B12 and brain fog?

[CyclingDog]

I don't post very often as it has seemed up until now that my 1mg, self-administered monthly B12 injection seems to have been enough.

My recent health has though taken a nosedive with ridiculous weight gain and increasing brain fog: I'm nearly 20 stone (127kg or 280lbs) now having been a manageable 16 stone (101kg or 224lbs. The reason for the weight gain is, I believe, likely to be associated with my underactive thyroid gland: it used to be overactive until I had the definitive radioactive thyroid treatment just before our first COVID lockdown. I've asked the thyroid group on here for advice about testing for thyroid function.

I'm 61 year old male and over the past two years I've developed mild depression (maybe pandemic-related?) and most persistently, an almost continuous brain fog. I've repeatedly asked my doctor to investigate this and very reluctantly, angrily even, he referred me for a brain scan to investigate, at my suggestion, MS. He had initially stated that that it more likely to have been associated with depression and Long Covid: he may still be correct, except that I haven't had COVID until now and refreshingly, it's been quite short so far. The scan results though suggest that there is evidence of a previous bleed, which isn't good, but if it were an ongoing stroke, then I'm sure they'd've called me back more promptly for a follow up scan and treatment. As it is, I return at the end of this month for another, I assume, more focussed brain scan. I also suspect that the bleed may date back two years when I had a tympanoplasty to close a hole in an ear drum.

I'm aware that I need to see the results of the scan first before tackling my doctor again about the brain fog, but he has already, previously refused to retest me for B12 levels, unless I subjected myself to a three month B12 fast for him to be able to derive a baseline level for retesting. In other words to get me down to NICE guideline levels. It seems to make sense, but I'm equally aware that the relationships between testing and results are not always as simple as a basic understanding of statistics might suggest. Obviously I'm reluctant to do this as this may exacerbate even further my current problems. He knew I self-medicate as soon as I joined the practice last year (I've been very open with all doctors about this and have yet to come across one who understands what I do and why I do it, or whose fragile ego can take 21st century growing levels of patient autonomy) and has expressed his distaste for this from day one. This will've been my 4th doctor in 5 years that has been unco-operative with what I believe to be a fairly conservative self medication regime, for what is a non-toxic chemical. I've also suspected B12 deficiency-related neuropathy as a cause of the brain fog for some time as it feels very similar to the brain fog I suffered prior to my B12 deficiency diagnosis. I take daily folate too. I also have a gluten free diet after being diagnosed with Food-Related Irritable Bowel Syndrome some years ago. I progressively removed foods from my diet until wheat and wheat gluten was identified as the culprit. As far as I know, I'm not coeliac.

I'm fairly clear about where to get tested, but want to know whether my doctor's call for a B12 fast (my word) is necessary? And if so, is it worthwhile and what should I have tested apart from B12 levels?

[Pickle500]

Interesting situation for you. Sorry to hear of your difficulties.

A few complexities to unravel I think. Ultimately, if you have continued on monthly Hydroxo self-injections for some time (years?) then if your symptoms have changed but your treatment hasn't, then logic might suggest it is something else.

Your Dr, although ignorant, may actually have a point. There is little point in testing your B12 unless you come off the monthly injections. Arguably, you'd need to do this for more like 6 months to get an accurate reading.

Also, if you did come off the injections, you may notice more symptoms. And then you would not know if they are B12d related or something else.

So personally, I would continue with monthly self injections and pursue other avenues and scans to determine the brain fog and depression. Alternatively, you could increase your self injection therapy to twice a month and see what change that has.

Once you, and many of us, start self-doctoring with supplements and injections, we blur the boundaries for medics. And so we have to 'take on' our own healthcare and see how B12 works in other ways, like more or less frequent injections.

Wish you well

[Gambit62 Administrator]

Brain fog can be caused by a number of conditions - and sometimes it is really difficult to unravel the difference between symptoms caused by an underactive thyroid and those caused by B12 deficiency.3 months to get a baseline after injections have started is a load of twaddle that is applying false logic and based on average periods taken for excess B12 to be cleared from your bloodstream. The early studies into retention of injected B12 showed that some people still had very high levels after several years ... and these weren't large scale studies. (Unfortunately the studies only recorded the serum B12 levels not how the patients felt during that time). However, even though it is a load of twaddle its a pervasive load of twaddle.

onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/pmc/articl...

[wedgewood]

I would be tempted to inject more often , as we all know that we cannot overdose on b12 .

[Cobalt1312]

CyclingDog, I'm so sorry for your struggles and while I'm not sure I can really offer any advice or help, I wanted to comment on your doctor. I am angry for you that in order to get a brain scan he 'reluctantly, even angrily referred' you for the scan which subsequently revealed an old brain bleed!!

I really commend you for your self-advocacy. It seems like a euphemism to say you're dealing with a challenging medical environment.

[CyclingDog in reply to Cobalt1312]

Thank you! I’m now on my third surgery in ten years, though this latest one is more a product of a big move than anything else.

I am permanently frustrated of the continued top down, paternalistic approach of (most?) GPs, rather than what they now should be doing is to consider the patient’s voice first. I’ve been right every time (not necessarily with specific diagnoses) in telling doctors that something’s up with my health before both of my body chemistry problems were diagnosed and treated.

[Hidden in reply to CyclingDog]

"I have been right every time".

Just goes to prove you know your body better than them.

So frustrating !

Wishing you the best in difficult circumstances

[CyclingDog in reply to Hidden]

‘Frustrating’! That word in all its forms will resonate for some time. The last time I spoke to my doctor I told him that my assertiveness (self-advocacy) was borne of frustration with not being believed or listened to by a succession of doctors. His response? ‘Frustration works both ways’! I kept my immediate thoughts to myself, but I did consider that he may be right, particularly for a generation of doctors used to being listened and looked up to without question. We are however supposed to be beyond that, in an era where the patient’s voice comes first and we are treated as equals. I’m yet to meet a GP who treats us like this, but I live in hope.

[Cobalt1312 in reply to CyclingDog]

I heartily agree with Sallyannl!! Good on you!!

It can be so disorienting and crushing to be dismissed and met with such resistance, you give me hope to keep fighting the good fight!

[Hidden in reply to Cobalt1312]

Frustration,

My frustration is that both of us had to go private

For MRI scans to prove the damage caused by b12 deficiency. Numbness and damage to spine both showed up. Blood tests revealed low b12 and that wasn't enough to get treated in the first place.

The damage caused was needless !

I could go on, but it doesn't do me any good and at the end of the day they (doctors) just brush it under the carpet.

[Cobalt1312 in reply to Hidden]

Sallyannl, you're right. It's not acceptable.

Period.

[B12life]

read this previous post about brain fog and the suggestions on thiamine/b1

healthunlocked.com/pasoc/po...

[CyclingDog]

Thanks all for your knowledge, experience and encouragement. I have my tests and am doing them tomorrow morning before my meds. I decided to get 2 full panel thyroid function tests for comparison, but mostly just in case I need to speak to my doctor and he refuses to consider a non-NHS lab.

I’ll let you know my results once they’ve returned.