Hi. Just got these results back for my daughter. I am a bit confused as she has suffered with B12 deficiency as her B12 went down to 74 despite eating a diet with plenty of red meat. She hasn't had an injection or taken any B12 supplements for at least 4 months but has continued to eat a good diet. The only medication that has changed has been her contraceptive pill as due to her having a hemi-plegic migraine she is not allowed the combined pill any more. Does she no longer need B12 supplements any more?
Thanks for your reply. It is so difficult to know what the heck is going on with her as she has been deficient in many things. As her diet is good with plenty of variety I think she has absorption issues so am going to continue with all the supplements. We are going to try adding some thyroid medication as well and see if there is any improvement with that as her T4 is at the low end of the range and has been for many years. It is a nightmare trying to sort her issues as her sister is also very unwell and my health isn't always great either. I just wish the doctors were more informed!
thyroid problems can alter the rate with which food transfers with the gut and can cause absorption problems in a number of ways.
As foggyme says - there is also a cross over between auto-immune diseases. Studies give figures of 40% for PA patients going on to develop Hashis and between 10% and 40% for Hashis going on to develop PA
Hi Catlover3. There is another possible explanation here...(based on autoimmune disease in family, Hashimoto’s etc.). I also note from a brief glance at a couple of your other posts that the B12 level is falling...quite a large drop over a four week period...and that your daughter is quite unwell (perhaps thyroid/perhaps B12 deficiency symptoms/perhaps autoimmune issues (likely if these run in the family).
Another difficulty is in comparing the rate of fall when trying to compare two different tests (previously serum B12, now active B12).
So...following B12 injections it can take quite a long time for serum B12 levels to drop down to deficient levels again...six months or longer, for some people. And b12 levels cannot be used to manage ongoing treatment or assess the efficacy of treatment. Following the commencement of treatment with injections, it is not necessary to measure B12 levels again (because all that’s being measured is how much you put in and how quickly the body metabolises or excretes it - and this differs with each individual. The thing that counts is symptoms...if your daughter still has the symptoms of B12 deficiency, then she still needs B12 injections (not sure why these were stopped). Irrespective of what her B12 levels are.
Her original serum B12 level of 74 was very low indeed and I bet she felt really ill. This, together with her (I think I read 😉) vitamin D and low folate issues, is indicative of an absorption problem...and if that’s the case, then it's not likely that her B12 deficiency will have righted itself (particularly as you rule out diet as an issue).
In a nutshell...following injections...look at her symptoms, not her serum or active B12 levels. If still symptomatic, injections should continue...and if she has neurological symptoms then the regime of injections (following 6 x loading doses) is every other day until no further improvement (with a B12 as low as hers was originally, I'd be surprised if she didn’t have neurogical symptoms).
But it may be quite difficult to tell whether her symptoms are due to thyroid, B12 or other underlying issues...all need to be treated simultaneously, appropriately, and adequately, to effect optimal improvement.
Also read that a rheumatologist has refused to see her...hmm. With her symptoms and history of autoimmune disease in the family, worth perusing further (you are entitled to ask for a second opinion...though it would be nice if you could even get a first one!).
Assume that your GP has done an auto-antibody screen, CRP and ESR? If autoantibodies raised, fail to see how rheumatologist can refuse...and even if not, there is such a thing as sero-negative autoimmune disease. Think if I was you I'd push your GP again and ask for another rheumatology referral...or they could also ring the original rheumatologist and argue your daughter's case more throughly. Sadly, GP referral letters are not always as thorough as they should be...and appointments are often declined on incomplete case histories or due to lack of clinical information / detail.
Information about B12 deficient and pernicious anaemia can be found in the links contained in the third and fourth PAS pinned posts to the right of this page...will help you understand more about PA and B12 deficiency and, in particular, you'll be able to see what your GP should be doing to help her.
Anyway...good luck to you both. Post again if you need more help or advice. 👍
P.s. The normal MMA result means that B12 is getting through to the cells and being processed properly (in other words, she does not have what’s called functional B12 deficiency). Though, of course, this doesn't rule out plain old simple B12 deficiency due to an absorption problem (MMA drops to normal quite quickly once the cells start to receive B12 again (as from the injections)...and they need to keep receiving it to repair damage, keep symptoms, and regain / maintain optimum health.
P.p.s. An after-thought (but it really shouldn’t be)...has your daughter been tested for Pernicious Anaemia (IF antibody test)? More likely if autoimmune conditions in the family. But be aware, the the test is not particularly reliable....40%-60% of those with PA test negative, so a negative result does not rule out PA. If no other case for B12 deficiency, then antibody negative PA (AbNegPA) should be considered as a diagnosis (details in diagnostic flowchart contained in BCSH Guidelines for the diagnosis of Cobalamin and Folate Disorders...here's a link to that document...well worth a read:
onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart
And something about problems with serum B12 levels and testing following treatment:
Thank you for your reply. Her gp is totally convinced that all she needs is anti-depressants and that will sort everything! I told her about her being low in B12 and her reply was "she's not deficient now so it can't be that."We are going to see a different gp in the hope that she will be more interested. My daughter has had swollen lymph glands in her neck, one for over a year, yet we are told they are reactive. Reactive to what though? She also has swollen lymph glands in her stomach and groin which were dismissed so am totally fed up with gp. Her main symptoms are exhaustion, aching limbs, very heavy hair loss, unable to concentrate, pain when her skin rubs against something. Finger prick blood tests are excruciating for her so can't do them, and she is always cold. She was tested for IF which came back negative. As she has been deficient in Ferritin, folate, B12, and its not from a bad diet, I am inclined to think she has absorption problems. Her thyroid levels show that although in range her T4 is at the low end and her tsh seems to fluctuate so a trial of thyroid medication is the next thing to try too. Her low D3 is down to being bed bound so she needs to keep taking the D3/K2. She is totally demoralised at the moment and desperate for things to improve. It breaks my heart!
Sorry to read your post I have no answers but I am in same position as your daughter and not getting help from my gp and only offered antidepressants. I havent left my flat in months. I am glad she has you fighting on her behalf. I live alone so very scary not getting help. I hope you get answers soon. I feel like it is too late for me as my symptoms are getting worse everyday. Please continue to do the best for her good luck.
Thanks for your reply. Please don't feel like giving up. It is so hard to keep fighting I know, but this site is excellent for information that you won't get from your gp. It is awful that we are left to try and treat ourselves. Try and make sure that you eat as well as you can and that if you're gp is crap like ours is try another gp or even another surgery if possible. Ask for help from your family and friends or if you are like us, we don't have any due to moving so much, ask a friendly neighbour. Try and read up on all the information available and the lovely people on this site will give you loads of help. Look after yourself. Catlover3 x
Thanks for reply I dont have any friends or family either , have read forum and given GP all info from here but to no avail. I am now agoraphobic so dont know any friendly neighbours and only one GP in village worse luck!
I have tried in past to get help, I know people on here try to help everyone and that is why I keep reading but getting to ill now to deal with on my own . Sorry I dont mean to sound so pathetic but I am at a loss and your story was so similar.
I just wanted to appauld you for all you are doing and for taking time out to care and reply to my post. Again I hope you get better results for your daughter. X
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