Hi all, I've searched the forum about how B12 /folate is effected by oral contraceptives, which I have been on for over 20 years. The last posts I can find are from 5 years ago.
I am wondering if there is any new info.
I am on B12 3x a week with GP for 6 weeks now,(I won the battle for more than 2 weeks). I'd had Neuro symptoms. But I think they don't want to continue this much longer.
In the meantime I'm starting to wonder about the cause of my deficiency, also ferritin deficient and folate deficient. Am on iron and folic acid5mg).
I read in Dr Candy book that OC can reduce B12, but I don't know if this could be the cause. Perhaps the only way I will find out is stop the pill!?
Is this worth doing before other investigations?
Also what other investigations should I do, IF antibody was negative. I'm thinking of asking for H pylori test and SIBO test?
Also should I get an MRI to check for SACD? My foot is still going numb when I walk, although things are much improved.
Any advice new info in this area welcome.
Thank you.
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Isolayslas
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I can confirm the pill and HRT did affect me . I was sick for months and couldn't workout what was causing the vomiting until I started to stop different things (food then HRT). Eventually found out I had B12 deficiency.
No I believe I had low b12 and that the pill/hrt drained my system further. Very much like other medications that can interfer with vitamins and minerals! Due to nerve damage etc I have monthly injections and also have my own supply both for me and my partner as the nhs in our area treat b12 injections like the crown jewels and very reluctant to treat people.
Any chance of internal parasites eg fish tapeworm?
Have you eaten raw or uncooked fish eg sushi, smoked salmon?
Have you lived or stayed in an area where internal parasites are common?
Giardia Lamblia (also known as beaver fever) is another parasite that can lead to B12 deficiency and there are others.
One clue that internal parasites might be an issue is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found with results for Full Blood Count (FBC).
"Also should I get an MRI to check for SACD"
If you are concerned that SACD is a possibility, worth discussing with your GP.
Referrals to specialists are expensive and there is financial pressure on GP surgeries so I suggest you put any referral request into a brief, polite letter to GP and include evidence that supports request eg symptoms list, extracts from UK documents etc.
If GP won't refer to a haematologist, you could ask them to write to a local haematologist for advice on how to treat you.
Be warned that there is ignorance about B12 deficiency and PA among some haematologists, neurologists and other specialists so no guarantee that a referral will lead to better treatment.
"I am on B12 3x a week with GP for 6 weeks now,(I won the battle for more than 2 weeks). I'd had Neuro symptoms. But I think they don't want to continue this much longer."
The BNF link below states that every other day loading injections should continue for as long as symptoms continue to improve, for those with neuro symptoms. There is no set time limit for how long the every other day injections can continue for, although BSH Cobalamin and Folate Guidelines suggests possibility of a review after 3 weeks of them .
Symptoms Diary
You may find it helpful to keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received. If your symptoms continue to improve, you could show them evidence from your symptoms diary if they try to stop your loading injections. When you are moved onto maintenance injections, a symptoms diary could help GPs to work out how often you need them.
See Point 1 in letter writing link down page and ask them to check their BNF book Chapter 9 Section 1.2 if they try to stop your loading injections.
BNF link below outlines two recommended patterns of treatment for B12 deficiency in UK
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links in this reply.
To find local guidelines for your area of UK ...
1) search forum posts using terms "local guidelines"
2) search internet using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is managed.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more on causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
In the years prior to my diagnosis I was given hrt to treat my symptoms. It did not work and eventually I was diagnosed with PA. After 7 years on hrt I have very gradually weaned myself off stopping completely a few weeks ago. This has been in conjunction with increasing SI. It is b12 that prevents hot flashes for me not hrt. It is early days firvme but I do think hrt prescription and effect should be researched.
There are too many negative effects of birth control to even begin to list here. I truly hate that so many women are handed this stuff like candy and told it is completely benign. I had horrible pelvic pain/bladder effects from birth control after only a few days of taking it, and my story was fairly benign. Those who have dealt with hormone-induced intracranial hypertension or cancer would likely have a much longer story to tell. Needless to say, I've done much research and have never touched the stuff since. If you think it could be negatively affecting you, I see no reason not to stop for a while and see how you feel.
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HELP Low B12 low ferretin, low folate and low iron
Doctors refused any more B12 injections after 5 years 
B12 and folate patches - any good? 
No PA or B12 deficiency but I am still going to supplement with oral B12 - should i get any other tests before this to rule out for sure?
