Imported?

[Sambelina17]

Hi there I live in Scotland I was wondering if anyone knows where I can go to get b12 (hydroxocobalamin) imported? My hubby has been off work for months he gets the injection every three months but his symptoms aren't subsiding so we want to try giving it to him more regularly, any advice would be helpful he's so fed up feeling like this...

[Margaret-S]

Hi Sambelina17. I live in the furthest north isles of UK in Shetland. I also am having a dreadful time getting injections more frequently. At the moment I'm getting them every 8 weeks but it's not enough. I don't know where to get the injections from but I am buying B12 patches. 1000mcg methylcobalimin. They also come in 5000mcg patches. Called Vie patch they are 100% Natural and they certainly help. Unfortunately just lately I am getting diarrhoea and horrible nausea. I spoke to the Medicines reviews man on Tuesday and that was a waste of time. He actually told me that he didn't know anything much about B12 but he could only go by government guidelines. I find this utterly appalling. The patches are available on Amazon uk and cost £7.89 for 6 of the 1000mcg ones. Having pernicious anaemia means that I need them more often than an otherwise healthy person who just needs a boost occasionally. Being a pensioner I can't afford to go the self injecting route. I hope you find help for your husband. Wishing you all the best. ☺

[Sambelina17 in reply to Margaret-S]

Thanks for replying, I'll look into all options, have a read of the comment by wedgewood, might be helpful to yourself also

[wedgewood]

I have to self inject , because once every three months is insufficient for me also . Margaret -s thinks that self-injection is expensive . But if you buy in bulk ( 100 of everything ) it works out at about £1:00 a shot , which I think is very reasonable . You can obtain Hydroxocobalamin ampoules from “versandapo.de in English “ It is a very good reliable German online pharmacy .

You need to register before your first purchase . Search for Hydroxocobalamin . A drop-down list appears . Click on Hydroxocobalamin acetat , and your choices are revealed . I use 1mg x1ml ampoules . I buy 100 at a time costing €53.35 plus €9:00 courier (£54:00 ) -that makes an ampoule just over 50 pence. The ampoules have a long use- by date of nearly 3 years . There are other ampoules you can buy , but I quote the cheapest way of buying .

. Needles can be obtained from Medisave.uk . Long ones to extract the B12 and 1inch x 25 gauge for injection into the thigh . Syringes and swabs and a sharps disposal box are also needed .

I have PA and I tried patches when I was desperate . I also tried nose spray , sub-lingual lozenges and mouth spray .Firstly they didn’t work for me and I found them expensive . Injection is the most efficient way of administering B12 . All the best to you .

[Sambelina17 in reply to wedgewood]

Thank you so much, I really appreciate your help

[deniseinmilden in reply to wedgewood]

Excellent advice

[b12def in reply to wedgewood]

Hi Wedgewood. You seem to know a lot about this. It's exactly what I was looking for. I'm desperate to try injections because I've experienced a lot of symptoms and on the NHS website it basically confirmed what I suspected... b12 deficiency. I am from Scotland but now live in Sweden and my doc here said that in order to get injections you have to have had part of your bowel removed!!! I don't think doctors in general really understand how important this vitamin is and how necessary it is to function (I'm 39). She just pumps me with iron tablets for months, then we do a blood test and it comes up that it's not raised iron levels much so she prescribes more of them! My stomach and guts can't take much more of these tablets (I'm sure you know how harsh they are). So here I am looking online for information on what to buy, how much... everything really. I'm worried about buying online as I don't know if it's genuine or not. I think Hydroxocobalamin is better (from my research) as it lasts in the blood longer before you need another shot. I think I should start with one every other day for a few weeks then down to one a week, then one a month then one every 3 months. But what size of syringes, what to do with the sharps bin, how to mix it (do I need to mix it with Saline solution)? All these questions, I'd like some help with.

Thanks for the above info. I hope you can guide me too.

