Log in
Pernicious Anaemia Society
16,694 members11,558 posts

SI: can't bring myself to do it - advice?

Hi all

I was diagnosed w PA last year although my antibodies test was negative. MyB12 had dropped below the magic number quite substantially after 8 weeks without oral supplements which had kept me just inside the minimum.

I bought the hydroxy, needles etc and managed to SI for a couple of months after my loading doses which just made me feel exhausted. I gained about a stone and I'm still not sure why but haven't been able to lose it, even when I began thyroid treatment under a private GP because again, my results were normal.

I had my genes looked at and I don't have the MTHFR but wondered if it was the hydroxy rather than methyl which was wrong but running my results through various analysers doesn't say to avoid anything other then "methyl donors"... I'm confused.

I hit a vein in my thigh and along with feeling even worse - exhausted, zero energy etc, I just stopped. Now I can't bring myself to begin again even though I know it won't have been the B12 alone. If I could SI once a week or alternate weeks I want to see how that works but I'm scared of more weight or even more fatigue. Has this happened to anyone else??

3 Replies

Researchers now believe 'leaky gut', leads to autoimmune diseases, many of which are linked (there are five in our family with thyroid and other autoimmune conditions).

You probably already know that Hashimoto's symptoms often overlap with PA/B12 deficiency as I see you are on TUK forum - good advice there, as you should be treated optimally (not just TSH, but FT4, FT3 and Thyroid Anti-bodies should be tested). I found Dr Toft's little book, 'Understanding Thyroid Disorders', invaluable in persuading my GP to treat adequately, as I only began to feel well when TSH was suppressed. A gluten free diet and daily spoonfuls of sauerkraut - the most effective probiotic I tried - also gave amazing relief from years of painful digestive problems.

*With PA, low B12 and Thyroid disease, absorption of all essential nutrients will be affected so it might be advisable to ask to be referred to a gastroenterologist.





*The findings in the above link highlighted an increased association of PA with other autoimmune diseases, such as type 1 diabetes, vitiligo and in particular, Autoimmune Thyroid Disease . Atrophic Gastritis and autoimmune thyroid disease are closely linked with ATD being present in about 40% of ABG patients[41]. "These data suggest that, in patients with autoimmune disorders, in particular ATD, a possible association with PA should be suspected and excluded."

"The diagnosis of concomitant autoimmune thyroiditis and PA may have an important clinical implication, in particular, in those patients who require replacement therapy with thyroxine. Recently, it has been reported that patients with impaired acid secretion may present with thyroxine malabsorption that requires an increased dose of the drug[42], and in patients with PA, associated hypochlorhydria is always present, due to the loss of oxyntic mucosa[4]."


"PA is an often silent and under-diagnosed autoimmune disease, because its onset and progression are very slow and patients may become used to their complaints. Nevertheless, the clinical consequences of undiagnosed PA may be serious, including gastric neoplastic lesions. Thus, gastroenterologists should increase their awareness of this disorder, whose definite histological diagnosis may be preceded by reliable noninvasive serological screening."

The link below was originally posted on TUK by 'Diogenes'- Dr John Midgley, scientist and advisor to TUK :



Re. Self injecting, I started off injecting sub cut (apparently there is little difference to absorption between SC and IM) and now feel more confident with IM. I have occasionally hit a vein (probably inevitable when starting to inject frequently) but, apart from a little bleed and bruising, it has not caused any problems.

I really hope you begin to feel better with optimal treatment of both thyroid and PA symptoms soon.

1 like

MTHFR really affects the metabolism of folate rather than B12 ... there are some other, much rarer gene variants that can affect metabolism of B12 - ie affect processes that go on in cells and it sounds like none of those have shown up in whatever genetic tests you may have had done.

Quite possible that there is something else going on that isn't related to B12.

Hitting a vein is something that happens to me occasionally - and something that I've learnt to live with but understand that it could dent your confidence.

1 like

Yes My case was similar and I told doctor I thought it was leaky gut From the nsaid I had been taking Put on PPI to protect stomach for five weeks and had endoscopy to check stomach Luckily no scaring Had B12 injection and felt great cos all vitamins were fab best blood results ever had That was in May He had diagnosed me with fibro but after PPI all pain had gone Had gone on the leaky gut diet during that time no gluten dairy sugar caffeine alcohol just had 3 monthly B12 and next day was very dizzy had to lie on floor for four hours Read the instructions inside the colabamin box and it said be aware of potassium depletion which I think it is cos had it last year and when I ate banana it went Over past few days have upped potassium foods and used magnesium oil which has relieved the osteo in fingers . I began with this over two years ago, weight was all over the place and during that time put on over Two stone The reason I went back to doc .was cos I lost 8lbs in a week and wasn't trying to This obviously not resolved for me and need to go back to docs At moment taking sublinguals swansons Adenosylcobalamin and Hydroxycolabamin and they seem to suit me better. Seems to me that my gut still not processing food properly Am also trying Inulin after watching trust me I'm a doctor Good luck

1 like

You may also like...