Help??

[Michaelaemily_]

Hi there was wondering if anyone can help I have a few questions.

I've had pernicious Anaemia since I believe 13, I'm not sure on the exact age. Back in 2017 I was on monthly injections (old doctor was lovely and really understood but sadly retired) but I moved doctors surgery and they put me back to 3 months, I've fought with them severely times to get it back monthly because after a couple weeks most of my symptoms come back mainly tiredness and feeling lightheaded and out of breath but they refuse and tell me my blood tests are normal and I have at least a 2 year supply, its extremely frustrating. I'm wondering if anyone could help with advice, where to buy my own b12 maybe? My cousin is a nurse and would be more than willing to help with injecting. I'm worried its another underlying health condition that's been undetected now and feel crazy, I've been tested for diabetes and similar things but they also come back normal, its made me worry a lot about my health.

Also wondering what type of exercise people do? I only walk currently as I get way too tired doing much more and only being 20 that worries me, im wondering if anyone else with PA has the same problem?

thank you

Michaela

[Nackapan]

Yes exercises is a problem. Especially if you are not getting the b12 you clearly need.Were your symptoms kept at bay on your monthly regime?

Write to your gp

State how you were on monthly to how you are now.

Make sure on your bloods iron ,ferritin, vitamin d ,folate levels were okay .

Get results for your own records.

Push for the treatment you were previously on.

On topics there are several posts on buying b12 . Medisave is one place you can buy needles ect.

Form an amazon account

Pay by PayPal.

Helps as you dont have to type in UK address

Some are not shipping to the UK at present.

I think

Apo.health.de was one that a member had success with.

Make sure single ampoules of 1mg/1ml

Rotexmedica depot is a make alot uses

Hydroxocobalamin

A shopping list has been formed :

Wedgewood

Fbirder

Both have done this

Decide if you want to do IM or SC .

[Michaelaemily_ in reply to Nackapan]

Hi there thanks for the reply. Yes my symptoms were so much better when I was monthly, I've been in multiple times to explain how I feel and that I think I need more injections. Last time I went in I even said many other countries do it monthly or you can buy over the counter only to be laughed at, its so intimidating. How would I go about getting my medical records? multiple times I've also been laughed at when telling a doctor I have pernicious anemia until they actually read my notes and realise they're wrong. What is IM and SC sorry? im so new to all this.thanks again?

[Suzibelle in reply to Michaelaemily_]

IM is intra-muscular (so inject into your thigh muscle, for example, which is what the majority of us do) and SC is sub-cutaneous (injecting into the fat on your belly, near your navel, as diabetics do). It's just a case of working out what you prefer as it appears there's not much difference in how quickly the B12 gets into your system (although anecdotally IM is faster). I'm not in the UK so can't comment on getting your records out of your doctor but I believe they don't have the right to withhold them from you. Might be worth a request in writing to the practice manager.

[Gambit62 Administrator in reply to Suzibelle]

Suzibelle, SQ can be done into any layer of fat - this includes the thighs. I find the belly too painful so do SQ in the thighs. Some diabetics also use the thighs rather than the belly.

[Michaelaemily_ in reply to Gambit62]

Thank you!

[Michaelaemily_ in reply to Suzibelle]

Oh thank you I understand now! That makes a lot of sense, thank you for your help

[F1lligree]

I had the same fight with my new GP after I moved. She refused any injections at all because my blood tests came back 'normal'. In the end I spoke to different GP in the practice qnd managed together back to 3 monthly. I struggled to get my medical notes, even requesting them directly my GP wouldn't print them for me. I have a Patient Access account, which should allow me to see them but my surgery hasn't enabled it. I did manage to get a photo of my blood test results summary over the last 8 years.

I self inject every 4 weeks, keeping the NHS jab in for the 12th week - I used to source my b12 from Versand Apo in Germany, but I know there have been issues with Brexit so others will be better placed to advise.

