plunge with SI, can't keep waiting for progress! But should I try to get any particular bloods first?

[eclilley]

Me, again. Thanks to all who have been so helpful. I have decided that I need to find my big girl pants, take the plunge and just start SI to see if it does help the things going on that I think must be down to inadequately treated B12, and that the GP thinks can't be bc my levels were high when tested (I have had some jabs and lots of sublinguals, so yes...and, just don't test!!), even though they have no other explanation for any of them. I know it will help a lot of things that are wrong, even if not all of them. I had a jab: Jan 7th, April 9th, June 7th. Having had no jab since end Jan 2020. Prior to that had 5 loading Sept 2018, then 8-weekly from Feb 2019 to Jan 2020. I use 5000mcg methyl sublinguals.

I did already write to GP and they kind-of ignored it and just said it is important to see what the haematologist says about B12 in response to GP writing to them.... I do not have any hopes from this. Have just had x-ray on left hip & right shoulder (not had outcome yet, I suspect they're fine). They have ordered nerve conduction on my wrist to see if carpal tunnel (late July - my private physio has said it's very unlikely), and I *think* they have now done an actual referral to a neurologist too, as I said my covid vax doctor was very surprised I hadn't seen anyone already.......I have no idea how long that will be to see someone. But at least that might help a little bit.

My brother having a heart attack (I posted about) has focused my mind to the potential risks of not getting enough B12 treatment, plus the ongoing pain and return of more symptoms that had settled a bit for a couple of weeks.

So, I feel like I need help from some of you lovely and experienced B12 SI-er's!! Please

Firstly some advice re getting more blood tests before getting another B12 injection.

GP said I could book blood test to get ferritin checked (as she hadn't had that done, even though I had spoken to her about it). Before starting more jabs, I'd like to know what level important things are at so I know how much my supplementing is helping & where to go. My bro heart attack has made me aware, so thought homocysteine.

What else should I state that I want checked on that test? 'Full iron panel', or is it really just ferritin that's important?? Folate. Vitamin D (has never been checked). Potassium?

Homocysteine - is it worthwhile testing when you are taking any extra B12 on board by any means, or does it skew it? Same goes for MMA. Will GP's even order these to be looked at, or does it have to be an 'ologist'?

Anything else that should be done that relate to co-factors and/or risk/diagnosis factors?

And should the test really be a fasting one, even if GP doesn't say so?

Secondly - injecting! Help!! Right now I feel I just need to get a jab, so I am going to get one first via a private pharmacy (VitaJab), as I hope can get this very asap!

In the meantime get organised & order what I need. I will look through posts to find recent advice on what to get and where from.

Also in terms of how often? I was thinking I might initially try weekly or 2-weekly, since I have had a few jabs this yr, and see how that goes, what starts feeling better etc. If it seems like I need more often then just increase, and vice versa.

I am nervous, don't like needles and seem to have heightened pain at the moment....So any & all advice greatly appreciated!

Thank you all so much. I am so angry that so many have to resort to buying our own supplies from abroad and feeling & finding our own way with this. It is a disgrace.

Someone I know had a B12D dog - weekly jab for 4 weeks, then every 2 weeks, then once a month as it's standard 'maintenance' dose. The owner picked up the prescription (of human hydroxocobalamin + kit) for their dog from the human pharmacy (where I would get my scrips from), no problem at all..... So my Mum suggested hiring a dog costume & going to a vet instead.... haha!!!

[Gambit62 Administrator]

Unfortunately the experience of being less problematic to get treatment for a pet/animal is a real thing.Ferritin test and full iron panel isn't going to be affected by B12 supplementation - same is true for folate and vitamin D.

Ferritin and iron panel isn't something I'd expect to see as a fasting test but FlipperTD is more likely to have a definitive answer.

Potassium may not be that useful - its only a factor for people with B12 absorption problem if recovering from macrocytosis, at the early point of injections.

MMA may be difficult to interpret - it is also more complicated.

Sorry that your GP seems unaware to take on board that B12 absorption problems cannot be managed by continually doing serum B12 tests.

[eclilley in reply to Gambit62]

Thank you for that. My GP's have seemed unaware that B12 deficiency is something that needs managing at all tbh. They mostly want to just dismiss it and shrug their shoulders.

[Nackapan]

If its helpful i chose to do subcutaneous b12 injections inbetween my prescribed IM ones. Having had both fir over a year the only difference occasionally is the IM seems yo go in quicker. I was hoping IM would last longer but for me it doesnt.

I use a 30G needle

1/2"

Another needle for drawing up 21G

2ml syringe

I inject outer thigh

Stomach 2" away from belly button

Anywhere you have subcutaneous fat us okay .

