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GAHHHHH! - helen-louise
baratron
baratron
GAHHHHH!
Oh, I am so pissed off, I really am. Spoke to my doctor this evening, and it turns out that my vitamin D level is WAY WAY low. Ridiculously low. The bottom of the reference range for "normal" is 75 nmol/L, and mine is 14!

When I phoned up the surgery three weeks ago to ask about the results of my blood test, this was the sort of information they were supposed to give me. I had specifically asked to have my vitamin D level tested since I know it's one of the things that can cause unremitting fatigue, especially mental fatigue. And the fun thing? I take a multivitamin that supplies 100% of the RDA of vitamin D, and have it supplemented in my soy milk, and I drink a LOT of soy milk.

So I started looking this up, and found "Occasionally, drugs used to treat fits, particularly phenytoin (epanutin), can interfere with the liver's production of 25 hydroxy-vitamin D." I'm on an antiepileptic for bipolar. Checked that and found low vitamin D level is a known side-effect with carbamazepine - there are studies in actual journals on PubMed. GODS DAMN IT! What are the other symptoms that go along with low vitamin D level? Aches, pains and LEG CRAMPS!!! My legs are so stiff and sore that I can hardly walk. And according to some of the research I've seen and web sites I've read, the deficiency is so severe that over-the-counter supplements and/or more time in the sun isn't enough to help.

Well, that would be an explanation of why I'm so damned ill right now, wouldn't it? Covers all the symptoms. Hopefully, it means that I should be able to recover again fairly quickly.

But honestly, why didn't whichever doctor who looked at the results before flag up that vitamin D level as insanely low? Or why didn't the nurse I spoke to tell me about it? That's three whole weeks of treatment missed :/

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Current Mood: grumpy grumpy

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Comments
barakta From: barakta Date: 17th March 2011 23:42 (UTC) (Link)
OFFS. If you can find energy that's a worthy of a complaint to the practice manager. That's APPALLING!

Glad it's something you can get treatment for although I hear sometimes it is not as straight forward as it seems as even with treatment can take a while to kick in. Will you have to change your head meds for it?
baratron From: baratron Date: 18th March 2011 01:11 (UTC) (Link)
The thing is, I don't know where it went wrong. My doctor, who is retiring on 30th April (apparently he is almost 70!), said that the reference ranges for vitamin D are not well understood. So it could be that the other doctor who looked at it didn't notice a problem, or that it wasn't flagged up properly for the nurse to tell me about. Meh.

I refuse to change my mood stabilisers now that I've found something that works properly, though we'll have to see what effect a megadose supplement has.
barakta From: barakta Date: 18th March 2011 08:19 (UTC) (Link)
*nods* possible worth flagging up to them so they can run a check on all vitD results for people. 'Nice complaint' rather than 'stinky one'.

Good plan re mega supplement. Are you more at risk of lower levels cos of being half-Burmese? I know doctors are supposed to lookout for it in 'non whites' for that reason.

IIRC yo can get VitD via jab too, but dunno if that's problematic for you. Either way hope treatment works ASAP.
firecat From: firecat Date: 17th March 2011 23:53 (UTC) (Link)
Doctors know j*cksh*t about side effects. I always have to do that research myself. I hope you can get your levels up soon.
jenett From: jenett Date: 18th March 2011 01:13 (UTC) (Link)
So glad you kicked about this! (My endocrinologist said that the bare minimum is 30, though a lot of people he treats feel better somewhere between 50 and 80 - so you might start feeling better sooner than later.)

Even with getting more sun over the summer, my levels didn't change, either - my best guess is that I'm simply not storing it well.

I'm guessing you'll get something like what I do, which is a massive dose once or twice a week (I do 50,000 IU twice a week: most OTC pills are 1000 or 2000 IU, to compare, here.)

Very few side effects, but there's one I wanted to note: when I started taking it (though not any more), the day after I took it, I'd have a weird low-grade apathy. Not quite so much tired-exhausted as lethargic. (But the other days were much better than previously, so overall, it's a win.)

I found that taking it earlier in the day (afternoon, rather than bedtime) seems to help - and also just that the side effect went away. But when you're starting, you may want to time it for days where your next day doesn't have as many demands, if that's practical, just to see.
From: x_mass Date: 19th March 2011 01:39 (UTC) (Link)
i have no idea how IU you works what does it mean?
can you point me towards anywhere i can read about it
jenett From: jenett Date: 19th March 2011 04:16 (UTC) (Link)
IU stands for International Unit: it's used here (US) for standardised amounts of certain things, including some vitamins.

Wikipedia tells me (since I really need to aim at bed, and want to answer this now) that one IU of "is the biological equivalent of 0.025 μg cholecalciferol/ergocalciferol"

Here, the over the counter supplements you can get are usually 1000 or 2000 IU (sometimes you'll see 3000), and the recommended daily dose is around 4000 IU (including intake from food: it's regularly added as a supplement in milk and some other products.)

Wikipedia also tells me that the EU is more likely to label it in μg (micrograms), with a daily suggested intake of 5 micrograms a day (which comes out to about 200 IU) while Australia and New Zealand recommend somewhere between 5 and 15 micrograms based on age.

As knows, but I didn't mention directly, I got diagnosed with Vitamin D deficiency last year (at the same time I was diagnosed with hypothyroidism.) As I said above, I'm on massive prescription doses (50,000 IU twice a week, or about 1,250 micrograms).

Part of that is that there are two different variants of Vitamin D - D2 and D3. Most over the counter supplements are D3, but the megadoses are mostly D2. (I understand it has to do with how much you can compress into a pill shape and the chemistry, but I don't know about the details.) and there's some thoughts (but not a lot of science) that D2 is much less efficient as a supplement than D3 (so you need more of it to start with.)

Anyway, it's working for me: I feel a lot better, and my levels went from 18 when I was first tested to the upper 47 when I was tested in January.

It's done by a simple blood test. Levels do vary summer to winter for a lot of people (since if you're out in the sun at all in the summer, your body might be making some), so it's good to get it retested periodically. Symptoms of deficiency include exhaustion, lots of low-grade aches and pains that aren't really in the joints, aren't really in muscles, just hurt, and some cognitive function issues in some people.

It is possible to hit toxicity levels if you take too much, which is another reason for semi-regular testing. (Mine are every six months right now, for both thyroid and Vitamin D, unless I start feeling symptoms.)

There's a lot of mixed research out there: what I can say is that my endocrinologist found a lot of people who felt better with higher levels, and that I certainly am one of them. I do want to track down the cause of why the levels are low, but need to solve job hunting before I do that (since it'll probably take a while, and I may end up moving and therefore changing doctors - plus, this being the US, health coverage costs me money to use.)

http://en.wikipedia.org/wiki/International_Unit
http://en.wikipedia.org/wiki/Vitamin_D
suzanne From: suzanne Date: 18th March 2011 05:40 (UTC) (Link)
Ack! I'm glad you found out about it at least. Bad doctors! Bad nurses. Grr.
nitoda From: nitoda Date: 18th March 2011 22:26 (UTC) (Link)
Sorry it took so long for them to find out what was going on, but yay that it is something recognisable and treatable and I really hope treatment can make things better for you very soon.
From: x_mass Date: 19th March 2011 01:36 (UTC) (Link)
how easy is it to get the doctor to test my vitamin levels and what can they check?

baratron From: baratron Date: 19th March 2011 21:16 (UTC) (Link)
a) A simple blood test.
b) Mine checked vitamin B12, folate and vitamin D, but I don't know what else can be checked. You'd be best asking any doctor friends you happen to have :)
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