Hi - a brief update and request for advice on B12.
I have autoimmune hypothyroidism. Following a disappointing Endo appointment I wrote a detailed email to request an appointment with the Consultant as I felt I hadn’t had the chance to discuss my concerns properly with her junior. This was granted and I have been offered a trial of T3 - not started yet. I was also concerned about my B12 but was told they were unable to do any further tests as my serum B12 was normal. So I have privately tested for Intrinsic Factor antibodies (negative) and Active B12 (below range).
I’ve had (I think..) full blood count done by the NHS - all normal, the other thing Medichecks recommend is a methylmalonic acid (MMA) test.
I think I just need a bit of reassurance as to what to do next. I will contact both my GP and the Endo about the private tests I’ve done and ask for an MMA test. Both admit to knowing little about B12. Am I likely to be able to get a test or will it require another referral to someone who does know about B12 ?! Should I be asking about anything else?
Immediately after doing the private tests I started taking sublingual B12 (4 days ago). Will this affect an MMA test? Should I stop taking it just now?
My folate is also low so I was intending to also start taking a B Complex in a week or so. Think I will hold off on that just now.
Any comments welcome - thank you!
Active B12 36 pmol/L (37.5 - 188)
Folate 12.4 nmol/L (8.83 - 60.8)
Intrinsic Factor Antibodies 1.05 AU/mL
<1.2 Negative
1.2 - 1.53 Borderline
>1.53 Positive(Range: < 1.2)
Written by
GW1000
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You should definitely inform both your GP and the Endo about your Active B12 result.You can give the details to your Endo via email or call to their Secretary , rather than simply calling the Department,,as the Secretary is usually the one that gets something done.
Your B 12 supplements may have made a difference to your Total or Serum B12 blood results , so you may want to stop them until you have a repeat of blood tests or other tests done at the surgery. I would stop supplements until all your tests are done just to prevent them reducing the accuracy of the results.
I would suggest you ask them to repeat your Active B12 blood test and Serum B12 , Folates , Ferritin / Iron Panel / Vitamin D / Homocysteine and the MMA.
Remind them of your Hypothyroidism and how B12 levels can effect your thyroid function or response to the medication.
The B12 issue may have even partly been a cause for the hypothyroid issue as it can effect thyroid function.
Request for the surgery to do these tests as soon as possible so that you have results in time to show the Endo at that appointment, it may help them choose appropriate treatment or further tests quicker if you already have results on the day and don't wait to be tested after your Consultation.
If your GP surgery are reluctant to do all of the tests you can contact the Endo and ask them to request for them to be done by the surgery for you .
If your Active B 12 is still deficient despite your supplement this could help to confirm for the Endo that the is some sort of Functional B12 issue.
It would also be a good idea to write a food diary to show the GP/ Endo including any regular supplements you were taking even before you began oral B 12 if you took any. Include a list of any herbal medications you might use too in case they can effect your B12 absorption. Having proof of a good diet helps show them that you need treatment as you were already eating a nutritional diet.
They may , or may not choose to do the MMA . Their decision might rely on the Active B12 result you have or be influenced by you starting supplements already. As I recall MMA is usually taken before supplements or injections when your serum B 12 is proved as low or only just deficient because it is usually an early indicator that a B12 deficiency is about to occur or just beginning. I am not sure whether the MMA level would be effected substantially by your supplementation , or whether it has the same importance or accuracy as an Active B12 test. Having the repeated Active B 12 test may make needing the MMA unnecessary, but I'm sure other people will reply soon with information about that.
You want an iron panel and Vitamin D , as the iron panel will show B 12 deficiency anaemia, or Anaemia, and Vitamin D can become deficient with thyroid issues and cause more symptoms as well. You can request an annual Vitamin D test on the NHS if you have a condition which makes your susceptible to possible Vitamin D deficiency. Thyroid issues can be effected by low Vitamin D.
It would also be good to point out to the GP/ Endo that only about 50% of people with Pernicious Anaemia get a positive antibodies result. So having a Negative PA test is no guarantee that you haven't got PA.
No matter what they choose to do about your Vitamin B12 treatment they should offer you advice on oral supplements, or a prescription , for B 12 and Folates to improve your levels because of the effect it can have on your success with thyroid treatment.
Hopefully , a forum member with more knowledge about treatment for functional B 12 issues may tell you more about things to read to know which treatment you should be offered for that , as it may have a different schedule to standard B 12 guidance.
Having a look through common articles in the pinned posts about diagnosis and treatment on the forum , and taking some notes could help you work better with the Endo and GP , if they have little experience of B12 treatment what you can show them will probably influence them giving better care.
