Should I be getting treatment?

[rosaespanola]

I'm a bit confused and hoping someone can offer advice. Apologies if this gets lengthy, but I want to give the background to where I'm at now, so thank you for taking the time to read.

Over the past few years I've had a range of health issues which have become more & more of a problem in my daily life (exhaustion, brain fog, unexplained aches & pains, shakiness, constantly boiling hot and sweating, breathlessness, lack of balance/co-ordination, unexplained weight gain, headaches). For some time they were attributed to the fact that I have polycystic ovary syndrome and insulin resistance, however tests have shown that both of these conditions are well controlled by the medication I'm on. I have a strong family history of thyroid disorders so that was tested as well, but came back within normal range, and the GPs I saw were variously saying that either there's nothing wrong with me and I'm imagining it, or that I'm stressed/depressed, or that it's related to the PCOS and IR. I wasn't willing to accept this as I knew that something wasn't right, and my symptoms were mostly in line with thyroid disfunction so despite the tests being normal, eventually I was referred to an endocrinologist with a vague diagnosis of possible thyroid disorder. I saw her in late December and she didn't feel it was thyroid related, so sent me for blood tests to check for various other conditions, including coeliac, adrenal disorder and vit B12 & vit D deficiency, and arranged an appointment with another endo for mid February.

Shortly after this I had a call from my GP saying that coeliac had been ruled out, that my B12 was below normal range but not enough that they needed to treat it, and that my vit D was normal. She said however that my level of cortisol was too high (about 1200) and that this meant that some kind of adrenal disfunction was likely, so when I saw the endocrinologist he would be dealing with this. I asked if I should start taking a B12 supplement and the GP said I could if I wanted to, but it wasn't essential. I started taking a B complex supplement which has 10ug vit B12 plus various other things. I also started a vit D supplement as I've been low in this in the past.

I've just seen the second endocrinologist today, and he said that the high cortisol is probably a false positive as I'm on the pill, which can make the results come back showing a high level of cortisol but that it's in fact nothing to worry about. He says that I don't have some of the main symptoms of adrenal disorders, but has told me to come off the pill for 6 weeks and then have this tested again just to be certain. He then said that I am deficient in vits B12 and D, and that this is more likely to be causing my symptoms. When I told him what my GP had said (based on the same test results), he said that it wasn't correct that my vit D was normal as I'd been told, and that my B12 was definitely low enough to require treatment. He sent me for another blood test today which will test B12 and intrinsic factor to check for pernicious anaemia. I didn't even know what pernicious anaemia was until I got home and looked it up online.

Unfortunately by this time I was really struggling to think straight, so it's only now that I've started to think of questions I should have asked and things I should have mentioned - as well as the brain fog, I was feeling really upset and frustrated by the fact that I still didn't know what was wrong with me and was going to have to continue waiting for more test results, so most of my brain power was going into not bursting into tears (not very successfully, I'm afraid - after my appointment a kind nurse had to put me in a quiet room with a box of tissues and a glass of water to compose myself before I went on my way).

The gist of it is that I have to come off the pill for 6 weeks, and a nurse will contact me with an appointment to come in one evening to take some kind of tablets and then the next day I have to come in for a blood test which will check my cortisol level. I've already had the blood tests for vit B12 and intrinsic factor. They're going to make another appointment with the consultant for 8 weeks time so he can review the various test results and decide what happens next.

I've also just remembered that about 5 years ago my vit B12 levels were found to be low, and my GP prescribed a course of tablets to sort this out. I presume that my levels were checked again after this, but I can't remember for certain. I don't remember noticing any change in how I felt at that time, so I'm guessing that my levels weren't low enough to be causing any symptoms. I'm wondering now if they've been steadily dropping since then, to the point that I'm now getting symptoms from it.

