I apologise for raising yet another thread on this topic, but don’t know where to turn.
I saw a dietician who recommended I start Vitamin D combined with a Calcium supplement.
I tried (again!) to get my GP to test my Vit D levels (with a letter of support from the dietician). My GP refuses as he says there is no guideline as to what the level should be.
I know that too high a level of Vit D is bad for you so am reluctant to buy over the counter.
Any advice please.
Your GP is wrong: there is an NHS guidance regarding vitamin D levels. It is out of date, and was developed to prevent rickets more than anything else, but it’s there nonetheless! Given the tendency for people with MS to have a vitamin D deficiency, it is only sensible for him to get your level tested. How would he feel if it’s discovered that you have been repeatedly refused because there is no guidance for MS when you are actually deficient?! If I were you, I would pull together some info from the Internet about MS and vitamin D deficiency and how vitamin D deficiency resembles some MS symptoms and simply ask him how he can know that you are vitamin D replete without testing? If he refuses again, I would speak to the Practice Manager. If they are unhelpful, I would get a new GP and consider making a formal complaint. That might seem like overkill, but we need supportive GPs, not one who uses very weak argument in the face of growing and convincing evidence to avoid the cost of a blood test! As far as dosing goes, my neuro recently recommended that I take 5,000iu a day (and he told my GP that too). I had problems with my levels getting too high before this, but I was taking 10,000iu alternately with 5,000iu as well as fish oils which are high in vit D. I am also on Rebif which may increase levels according to a study. So, overall, I was taking far too much. Avoid that and I would imagine that you would be fine! Good luck with the GP! Karen x
Do you happen to have blood tests for anything else?
If you do, you could try being cheeky, and do what I did, and next time you’re in there ask the nurse (not the GP!) whether she’ll do a vitamin D one for you too.
I explained the background; that I have MS, and that many people with MS have low vitamin D as well, and would it be possible to check it, while I was there.
She said: “I don’t see why not!”, and did it on the spot!
Of course, the results (which were fine) did get passed to my GP, so there was no chance she wouldn’t find out what I did, but next time I was in there, I just said: “Hope you didn’t mind, it was a spur-of-the-moment thing; I asked the nurse, and she said yes!”
So you never know: don’t ask, don’t get. Sometimes ask, but still don’t get, but nothing lost by trying.
Tina
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Hiya
I done exactly the same as Tina. Got the nurse to ask for a sample to be tested for my Vitamin D level. A couple of days later my GP range and said I’m giving you a script for 3 months of VD3 at 10,000 iu daily and then another level test. I’m half way through my 3 month dose.
Marty
Hello
Tina & Marty
I did ask my nurse to add a Vit D test to my regular Rebif ones. She agreed - GP stopped it!
Karen - yes, will see what I can find on the internet and have another go.
My GP has a great understanding of MS normally - spotted a relapse last month, which I had put down to my neuro diagnosing me as Secondary now. I am reluctant to fall out with him over this.
Hmmm. My GP didn’t get a chance to stop the blood test, because by the time she knew about it, it was already done!
I didn’t arrange with the nurse in advance to add it to my schedule (and risk it being vetoed). Just next time I was there anyway, I asked: “Could you do one please?”. As she was taking blood regardless, and it was negligible extra work (though I dunno about cost to the NHS) she didn’t hesitate.
It came back well above the (outdated) NHS minimum, but not so high it was scary. But that was WITH already taking supplements - though not the huge ones favoured by some here.
If I hadn’t bothered to supplement at all, I suspect I would have fallen short of even the paltry NHS minimum. As a result, I’ve continued with modest supplements - neither raised nor lowered them - as I seemed to have things about right.
I agree, though. If you have a generally good doctor you get on with, you don’t want to fall out over one strange blind spot they seem to have. Mine didn’t seem to mind I circumvented her about the blood test. If I’d gone through the proper channels, she’d probably have authorised it anyway, but I’d saved both myself and her the hassle of an appointment, just for that.
Tina
x