Okay… had another doctor's visit today, ostensibly to check blood test results for thyroid and coeliac disease. After establishing this, the doc does as I expected him to and said that my thyroid results were normal. Which they were. The trouble is, they hadn't been normal 5 days beforehand. Then they were high TSH, low(ish) FT4, just as they had been 3 months previously. What's more, during those five days I had been (forcibly) off Carbamazepine, in hospital, and it's a known thyroid/thyroid test disruptor, so I would have thought that might be a primary suspicion, i.e. not normal at all, but a glitch produced by drug withdrawal.
Oh no, He consulted his little book to see if I was telling him the truth about Carbamazepine, I assured him I was. After a lot of faffing about, I reassured him I didn't want to do anything, just retest thyroids again in 3 months time. He accepted this. We moved on.
Now, I have symptoms of Sjogren's Syndrome (dry mouth, dry eyes; dry everything). I have mentioned this to him before; he's not interested. Now I have a rash. I've had it for more than 8 months, steadily getting worse. He thinks it's Pityriasis Rosea. I think he could be right. However, we might both be wrong, especially when it is getting worse, not fading away as it should be by now. Also, given that I have other symptoms of something suspiciously like Lupus (unexplained anaemia, Neutropenia, the usual culprits of fatigue and joint pain), it means there could be a bigger problem. Carbamazepine can also produce what's known as 'drug induced lupus' and as I may be stuck on the drug, it seemed intelligent to check it.
Nope. As I expected, he is not happy. I get more loooooooong lectures on how, basically, I am creating mental illness in myself. When I try telling him that I have a lot more symptoms than he sees; I only come to him with obvious physical manifestations, such as the rash, and that I have things like fatigue and black, BLACK depression, as well as – let's not forget this most important of problems – trigeminal neuralgia, a serious neurological condition, so Lupus is not really a far-fetched madness spun out of all my hours on the internet. This makes no impression whatsoever. Apparently, I have the depression BECAUSE of the internet research. I have given myself health anxiety, like it's a real thing. In shorthand, I'm making myself mentally ill, neurotic, bonkers. Or if you want to phrase that another, altogether more blunt way, it's all in my imagination.
When I actually confronted him with the fact that he kept treating me as if I was 'worried well' and not sick, he pulled a face that said 'Well, that's a moot point; to me you are well'. Thanks. That explains a lot.
After that, I then had to ask him for a copper deficiency test – and I know that was a real wild card, and told him so, but me appreciating that I know I'm asking him for something very rare and frankly unlikely cuts no ice, because THEN, I had to deliver my coup de grace – I wanted a referral to see a Non-coeliac gluten sensitivity specialist in Worcestershire. However, I was at least prepared for that one and told him to look the man up and do his due diligence, knowing that would at least make him feel more in control. He took the address I gave him, looking as convinced by the idea as if I'd asked him to time-travel to the dark ages and consult a soothsayer, so we all know what he's going to say when I see him next time – bring on the next fight.
And that was that, EXCEPT, at one point, when he was done with his sermon, he turned to my partner and asked him if he thought he was in the wrong, and my partner, said no, he agreed with him. He was careful to say that there was something definitely off-kilter with me, I wasn't 'right' but that yes, I spent too much time studying illness.
Oh, what a blow. Aside from the disloyalty, I had no idea he too thought I was bonkers.
Understandably, I was beyond upset. I am usually depressed and exhausted when I leave the doctor's: the fighting, the sense of making zero progress, not being believed – the list is endless. But this is the first time I've felt stabbed in the back. I was walking to the supermarket, tears streaming down my face, barely able to articulate how betrayed I felt, and determined – absolutely DETERMINED to kill myself. If I was really so mad that I couldn’t see my own madness, then I was in serious trouble and there was no point in going on.
Now, I have calmed down. I've talked to my partner, and I was indeed shocked to discover that yes, he thinks I do too much health related stuff. Too much research. But for me the worst thing to come out of all this is incredible self-doubt.
As many, if not most, of you know, it's hard to believe in something when everyone keeps telling you, you are imagining it. But you kind of reassure yourself that docs don't know it all, don't see you at your worst, or know all your symptoms. Nor do they care enough to see the big picture, or do anything about it even if they did. But I seem to have created a monster here. My doctor no longer believes ANYTHING I'm telling him, I suspect. I'm sitting there with a rash, thyroid results that are not really 'normal' (he himself classed them as subclinical when he first saw them; so did another doc in the practice who was actually first to see the results). I genuinely have itchy eyes and dry mouth and skin. I have TN. These things are real. Before I got B12, and then Vitamin D, I was so depressed I could barely function. I was depressed for years before I fell ill. I even had other illnesses (bad case of gallstones) before I fell ill. I've told him this, but it's like I'm saying, 'Oh, my big toe hurts, I must have Lupus'.
I genuinely no longer know if I AM neurotic, if I'm turning molehills into mountains, if I'm doing myself more harm than good, if I have ANY kind of problem at all or my TN is just the random hand of God (my doc's belief). I really don't know ANYTHING.
I have never felt so uncertain and undone in my whole life. I am literally sitting on the edge of giving it all up, purging the computer and just getting on as best I can; or writing to the doc and telling him how I see it, or just bypassing him altogether and taking my chances with another doc (I'm terrified of making things worse – at least this doc gives me tests, albeit with a lot of grief). But I've reached the stage of not wanting to go to see him. I was sitting in the waiting room beforehand, really nervous, and had to keep myself there by main force. I could feel a panic attack coming on. (That doesn't make my mental health sound too good, does it? Maybe he's right.)
When you've reached that stage, I'm not sure you have anything to lose any more.
Anyway, he's agreed to let me have ANA testing for lupus/Sjogren's, although not without telling me that healthy people get false positives all the time, and making it clear that only a really strong positive would be taken seriously by him – that's cheering; it's like an announcement of foregone failure. He's even let me have the copper test; although whether I'll actually get it or not, remains to be seen. He said, 'If we can do it', which wasn't reassuring.
What's really wrong here is I am running out of steam. I've been doing this for a year or more, and about three years before that, fighting the loss of my gallbladder. I can't face a future of nothing but more fighting, and the lack of belief in my credibility. It's completely undermining my self-confidence and I can feel myself wanting to back off and give up. And maybe that's a good thing. Maybe it's exactly what I need.
I really don't know any more if my doctor is actually telling it like it is, forcing me to see the hole I've got myself into, or if I am yet another woman battered into submission by men who just don't get it. I know no-one on a forum can really help me here, because as kind and concerned as you are, you don't know me; don't know the reality of my symptoms and how real or significant they truly are, but I feel so alone with this and literally have no-one to tell, so here I am. I have no idea what I am looking for either. Just a place to vent, to be able to say it out loud and see if I can hear my own madness, my self-justification. To listen to myself and see if I am actually in denial or deluded or whatever it is that would make someone do this if they didn't have to.
Well, I'm all written out now. Nothing else to say. I only hope I can learn something from that epic moan and didn't inflict it on you all for nothing! X