When I'd got my supplies sorted the Gp changed her mind!Still glad I got it though as more control.

With frequency you can control too

It's not licensed for sc in the UK.

On the Bix of ampoules from Germany it says suitable fotr ir sc and IM

Stilck with 1 ml of fluid though

Some are made with 2 mls.

Hoping by the time you are set up the medics will change your frequency.

Yes a full iron panel should be done with ferritin.

I found it useful to have baseline levels . Vit d ,folate iron . As already said shouldn't be affected by b12 injection treatment.

My ferritin did drop. ??

Maybe an absorbtiin problem happened later thsn b12 absorbtion problem.

Don't know.

J was already supplementing vit D as had been very low.

Iron never been low before??

Hope it goes well.

[eclilley in reply to Nackapan]

Thank you very much Nackapan. I need to find some video tutorials to watch. How often are your GP injections, and how often do you SI in between?

My ferritin was 17 and my folate was 9 when the B12D was found. So iron esp I think was part of problem, but GP didn't mention either. I thought ferritin got a bit zapped once getting jabs, if you've been deficient, as the B12 starts your body making better use of it in blood?

Either way, it was pretty low and contributing to fatigue so I have been supplementing with Spatone but no idea if it's better/Good. Likewise with folate, I am taking 2mg methylfolate now, so hope it's a bit better.

Thank you!

[Nackapan in reply to eclilley]

Everyone is different.

Do work with uour doctor as much as possible.

I eventually got 2 weekly b12 injections as a maintenence dose.

Nothing else' found wrong.

Nothing else helping.

Attempts using b12 tablets and sunlinguajs to get the gap wider failed but on my medical notes as Gp wanted me to try. Then covid hit.

Nurses left.

My upper arms getting very very sore.

Wanted to try subcutaneous b12 injections at home.

Took about 3 months of writing asking getting a specialist backup to agree to give me a prescription for 2 weekly that I woukd pay the prescription charge get my ampoules from the pharmacy.

Bought my needes syringes though as problematic prescribing them??

Didn't want to push my luck and cheaperto buy thsn a prescription charge anyhow.

At that stage went for IM at tge surgery monthly which then I chsnged to 6 weekly.

O initially wasn't sure if sc woukd have the same effect as new to me.

They do.

The sticking point was sc is not licensed in the UK for b12.

So had to be prescribed 'off license' like alot of drugs are.

There was no one available to teach me IM . No nurses woukd teach me sc because of the above.

My husband was taught as has type 1 diabetes .

I wasn't comfortable trying IM

As all this was bring opposed I was still going to the surgery 2 weekly .

Not ideal for me or the surgery during covid.

I was losing confidence though as I could never book in advance and I know agency nurses used.

Each snd every one giving me 'the Spanish inquisition. Some refusing to do it ect ect ect...

Decided to buy online with help from here.

I was not going to jeopardise any improvements I'd made and return to a very dark place.

Out of the blue my Gp rang.

Shed decided to prescribe on the understanding I took responsibility.

Made it clear she'd had lots of opposition from peers.

So at present that is continuing.

IM 6 weekly at the surgery.

2 weekly prescription so that is on my medical notes I at least need them 2 weekly.

As I'd been on 2 weekly for over a yesr and now had supplies I upped the frequency. I need to progress.

I'd tried decreasing to 3 weekly s year ago as my initial aim was to get to monthly ?? Why I'm not sure as now my aim is to get functioning whatever it takes.

We don't get gold stars for having fewer injections. After all.

I've still got a long way to go.

NHS compliance awards maybe but not much uses if 2 -3 monthly leaves you bedbound. (I only ever got to 5 weeks) after loading.

No idea why :

My nitial ferritin level was 61 when very ill.

After treatment started on b12 dropped to 29 . At that level I was shaking slot and breathless.

Got a prescription but doses too high to tolerate.

Used spartone snd ferrous fumerste 210mg every other day for a year. The multi vit days I got 14mg if iron as well.

Doctor aware of regime.

I had 3 monthly blood tests

.

Finally ferritin rose to 58.

important yo have it monitored.

To make a significant rises you need more than spartone I tried this first on gps instructions of 3 sachets a day.

Ask your doctor.

Then you will get the regular blood tests needed and they look at the full picture.

I've never needed iron before .

It does seem quite common either as an absorbtion problem alongside b12 or used upnin repair as you suggest.

My folate was 8 at the start .

I took 400 mcg folic acid .

Thar was too much for me as I went above range.

I only have 200mcg in the multivit days .

The doses you are taking is quite high sbd shoukd be short term only. I know some are prescribed 5mg but only fir a couple of months.

Loading and maintenence different.

I woukd certainly get your bloods repeated 3-4 months after your last lot.

