Vitamin D3 deficiency and HMS

[jax]

Hey Jaws,

The Glucosamine (Joint care) packs also contain Vitamin C and D as well as
omega 3. However, they are quite pricey

If you find remembering hard, perhaps you could place the box somewhere you
always go each day. I put mine and my son's omega tabs next to the kettle
and stick notes up to remind myself. (on the cupboard next to the kettle!)
Also if you have a giving partner perhaps they could also be "trained" to stick the notes up to help you
remember.

[Jaws]

Hi Everyone

Quick update:

Went for DEXA scan yesterday - quick and painless. Incidentally, I asked about the cost and it is £72 per scan apparently (but as I say, if you have a heel scan done and need a referral, you should get one on the NHS - the machine operator said this was what they actually want people to do).

Results did not seem to be as bad as the initial heel scan has suggested, and the report is going to my rheumy. I got the impression I won't be needing treatment, but will probably be asked back for yearly scans, and will have to be careful from menopause onwards.

This experience has taught me:

1. That looking at their recommended diet sheets, mine is perfect for bones and I would not change a thing!
2. Doing no exercise and having CFS & EDS is a very risky mix - I need to make some changes, even if they are only the smallest ones. I am planning to try out a 'vibrating platform' at the local leisure centre soon - has anyone tried these? Walking does nothing to improve bone density, according to the osteoporosis event I went to. Hills and stairs are apparently good (just what I find difficult!), as is opening up tight thoracic spines to reduce stress on the lumbar spine (and risk of fracture in lumbar spine).
3. To be 'bone alert' from now on, and to get scans now and again to keep an eye on the situation

I hope this information is helpful!

Best wishes.

To Jax - thanks for your post - I take 'VegEPA' for my CFS, which I am going to make a real effort to take more regularly after this experience - it should not only help the CFS, but the joints and bones too (it's fish oil extract and evening primrose). Might go back to taking a multi vitamin inc. Calcium and Vit D daily too!

[Hayley]

I had my Osteopenia (just borderline Osteoporosis) diagnosed by DEXA scan and was offered Bisphosphonate treatment by my GP but have refused it for several reasons. I'm still taking Calcium and Vitamin D supplements. I use Tesco's own which are about 94p for a month's supply but I think I got them on 3 for 2 last time I bought them! I also try and spend time in the sunshine when I can (for Vitamin D) as I can do very little exercise!

Hayley

[rubygloom]

i had a letter from my whymey today i am low on vit d which is a suprise as i take cod liver and a multi vit which both say that have 100% of vit d in them so i take 200% per day of it already and i am low plus i east a good diet and drink lots of milk
i had a dexa about a week ago and the machine said i was ok but i am yet to get the full report but if the machine said i am ok i am not expecting any thing terrible from it
but the low vit d is confusing also maybe a warning to others to get checked just because you eat ok and take suplements may not be enough...

[jax]

That's great news Libby. I'm sure there's a connection with the osteoporosis
too. I'm so glad the vitamin D is helping.

J

[libby]

oh my, i haven't been here in such a long time. no internet access. it's weird to read what i wrote two years ago.

i've learned a few more things in the past two years. i had to up my vitamin D dosage quite a few times before it took effect. i had an unbelievably low vitamin D level to begin with and it took about till now to stabilise but now it's normal, taking daily vitamin D and calcium supplements of course, but i do take far more vitamin D than was suggested two years ago before Canada and other countries started updating (and raising) their recommended daily intake of vitamin D. it seems vitamin D deficiency may be far more common than doctors used to think. we don't all spend enough time in the sun anymore. (if i'm correct it said 5 or 10 minutes a day in the sun are all a healthy person needs to absorb and metabolise vitamin D. then again, my endocrinologist explained to me that for someone with a serious vitamin D deficiency, getting enough from the sun without taking supplements is hopeless. he said i'd get skin cancer before i got a normal vitamin D level.) and my mother, from whom i got HMS, has been prescribed vitamin D and calcium supplements too.

it also seems there are two types, D2 and D3. my endocrinologist said D2 is less commonly used (probably because it's more expensive or some other prosaic reason, that's my romantic guess) but it seems to be absorbed better.

another thing i found out was that meds like omeprazole (used to treat heartburn and the like) may affect bone health, because they affect gastric acidity and so one's calcium absorption may be impaired. from what i've been told and read, H2-receptor antagonists (like famotidie) seem to be less likely to be harmful than proton pump inhibitors (like omeprazole). i try to avoid PPI's altogether if i can, unless the heartburn is really bad and makes me lose my voice (which happens about once a year), otherwise i try to make do with famotidine and the like. but i'm not a doctor. this is only what seems to work for me and my lopsidedly illogical body.

[Hayley]

Hi Libby

That's interesting about the Omeprazole, I've been taking that for a long time! I have a Hiatus Hernia and am also taking NSAIDs so I do need them

Hope things are good for you over there in my favourite country lol

Hayley

[Baiba]

HI
My D vitamin tests turned out on with very low 25 OH D levels. 25 OH D is what usually is measured to evaluate the level of D in our bodies. My doctor told that vitamin D intakes would not help, that I need colechalciferol, which is essential to produce 25 OH D in livers. Next, 25 OH D is transported to kidneys where it is transformed to active D vit.
I wanted to tell you that if your blood test analysis have showed low vit D level, intakes of vitamin D may not help. Check it with your doctor! And another test after starting intakes (1-3 months later) is required.
I have 3x lower level as needed and just now started intakes. I have read that tablets and powder are not so good and effective, so I got it in liquid form. (my parents sent it from Latvia, because here are tablets/powder awaylable only).

[barkingmad]

Just thought I would add here. A few weeks ago I had a number of calls to the helpline asking if there was an association between HMS and low vitamin D, which interested me as mine is low too! So I thought I would ask the Medical Advisors, apparently they discovered that there is a link between low vitamin D and chronic pain, BUT only in woman! I dont know why it should be just woman but that is what some research suggests.

just thought you might be interested!

[Baiba]

How long did you take vitamin D?
Did it help you?

[Finarda]

I'm including a quote which shows that Statistics Canada found that 60-70% of Canadians had inadequate levels of Vit D. Now, we have a longer, colder winter than you do in the UK but I'd be surprised if the results weren't somewhat similar in the UK. Therefore you could conclude that it's relatively common to be low in Vit D so just because a lot of us (me included!) are low in Vit D it doesn't necessarily mean that it's linked to HMS?HEDS.

Fiona

"Gerry Schwalfenberg, an assistant clinical professor in the department of family medicine at the University of Alberta, said testing showing that “60 to 70 per cent [of Canadians] have inadequate levels [is] not good,” given that vitamin D insufficiency is being linked to so many chronic diseases "

quoted from http://www.theglobeandmail.com/life/hea ... le1510334/

[Baiba]

Do you think - modnote: dosage redacted is ok and could not be related to muscles/joints, if it should be modnote: dosage redacted
Would be interesting to hear how high is modnote: dosage redacted for others in this forum.

modnote: dosage redacted, please see forum rules. We do not discuss dosages on the forums.

[Stone]

I have low Vit D and chronic pain. Maybe when we're in pain we all stay indoors?

Stone

[Spireite]

How do you know your vitamin D levels are low? How would you get it checked and why?

[barkingmad]

My GP tested my blood for various things and it came back low Vitamin D. I dont know why she tested it I think it comes with full blood counts etc.