Having read about B12 deficiency and PA, I'm really concerned that I've already been having increasingly problematic symptoms for a few years, to the point that I've been really struggling with work and everyday life since last summer at least, and that it's going to be at least another 8 weeks before anything happens about treating the B12 deficiency. Everything I've read says that the longer it's left, the more likely it is that damage will be permanent. If it is PA then will the B12 supplement I'm taking even be absorbed? Should I trust the endocrinologist who doesn't seem to feel any urgency in starting B12 treatment? I'm reluctant to speak to my GP since they'd already said my level wasn't low enough to need treatment, which the endo disagreed with, and I suspect they'd just tell me to wait until my next endo appointment in 8 weeks. Can anyone advise me on what you think I should do? I'm struggling so much at work, I'm a teacher so it's a high energy and stressful job and I'm getting worse and worse at it. I'm making mistakes and forgetting things all over the place and I know I'm doing a terrible job in my lessons - pupils will ask me things and sometimes I can't even remember the answers myself, and I'm forever forgetting what I'm saying mid-sentence. I've told my two managers that I'm being investigated for health issues and have briefly outlined my symptoms - they were very understanding and told me to let them know if there's anything that can be done to support me, but it's difficult without any sort of definite diagnosis and it's not as though any of my duties can be taken away from me and given to someone else.

Help!

[Hidden]

Hi rosaespanola ,

Your story very much reads like you have PA/ B12 def and it would be good for you to get treatment, if your serum B12 has already been found to be low 2 times it is a bit bad that you have not been given treatment. To much B12 does no known harm, to little B12 can do so much harm.

What to do now, if you can wait for results, see what ells comes up, and get the right diagnosis and treatment you will need, is what I'd do. Waiting now for a few months more will not do you terrible harm, what harm has been done will be done. I am all for getting a diagnosis first, get copies of your blood tests to find out what low means and what other blood markers of B12 def you may have such as raised MCV etc. Check everything, read up on blood test results here:

patient.co.uk/doctor/full-b...

Get to know as much as you can about PA?B12 def,

read up, some links:

patient.co.uk/doctor/pernic...

cks.nice.org.uk/anaemia-b12...

If you can not wait then you could do 2 things, read this (if in UK) and give copy to GP and say you want treatment now, see:

bcshguidelines.com/document...

If no treatment is offered ask for referral to haematologist. If that is not offered ring PAS and ask to see one of the Drs they know, who will see you and help you get treatment.

Its the best I can think off, hope it helps,

Kind regards,

Marre.

[Gambit62 Administrator]

I am so sorry to hear that your GP has been so dismissive of B12 and advised that you don't need treatment even though your level is low. That is really bad.

I'm in my 50s now and looking back on my life I can see symptoms of B12 going back into my 20s and possibly even before that. I was told that I had low B12 as result of a blood test in hospital after I had a fall and broke my ankle so badly that it needed pinning. I struggled for the next 15 months trying to work out what low B12 actually meant ... and having had depression for decades I certainly wouldn't have expected that that was down to the B12.

My GP was very caring but not very clued up on B12 and just wanted to put me on anti-depressants which I didn't want - by then - even being on shots every 2 months - I was going backwards and having problems with balance - suicidal thoughts - anxiety - acid reflux - irregular bowel movements - memory - exhaustion. I left the appointment feeling really let down but it did spur me to actually go out and source some B12 and I discovered that a nasal spray worked very well for me if I took it in high doses - about 3mg a day (which is a lot more than your vitamin supplement). I went from struggling to walk to being quite happy perched at the top of a ladder in the space of 2 weeks and 3 months later I was surprised to realise that the anxiety and depression had gone.

B12 is stored in the liver in quite large quantities which means that deficiencies can take years - even decades to develop once an absorption problem starts - it also means that the progress of symptoms can be slow and the body does have remarkable powers to heal itself given the right support.