I'm taking alot fewer supplements now . Just working out a reasonable maintenence dose.

Having regular blood tests as on iron. If they settle on what I'm tsking sbd eating will then have fewer I expect.

Tried all sorts of different foods but really I'm back to eating what I used to as thus is not dietary b12 deficiency although thats still on my notes I believe.

Never asked what I actually ate just comments on my grey / yellow/ white paller

Haven't been able to check my notes yet.

I used to have quite a 'high colour

And complimented on my skin.

Not any more lol.

Hope this all useful to you.

BTW if you had no injections for a yesr it's unlikely you will need very frequent b12 injections.

Just more than you are getting.

So if you continue to have 8 weekly at the surgery why don't you trial one at home inbetween ?? If the surgery won't budge at present and you want to increase.

See how you respond to monthly.

Only a suggestion..

your decision..

Only you know how you feel.

As its all DIY. At times.

The above is only my experience .

I'm still waiting to function at 30% of the old me .

I'm sure the shock of your brother will make the whole family aware of vulnerabilities.

T c

[Sita505USA]

When my ferritin drops to 20 or below I need to get an iron infusion. I had stomach surgery in 2012, when I got out my ferritin was 3, and that was the first time I had breathlessness. Later when I would experience the rapid heart rate it would be an indicator that my ferritin was low and I needed to do an infusion.I take Gentle Iron every day, along with vitamin C for absorption. I take Vitamin D daily as well and have it tested twice a year.

There is an important synergistic action between B 12, iron and vitamin D.

Good luck, Sita.

[wedgewood]

The great thing about B12 injections is that even if they are not the answer that you are looking for -you can do yourself no harm . ( which is more than you can say for some some drugs. )

[eclilley in reply to wedgewood]

Yes, exactly. Because it help a lot previously, I pretty much know that it will help some things - such as the "IBS", migraines and headaches, joint aches and stiffness, hair falling out,internal aches and soreness under left ribs and in left midriff & back, fatigue, brain fog & forgetfulness, the weird tight band and bubbly sensations in legs arms & chest, pins & needles in toes & feet, stabbing pain in inside heel area that wakes me up, feeing overwhelmed & a bit low....... the GP just thinks I am a hypochondriac I think, because they can't explain it and just ignore me when I state that the regular B12's gradully helped to make nearly all these a lot better over the course of 2019.

It is the excruciating pain in right upper back/shoulder and the nerve pain down right arm & tingly and pins & needles in right hand, and the nasty left temple/occipital nerve-type pain, that may not be entirely B12. However, I do think that the B12 will help a bit too, as i think the nerves are having a 'heightened' response to whatever else is going on (due to inconsistent/under-treatment. So even if it is a nerve impingement (which they have not bothered to actually properly investigate since start of March), I would rather see how much getting better B12 helps before just getting stuck on amitryp (what they offered, whilst ignoring all other symptoms!)

Thank you all for your help. Any other specifics on Self Injecting, needles, supplies etc to add to Nackapan's would be great.

Take care all.

[wedgewood in reply to eclilley]

A bit of information for you

German online pharmacies that will ship to U.K.

Brexit has caused problems for German online pharmacies who were supplying Vitamin B-12 ampoules to U.K. They now have to register with U.K. customs and collect any VAT for them and also have extra paper work,because we are no longer in the single European market. So many of those pharmacies have given up shipping to U.K. . Some , thank goodness, still do .

bodfeld-apotheke.de. A large and reliable pharmacy But they will now only accept payment from U.K. by Bank Transfer . Simple if you have mobile or online Banking .They supply all the information that you need to make a transfer . Otherwise a trip to your bank , for which the charge is £25.00 !

Courier €9.89

You might be able to pay using your Amazon account . Worth a try !

apotheke-marienbrunn.de delivery -€12.95

The drop-down list of countries on this site calls the U.K

“ Vereinigtes Königreich Grossbrittaniens und Nord Irland “ United Kingdom of Great Britain and Northern Ireland “ (In case you don’t recognise it !)

The Rotexmedica packet is displayed blank . You don’t see the usual red and white packet for some reason Maybe because Rotexmedica has been bought by a French company, Panpharma , and they expect the carton to be changed( I don’t really know) But not to worry - they send the right stuff in the usual packet .

shop.apotal.de Courier €19.95

apohealth.de Click on American flag for English

pharma24.de Courier 14.90 This pharmacy sent me 100 ampoules with a use -by date of only 12 months , where other are 2 years and more . I complained , but was told that 6 months is an acceptable use-by date, and they had sent me 12 months . So ,if you use this pharmacy , don’t order more than you would use in 1year .