They also need to consider more regular monitoring of your thyroid function whilst the deficiencies are being treated because nutrient issues can mean you may need to alter the dose of thyroid medication you are on while you are deficient, and as the Deficiency improves.
I was advised by private consultant that there is no gold standard test for pernicious anaemia, but nevertheless, your active B12 result indicates B12 deficiency. Given current NICE guidelines, your diagnosis and treatment should be guided by symptoms above all else. So if you have neurological symptoms, treatment should be injections of B12 3 times a week until there is no further improvement in symptoms, then a reduced dose. I don't know how a thyroid deficiency might impact this.
I was glad of the assistance of the private consultant and it kick started my healing journey, and provided a letter for my GP outlining why he thought I had B12 deficiency, the treatment, and what further tests were needed and when. I was shown how to self inject and where to get supplies if the GP didnt follow NICE guidelines... Good luck!
MMA generally not available through GPs and needs to be done at a hospital
Negative IFA doesn't really mean a lot - the test isn't very sensitive so frequently gives false negatives.
Suggest to Endo and GP that they take a look at the area of the PAS website specifically aimed at helping medical professionals to improve the diagnosis and treatment of PA and other B12 absorption problems
Thank you so much to everyone who has commented! I will look into all the info. I’ve already emailed the Endo - couldn’t face the e-consult yesterday but will do that today. Many thanks all.
I am now seeing a private consultant regarding my functional b12 deficiency; he mentioned on the phone to me that taking anything with any B vitamins in during the month before blood tests could skew the results and mask a deficiency, so it may not be enough to just stop supplementing for a week or so before your next tests, unfortunately.
Sadly, it can be potentially counter-productive, as if the GP goes ahead and tests active B12 within the few weeks after you supplemented then the levels may be in the ‘normal’ range and they will not think it is necessary to treat (with injections). That is what happened to me initially - after the first low total serum b12 I started taking supplements, was tested again and it was ‘normal’, so GP was not bothered after that.
It was only a hospital MMA test a few months later (requested by a neurologist) that identified a functional B12 deficiency (I had finished the oral high dose B12 that the initial GP prescribed about a month or two previously). I moved GP practices (following house move) and it was the new GP that agreed to put me on injections. Good luck with it all.. D_b
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
How are you? Did you ever get treated? I’m the same only hashimotos and B12 36.6(active). Need to phone GP tomorrow as bloods just back from medichecks today. Know I may have a battle on my hands!!
Hi - well…not great really but maybe looking up! I can’t quite believe that it is now 9 months on and no, I’ve not yet been treated. Several GPs wouldn’t accept (“didn’t know anything about”) the Active B12 test. I’m in Scotland. I did end up being referred to a neurologist who I do feel is listening, but is also rushed off his feet with, realistically, more urgent patients than I am. As a result it has taken 9 months and a much lower (but still just in range) Total B12 result to finally have an MMA test authorised. No date for it yet.
If I were you, I wouldn’t lose heart - perhaps your GP is more knowledgeable (or open to reading guidelines…) than mine. Depending on how your call goes I would write in with some of the info others have mentioned above and also from the new draft NICE guidelines. There’s a paragraph buried in one of the Evidence Reviews which is useful I think:
“Therefore, the committee decided to recommend that MMA is considered as a second line test if first line test results fall within the ‘grey zone’ for diagnosis (180-350 ng/L for total B12; 25-70 pmol/L for active B12; 35-70 pmol/L for active B12 during pregnancy and breastfeeding) for people who have signs or symptoms that suggest they have deficiency.”
The section in the actual guideline that it relates to I think has some holes in it - when I get a clear head I’m going to send a comment in I think. It talks about very specific symptoms and “65 and over with cognitive impairment” qualifying you for MMA testing. It then goes on to talk about people with no symptoms. So those with “grey zone” results and more general but still B12 related symptoms, including cognitive impairment in the under 65s, get missed out. I’m not sure if that’s intended or not.
I think it is a bit of a postcode lottery so, as you’ll probably have seen recommended, finding the specific guidelines for your health board will help you know what you’re up against.
Hi GW1000.. still can’t believe how long your B12 thing has been going on. 🤞for your MMA soon.
My call went as expected. GP won’t recognise private active B12 test. She did say she would repeat tests but that’s serum B12. Seemed clueless about active one. Didn’t even try and ask for an MMA. I just have to hope that the serum one correlates with active. Sooo frustrating especially with my medical and family history. Don’t want to go to expense of private MMA for them not to recognise that either. Thanks for your reply! Hope all goes well!
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