B12 self injections : I have Hashimoto... - Pernicious Anaemi...

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B12 self injections

Deetha
Deetha

I have Hashimoto but now my levels are good there I realised I still had symptoms of brain fog, joint pain, tingling in toes etc so took the bulls and by the horn I have recently started to top up my B12 and got advice on this forum for needles and where to buy the B12 etc and also got help on how to inject from a colleague at work (a doctor) but from reading here a lot of people are telling or asking permission from their Dr first so should i have had my Drs approval before self injecting? Can I just inform them at my next review in three weeks but carry on anyway?

I have to say I am feeling a lot more clear headed after the two weeks and four injections - last B12 reading before I started this was 367. It was through desperation really as my job was suffering but they would not inject me more regularly that every three months.

Thanks

9 Replies
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clivealive
clivealiveForum Support

Hi Deetha personally, given that you are having B12 injections from your surgery and they won't give you more frequently than 3 months, I'd be inclined not to say anything about self injecting in case they refuse to treat you at all.

It is perhaps advisable to have someone with you on the first occasion in case you have an allergic reaction but this is just a precaution.

You cannot overdose on B12.

Do you know your Folate level?

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and this is only my opinion.

I wish you well

.

Deetha
Deetha in reply to clivealive

Thanks clivealive.., I was going to say nothing to the dr as well!

The last folate was in 2016 and was 12.8 and they don’t seem to test regularly for it; ferritin done March 2018 was 19 if that helps ( range is 11–336).

Marz
Marz in reply to Deetha

As you have Hashimotos I am assuming you are taking thyroid hormone. On Thyroid UK here on HU it is often suggested you need Ferritin around 70 for the Levo/T4 to convert into the Active T3.

Have you had VitD tested ? Some of your symptoms could be low VitD.

I too have Hashi's - Crohns and a B12 issue 😊

Deetha
Deetha in reply to Marz

Hi marz

Yes I am on Thyroid UK and currently take 150mcg per day and have a reading of 0.29 TSH which is good for me now and that’s why I need to concentrate on B12 now; I take 4000ug of Vit D &calcium per day also. I have intrinsic factor issue so hence the PA....

Good to know about the ferritin level so will take supplement for that.

Thanks

Marz
Marz in reply to Deetha

VitD improves the uptake of calcium from foods so taking mote is not always a good idea. Are you taking VitK2-MK7 to ensure cakcium is directed away from the arteries and soft tissues and into bones and teeth. Magnesium is an important co-factor too.

Taking a good B Complex will keep all the B's in balance and give you Folate/Folic Acid too.

As you will know fron TUK it's not the TSH that matters once on medication but the T3 result which needs to be near the top of the range. T3 needed in every cell of your body !

VitC will help iron absorption and liver once a week should give you a good supply. Always test Ferritin and Serum Iron to ensure levels do not go too high. I have read that Ferritin can be low and Serum Iron higher - so best to have an Iron Profile done. Too much is not good ....

clivealive
clivealiveForum Support in reply to Deetha

Try to include plenty of leafy green vegetables, sprouts, broccoli. asparagus, spinach, peas, beans etc in your diet. Many breakfast cereals are now being fortified with folic acid.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

Hi Deetha I chose not to tell them as they were already being pig headed with me and I was worried they would be even more awkward.They seem to hate the idea of people taking their health into their own hands as they see it as undermining. Them.I know this isn't always the case but it is with my GPs.I feel like a different person since treating myself.

Hi Deetha

6 months ago I started to SI to see if I would feel better. Ive had PA for over 5years and every 3 Month's have left my doctor's and cried with frustration and anger at their refusal to increase my injections and also at my own inability to explain my symptons/health clearly through the brain fog. I've self injected every 5 weeks and improved immensely to the extent I felt strong/capable enough to hold a proper conversation at my surgery. I've explained my previous symptoms and, those that had improved since SI. I said though that I didn't want to SI further but clearly more injections were helping. I knew by the way she was banging her keyboard writing her notes she wasn't happy and she just kept quoting the NICE guidelines of 3 monthly injections and how her hands were tied because if this. However I percevered as much as I could also trying to quote the guidelines about neurological symptoms and treating the patient etc. She offered me another b12 blood test to check my levels again. When I said it would probably be in normal range or even high because I was self injecting , she said 'well let's wait until you feel they are low and then do it,. Anyway, I still didn't get anywhere so am now going to write a letter to the surgery with printed guidelines and try again. I haven't been refused treatment and am due to have my next injection soon which I'll go to the surgery for. I'll keep you updated as to whether I get into strife. Whatever happens I feel better in my health and better that I've told them. It's important that they know 3 monthly just doesn't work for most. Kind regards.

I really hope you get somewhere with this as that would be s great success for you and a good lead for us sufferers. KR

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