Any advice on going private?

[Mr_E]

Ok, so in January I was diagnosed with a deficiency in Vitabin B12, the doc tells me that I don't have PA that I just don't absorb vb12. I'm ok at the moment but know it will be closing in on me again soon and want to explore options before it does.

I can see that there is a lot of info here, and I'm sure my queries / ramblings have been covered elsewhere but if anyone can help I would be very helpful as this is all new to me and I'm still trying to figure it out.

The stories of NHS being very rigid in terms of 12 weekly injections are well documented here and I want to see if anyone has experience in private options as I certainly won't have time to argue with my doctor before my next 'cycle' is up which coincides with a stag-do I have spent lots of money on that I don't want to feel rubbish for... I've only been round one cycle and just under 10 weeks was when I hit the wall again. I managed to get to the docs for my medicine the next week but got slightly told off by the nurse and was told it had to be 12 weeks.

I've called Bupa who advise me that they don't offer B12 injections...

I'm waiting on a call back from others, but want to check peoples private experiences here, if anyone can / is willing to help??

Questions are -

- Can you get injections done privately at more frequent intervals than 12 weeks?

- Any idea on cost?

- Any ideas on if they would be willing to inject with the Methylcobalamin 'version', which as I understand it is more active / better than the Hydroxocobalamin 'version' that the NHS prescribe

- Any idea on what sort of evidence a Private firm would want to see? Would they want to see my blood test where it was diagnosed or would my repeat prescription do the job?

- If anyone has any other words of advice I would be greatful!!

As I say I'm sure when private firms get back to me I will be (marginally) enlightened, but any help would be appreciated.

If I have to stick with 12 weeks then I can see my skiing holiday booked for Christmas 2016 being a waste of time!

[Booksellercate]

Hey,

Good that you're being proactive-it makes a difference!

I had some private injections. One with a private GP (£40). I brought my blood tests from NHS to show him, including my serum B12 test. I didn't continue with these injections as the GP wanted to do lots of tests and didn't seem to know much about B12.

I then had an injection with a private health/nutrition clinic in London. They offered 5000mcg methylcobalamin injections for £55. I just booked it, no need for referral/prescription.

The 5000mcg methylcobalamin injection gave me the worst headache of my life and I also realised that it would not be feasible, in terms of costs and effort, to continue travelling to London for this on a regular basis. So I did some research and decided to purchase my own injections and take charge of my own treatment

I've just had my 9th injection (I'm injecting hydroxocobalamin and taking methylcobalamin sublinguals) - no significant improvement yet but I do have the neurological symptoms.

Good luck whatever you decide to do

PS. small disclaimer-these were just the prices I paid, they vary from place to place, but just a rough idea of what you might expect to pay per injection.

[Mr_E in reply to Booksellercate]

Thanks for your response, if that's the kind of price range I could expect (and I can find them reasonably locally) then that could be a goer. I guess the next thing to think aout would be self injecting which I'm not sure how I feel about.

[Booksellercate in reply to Mr_E]

My mum does mine - she watched some videos on YouTube. Lots of people self-inject and get used to it quickly

[jillc39]

when I was about to go on holiday and desperate to have a B12 injection (I have been diagnose with PA with neurological symptoms) I did go to a private doctor. She gave me a prescription and I got it from super drug and then she injected me. I will go back to my nhs gp when I can get one every four weeks. four weeks is too long for me. hope this helps.....

[Mr_E in reply to jillc39]

Thanks for the response, it's good to know the option is available. Just need for a private firm to start talking to me about it! Who did you go to? Bupa flat denied that they offer the service.

[clivealive Forum Support]

Hi Mr_E

You could try "B12Boost" a spray you can buy from any major pharmacy costing around £12 for (approx) 40 daily doses which delivers up to 1200mcg methylcobalamin per four "squirts" into the mouth. This may help you "get through" the two or three weeks in the run up to your next injection.

The canister itself is less than 5" tall with a diameter the size of a £1 coin so is easily carried. The number of squirts and frequency (all together or spread through the day) is up to the individual. The spray needs to be used within six months of being opened so you'll need to take a new one with you on your skiing holiday

I wish you well and hope the stag do goes OK.

[Mr_E in reply to clivealive]

Thanks for the help, I'll try anything!

[fbirder]

Firstly, why does your doc say you don't have PA? Is it because you tested negative for anti-IF antibodies? If so, does your doc know that the test gives a negative result in 50% of people with PA? So a negative result is pretty meaningless. My summary has links to the proper scientific references - frankhollis.com/temp/Summar...

