Should I consider Self Injections

[4mgs]

Hi everyone, this is my 1st post. I was diagnosed with PA by my GP almost a year ago, since then she just believes that prescribing me a B12 injection every 3 months is sufficient.

I also have an under active thyroid & I have for the last 5 years been suffering going through the menopause, so theres been a lot going on.

I feel I have started to get my hormones under control & that has made me feel better but I have these symptoms that I feel are deteriorating and my GP is not taking them seriously or engaging in conversations with me about them being part of a bigger picture of my PA. (I know this is the case for a lot of people)

I have started to have problems with Arthritis in my fingers & toes and this is both sore & restricting the use in my hands. I also suffer from tinitus which i believe has got worse & my hearing is definitely deteriorating.

Recently Ive had an eye test because I have felt my sight is also deteriorating & I was told I have the early signs of a cataract & the fluid behind my eye is loosening which could start to cause floaters in my eyes etc.

I just feel there are so many seperate things that could be seperate issues but not being considered as being connected to my PA.

Im therefore thinking should I start to self inject to see if over a 12 month period any of these symptoms either improve or at least slow down. I am nervous about going down this route but feel maybe the time has come to see if more frequent B12 would benefit me.

I would love to hear from anyone else who is either in the same situation or took the plunge & self injected & what their experience was.

[wedgewood]

I had to start self - injecting about 14 years ago , as my GP would only allow me one injection every 3 months , which wasn’t enough. I advise you to do the same if your GP will not budge . Untreated or insufficient treatment can result in irreversible symptoms ( I know -it happened to me .)

I will send you some information to your private messaging site. Of course you are nervous about self- injecting . I remember well how I felt the first time . Even a large G & T didn’t help much . Now it’s just routine . I need to inject weekly . But we are all different . You will find out by trial and error how often you need to inject . ..

Self-injecting was the best thing that I’ve ever done for myself . I can only recommend it . It is great to know that B12 cannot be overdosed . . Go for it !

[Nackapan]

Definitely consider self treating. Meanwhile put in a request into your G.p surgery fof 2 monthly b12 injections.

The surgery can snd should easily prescribe this.

In Nice guidelines

.

Should prescribe in thd patients best interest too.

Asking for 'a trial ' stating worse 5 symtoms.

Mention PAS has information for professionals

Copy in to practice Manager .

Letter will be scanned onto your medical notes.

I had alot of visual problems and bad ongoing migraines.

Still got tinnitus

But at a lower decibel

Set a frequency and keep a record .

Also make sure iron, ferritin vit D folate are in range.

? Multivit

[Annamaudebug]

I self inject and have done so for more than 15 years. I inject every 4 weeks and sometimes sooner if needed. I think 3 months between injections is ridiculous and I am not sure why it is so different in the UK than here in California. I am able to purchase without a prescription both injectable b12 and syringes from Canada. I would think you could as well. However, my Primary Care Doctor has no problem prescribing both for me and regularly checks to ensure I am not too low.

[mountmuir27 in reply to Annamaudebug]

I also reside in California. Question out of curiousity…are you using cyanocobalamin or methylcobalamin injections? I can only get cyano as a prescription.

[Annamaudebug in reply to mountmuir27]

By prescription, cyanocobalmin and without prescription from Canada, cyanocobalmin. I can obtain methylcobalamin from Germany but choose not to. Methylcobalamin is considered better; however, I have done very well with cyanocobalmin every 4 weeks. My PCP/endocron checks my levels regularly. I also take a small amount of levothyroxine and folic acid.

[mountmuir27 in reply to Annamaudebug]

Thank you so much! Cyano seems to work for me as well although needing every 2 weeks right now since I was clearly low for a long time - never tested. Also take folic acid.

[Alilev]

I could have written this myself! I also have an under active thyroid (Hashimoto’s) and don’t absorb B12 - no diagnosis for PA but my mum had it. I was given loading doses then 3 monthly injections which weren’t enough. I had pins and needles , burning hands and feet as well as pains in my hand and finger joints which I thought could be arthritis but I think it was the lack of B12.

I have been self injecting weekly for about 4 months and these symptoms have improved massively. I do still have tinnitus. I was very worried about self injecting so bought an auto injector which I have found easy to use and means you don’t have to look at the needle. GP agreed to 10 weekly injections so I still go for those so the need for B12 is on my records (for now…). I feel a lot more in control of my health - still have ups and downs, but decided I was not going to waste any more time and energy on trying to get more treatment from the GP.

I also was told at a recent eye test of an abnormality at the back of my eye and for a while I had a blurry spot in the same eye. This blurriness disappeared after a few weeks of injections. I’m wondering if the abnormality on my retina is B12 related too.

Take the plunge!

[mountmuir27 in reply to Alilev]

Tinnitus and vision oddities (will have to look up exact diagnosis) as well. Also had cervical spondy. B12 injections have improved all except tinnitus although it is now less loud. The most pronounced symptoms when I go too long without an injection are neck pain and dizziness.

[Cornwaller]

Great advice as always.

Just wanted to add that taking control of my b12 deficiency was scary but with time quite manageable and improved my health and well being enormously.

One tip. I practiced on an orange first. It builds confidence in the fiddly process without any pressure. The orange wasn't thrilled!

[wiserlady]

Morning, am in similar boat to you. Am 67, had a total hysterectomy a few years ago, on estrogen patches now. Have had an underactive thyroid and taking levothyroxine for about six years. And told this year pernicious anaemia and three monthly injections. Still feel absolute crap at times, unable to work, go out or do anything. How are you today?

[SlothMode]

Hiya 4mgs,

I’m quite new to this only been injecting into my tummy for just over three months. I was stuck on that 12 weekly cruel injection cycle before with all that unnecessary pain, falls n blackouts etc. So glad I posted here for help n jumped off that ride of pain! Now I feel better in myself n noticing small changes here n there🙏 I do have some reversing out pain but happy to accept this knowing I am slowly recovering. I did have a fear of needles 🤭 but I have got over that now lol! If u decide to take the plunge all the information u will need can be found on this lovely forum 😊🤗