As Marre says - get hold of your test results - if these are definitely showing up as low then you definitely have a deficiency and should be treated with injections as your history indicates that it can't be related to your diet. The intrinsic factor test for PA - which is hailed as the most common cause of B12 deficiency but I'm not so sure - is not a particularly accurate test so even if it comes back negative that doesn't mean that the cause of your B12 deficiency isn't PA.

I hope that the endo gets things sorted for you soon.

You can't overdose on B12 but injections aren't the only way of getting it into your system - though they are probably the most efficient. As I said I use a nasal spray - some use sublingual tablets and sprays and some find skin patches help them - but it can be a bit more complicated than just following the one-size-fits all treatment plan that NICE lays out and working out what is the treatment that actually works for you.

[rosaespanola in reply to Gambit62]

Thank you so much to both of you for your helpful advice. Thanks to the conditions I already have, I'm no stranger to having to stamp my feet and insist on tests/treatment, but this B12/PA stuff is all new to me. Having read the info on the PAS site, it certainly sounds like my symptoms match B12 deficiency - although symptoms for thyroid and adrenal disfunction are also similar to this. It's very frustrating, not knowing what the problem is - I feel as though I've been passed from pillar to post with no clear answers, it's just test after test and nothing is coming back as very conclusive. I really hope it does turn out to be B12 causing my symptoms, because at least then I can start doing something about it!

FYI, the initial test showed my B12 at 165, and a more recent one (since I started taking the supplement) was 235. I'm not sure, but wouldn't this suggest that it's not PA, since the increased level must mean that I'm absorbing the B12 from the supplement properly?

[Gambit62 Administrator in reply to rosaespanola]

Based on your first test result you should definitely have been getting treatment and I would say that you do have a diagnosis of B12 deficiency - and other tests are probably just about trying to track down the cause (but that can be a bit of an exercise in going round in ever decreasing circles - not the medics fault - just that there aren't really any good tests which is why guidance in UK is to treat on basis of symptoms not test results.

The serum B12 test is a bit hit and miss in terms of being a diagnostic tool as it looks at all B12 and doesn't give any indication of how well you are metabolising the B12 you have.

About 1% of B12 is absorbed passively, ie outside the ileum - so not interferred with by auto-immune problems like PA, so the supplement may be helping a bit through passive absorption - though the amounts you would be getting would still be well below RDA (recommended daily allowance) or whatever abbreviation they give these days.

The supplement you are taking contains folate (B9) - which you need to be able to metabolise B12 so the test result might actually indicate that you are managing to metabolise B12 a bit better because of higher folate levels rather than being an indicator that you don't have PA/an absorption problem, ie an inefficient process has become slightly less inefficient but still isn't working properly.

Once treatment starts it can take a few months for people to notice much difference - 6 months or so - so don't worry if the symptoms don't go immediately.

Personally I think you would be safe, given the results you have, to start experimenting with some higher dose supplementation of B12 (particularly as it isn't toxic), rather than just waiting for all the test results to come back.

High doses of B complex probably isn't the way to go though as there are known problems with artificial forms of B6 taken in high doses over long periods of time.

Unfortunately there is always the possibility that it is B12 but also something else - B12 often seems to be like that but really hope that you find the solution that works for you on B12 and feel better for that soon.

[Gambit62 Administrator in reply to Gambit62]

Couple of other sites that you might find useful on B12

b12deficiency.info/

b12d.org/

[rosaespanola in reply to Gambit62]

Thank you again for taking the time to reply, when I have a good bit of time and my brain isn't too foggy I'll sit down and have a read through the sites you've both linked to. It's always really helpful to talk to people who've been through all this and can talk about it from a patient's perspective rather than just from a doctor's.

[stenstorp]

Hi Rosa, I think you need to keep an eye on your thyroid levels too. Low thyroid, low vitamin D and low B12 are not uncommon together. Few are completely well with a TSH above 2.5 and some are quite ill even at lower levels than that. But it is wise to get started on B12 first obviously, only don't forget you may have a thyroid problem too.