A couple of weeks ago, I went to see a consultant rheumatologist. It’s been about 15 months of various people saying ‘I don’t know what to do, I’ll refer you to…’ about the fact that I keep getting stress fractures but finally I was vaguely in the right place. I’m still not 100% sure what they do, but the gist is rheumatologists deal with bones, connective tissues, muscles etc. It’s less about the actual physical bones, like you’d see an orthopaedic doctor for, more to do with the way the whole skeletal/muscular system holding us together works.
I went to the appointment knowing that:
– I keep getting stress fractures which are slow to heal because my bone density is not very good
– the majority of my bones are classed as osteopenia and a few of them are osteoporosis. Osteopenia is like pre osteoporosis.
– having this diagnosis isn’t a great one at my age
– steroids make your bones weaker
– you can’t replenish bone density much beyond the age of 30 (in general, for everyone), you can only really maintain what you’ve got. So diet and supplements only do so much
– it’s unusual for a person my age to have the bone density scan results I have
– there are bone treatments available but no one is very keen on putting me on any.
The main reason for seeing this consultant was because while I’ve only stress fractured my hands and feet so far *touch wood*, I’ve done it by doing really simple things like standing up. So if I can stress fracture my foot that easily, who’s to say I won’t stress fracture my spine or hip by getting out of bed? Which would be very bad. And as part of the slow healing process, I have to take extra steroids, which will weaken my bones further. So the idea was, see how we can keep the bone density I’ve currently got and look at more specialised bone treatments.
But, like with everything, it’s not that simple. I’d already worked out from my reading that the reason why everyone was very reluctant to prescribe some pretty aggressive treatments is because they’re largely untested in people my age. Most of them are only given to elderly people who die anyway before the long term implications on things like heart and liver function and fertility can be seen. And, even if they do live long enough, old people get those problems anyway. So how do you tell if it’s from the bone treatment or just because everything else is failing? Everyone has to die of something. In other words, aggressive bone treatments only have to work for those taking them for a short period of time, in the majority of cases. The other option is things like joint replacements, but routine surgery for me is still risky so we have to try to avoid it.
The consultant confirmed this but he also added something I hadn’t come across in my research. I fit the criteria for the treatment but I’m high risk because of my age. The after affects of the treatment last for 7 years after you stop taking it. So whatever we decided would impact on my life for at least the next 7 years. Imagine having to think about what you want to do for the next 7 years. What if it makes my organs fail? What if I’m allergic to it and end up with constant near anaphylaxis for 7 years? He actually laughed and rubbed his face and said he doesn’t know what to do, that I’m rare for even the people he sees and he’s going to have to refer me to a ‘super rheumatologist’ in the region and maybe a national osteoporosis clinic. Because if we got it wrong ‘we’d all be in a lot of trouble’ (were his exact words).
Soooo, not only do I already have various uncommon illnesses, but the treatment for those which keeps me alive is giving me rare complications that no one really knows what to do with. Fun times!
He said he’d order some bloods to cover all bases, to make sure there aren’t any other reasons behind my low bone density. This is where it got interesting. I looked at the ones he’d ordered, and they were mostly endocrine work ups, which I assumed the various endos I’ve had would have checked out before. Wrong. Because I’d had a bit of a roundabout way of getting diagnosed, a lot of the diagnosis was based on assumption of what came before and trying to save the NHS money by not ordering complex tests, ironically costing it more in the long run. It’s only been recently where I’ve insisted they actually do the tests to confirm these diagnoses properly because I’ve wanted to be informed about my treatment and life options that we’ve started getting a bigger picture. And, to be blunt, because I know how it works a lot better than most of my doctors.
One of the tests the rheumatologist ordered was parathyroid hormone, which came back as ‘slightly elevated’. I didn’t think much of it because it doesn’t necessarily mean an awful lot if it’s technically still in range, but it’s not very often that I actually get test results coming back abnormal so I did some googling. Parathyroid hormone controls how much calcium is kept in your bones and how much is transferred into your blood. It forms part of a feedback loop with calcium and phosphate (among other things). Too little calcium in your bones makes your bones weak. A couple of months ago, I was in a&e in Cumbria and asked them to do an endocrine work up (for ‘completion’, as doctors say to me) and the doctor there said my phosphate was undetectable. I didn’t really think much of that either, except for increasing phosphate in my diet, until I read about the interplay with parathyroid function. A bit more time on google says that low phosphate and high parathyroid hormone can be a sign of Hyperparathyroidism, which, if you look at the symptoms, I have a lot of. The symptoms are a bit vague though, and nearly all of them can be attributed to another one of my many illnesses. However, the one thing that has been stumping my doctors regarding bone density is that the scan I had when I first started steroids 5 years ago and the one I had last year are virtually identical. Which means that unless taking steroids depleted my bone density in the first six months and there’s been no decline since, it’s possible that I already had osteoporosis and osteopenia bones before.
Of course, it could be one big coincidence and I don’t have a parathyroid hormone problem. But there are still a lot of coincidences for me to not get it looked into. And, in a very backwards way, it would almost be better for me to have a PTH problem which is treatable, as opposed to my bone problems being down to my steroids, which I have no choice about and would therefore just get progressively worse.
Unfortunately, I’m currently joining the dots between random doctors in 3 different counties having mentioned to me in passing that the separate components of this feedback loop are a bit skewed. Good job I was paying attention! They don’t know what tests each other has done and they can’t see the results of any tests which have been done. So we need a full set of results in one place to be able to see if it is just a coincidence or if there’s something in it. I’ve written to the people involved, now just waiting for the painfully slow admin to be done!