A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 9 January 2013

Ninety nine per cent

Ninety nine per cent is how certain the rheumatologist said he was that I have fibromyalgia (see my post 'Something else').  However, he had x-rays done and bloods taken just to check that one per cent of possibility that it could be something else causing my pain.  There are many things that can cause some symptoms similar to Fibromyalgia Syndrome (FMS) that can be picked up in blood tests, including hypothyroidism and vitamin D deficiency.  These are two of the things I was tested for.

The results for hypothyroidism came through clear, which I was expecting as I've been tested for this a few times, most recently before Carpal Tunnel Syndrome surgery.  What I wasn't expecting was for the vitamin D level result to show that I am severely deficient.  My GP told me that vitamin D levels are supposed to be between 75 - 100 nmol/l, but my result came back at 16 nmol/l.  With this severely deficient level and some changes seen on my x-rays I have been diagnosed with osteomalacia, which is the adult equivalent of rickets.

Rickets, and the tell-tale bow-legged appearance of those with it, occurs in children before the bones' growth plates have sealed, but once these have sealed and growth has stopped, the diagnosis is osteomalacia, often (and in my case) with multiple fractures and pseudofractures throughout the body.  This certainly explains some of my pain and tenderness.  In fact, vitamin D deficiency may well explain the terrible cramping I've had in my hands and feet, the muscle weakness, the lethargy, fatigue, and exhaustion I've had in addition to that caused by the POTS I already have.

As severe vitamin D deficiency can cause problems with bone density, and I am already at risk of developing osteoporosis because of the long-term high-dose steroids I take, I have been referred to have a DEXA scan.  The appointment has come through for 21st January.  I've had them before, but my last one was two or three years ago, so it's definitely time it was done again.

In addition to all this, I had another letter from the rheumatologist saying that the x-rays of my hands show the possibility of 'an arthritis'.  He hasn't specified what kind of arthritis, just saying that I have some 'bony cysts' and that 'closer studies are needed.'  I have to have a CT scan of my hands next Monday (14th January), and then I suppose I wait to hear of the results from that before any firm diagnosis is given.

I guess that any treatment for arthritis might depend on the type of arthritis it is, if it is.  The treatment for osteomalacia and severe vitamin D deficiency is, not surprisingly, high doses of vitamin D.  The prognosis for osteomalacia is pretty good if the right treatment is given, and the fractures throughout my body should heal in three to six months of high dose vitamin D treatment.

However, there is a problem (isn't there always?).  It is proving incredibly difficult - actually, impossible at the moment - to find a preparation of high dose vitamin D supplement that doesn't contain something else to which I am allergic.  My GP has written to my immunologist for some advice, although this perplexes me somewhat as I'm not sure that he'll know anything more about vitamin D preparations than the GP.  I'd have thought that pharmacists would be the folk to talk to, and that, if necessary, pharmacists would be able to make a preparation of vitamin D especially tailored to my needs.  The thing is, that while the GP and I wait for a reply from the immunologist, who may not have any answers anyway, I'm not getting any treatment, and I presume my deficiency is getting worse.  Mind you, I don't know how long it takes for these levels to decrease.

The other thing I'm not sure about is whether I'll have to undergo any investigations to discover why my vitamin D levels are so low.  I know that anywhere north of Birmingham doesn't have enough UVB sunlight between October - April for anyone to produce adequate vitamin D, but most people store up enough through the summer months to see them through the winter.  Also, my blood tests were done towards the end of November so I still had most of the winter to get through, so what are my levels going to be like by April?

Of course, all of this leaves me not knowing if I do actually have fibromyalgia as well, and my GP says we won't know for sure until I've been successfully treated for the osteomalacia/vitamin deficiency for six months.  In the meantime I'm still taking the powerful meds for neuropathic pain whilst not being sure that I need to.  I'd rather not take them if I don't need them, not least because they make me so dopey that if I need to get up in the morning then I can't take the full evening dose.  I'm due to go back to my GP for a review of these meds, with a view to raising them further, but I think I'm going to suggest that I don't take them until it's proved that I need them.  After all, they haven't actually helped ease my pain anyway.  The problem, though, is managing to wake myself up in time to make that 8.30 am phone call needed to get an appointment with the GP.

Something I will probably never know the answer to is whether the rheumatologist in part made his 99% certain diagnosis of FMS because of my scars from self harm, the 'newest' of which is ten years old.  It would seem that however many years pass from those terrible years of self-hatred, self-destruction, depression, and suicidality, I will most likely always be judged on them, and they will always influence doctors who treat me for whatever reason.  I wonder how surprised the rheumatologist is that his 99% certainty has proved to be wrong.


vivinfrance said...

Can you take cod liver oil capsules? Also, I have high dose calcium+vitamin D for osteoporis and vit D deficiency, but probably the excipient would affect your allergy.

Zim said...

Oh, my dear, I also have sometimes little problems with joints. I take sometimes herbs, like boswellia. I heard from one doctor that it is fact with vitamin D3 - we live in countries, which don't have so many sun, even in summer. Greetings to You :)

Anonymous said...

Presumably you are aware of the clear link between severe asthma and vitamin D deficiency? I know it is something they're looking into at Heartlands, and also other hospitals across the world. I also had startling low levels, but now take Calcichew caplets daily, which have vitamin d as well as calcium, plus a prescribed multivitamin.

BeckyG said...

Hello all. Sorry it's taken me a while to get back to your comments.

Viv, I'm not sure about the cod liver oil capsules. It will depend what the other ingredients are. I might look in to it though.

Zim, sorry to hear that you have problems with your joints too. I haven't heard of boswellia, but perhaps it has another name in this country.

Anon, I have read some things about a link between vitamin D deficiency and severe asthma, although what I've read has been connected to severe asthma in children. I don't know if this is because it has only been researched in relation to childhood asthma; if it's the way it's been reported; or if it is only an issue in children, although I can't imagine how that would work. Re calcichew, I know that I can't take that because of some of the exipients in it. I'm now waiting for my GP surgery's pharmacist to phone me some time.