hi guys!
hope you're all well. sorry i havent been here in so long. it's been an absolute age! to be honest I got so frustrated with my DRs that I just couldn't think about it anymore and stuck my head in the sand.
My GP was insisting that I start on folic acid, which I was very uncomfortable doing seeing as my b12 was borderline (would have been deficient in some areas) and they'd only found the low folic acid on a retest of b12 which showed that although i'd increased my dietery intake as far as it would go over a few months, my b12 levels had only decreased further.
as I have a gut disorder associated with malabsorbption anyway, it seemsed likely that was the problem, especially seeing as it was now b12 and folic acid at the same time. my gp insisited on testing for the antibody, which i agreed to as long as he understood that this wouldnt rule out any other kind of malabsorption (he agreed he understood this) and then, as he kept mentioning that this was not his area of expertise, i asked that he write to a consultant to ask for adivce.
he wrote to a consultant but unfortunately, he seemed to have even less of a clue. suggesting that i may be regularly abusing nitrous as this 'can look like b12 deficiency' this immediately set off alarm bells as nitrous use doesnt simulate anything, it causes b12 deficiency! not to mention the fact that he clearly hadnt read my notes, i'm pretty seriously disabled (my another condition) so i'm definitely not in a position to go out and abuse party drugs once a week! he told my dr that he wasnt concerned 'at all' as i still met the lab ranges for 'normal' in my area. he didnt mention the limitations of the test at all. only saying that if i was really concerned, my dr should prescribe me 50mg tablets and test again in a few months??? he gave no mention of how oral supplementation isnt recommended with gut malabsorption. he also did not mention that the test is not accurate after starting supplementation.
then after reaffirming that he 'absolutely did not think there was any sign of deficiency and was therefore even reluctant to recommend oral supplementation' he said that if my dr 'absolutely thought it was necessary' they could run a mma test but that in his opinion this was useless as i clearly didnt have a deficiency.
at this point i went back to my gp and requested that he take the mma test mentioned and also a homocysteine test, as both of these tests would indicate a deficiency, even in the case where the serum b12 was showing as 'normal'. i explained the limitations of the test to him again, again offering papers as evidence (i've got a scientific background) and explained again that there is no point in taking a test for serum b12 when a patient is taking oral supplementation, as in many cases the serum b12 will be artificially high, and yet has little bearing on how much of that b12 is actually making it through the cycle, and is available to be used and has no bearing on b12 levels in the spinal cord
at this point we just hit a wall. he'd agreed wiith me prior to writing to the consultant, that he understood the limitations with the test and would not be taking anymore serum tests and we'd reached an agreement that as he could clearly see that something was wrong, and as he really wanted me to start on the folic acid asap, i would start taking sublingual b12 so i could take the folic acid without any danger of that worsening a preexisting b12 deficiency to the point of damage. after the letter from the consultant, he completely went back on this and refused to test for mma or homocysteine, determined instead, to wait 6 months (with me supplementing) and then taking another serum b12 test. he also decided to write to my consultant for my genetic condition, as he believed that maybe that was causing my nerve symptoms (there is a close relative of the condition i'm diagnosed with that can cause peripheral nerve issues, so they referred me to genetics and are testing to see if i have that one)
at this point i just kind of chalked it up to a lost cause. i am now 3 years in to a depressive episode (the longest i've ever had) and frankly didnt have the motivation to keep flinging scientific papers at a brick wall. i dont blame my gp. he's been an excellent dr up until this point, but i know he's working ridiculous hours (seems to be in the surgery from 7-8 most days) and has now in part beenmade responsible for keeping the business side of the surgery running, so cost seems to be more and more of a concern with everything he does. my local area have been putting out documents (that are barely correct) talking about what a waste of money b12 is for the area (high elderly population so many ppl have been on certain medications for years) and how most patients 'dont even need it' so i dont blame him for having a poor understanding of b12 and being too burnt out to do more than believe the first bit of official paper put in front of him, but it doesnt make it any less frustrating.
i'll be completely honest here and at this point i figured it was a problem for another day, and gave up thinking about it. i've been making sure i eat as well as possible and mostly eat veg and animal products, so that at least what body does manage to absorb, is as plentiful as possible, coming from nutrient dense foods.
a couple of months passed and the newest antidepressant had proved to be completely ineffective (when in the past they have worked fine in addition to non medical treatments) and my depressive episode was still showing no signs of shifting, in spite of it already having been much longer than anyone was expecting.
i met with my psychatrist at the cmht again, to discuss possibly moving me on to another type of antidepressant (at this point we are rather running out of options! having already tried 3 different groups of medicine). my depression is now being called 'treatment resistant' and she asks about my health otherwise, and i explain that things are a bit stressful at the moment thanks to having to deal with genetics, and that there is a suspicion that i may be having problems with malabsorption. when i said that she immediately mentioned that certain minerals/vitamins can have an impact on mental health so she would like to know if they find anything. at which point i kind of say 'I Know!!! i'm glad you say that as i have pointed this out to them!' i explained about the low 'normal' (borderline) b12 and the deficient folic acid and said that i was surprised they hadnt at least mentioned it to her and she was like 'yeah they dont tend to but i would have liked to know as those could definitely be affecting your mental health. in fact, b12 deficiency can look like treatment resistant depression' and i'm like i know! and while i've always had depression, this episode does seem distinct in that it doesnt react to any treatment. in the past, antidepressants made a noticable difference, that gave me the step up i needed for non-pharmacuticall treatment to be effective.
