Has anyone been self injecting for years?

[Sunshine1932]

Hi All

My deficiency is new, only 12 months and as I'm now self injecting as of two months I have created a horrible fear.

From experience and what I read its clear doctors are either not onbaord and have very little interest of being when it comes to injections being more than every 8, 10 or 12 weeks or if we have a problem at all.

So my fear is this. Do I continue to slog my guts trying to convince them I need more B12 as in very much likely every two weeks when it causes me anxiety or just keep relying on the b12 I can buy but what if we can no longer buy our B12 that enables us to self inject.

Has anyone been self injecting for years?

My fear is probably stupid I know but you get that wound up about conditions and the Dr trying to diagnose you for something different than b12 deficiency or if they can find no diagnosis and wont accept b12 is the culprit I am then led to feel as though I'm going nuts and even told my symptoms are all in my head.

Thanks

[EllieMayNot]

I completely understand. I try not to invest too much worry but since I need the injections to live, I have concerns about what would happen if we could not longer source from Germany. I have a GP who is okay with every other day injections for now but I cannot afford it from the local compounding pharmacy if I am to inject as often as I need to, which right now is every day.

I look at it this way, the foreign pharmacies want the sales so I highly doubt that anything is going to change any time soon. If there is money to be made, it is in their best interest to continuing selling.

[Sunshine1932 in reply to EllieMayNot]

Thank you

[Miss-guineapig in reply to EllieMayNot]

I think the same, no way will they want to lose British customers, it's not like we're a huge manufacturer etc wanting them to sign a deal. I am assuming that an order on line should be straight forward xx

[wedgewood]

I’ve been self- injecting once a week for 4 years . I have given up trying to convince doctors that is what I really need . You can do both of course, but it is too exhausting . Most doctors are not interested in or knowledgeable about B12 deficiency /Pernicious Anaemia. I’m not going to explain why I think that . It is a fact and we have to live with it . The P.A.S. is doing a sterling job trying to improve matters for us . I’m not too worried about obtaining B12 ampoules , as I can travel to Germany to obtain them if necessary . I can buy 2 years supply at once, because Hydroxocobalamin has a long use-by date . But I am hopeful that PAS will be successful and one day we will be able to get our B12 ampoules over the counter .

[Gunj_redjem in reply to wedgewood]

Did 4 yrs of treatment help u resolve ur symptoms

[wedgewood in reply to Gunj_redjem]

Yes , it did . I’m just left with burning feet ( originally totally numb) . So glad that I found this forum . Don’t know where I would be had I not .

[Gunj_redjem in reply to wedgewood]

Approximately how much time b12 deficiency take to resolve major things..in ur case how long did it take apart from residual deficts?

[wedgewood in reply to Gunj_redjem]

About 6 months

[Sunshine1932 in reply to wedgewood]

Thank you

[Miss-guineapig in reply to wedgewood]

We can give you our orders 😂😂. Joking aside I don't feel worried xx

[Miss-guineapig in reply to wedgewood]

Wouldn't that be just the best solution ever xx

[226lowlane]

My wife gave up on the NHS for B12 as their tolerance levels prevent so many people getting injections and that will not change and just feeds more stress into a stressed body. Injections are easy to buy and administer. They are used in many countries so I cannot see a shortage coming.

[Sunshine1932 in reply to 226lowlane]

Thank you.

It is stressful and I must switch off from it.

[Miss-guineapig]

Your doing just fine Seren, it'll be ok. Concentrate on positivity if you can, big hugs xx

[Sunshine1932 in reply to Miss-guineapig]

Ever so kind thank you. Positivity is key 😁x

[kaybeena]

I have been self injecting on and for 12 years... it is much less expensive for me to get scripts filled than to have office visits. I have been guilty of hoarding b12 during at times. Especially when the 12 dose vials were available. Or when I didn't have insurance. Knowing that I need it for the rest of life... I do become anxious if I don't have enough to last for at least a few months. I find that when I'm feeling well and busy I can put it out of my mind. Also, I do not feel well if I go more than a few months without an injection. I have pernicous anemia and after nearly 13 years I'm finally in the 400s (supposed normal range)

[Sadie97 in reply to kaybeena]

I’ve been self injecting for bout 8 yrs (cynocobaliam) in USA every 2 weeks. My levels never get above 400’s either. So I am surprised most ppl on here their levels r 2000.

[kaybeena in reply to Sadie97]

if a b12 test is done too close after a b12 injection... the numbers are off the charts. thats happened to me a few times when I had blood work done within a day or so. its a false reading. I takes a very long time for b12 to build up to a healthy level... but the high dose they give in an injection only stays for a few days

[kaybeena in reply to kaybeena]

I mean... I think thats why. The test is close after the injection. A false reading can cause them to stop treatment sometimes, so you have to be aware of that stuff.

[tvellepern in reply to Sadie97]

How much cyanocobalamin do you inject and does your doc do blood tests? If they do blood tests, how often. My veins feel brittle and are sore throughout my arm after blood tests and I wonder if this has to continue. Also where do you get your B12?

[Sadie97 in reply to tvellepern]

1000mcg - 1ml every 2 weeks. My pharmacy gives me syringes with needles. Blood test 1x a year.

[Litatamon in reply to Sadie97]

Sadie,

I am interested to know, if it okay and not too nosy, if your GFR level (kidney function) is checked every year with your blood work and if it shows any change?

I am asking because I too self-inject cyanocobalamin and have one kidney (with very mild decline). I have read not to take cyanocobalamin in particular with kidney disease (I am not there). I am thinking of changing to another b12 source but it would be a lot more expensive and more difficult to acquire.

Having first hand knowledge about cyanocobalamin and GFR stability or change would help that decision.

Thank you.

[Sadie97 in reply to Litatamon]

Are u in USA? My GFR was checked on last blood test. I believe they just started checking this. It was fine. My doctor now tells me 1x weekly injections if I want (on every 2 weeks now). My levels never go out of 500’s range so she said do 1x week. Told her I was concerned bout aluminum. She didn’t say anything. She just said you just pee out excess B12 so there is no way to over use this vitamin. I feel so much better on 1x weekly. Being in US, unfortunately, cyanocobalamin is bout only one offered here.

[Litatamon in reply to Sadie97]

Thanks Sadie. Appreciate all the first hand information. It really helps.

I am in Canada and cyanocobalamin is what is used at our doctor's office and what I buy at the pharmacy to self-inject (incredibly inexpensive!) It is just continually listed as the black sheep in articles and with nutritionists/naturopaths, I just don't know what to think. But if I had say twenty symptoms, seventeen of them left with my loading shots. So that black sheep certainly did its job! And did it well!

As for the kidney working extra hard to filter out crap, I guess a year in will tell the tale for me. Good to hear with your GFR.

[twistylady00100]

I was diagnosed 3 yrs ago, and was told by my hematologist that injections were to begin immediately and would be lifelong. My physician would not allow me to self inject for the first year, as he wanted me to be closely monitored. I was receiving injections every week for the first year, then every 2 weeks for the second year and just this year I've been spread out to once a month, and see him every 3 months. He is very good at keeping up with me and my numbers. I do not know how long I had been deficient prior to diagnosis. It could have been a long while.