[wedgewood in reply to b12def]

I have had to find out about B12 deficiency by using the Internet , and joining this group . I was feeling so desperate , and my GP thought I was a nutty hypochondriac. I will never forget that time . My feet were numb.I was totally confused , I felt very giddy and of course exhausted from doing absolutely nothing . I had low B12 (150 thingies ) , but that was classed as normal . I was sent on my way - my numb feet were idiopathic , and I should eat a good varied diet ( which I already did )

I invested in B12 patches . I covered my body in them , when I found that a couple didn’t help.I sucked those Methylcobalamin sub-lingual lozenges , used B12 spray in nose and under tongue —- all useless for me , though some folk on this forum say how they help. I had to see a private doctor to get a diagnosis of PA. Then my GP was obliged to give me 5 ( yes , 5 in the area where I live ) loading doses , and one every three months which is useless for me . I nject weekly and have my life back . The feet are not 100%, but are OK . Why am I boring you with all this . I can heartily recommend the German online pharmacies - there are many . They are state controlled and you can use them with confidence .. I’ve used “ versandapo.de in English “ for 2 years . 100% reliable and efficient . You can phone them and ask for advice also . I will help you in anyway that I can, b12def . You can watch videos on u tube showing you how to inject I.M. ( into the muscle ) and su-cut ( sub-cutaneously ) some are not so good , so watch several . I use I.M. You need 2needles -one long one to withdraw the B12 , and another to inject it . Injection needle should be 1inch long and 25 gauge really fine . Absolutely painless ! Middle outer third of thigh where the muscle is nearest the surface . Do ask if you need to know anything . Best wishes to you !

[b12def in reply to wedgewood]

Thank you once again Wedgewood. You didn't bore me at all. It's good to hear what other people suffer/what their symptoms are and all your info is invaluable. I will start by calling the online pharmacy you mentioned and ordering from them. The instructions on what syringes you said helped. Do I need saline solution? I read you had to mix the b12 with it. Or does it all come together? No worries, I will call the pharmacy and they can just answer that. Next, I will look at the online videos. Yes I am sure there are a lot. I also read that hydroxo is better than Methyl or Cyano because it stays longer in the body. Anyway, I appreciate your help and will contact you if I get stuck with anything. Very much obliged for your speedy response. Good luck to you too.

[wedgewood in reply to b12def]

The Hydroxocobalamin comes in individual ampoules of 1mg in 1ml fluid or 1mg in 2ml fluid - ready mixed . I use the 1mg x1ml as then there is less to inject .Methylcobalamin also comes in ampoules , but can be obtained in U.K. in powdered form , without prescription . Then you need saline to reconstitute it .I have tried both forms of Methylcobalamin , and they were no better for me than Hydroxocobalamin, which is much more affordable . ( I use Rotexmedica ) It is easy to order the ampoules by doing it online , as I described. You can pay with PayPal or a card .

Another member said that he/she also ordered syringes and needles from versandapo.de in English . I have used the U.K. firm - Medisave.uk . Anyhow I wish you well in your quest for better health. There are more knowledgeable people than me on this forum I hasten to add .

[Gaudygoat in reply to b12def]

Hi b12def

I'm not medically trained but it is frightening the ignorance that the medical profession have about this condition. It's incredible the amount of times that trained doctors come out with statements that are fundamentally wrong. Stating that only those that have had part of their bowels removed are entitled to injections is ignoring anyone with Pernicious Anemia.

Have you been tested for B12 deficiency? If so what is your level? Be aware, there are many other conditions with very similar symptoms and if you get a B12 injection it will be months before your level comes back down to a level that you will be deemed deficit. If you do think you have low B12 but your doctor is not addressing it then I would recommend you seek out a new doctor or go armed with some of the documents that Sleepybunny has supplied to try to educate your existing one. Be prepared for a battle but while you may not turn you doctor into a convert, she may be willing to try you out with a loading dose if only to keep you quiet. You do though, really want your first injection to be administered in a professional environment in case there are complications such as an allergic reaction.

If you do go down the self injecting route, I have been self injecting for a year and would be happy to offer advice though there are many on here who have been doing it far longer.

[b12def in reply to Gaudygoat]

Hi Gaudygoat,

Thanks for your fast reply. It's really helpful to hear your advice as well. I will check out some videos on self-injecting and if I think I still need someone to hold my hand doing this (I'm quite nervous), I'll let you know. Cheers

[Sleepybunny]

Hi,

I am not medically trained.

"hubby has been off work for months he gets the injection every three months but his symptoms aren't subsiding"

Does your husband have neuro symptoms eg tinnitus, tingling, pins and needles, memory issues, balance problems, tremors plus other neuro symptoms?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

In UK, for patients with B12 deficiency with neuro symptoms, recommended treatment is

a b12 loading jab every other day followed by a jab every 2 months

Details of UK b12 treatment can be found in

1) BNF Chapter 9 Section 1.2

bnf.nice.org.uk/drug/hydrox...

2) BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Unhappy with treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

NHS Complaints Scotland

mygov.scot/nhs-complaints/

citizensadvice.org.uk/scotl...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Does he have a diagnosis of PA (Pernicious Anaemia) or is PA suspected?

If yes, might be worth joining and talking to PAS (Pernicious Anaemia Society).

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around UK and across world.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

"I live in Scotland"

You may find this link interesting, it's about a petition on B12 deficiency before Scottish Parliament.

parliament.scot/GettingInvo...

There was a B12 and Thyroid support group that met in Kilmarnock but not sure if they are still active. They used to post meetings on Thyroid UK forum.

PA is an auto-immune disease. Having one auto-immune disease can increase chances of another one developing.

Some people on this forum have mentioned Thyroid disease, Coeliac disease and diabetes as co-existing conditions.

Thyroid UK

thyroiduk.org/

Coeliac UK

coeliac.org.uk/coeliac-dise...

For patient with B12 deficiency with neuro symptoms, NICE CKS link recommends GP seeks advice from haematologist.

NICE CKS

cks.nice.org.uk/anaemia-b12...

Neuro Symptoms

Has he been referred to a neurologist if he has neuro symptoms? I think it's a good idea to exclude possibility of other neuro conditions.

Blood Tests

Has he had recent results for folate, iron and full blood count?

I read somewhere that Vitamin D deficiency was quite common in Scotland. Has he ever had a Vitamin D test?

I sometimes use high strength sublingual (under the tongue) B12 lozenges. I have seen these in UK health food shops and also available from a popular internet retailer.

[Gaudygoat]

Hi Sambelina17

I live just outside Edinburgh and have been self injecting weekly for a year now and it has made a huge difference. At first the three monthly injections seemed adequate but as time went on I started to find the symptoms returning earlier and earlier after my injection until I was really struggling to function and in danger of losing my job. I had tried everything but patches and the most effective were sublinguals but even they did little more than take the edge off the symptoms.

I ordered everything from versandapo.de including needles and syringes and alcohol pads. I've not worked out if this is the most cost effective way to do it as I have not yet finished my supplies. It was a large initial expense - 93,87 €, just over £80 but it does buy just short of two years supplies at about 85 pence a shot but less than a pound a week is a very small price to pay for the difference it has made to my life.

I don't know if you live anywhere near Edinburgh but there was a meeting in November and talk of another get-together though I've not heard anything as yet. If you are nearby and wanted to chat I'd be happy to.

[Siobhan1965]

Hi Sambelina17, I’m from Inverclyde Scotland and self inject every 2 or 3 days at the moment. Started in early Nov so still early days. Difference is remarkable though. Hoping to get to a weekly jab at some point soon.

I used the sites as recommended above with no issues - Medisave and Versandapo - delivery within a few days and works out relatively cheap if you buy 100 at a time. Think it was £75 in total from memory and I’ve still got a few months worth left.

Good luck

[Sambelina17 in reply to Siobhan1965]

Thank you so much, he went back to the doctors again yesterday armed with piles of research we have done and yet again fobbed off so I think that's the option to try

[Sleepybunny]

Hi,

"went back to the doctors again yesterday armed with piles of research we have done and yet again fobbed off "

Sorry to hear he got fobbed off but sadly have had similar experiences in past.

I prefer to put what I want to say eg symptoms, extracts from B12 articles, family medical history, relevant test results in brief as possible, polite letter.

My understanding is that in UK, letters addressed to GPs are filed with a patient's medical notes so are a record of issues raised and may be less likely to be ignored. I include a request in letter for a copy to be placed in my file and always keep my own copy.

See letter writing link in my post above.

If he has a PA diagnosis and is a PAS member then PAS may be able to intervene/offer support.

PAS membership

pernicious-anaemia-society....

Neuro Symptoms

Some UK forum members with neuro symptoms, who were trying to get injections more often than every 3 months have passed on info in discussion or in a letter about neuro consequences of under treated b12 deficiency.

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, only available to PAS members.

pernicious-anaemia-society.... See page 2.

b12deficiency.info/b12-writ...

b12deficiency.info/b12-writ...

In the end, many on this forum go the route of self treatment because they find NHS treatment is not enough.

I am not medically trained.