You'll almost certainly find it cheaper and less hassle to self-inject. You can get all the gear online. Don't bother trying to hunt down methylcobalamin. For the vast majority of the population hydroxocobalamin (the natural form, found in food) is easily converted to the active forms (yes, methylcobalamin isn't the only active form).

Here's where I get my stuff -

I get my B12 from versandapo.de versandapo.de/article/searc...

I get my syringes, needles and wipes from amazon.uk:

Green needles to draw the solution up into the syringe - amazon.co.uk/Sterile-Single...

Blue needles for the actual injection - amazon.co.uk/Sterile-Single...

2ml syringes - amazon.co.uk/2ML-PLASTIPAK-...

[Mr_E in reply to fbirder]

Honestly I don't know why the doc says that. Unfortunately on my follow up appointment c8 weeks after my loading injections, where I was hoping to get some answers I had the second appointment of the day and went into that quarter of an hour late so I got the feeling he was on the hop (being late after the first appointment) and I just didn't get what I wanted out of the appointment. All he said was 'if it had been left longer I could have developed PA'. I took it all at face value, maybe th enext step is to get a copy of my results.

I guess, self injecting seems to be the way forward, although it scares the hell out of me!

[Laura5 in reply to Mr_E]

Sounds like he thinks that to have a diagnosis of PA means you have to have anaemia - which is not correct.

Self injecting is not as scary as it seems at first.

[Mr_E in reply to Laura5]

Thanks for the post, but I'm not sure what it all means!! I think as a next step I will get hold of my results and see (using my amazing powers of google / the amount of information and advice found here) if I can interpret what any of it means.

[wedgewood in reply to Mr_E]

I would strongly recommend self injection . I was very very nervous about doing it, but the dreadfulness of the symptoms returning so soon after my rationed injection of B12(one every 3 months) drove me to it. After more that a year it is just routine . I don't turn a hair now. I have my health back. ALL THIS COULD BE YOURS! Best wishes!

[Auntyp62]

Hi, I am new to this, was diagnosed at Xmas and told 3 monthly injections but went back after hitting a wall at 5 weeks and doc brought them down to 8 weeks. The first couple only lasted the 5 weeks but the latest has lasted 6 weeks so far and still not hit the wall. Maybe the first few had a lot of healing to do and drain quick, I don't know. Just that it is working better. My doctor advised not to take loads of extra doses, not that it could harm me but to stop the body getting into a cycle of the more it gets the more it wants.

Being inquisitive and noticing symptoms among my family I had a gene test done which gave me the info that I do absorb b12 but the cell recycling gene was very damaged and that is why I need the extra b12 so perhaps my situation is different to those that need so much more.

[fbirder in reply to Auntyp62]

I had a gene test done which gave me the info that I do absorb b12 but the cell recycling gene was very damaged

I was unaware that there was a gene test that can tell you anything about B12 absorption. Can you tell me what the gene was?

I'm assuming that the 'cell recycling' gene was MTRR. There are several possible sites for mutations on these genes and it's only if you have two copies of the mutation in the same place (homozygous) that recycling of B12 can be badly affected. If you have just one copy (heterozygous - like me) then it doesn't make much difference.

[Auntyp62 in reply to fbirder]

I think I wrote that wrong. Yes I do have a double whammy on mtrr but still going through the data .....to be quite honest when I found out about the gene I have assumed that was my problem and not a problem with absorption.

I had test done as I have 2 grandsons with autism/ ADHD and other problems who are to see a geneticist in September and felt they needed as much info as possible.

[Mr_E in reply to Auntyp62]

I felt great for 2 weeks after loading and then had a 2 week spell of being exhausted and iritable again (even forgetting my mums birthday in the process...) they did another blood test on me which showed my B12 wasn't a problem and then I picked up again. During my first 'cycle' after loading I was up and down, since my first booster I have been feeling more consistantly better. Maybe it takes time to accumulate and a few boosters help?

[Auntyp62 in reply to Mr_E]

I would say it took years to get to this stage and getting better does not happen overnight and no matter how much b12 you have in your blood it has to get to the right places and then heal. I am a month or so ahead of you and only now is my progress more positive than negative.

I personally do not need extra injections but do have patches at the ready. We are all different and it's nice that this site gives you the opportunity to explor the different ways people handle b12 def

[Mr_E]

Ok thankyou to all for taking the time to post, I guess I need to get over the initial apprehension of stabbing myself with a needle and look at that as a viable alternative to either going private or having a row with my doctor!!