In terms of exercise, I find active stretching is OK on a bad b12 day and helps me to get moving so I can do something more complex. I have to make sure I'm thinking about the muscles I'm using so I don't injure myself though...

🤦‍♀️

[wedgewood in reply to F1lligree]

Try Amazon.de ( German Amazon ) for B12 Hydroxocobalamin ampoules . Search for Rotexmedica B12 depot . They have 10 ampoule packages available at the moment.

[Michaelaemily_ in reply to wedgewood]

Thank you! Great

[Hidden in reply to wedgewood]

Hi Wedgwood, how do you order from Amazon.de if you have an Amazon UK account?

[JanD236 in reply to Hidden]

Hi CERD2 I also use Amazon.de. You just need to put Amazon.de as the address in your browser.

[wedgewood in reply to Hidden]

JanD236 has answered you already ! Yes that’s all you need to do . You use the same password as you use for your Amazon.co.U.K. Account . Easy -peasy ! You can get it in English .

[Hidden in reply to wedgewood]

Thank you for your reply; I must be doing something wrong as that did not work for me, I will try again.

[wedgewood in reply to Hidden]

Try this German online Pharmacy , with a U.K. site address pharmasana.co.uk The prices are good . Look for Rotexmedica.B12 depot . ( Hydroxocobalamin)

[Hidden in reply to wedgewood]

I have just ordered two boxes of 10 through Amazon.de and the purchase was confirmed. I paid a little more than usual but will try pharmasana pharmacy next time. Thank you so much for your help; i have a shoulder injury after a rushed gp nurse injection and so am considering only si for a while.

[Michaelaemily_ in reply to F1lligree]

Hi thank you so much for you’re reply! Seems like I’m not the only one struggling then, it’s extremely frustrating. I also have patient access and when I asked my gp for the details I needed I was told they had no idea what it was. I did notice trying to get them from Germany most of them were saying they cannot because of brexit. I have ordered an mouth spray as that seems to get semi good reviews we shall see. I was thinking of trying stretching, will defiantly get on that thank you again.

[F1lligree in reply to Michaelaemily_]

I've found the sublingual methycobalamin tablets are reasonably effective so would probably have good response with the sprays too, but everyone seems to have different response rates. Good luck with the spray, I hope you find something that works for you (as the GP network seems to be so very hit and miss).

[Michaelaemily_ in reply to F1lligree]

Oh great! I’ll give the spray a go and if not I’ll try those tablets, I’m honestly willing to try anything at this point. Thank you so much for your help, so kind

[wedgewood in reply to Michaelaemily_]

For B12 Hydroxocobalamin ampoules try pharmasana.co.uk a German online pharmacy with a uk site address . or amazon.de ( German Amazon . You can get it in English) look for Rotexmedica B12 depot.

[wedgewood]

We have been having problems getting B12 Hydroxocobalamin from our usual suppliers , German online pharmacies .It’s apparently due to new Brexit rules . But there are ways of obtaining it . I just went online and tried Amazon.de ( German Amazon - obtainable in English-click on Union Jack at the bottom of page ) search for Rotexmedica B12 depot ( “ depot” is important as it indicates. Hydroxocobalamin B12 which is the NHS choice of B12 injections . ) I could buy single packs of 10 , but complete packs of 100 were barred . It depends on which online pharmacist is supplying to Amazon.

. Syringes , needles , swabs, and sharps disposal boxes obtainable from Medisave.co.ukBest wishes

[Michaelaemily_ in reply to wedgewood]

Hi thank you for you’re reply! I’ll have a look into all this. I’ll have a look at the German Amazon also. Thank you so much for you’re help

[TFH1]

Hiya with regards to exercise, I highly recommend going to an Iyengar Yoga class and letting the teacher know in advance that you have issue with energy being depleted by strenuous exercise. Was a game changer for me. Good luck

[Michaelaemily_ in reply to TFH1]

Hi thank you so much that’s a great idea! I thought yoga would be a good idea