Curavendi.de Courier - €19.34

Amazon.de ( German Amazon ) Obtainable in English Often have Hevert B-12 depot ampoules which are 1mg x2ml ampoules ,if they don’t have Rotexmedica 1mg x 1ml . So same strength , but double the amount of liquid .

“Depot” indicates Hydroxocobalamin, which is what the NHS uses . Amazon delivery charges are reasonable.

——————————————————————————

Search for Rotexmedica B12 depot . ( Hydroxocobalamin) These ampoules are 1mgx1ml

Ref. number to get straight to packs of 10+ -03862297

For packs of 100 ampoules (10 x 10) 03862305

This is correct for June 2021 . Can be out of stock sometimes , but back in a day or two .

If a site is only in German , use a translation app , or Google Chrome .

Bear in mind that some sites refer to the U.K. as

Vereinigtes Königreich Grossbritannien und Nord Ireland ( United Kingdom of Great Britain and Northern Ireland) on the drop-down country identification list

Also plain” Grossbritannien “ . The sites named above do all ship to U.K.

Needles , syringes ,swabs and yellow sharps boxes for disposal of spent needles obtainable from

Medisave.co.uk

exchangesupplies.org

Have needles and syringes .

Intra-muscular injection needles 25G x 1 inch

Sub-cutaneous injection needles 30G x 1/2 inch

Withdrawing needles 21G x 1 1/2 inch

Blunt-ended needles with a filter are also obtainable for withdrawing .

[prillyb12]

The MD who first prescribed B-12 for me, first did a blood level test. It was high. But he said....the tests aren't reliable. Start the shots and see how you feel. I immediately felt better. However, now I'm learning that he also should've told me to take 4oo - 1000 mcg of methyl folate and some P5P (B6) because they help the B-12 work.

[wedgewood in reply to prillyb12]

German online pharmacies that will ship to U.K.

Brexit has caused problems for German online pharmacies who were supplying Vitamin B-12 ampoules to U.K. They now have to register with U.K. customs and collect any VAT for them and also have extra paper work,because we are no longer in the single European market. So many of those pharmacies have given up shipping to U.K. . Some , thank goodness, still do .

bodfeld-apotheke.de. A large and reliable pharmacy But they will now only accept payment from U.K. by Bank Transfer . Simple if you have mobile or online Banking .They supply all the information that you need to make a transfer . Otherwise a trip to your bank , for which the charge is £25.00 !

Courier €9.89

You might be able to pay using your Amazon account . Worth a try !

apotheke-marienbrunn.de delivery -€12.95

The drop-down list of countries on this site calls the U.K

“ Vereinigtes Königreich Grossbrittaniens und Nord Irland “ United Kingdom of Great Britain and Northern Ireland “ (In case you don’t recognise it !)

The Rotexmedica packet is displayed blank . You don’t see the usual red and white packet for some reason Maybe because Rotexmedica has been bought by a French company, Panpharma , and they expect the carton to be changed( I don’t really know) But not to worry - they send the right stuff in the usual packet .

shop.apotal.de Courier €19.95

apohealth.de Click on American flag for English

pharma24.de Courier 14.90 This pharmacy sent me 100 ampoules with a use -by date of only 12 months , where other are 2 years and more . I complained , but was told that 6 months is an acceptable use-by date, and they had sent me 12 months . So ,if you use this pharmacy , don’t order more than you would use in 1year .

Curavendi.de Courier - €19.34

Amazon.de ( German Amazon ) Obtainable in English Often have Hevert B-12 depot ampoules which are 1mg x2ml ampoules ,if they don’t have Rotexmedica 1mg x 1ml . So same strength , but double the amount of liquid .

“Depot” indicates Hydroxocobalamin, which is what the NHS uses . Amazon delivery charges are reasonable.

——————————————————————————

Search for Rotexmedica B12 depot . ( Hydroxocobalamin) These ampoules are 1mgx1ml

Ref. number to get straight to packs of 10+ -03862297

For packs of 100 ampoules (10 x 10) 03862305

This is correct for June 2021 . Can be out of stock sometimes , but back in a day or two .

If a site is only in German , use a translation app , or Google Chrome .

Bear in mind that some sites refer to the U.K. as

Vereinigtes Königreich Grossbritannien und Nord Ireland ( United Kingdom of Great Britain and Northern Ireland) on the drop-down country identification list

Also plain” Grossbritannien “ . The sites named above do all ship to U.K.

All needles , syringes ,swabs and yellow sharps boxes for disposal of spent needles

Medisave.co.U.K.

exchangesupplies.org. Have needles and syringes .

[eclilley in reply to wedgewood]

Fabulous, thank you.I am getting one done privately tomorrow, as have a lot of acute stress this week, so just wanted to get one without the effort & thought of starting SI. So I will then look to get myself sorted next week.

Thanks !