at this point she's like. 'it doesnt make sense for me to start you on yet another antidepressant before this potential deficiency has been addressed. a borderline deficiency could definitely impact on your mental health and affect the effectiveness of whatever i prescribe you and the tests for b12 arent very accurate anyway. i'm going to write to your gp. and i was glad to be hearing this from her! i really was. everything she was saying matched up with my understanding of it. however, i'd still kind of given up by this point so i was like 'well if you want to by all means but i dont know if my GP is going to listen, he's spoken to a haematologist who seems to know even less about b12 than he does (even though it should be his specialty!) and now he's pretty convinved that theres nothign to treat.' and the psychiatrist is like 'well then maybe i should write to the consultant. do you have the consultants name? if they dont understand how deficiency can impact on mental health this could be having negative impacts on any number of patients. but i didnt know his name, and frankly, he seemed really arrogant in his letter to start with lol i dont think he would take particularly kindly to someone in a completely different area telling him how to do his job though i guess that isnt so much my concern. anyway i said to her why dont you write to my gp to start with and we'll take it from there, maybe you can ask him for the consultants details. so she says she'll do that and then we'll have an appointment as soon as she hears back (i'd been having them once a fortnight at that point to titrate on and off all these antidepressants as she tried them one by one)
so she sent the letter and i didnt hear back for ages from my gp or the cmht which i thought was odd as usually they call me when they get a letter from the other. i looked at my gp medical notes and saw that my gp had sent a letter back to her. the letter she wrote was amazing to be honest! she sent him links to nhs resources explaining why at my age even a borderline reading was concerning and explaining how this could impact on mental health. she also sent him a research study where they studied depressed patients and found that supplements massively helped where medication hadnt. he had completely dismissed it and clearly thought she was only writing as i'd gone behind his back in a 'mum says no ask dad' type situation. he explained that he'd consulted an expert (without giving a name) and that the expert was confident that i did not have a deficiency and that my levels were 'far within normal ranges' (they were not. my area consider normal to be 197-771 ng/l and my reading was 230ng/l. however you spin it, thats the low end of 'normal')
i waited a while to see if the cmht would reply but nothing, so eventually i called them and explained that i was expecting to have heard from them, and asked to make an appointment to speak to my psychiatrist. the receptionist seemed surprised and asked if i meant that i needed to see her 'before my appointment' when i told her i hadnt known i had an appointment, she said they'd made me an appointment on the psychiatrists request a few months back??? and that the earliest possible appointment at that time had been in august??? (meaning that their avaliable appointments for existing patients (i didnt need to be rereferred) had gone from 2 weeks between to 6 months?) i have no idea how they are titrating medications with that kind of gap??? its bizarre. she eventually agreed to put me on a cancellation list but i havent heard anything, so am expecting to go in august.
so thats an incredibly long explanation of where i'm at now (sorry for length as well as poor grammar and the wall of text. i meant to just give a summary of what got me up to this point before i asked my question but i wanted to make sure i gave the context, as i'm only really considering this as i feel i've somewhat exhausted all other avenues), on to my actual question:
now that the appointment approaches, i'm wondering what my available options are. i'm most likely going to change antidepressant. but the likely deficiency is obvioulsly still an issue. from what the psychiatrist said, if a deficiency is impacting on my preexisiting depression, the medications we've tried so far, may have been working, the deficiency was just counteracting any good. if this is the case, she could try me on any antidepressant out there and none of them will have any impact unless the deficiency is treated. i havent had a chance to speak to her since she sent the letter, so i'm interested to see if her view has changed. but in the meantime:
i'm going to take in the letters from the haematologist and if she wants to write to him then by all means i'll give my permission, however i'm not going to wait to hear back from any more letters before i try a new antidepressant because on the offchance it works, i have to take it. and i have to take it as soon as possible. i have literally exhausted all options for depression treatment at this point and i'm just tired of it. (tried all the non medical stuff before even trying 1 antidepressant and am keeping what i can going, tho my low motivation and mood do not make that easy!) i want to get on with my life without this constantly dragging me down.
one thing i am wondering: she is a senior psychiatrist. she is a fully qualified dr and has scope to prescibe off label if she thinks its necessary. this would not be off label. if she believes that the b12 is an issue, is there any scope for her to prescribe injections? even according to local primary care guidelines, with my b12 at the level its at and with me being symptomatic, it would be recommended that a dr try a treatment trial, and confirm a deficiency diagnosis based on outcome. if she can not get anywhere with convinving my gp, but does believe that i am likely to have a b12 deficiency and has a clinical suspicion it could be affecting my mental health, can she prescribe a treatment trial to confirm that suspicion? i know it would be unorthodox but from a nhs perspective i think she could rationalise it as a cost saving measure as well as 'for the good of the patient' (they have tried so many antidepressants at this point theyve moved in to the really expensive new to the nhs ones). the place i see her is a medical centre, they give me ecg's when i change medication (i've got a heart condition which makes mental health meds more of a danger, another reason why it seems important to explore all avenues before putting me on increasingly risky antidepressants!) and i know that they have nurses there who give ppl their injections for prescribed mental health conditions. they may well take blood tests there as well (i'm uncertain on this one. i know that patients there are on medications where your blood levels need to be checked, but i dont know if they get it done at that centre or if they go to the hosp/their drs surgery to get checked) either way, this isnt a talking only cmht bulding, its kitted out for medical things like injections.
i know this is a bit of a long shot but i have researched absolutely everywhere i can think of and have not been able to come up with a answer on if thats something nhs psychiatrists are allowed to prescribe (i know its definitely not something thats common, i just want to know, are there rules against it)
Advice please on latest B12 result and what to do next about possible B12 diagnosis
GP not listening
Is B12 196 normal?
I'm back ;) Advice re mother & functional B12 deficiency
