Hi al, thanks to the amazing help from this website my sister has now purchased the B12 and started self-injecting after lack of support from GPs to take her awful symptoms seriously. She started 3 monthly injections in the summer with the GP after very low levels. Since receiving private B12 she has injected once a week (3 times so far) she is feeling very up and down and sometimes has glimpses of 'normality' and then plummets down feeling foggy- brained and panicky.
What dosage should she be starting on, is once a week enough and she just has to wait until levels are back up? or more frequently to start with? Thanks in advance
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Stumpyaura
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At the start of treatment for B12 deficiency ,it is usual to have 6 injections over 2 weeks to give you a ‘kick-start “ . Then injections every other day if there are any neurological symptoms, until the symptoms fail to improve.( if the deficiency is long-standing some neurological symptoms may be irreversible ) After that , maintenance injections at intervals that stop symptoms returning . I need an injection once a week . We find out what we need by trial and error . Everyone is different , so there are no definite rules . It can become expensive and inconvenient to get B12 injections privately
. That is why so many of us self-inject.Would your sister consider this ? If bought in bulk (100 of everything ) an injection costs a little more than £1.00
B12 ampoules (Hydroxocobalamin,) can be obtained from certain German online pharmacies . All else in U.K. . For people who are Needle -phobic , there is a device called an AUTO-INJECTOR , from Union Medico in Denmark. I’ve never used one , but have heard good reports of it . Costs about €90.00
Anyhow just to say not to worry about overdosing - not possible with B12 .Also make sure that you have an adequate supply of folate/folic acid -it works together with B12 . That’s it ! Best wishes .
Did the GP give her loading doses (three times a week)?
If you've been very low in B12 you need to get levels topped up quickly. It's probably taken many years of slow depletion before she started getting treated - so she needs to get all the B12 lost over those years replaced just to get back to normal.
It's like a car that suffers a total oil leak. You can try adding half a litre every three months and it ain't going to fix the problem. It needs to have about 5 litres shoved in at the start, then half a litre every three months to keep the levels maintained.
The BNF (British National Formulary) recommends, for somebody with neurological symptoms, injections every other day until symptoms stop improving. Normally this is reviewed after three weeks.
After that you inject as often as is needed to keep symptoms under control. (That's not in the BNF, but it should be).
Thanks to you both for your replied. My sister did get the loading injections, then 2 injections since about 10 weeks apart. She now has all the stuff to self inject. Sounds like she should do her set of loading injections again them until she feels normal and try once a week?
protocols vary from country to country - and can even vary from district to district in some countries (eg US).
Suggest that you try UK loading dose schedule as given by wedgewood - but also keep a diary of symptoms - if symptoms disappear on day one and then return on day 2 and get worse from then on then that would suggest that your sister needs daily injections.
If you have neurological problems then the regime is to continue loading shots until symptoms stop improving. This is potentially different from 'until feels normal'
Pleased to read that your sister is getting NHS treatment and has the resources to treat herself if necessary.
Just wondered if your sister has thought about joining PAS or another family member could on her behalf. PAS can sometimes intervene on behalf of PAS members.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Lots of useful info about PA and B12 deficiency on PAS website.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
I wondered if you had also had yourself tested as PA can run in families. I know from personal experience that it is possible to have severe B12 deficiency with B12 levels that are within normal range.
PA is an auto-immune disease and sometimes having an auto-immune condition can increase the chances of developing other auto-immune conditions.
Thyroid problems are quite common in PAS forum members. Has she also had thyroid tests? UK GPs sometimes only test TSH which won't give a full picture of thyroid function.
May be worth her putting any thyroid results on the Thyroid UK forum on HU.
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Self Injecting
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Self Injecting?
