Last night I sat sobbing watching Diagnosis on Netflix (a programme where a doctor writes columns about undiagnosed patients with unusual symptoms and tries to crowdsource answers). It’s so wonderful to see these people getting answers that are helping them, and rather selfishly I’m sobbing because I don’t think I’m ever going to know what’s wrong with me. And it makes me wonder how many of us are in this situation?
It’s nothing so dramatic as these cases, no one would ever be writing an article about me, but it impacts my life, stops me working full time, affects my parenting. And above all I’m just really sick of feeling so awful and being so limited. It has been going on for over 10 years now.
I’ve posted about various aspects of this under various usernames over the years. I’ve had to become an armchair medical detective because god knows nobody else is going to care. I’ve narrowed it down (I believe) to a hormonal issue but despite searching I’m yet to find an endocrinologist who really specialises in female hormones - diabetes and thyroid, sure, but no one with expert knowledge of the intricacies of female hormones. Everyone says it sounds like my thyroid, and it does cover pretty much every symptom, but tests from the GP have always come out well within normal range. I’ve done some private tests which are closer to being out of normal range, but not enough. Even thyroid antibodies are in normal range.
I’ve had every basic blood test you can think of and nothing shows up. I’m told it’s ME or fibromyalgia but they don’t cover everything that’s going on. Main symptoms are fatigue, pain, peripheral neuropathy, heart palpitations, body temp issues, bad skin, hair loss, gastric issues, and more.
I recently had a period of two weeks where everything improved but new problems started (high pulse, high BP, like I was on a stimulant)... then it all came back. Then a smaller improvement, then back. Then a tiny improvement, then back. I tracked it all and realised it was related to my cycle. The first half of my cycle was when the improvement occurred each month for a few months right up until ovulation, and each month the improvement diminished until there was none. This has happened exactly like this before, when my hormone levels change due to coming off hormonal contraception, pregnancy, breastfeeding etc. But there’s been no recent changes.
I’m baffled, doctors just shrug at me. They think I have health anxiety I’m sure but I really don’t - I don’t worry that it’s something awful or whatever, I just want to feel well, have energy, not be sitting here watching CBeebies yet again because I can’t move.
I’m wondering how common this is - how many of us are dealing with this? As GP time is under more pressure and we see different doctors more often, etc etc, how many people have shitty quality of life for reasons unknown?
I don’t want to go on like this any more, especially when I know I can feel better, I just don’t know why.
Has anyone been through this and come out the other side with answers or an improvement? Is anyone where I am now? How many are struggling on in silence because no one is listening?
I feel like we need to take the idea of this programme and make something for people like me and others like me - no one’s going to be falling over themselves to figure out how to make something like this go away but there could be so many other people with the same issue, I can’t be the only one.