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.