Log in
Pernicious Anaemia Society
17,552 members12,120 posts

Self Injecting B12

Hi

My B12 is always low unless I supplement.

I am so sick of taking so many pills every day to assist in my health upkeep.

I have Hashimoto’s which had advanced enough to cause Primary Hypothyroidism. I also have Coeliac Disease but this is well controlled with a strict Gluten Free Diet.

Does anyone else self inject with B12 and is it worth it would you say? Looking for any advice at all.

I’ve posted all my latest labs before on my profile but here they are anyway:

TSH - *0.07 (mIU/L 0.27 - 4.20)

FREE Thyroxine - 13.6 (pmol/L 12.00 - 22.00)

TOTAL Thyroxine - 75.1 (nmol/L 59.00 -154.00)

FREE T3 - 4.37 (pmol/L 3.10 - 6.80)

REVERSE T3 - 21 (ng/dL 10.00 - 24.00)

REVERSE T3 Ratio - *13.55 (15.01 - 75.00)

Thyroglobulin Antibody - 22.90 (IU/mL 0.00 - 115.00)

Thyroid Peroxidase Antibody - *551 (IU/mL 0.00 - 34.00)

Folate (Serum) - *2.90 (ug/L 2.91 - 50.0)

Ferritin - *163 (ug/L 13.00 - 150.00)

I also had a 4-Point Saliva Cortisol check done and can confirm the following results:

WAKING - *1.830 (nmol/L 6.00 - 21.00)

12 Noon - 5.780 (nmol/L 1.50 - 7.60)

4PM - 3.00 (nmol/L 0.00 - 5.49)

BEDTIME - <1.5 (nmol/L 0.00 - 1.99)

My Vitamin D which was low is now normal 103 (nmol/L 50-200 following supplementation with an Oral Spray which I will continue with.

My B12 has increased from 187 but remains extremely low end of range at 209 (ng/L 180-900) but Pernicious Anaemia has been ruled out (thankfully) following Intrinsic Factor Antibody check - 1.7 (U/mL <6). I am now supplementing with a B12 Oral Spray.

My medication dosage at the time of these tests was 50/75mcg Levothyroxine on alternate days and 10mcg T3.

(Although today I have been told to just go to 50mcg Levothyroxine daily from now on based on these results).

I have recently stopped supplementing with Selenium because of build up.

And I have re-introduced Zinc and a BComplex only this week.

10 Replies
oldestnewest

Many people on this forum self inject B12. What specific advice are you after? Am sure all of the Qs you have will already have been answered on here somewhere. I've been self injecting since August.

1 like
Reply

Well, I’ve never did it before. My GP hasn’t offered it because my B12 is technically in range although to can see it’s very low end of the range.

I supplement at the moment with an oral spray but only just started so not sure what good it’s doing if any.

I supplement with so much I was wondering if an injection would get my results up quicker without having to pop a pill every day or to spray 4x daily.

I’m aware there are different types of B12 injections - I wondered which is more effective?

Also how much it is and how often people inject?

And lastly, I don’t know if it’s ok to share sources in where to purchase them on this site? I know some don’t allow that but it would be useful if it’s allowed.

X

Reply

I get mine from Goldpharma: Rotexmedica hydroxocobalamin 1mg/1ml x 10 ampules. Costs me about 15 GBP. Last lot arrived within 10 days. I get my needles etc from needle exchange. My levels are in range and I am still tinkering with my dose frequency. Had initial loading dose with GP but now injecting once every 3 days. I tended to get bad headaches with methylcobalamin sublingual tabs. I also supplement with folic acid 400 and vitamin D. Some improvement in symptoms but fairly early days to tell (started in August). Most symptoms are neuro in nature. Hope that helps and good luck

1 like
Reply

Have a look at Hidden's post where he gives a copy of his order: healthunlocked.com/pasoc/po...

1 like
Reply

It is definitely worth it but you must have your first injection at a medical centre or clinic where they could take care of you in the very rare incidence that you might get an allergic reaction: it is good to be in a safe. They could then show you how to do it.

For other information you could look up my profile by double clicking on my name and scroll down to see my post "My Experiences".

1 like
Reply

Sadly a negative anti-intrinsic factor antibody test does not rule out pernicious anaemia. This test has problems as 40-60% of those with PA will test negative, so you still may (or may not!) have PA. Either way coeliacs is associated with B12 absorption problems and consequently B12 deficiency so it would not be unusual to need injections due to this alone.

Do you have symptoms of a B12 deficiency? pernicious-anaemia-society.... If so I would take a copy of the B12 deficiency guidelines ( pernicious-anaemia-society.... ) and highlight any relevant parts and go see your GP to request B12 loading dose injections and maintenance injections for life. Not sure what dose the B12 spray is but if it is a high dose one (eg better you) then you are absorbing only tiny, tiny amounts of it... just enough to not be deficient according to the blood test ranges but most likely not enough to feel well. I would hold off taking this until any blood tests have been done.

I would work with your GP (and/or any GI consultant you may see for your coeliacs) to get injections started. The pernicious anaemia society may also be able to help though you would need to join. Only if that fails to start appropriate (or adequate) treatment would I consider starting self injections. I'm not a medic but ideally you want to have your ongoing need for injections on your medical notes (in case of illness or incapacity in the future) and as has been mentioned above the first injection needs to be done with medical supervision in case of allergic reaction.

2 likes
Reply

Extremely useful reply. Thank you.

As ever my doctor won’t acknowledge there even being a B12 problem because the blood result is in range.

It was 187 (range 180-900) and I’ve managed to get it up to 209.

She wasn’t interested in PA so I had intrinsic factor Antibodies checked privately and they were in normal range.

I will raise it again at my next doctors appointment. I hold out little hope of being heard though.

Thank you again!

Reply

Good luck. Let us know how you get on. :-)

1 like
Reply

Your body cannot function properly without adequate b12. One area it effects is the thyroid.

hypothyroidmom.com/10-nutri...

I can only imagine how poorly you must feel.

Please know that once your b12 is optimal you may need to reduce your thyroud medications as your body starts working of its own accord which with the thyroid medications, may shift you into hyperthyroid, which will also feel bad.

Good luck wirh your doctor.

1 like
Reply

Thank you xx

Reply

You may also like...